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People with CFS/ PVFS/ ME - how did you get diagnosed?

(994 Posts)
Grockle Wed 11-Jul-12 22:27:59

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

ekidna Wed 11-Jul-12 22:35:13

I feel for you I really do. i have a relative who eventually got diagnosed with the assistance of a family medic advocating for him.

Could you give these guys a ring-I know my relative went there- and ask for advice on how to get diagnosed.

don't give up, please. I know people love to tell their stories and they are not often helpful. but my relative did recover fully after being flat out for x years.

Grockle Thu 12-Jul-12 15:32:14

Thank you smile The link is useful and has links to other sites which akso look helpful.

I'm fed up of being exhausted and in pain & being made to feel like a hypochondriac. I have a lovely DP & supportive family but I feel very alone sad

RockinD Thu 12-Jul-12 19:13:18

I was diagnosed with CFS three times (two consultants and a GP) before I found a consultant who treated my ferritin deficiency, my Vitamin D deficiency and my underactive (possibly hypopituitary) thyroid.

CFS is a dustbin diagnosis - the NHS's own information leaflet says there is no diagnostic test, an infinite variety of symptoms and no treatment. There will be something underlying that it causing your symptoms, probably on your thyroid/adrenal axis. They are supposed to rule everything like that out before diagnosing you.

Have you had any blood tests done? Do you have an auto immune condition?


mercibucket Thu 12-Jul-12 19:23:00

Hmmm well dsis got a diagnosis v easily with no blood tests at all. Or - in other words - the GP couldn't be arsed finding out what was wrong! Turns out to be a wide range of things we are still getting to the bottom of but also vit d deficiency and iron/b12 deficiency. New GP is sending her for a range of further tests
I suppose what I'm saying is - don't stop trying to get to the bottom of it! CFS can be a dumping ground. Was your tsh (thyroid) well in range btw ie under 2? And did you check all the other test results yourself eg ferritin should be well into 50's or more, b12 over 500. Often these are called 'normal' at a lot lower levels. I also like Dr Myhills website for info on cfs and diet advice etc.

mercibucket Thu 12-Jul-12 19:23:00

Hmmm well dsis got a diagnosis v easily with no blood tests at all. Or - in other words - the GP couldn't be arsed finding out what was wrong! Turns out to be a wide range of things we are still getting to the bottom of but also vit d deficiency and iron/b12 deficiency. New GP is sending her for a range of further tests
I suppose what I'm saying is - don't stop trying to get to the bottom of it! CFS can be a dumping ground. Was your tsh (thyroid) well in range btw ie under 2? And did you check all the other test results yourself eg ferritin should be well into 50's or more, b12 over 500. Often these are called 'normal' at a lot lower levels. I also like Dr Myhills website for info on cfs and diet advice etc.

ekidna Thu 12-Jul-12 19:25:31

You are NOT a hypochondriac. People who think this or make you feel it are twats. Fantastic you have a supportive family.
Surround yourself and reach out (whenever you are able) to positive, warm, empathetic people. You only need a handful.
As I understand (disclaimer)----There's a lot more research now into ME/CFS, and although there are no conclusive, conclusive agreed diagnostic tests they have found evidence of patterns in brain scans etc.

Grockle Thu 12-Jul-12 20:52:23

I've had loads of blood tests done. The inflammatory bit comes back a little high sometimes but not consistently & everything else is fine. Thyroid etc all ok.

I think I now just want a label to help me cope. I know I am not right but at the moment, all I can say is I'm tired all the time. Well, most of us are, aren't we? It sounds a bit rubbish. If I had a name for it, other people (& work) might be more understanding or tolerant and I might be able to work out what to do to help. WIll look at website suggested, thank ou.

RockinD Fri 13-Jul-12 12:12:18

Nothing wrong with having a label, but you owe it to yourself to have the right label.

If the doc says all your blood tests are 'fine' it would be useful exercise to get a print out of the results and do some research yourself. You may be surprised.

As merci says, your results need to be at or above certain levels within the magic reference range. Being in range is not enough - they need to be optimal. You will note that her sister and I were both diagnosed with CFS when there were other, fixable things wrong.

Please don't be too hasty - if there is something underlying and it is not treated you will get worse, not better and certainly where I live there are no support services for anyone with a CFS diagnosis - you're on your own mate!


CFSKate Sat 14-Jul-12 17:40:15 Invest in ME - good starting place to get ME research information - yearly conference presents latest research. They also have a facebook page.

Grockle Mon 16-Jul-12 07:45:10

Thank you - that link looks helpful. I'm going back to work today but am ready to fall asleep already sad <pathetic>

aliasjoey Mon 16-Jul-12 18:42:57

grockle I'm in a similar situation to you. My blood tests (including thyroid, ferritin, B12 etc) have come back normal. Still waiting for Vitamin D results, but fatigue as a main symptom isn't normally associated with Vitamin D deficiency.

CFS can't really be diagnosed because there isn't a test for it; all the docs can do is rule out anything else it could be. My GP didn't actually mention CFS but I could tell thats what he was thinking (and he reassured me it wasn't all in my head!) talked about mitochondrial cellls - I didn't understand a word!

What's confused me, is I seem to have a 'mild' case (I didn't know there were different levels of severity) so I hope it doesn't get worse. Also I don't know if I should tell my work - it doesn't really affect my job, except sometimes I feel very forgetful and lack concentration. Will they just see that as an excuse? Or should I keep quiet and book a days annual leave every few weeks to recharge the batteries?

Sorry, I'm no help - I've asked more questions than answered them! But at least you know, you're not alone...

It took four years for my diagnosis of CFS. Until I has a GP who understood the condition and ordered the right tests. I have lived with it for 12 years and counting.

I was query CFS last year but it turned out to be post viral fatigue - default diagnosis as I got better. The tiredness is just overwhelming though, at my worst I would walk DD to school (normally five minutes) and then have to come home and sleep for an hour. But I got better.

What I did find useful was downloading some of the guides on the ME Society website and the other charity, can't remember the name. There are three evidenced treatments - pacing, cognitive behavioural therapy and graduated exercise therapy. Pacing made sense to me and I've become much better at not pushing myself so hard.

Get your GP to refer you to a hospital-based CFS service. There's not many in the country so you may have to travel. To be referred you have to have lots of tests to rule out other things so can be a good way to find out if it's something else.

CFSKate Tue 17-Jul-12 09:32:31

I think if you have mitochondria problems then you have to pace - there's lots of links to mitochondria information on this thread

Grockle Tue 17-Jul-12 19:09:22

Thank you all. I've gone back to work this week after 4 weeks off but I'm struggling. Tomorrow is my last day & everyone keeps saying 'only 1 more day' but that makes me want to cry... it's yet another day for me to struggle through. My useless GP diagnosed depression, which I now have too but I've had the physical symptoms for 2 years and have constantly been dismissed. I just feel at the end of my tether. I don't want to live like this.

I did mention it to work today because the HR person commented how bad I look hmm

I will read the other thread.

Thank you so much for your support. I feel like I'm whining & moaning - everyone thinks I'm ok because, physically I am and there's no way of describing just how terribly tired I am & how much I'm struggling.

ekidna Wed 18-Jul-12 16:58:15

Bless you.
When you have recovered-ish from last day maybe think about getting a very gentle strategy for diagnosis together. e.g. this might start with changing doctors. Try hard not to beat yourself up about moaning. It is okay to express how you are feeling, and it takes too much energy away from your recovery to beat yourself up. xx

Grockle Wed 18-Jul-12 20:01:46

Thank you. I will change GP, definitely.

I'm so shattered today, my legs feel like jelly. I had to dig the crutches out of the shed so I could shuffle over to take DS to swimming. I went at a snail's pace which didn't go down well. I was terrified that my legs were going to give way (I collapsed about 6 weeks ago). I feel so ridiculous because there isn't actually anything wrong hmm

Grockle Thu 19-Jul-12 11:39:49

Oh, my surgery said you can't change GP within the surgery. I can either request to see someone else or go to a different surgery. Not sure what to do. I just want someone to listen and help me.

aliasjoey Thu 19-Jul-12 11:42:50

that's a bit weird..?! can you you just request an appointment with the GP at the surgery?

I have been prescribed Mitrazopole which is an anti-depressant, but it seems to be helping a bit (especially with sleep)

I have also booked a proper holiday for the first time in ages!

mercibucket Thu 19-Jul-12 13:16:02

Did you get printouts of your test results too?
Sorry things are not going well atm. Did the surgery just mean you are registered with a particular GP but can request to see any of them?

Doomfinger Thu 19-Jul-12 13:29:39

I've been vaguely diagnosed with fibromyalgia (long term PGP, bruises on my spine that haven't healed after 7 years and the big one was the week I couldn't get out of bed for breastbone pain) I was fortunate that being under rheumatology anyway in pregnancy I saw the right people the week I was bad.

This year my 6yo has been diagnosed with CFS. She had gastro, never really got better, treated two consecutive weeks for a chest infection then ended up in A&E with pneumonia on the third week. Fortunately she's already under a paediatrian (and the best) so he called her in ASAP and diagnosed her. I'm hoping she recovers from it and hasn't got FMS.

Grockle Thu 19-Jul-12 19:27:35

I didn't get printouts of test results because I only saw the receptionist - I popped in on my way to physio. But yes, I can see a different GP but have to remain registered with the one I have. I don't understand why or even what it means.

I'm so sorry your DD is so poorly Doomfinger. At least it's me and not DS.

I'm currently on amitriptyline with diazepam & codeine for my back but it's more painful than ever. I've figured out that if I use 1 crutch, it gives me stability & security and is easier than using 2. I've just ordered a walking stick sad and tried out a wheelchair today. I am only 34 and there is, apparently, nothing wrong with me, Yet I am scared of going out because it makes me feel so ill.

aliasjoey Thu 19-Jul-12 20:47:40


There are five GPs at my practice, and we can make an appointment with any of them (or indeed a locum if one is away) Sometimes a GP will specialise in a particular area eg. diabetes, so it makes sense to see them. Otherwise you can usually see any of them, especially if you need an appointment urgently.

In fact recently I tried to make an appointment with 'my' registered GP and was told I'd have to wait 2 weeks! I got an appt the same day with another one. So, try one of the others in your practice (maybe a younger, more up-to-date one?) and see if they are more helpful.

I'm starting to find out that the anti-depressant that has been prescribed has a very common side-effect - increased hunger. sad I feel constantly hungry.

mercibucket Thu 19-Jul-12 20:54:11

Very sorry your dd is also ill, doomfinger

Wrt test results, the receptionists always give me mine either by phone or as printouts. Some practices say the GP has to agree first. In fact, you are entitled to all your records and noone can refuse as it is your data. They can ask for a small charge up to 10 pounds but I'd be scathing of any practice that asked! Anyway, that's just fyi in case you have prob getting them

Grockle Fri 20-Jul-12 13:36:56

Aliasjoey, I think that's how mine operate too, so I will chose to see the lovely ones rather than mine. I've made an appointment to see him in a couple of weeks but might try an emergency one next week. I just want to sort this out. I managed 2 hours work this morning and am dizzy, shakey, achey, sweaty & shivery. I sound lovely, don't I?

Thanks for the info merci - I'll definitely get a printout. Might wait tll I've have next round of tests done.

I find it very hard to believe that I can feel so unwell and there be nothing wrong.

BeatriceBean Fri 20-Jul-12 13:46:49

In Dorset you can get a referal to the ME clinic in wareham for a proper diagnosis from a consultant. They also do an ot led series of sessions to support you in coping with the diagnosis. At it's worst it is such a debilitating condition. Many people lose jobs and aren't able to cope when its 'proper' me. It is hideous.

I really feel for you grockle having been there myself until I was referred. I don't know if other counties all have an ME clinic but it's worth finding out. I needed the formal diagnosis when it came to negotiating with work etc.

Grockle Fri 20-Jul-12 14:47:35

BeatriceBean, how did you get diagnosed? My GP insists this is depression - I argue that I wasn't depressed until I had suffered with this for 2 years! I KNOW this isn't depression. I feel ok with the rest of my life, I'm just so exhausted and in so much pain so often. They've done test after test but if they come back normal, they think that's that. I'm so tired of fighting for help. I don't care what is wrong with me, I just want to feel better. I miss being bouncy and excited about things. At the moment, I'm just too tired to even want to do anything. We're going to Camp Bestival next week & I'm now dreading it sad

BeatriceBean Fri 20-Jul-12 20:21:12

My doctor referred me to the Wareham Clinic. You have to have had 6 months of symptons and had blood tests etc for the doctor to refer you. My first doctor didn't refer me (but he was later struck off so he was generally rubbish) but the second was much better.

I went to a festival when I was ill, but at a stage where I was supposed to lie down to rest every couple of hours. I used to go and lie down for 30mins but it was awkward explaining to people walking past that I was actually ok.. It was actually hideous. Good luck...

Don't be fooled into keep saying that 'nothing's wrong' with you just because they haven't given you a diagnosis. ME/CFS is a very real and debilitating illness, my Mum became very ill 12 years ago, it took them a long time (approx 2 years) and lots (and I mean LOTS) of tests to diagnose it as ME as unfortunately the only way to really diagnose it is by a process of elimination. I really hope you get the support you need soon.

BeatriceBean Fri 20-Jul-12 20:38:01

As for actual diagnosis - the doctors report got me to the clinic, at the clinic I had about a 30min-hour appointment with the consultant who asked a lot of questions, and some symptons I didn't realise I had were ME related (muddling words up more than usual). He was able to do a formal diagnosis which I then used for my work tribunal and then for incapacity.

It was such a horrid time. I had a friend with a potentially Serious Illness who got tons of support from friends, nurses etc, took a break from work, luckily was fine and is now back at work again... Of course I wouldn't want her illness but people really don't realise how debilitating extreme fatigue/ confusion/etc is longterm and how it affects ability to function.

If you're in Dorset PM me. (Or if not do anyway if I can be of any help). The other group I found very helpful were the Dorset ME support group. Again specific to Dorset...

Grockle Fri 20-Jul-12 23:01:00

Thank you all - it's nice to have some people who have some idea just how unwell I feel. I'm sure everyone else thinks I'ma making a fuss about nothing. When people were telling me 'only 3 days of work then the summer holidays', I could have cried. Well, I DID cry. Ordinarily, a 3 day week would be nice but currently, it's a killer - I've been more or less completely incapacitated since.

I've had these symptoms for over 2 years. It's all so tiresom & wearing. I will PM you beatrice, thank you smile

Doomfinger Tue 24-Jul-12 22:36:27

I hope you don't mind me posting this here but I knew you'd understand the story.

My daughter's paediatrician is worried about September that she could relapse if she goes back full time because she will have had the six weeks and not used to it. My IL's are not the interested type (like my parents) but I try to keep them updated on things anyway so that I can never be accused of not doing it - ya know? So I was telling MIL what the paediatrician said and her response "I'm sure when she goes back she'll be so busy she won't notice to get tired" TIRED??? Do you REALLY think she's lost a TERM of school because she was TIRED??? Of course I couldn't say much I just said "He's not really concerned about her feeling tired, but with the break she could relapse" and hope she got the hint sad

ekidna Tue 24-Jul-12 22:49:56

Doomfinger people are / can be absolute arses with no comprehension. You have to be firm with the arses. Pacing and rest not pushing aids recovery. (not a doc disclaimer)

Doomfinger Tue 24-Jul-12 23:17:32

I know it's driving her around the bend, she was 6 last week and she doesn't want to be resting, she's had health problems all her life because she was prem and wants to get on with it, but obviously we don't want her getting sick again. From the start of March to the start of May she was constantly being sick, my husband took 4 bin bags of bedding to the launderette the one day as all we had left on her bed was cot blankets and then she threw up over the last of those. She had pneumonia which has left her with emphesima(sp?) poor kid really hasn't had a break this year, she deserves to get the rest to get over this. At the moment we're having night issues, she wants to watch DVDs all night and not sleep, constantly telling us she's not tired (despite permanent bags) so I've told her the literal meaning of CFS is "very, very tired" so how can she tell me she's not tired? grin

Grockle Wed 25-Jul-12 11:10:28

You poor DD, Doom. And you as well, I imagine it is very difficult to deal with as a parent. Thank goodness I have this and not my 6 yr old, although he suffers through my being unable to do things. I feel ever so guilty most of the time.

I find that very few people understand. I've given up explaining & my family seem to think I am just tired and grumpy. Which is true but rather an understatement. I'm exhausted, in pain and dread waking up in the mornings, having to face another day. I'm meant to be taking DS to meet friends on the beach in a couple of hours but I desperately don't want to go. I feel like such a pathetic thing, such a burden to everyone and so unhappy, I just wish I weren't here anymore. I wish this was something that would actually kill me because at least then I might get a little peace.

CFSKate Wed 25-Jul-12 11:42:18

Doomfinger - do you think she has the CFS day/night reversal, so it's not that she's not tired, but that she can't fall asleep at night? Some take melatonin for this.

CFSKate Wed 25-Jul-12 11:49:19

BeatriceBean "some symptons I didn't realise I had were ME related (muddling words up more than usual)"

On page 8 of this PDF of the Canadian Guidelines for ME there is a table of symptoms,

it includes difficulty with information processing, categorizing and word retrieval,

Grockle Wed 25-Jul-12 20:46:24

That document is really helpful, thanks CFSKate. I've highlighted everything that applies to me and printed it. Not sure my GP will be grateful but I will show it to him when I go on Tuesday. I'm so very exhausted, it's an effort to speak. I don't want to go away tomorrow.

I now have an appointment to see a rheumatologist... in October.

Doomfinger Thu 26-Jul-12 00:14:08

As I said upthread, I have fibro too, and my middle daughter is an ex-IUGR baby so she has mobility problems! Getting out can be difficult sometimes, I guess at least it's not one of us holding the others back but we do get on top of each other at times.

Doomfinger Thu 26-Jul-12 00:31:06

Oops, if you leave a thread open it's a good idea to refresh before you post!

CFSKate, she's wrecked at night but fights it. She seems to be permanently wrecked with a mad spurt at some point in the day.

Grockle Mon 30-Jul-12 20:36:29

I am seeing my GP tomorrow & I don't really know what to say. I hate all of this and am feeling so low and pointless.

aliasjoey Tue 31-Jul-12 11:48:44

grockle how did you get on at the GP? I hope you found some answers.

I am finding it hard to know what symptoms are 'real' and what is just my imagination. I'm a hypochondriac anyway, and don't want to blame everything on CFS.

The tablets I'm taking seem to be working. They are an anti-depressant BUT I think there is something else in them that helps. I wasn't depressed (I suffer from anxiety not depression) but they seemed to help with sleep etc. They should not market them just as an 'anti-depressant' because it gives the wrong impression (that CFS is all in the mind).

They are also a 'sleep-aid', 'appetite-stimulant' and obviously something to do with CFS, although no-one knows what. Its like some sleeping tablets are also anti-histamines - drugs often have more than one action.

(appetite stimulant definitely! I haven't stopped eating...)

Grockle Tue 31-Jul-12 19:15:06

The GP said it could be CFS but from my description of the pain, he wants me to see the rheumatologist before he refers me to the CFS clinic. So, nothing til October. I asked what I should do about the pain & exhaustion in the meantime & he said to pace myself (which he admitted is almost impossible being a working parent) and painkillers (which I've already told him don't work). He sent me for more blood tests.

So, I'm left feeling rather despondent & dreading the next few months. I do feel a bit better atm - I have more energy and don't feel so worn out - I just feel tired but in a normal way.

butterfingerz Wed 01-Aug-12 12:52:25

What is your diet like? Do you eat much dairy or wheat? You're not on a low fat diet are you? What types of oils and fats do you use? Too much polyunsaturated fats are bad and have an inflammatory effect on the body. Are you vegetarian or vegan?

Do you take any supplements?

I don't think you will find any cure from a regular doctor. Yes, you may get a diagnosis of CFS, ME, RA but then what? A diet change could really help you. Certain supplements could really help.

butterfingerz Wed 01-Aug-12 12:56:45

Oh yes and that Dr Myhill website as suggested upthread has great diet advice.

Grockle Thu 02-Aug-12 09:44:44

Butterfingerz, my diet is crap atm but usually I eat bit of pasta, bread, lots of fruit & veg, occasionally meat (ex veggie & ex vegan). Not particularly low fat. I can't face hot food so am eating fruit & muesli for the most part. I will look into dietary stuff. Thank you

fuzzpig Fri 03-Aug-12 19:27:24

Hello, I just stumbled on this thread, hope nobody minds me jumping in.

I have CFS as a possibility on the back of my mind. I think it is probably post viral fatigue though, I have had a chest infection for 7 weeks. I am going to the doctor on Tuesday and don't know what to ask as they might just say I have to wait it out. I have had these aches for several months now but a lot worse at the moment. I would be frantic with worry about it but I don't have the energy to be frantic! hmm

I don't know what to do. I work full time because my DH can't (he's waiting for surgery on his spine) and I have missed so much time already. I said I would be back on Monday as I will have finished my third course of antibiotics and some steroids, but I can't even stand up.

Gentle hugs to grockle and everyone else.

Grockle Fri 03-Aug-12 19:32:13

Thank you fuzzpig - sorry you are struggling. I know there are some pretty unpleasant viruses going round at the moment. I hope yours gets better soon & turns out to be nothing worse. It's miserable though isn't it?

I've had this for 3 years now. I contacted my dr today to ask for a private referral - I can't be in pain like this for another 10 weeks while I wait to see a rheumatologist. I dread to think what it will cost but I'm at the stage where I don't care anymore. I need to stop the pain & exhaustion one way or another.

BeatriceBean Fri 03-Aug-12 19:45:09

A diagnosis can help if you are in an area with an ME/cfs clinic. Yes it is more about managing a condition rather than "curing" it but for me the advice and understanding has been invaluable. Unfortunately I had to leave my job (teaching) under their advice as there was no way I could physically manage it without relapse. At that stage I was mainly housebound, often bedbound. Now I manage really well and am able to walk often, as long as I pace, understand my limitations etc. I found the OT sessions really helpful in terms of what they considered relaxing (NOT tv or reading etc) and of leaning about resting before getting tired and exhausted, not to use the manic evening energy I got but to take it as a sign I was overtired etc etc etc.

Muddling up words etc- what I meant was I hadn't realised that some of my symptons were due to the ME until I had spoken with the consultant!

Doom - so sorry to hear about your daughter. That must be so hard for you too.
As for family/friends understanding - that was the toughest thing for me. I'd had a friend go through a Serious Illness (not that I'd want that either) but she coped, had treatment, the world behind her and recovered, went back to work. If you have ME/cfs you get people saying to you, "oh yes, I get a bit tired," or "How lucky you get to stay at home all day." It was very very isolating.

My mum has recently apologised for not believing I had ME/cfs sad I know my brother never took it seriously. It's a hard diagnosis to have.

I seriously hope your doctor comes up with something else Grockle! If it was "just" a vitamin deficiency it would be easily solvable.

out2lunch Fri 03-Aug-12 20:03:29

don't take any more crap grockle - get yourself referred and diagnosed asap things then get easier and it will give you peace of mind

i feel your pain and know exactly where you are coming from - will pm you my story

fuzzpig Fri 03-Aug-12 21:29:45

I hope you get the referral. I have only realised this year just how dependent we are on doctors' personalities - whether they are willing to listen or not for a start. It seems like a lottery.

Should go to bed now but it seems pointless as I won't feel any better. It just feels like I'm lying on blocks made of iron rather than a mattress.

I feel like a fraud posting here as really it's not being going on that long (I guess gradually getting worse over the last 6 months or so, but I can't be sure exactly). 3 years seems unthinkable, I'm really sorry you're going through this. x

fuzzpig Fri 03-Aug-12 21:39:34

I just had a look at that PDF and noticed Cushings mentioned on it - I am being tested for that, although the doctor did say it is extremely unlikely and is more of a formality. Apart from that it's only been regular ones like iron and thyroid - should I be asking for specific blood tests or will they just laugh at me?!

I'm a bit scared of that... thankfully my current GP is nice. But the fear is there that somebody will just say to me "don't be silly, you're just unfit".

Grockle Fri 03-Aug-12 22:25:41

Thanks Beatrice, We DO have a CFS clinic so there may be some hope but I can't be referred there yet. I'm not looking for a cure, I'd just like to know what it is & what I can do to make it easier. I am also a teacher & I have been unable to manage. I've gone to 4 days a week but it's too much. I'm currently walking with a stick which I cannot do at work.

I will see what happens with the private rheumatologist, then ask my GP to refer me. I'm so tired of fighting for everyghing! I know what you mean about bed - I'm tired & achey but I know I'll feel the same in the morning.

Don't feel like a fraud fuzzpig - I just hope you get help more quickly than I have.

CFSKate Sat 04-Aug-12 19:36:23

There are many possible causes of tiredness/fatigue, and there are a number of different definitions of ME/CFS, some of them are fairly worthless.
The best are probably the Canadian Criteria, or Canadian Consensus Document,
I linked to a short version earlier in the thread, here it is again.

Doomfinger there are some children's guidelines for ME, I don't know how useful they are.

BeatriceBean - "not to use the manic evening energy I got but to take it as a sign I was overtired"

Do you think that could be anything like the adrenalin rush in CFS patients described here?

Grockle Sat 04-Aug-12 21:12:30

The Canadian one is very useful & quite detailed. I've been out today - nothing particularly exerting - and have begun to notice a pattern. On a good day, once I get over the stiffness in the morning, I can keep going til about noon. If I walk with a stick to lean on, I can manage another hour or so but by 2, I've had enough. My legs ache, everything hurts & I feel ready to lie down.

I have 2 weeks without DS and am going to try to work out exactly what I can manage. I am meant to be going on 2 holidays to the countryside with DP & the dog - we were going to do some walking that we can't do with the DS's because they can't manage more than 4 miles but now it seems that even on a good day, I can't manage more than that either!

Grockle Mon 06-Aug-12 23:34:00

I'm at the end of my tether...

How do you get a GP to listen and understand when you say you are in pain? It's not like a little headache, it's constant labour-pain type aching in my back and hips. I can't walk without something to lean on. I feel so limited in what I can do. I'm on solpadol & amitriptyline but it isn't helping. I'm so very fed up with constantly complaining and whining at my GP but I just want the pain to stop. Without doing anything drastic, what can I do? sad

BeatriceBean Mon 06-Aug-12 23:49:28

Oh Grockle sad It's so hard isn't it? Can you go to a different dr at the practice? Different GP?

Have you listed symptons/dates? Suggested you want to be referred to CFS clinic? Perhaps take someone with you who can say, "I'm really worried about Grockle, she's not one to complain but this has knocked us for 6"?" Rightly or wrongly I often point out I used to be part of a rambling group pre-illness, and emphasised that I was scared and needed to know what was wrong.

My initial doctor made me feel a complete fraud and I needed his sick-notes to keep me off work. I was so scared of coming across as a hypochondriac. (That's the one that was struck off). My next doctor then had to start again with tests etc.

I do feel for you - the limbo is such a scary place to be. I don't know if you are able to access the Dorset ME support group but they have a paid benefits advisor, might be able to help with doctors etc. It's hard though if you're not sure what the condition is to assume.

Sorry I'm half asleep so a bit garbled but didn't want not to post.

Grockle Tue 07-Aug-12 00:01:45

I have listed symptoms but my GP seems unconcerned and just throws different meds at me each time. Nothing that actually helps.

Thank you for posting - I have PMed you smile

fuzzpig Tue 07-Aug-12 13:29:16

Fuming on your behalf grockle. Just not right to be dismissed like that sad

I'm also hmm about not being able to change GPs - that just seems really wrong to me. My enormous inner cynic says it seems like they'd rather stick with the status quo than risk crap doctors being highlighted by patients switching from them. But that's just me. Still, might be worth getting in touch with PALS sometime if you can face it, as it seems ridiculous that you aren't allowed to change GP.

I hope you have more luck next time. It's just so horrible that when you are feeling at your weakest you need to fight harder than ever to be listened to.

I don't know if you read the long 'mild ME' thread but I did notice a lot of people mentioned listing actual examples rather than 'just' symptoms, because pain is so subjective - for example as well as describing the pain itself, saying it takes you 30 mins to shuffle down the stairs on your bum because you ache so much. That might make them realise just how much it's affecting you. (sorry if you already did that, brain is a bit fuzzy and can't remember what I read on each thread)

Grockle Tue 07-Aug-12 13:49:35

That's a good idea. I really think my GP will think i am just being dramatic when I say there are days when I just cannot stand up straight or walk without a stick. I even bought a wheelchair so I could go on a family day out - I knew I wouldn't manage it otherwise. I will think of examples and write them down (appalling memory). I'm seeing my psychiatrist next week who is very sensible & agrees that I didn't need a psych at all (but since he is good, I want to keep him!) & was the one who suggested this might be CFS. He's the one who referred me to the rheumatologist again and asks about ALL my symptoms. Maybe he can prescribe something for the pain? My GP tends to focus on ONE thing and tries to deal with that but I really think they are all linked.

Thank you for the support. I'm feeling really miserable at the moment & dread waking up each day sad

belleshell Tue 07-Aug-12 14:23:37

Hi Grockle, hang in there, it took me 8 years to get a diagnosis, after having every test done and been told it was all in my head... its 2 years now since i was diagnosied and as much as i am glad i have a diagnosis, it is still chuffin hard to live with. i am a nurse, and all my close friends are nurses too, but i feel they just dont get it. i have been signed off this week for 2 weeks, i guess the family holiday we have just had where i did nothing till 11 ish and i was back in bed by 8pm was still too much. a close friend asked if i was knackered and to get some rest....if only it was that easy....resting when in pain doesnt really happen, brain fog, constant headache sore throat, constipation, insomnia sweats....and they are just the physical symptoms...but at least i know what it is and i know what i need to do, doing it is the hard part. Have u contacted the clinic direct or even looked at a private referral. good luck. xx

Grockle Tue 07-Aug-12 14:34:00

It didn't occur to me to contact the clinic direct but I looked at their website and you need a GP referral. Since mine won't refer me til I've jumped through hoops seen the rheumatologist again, I'm trying to get that done as soon as I can.

So sorry you are finding things so exhausting. It's a nightmare, isn't it?

Tomorrow I am going to a health spa, with a book. Only for 1 night but it means I can do nothing but relax and not feel guilty about sitting down. I'm SO looking forward to it. I just hope I can walk properly!

magso Tue 07-Aug-12 14:39:30

Grockle I am so sorry you are unwell . I had trouble getting my GP to understand just how unwell I have been and I too was sent to a psch. That really upset me!! The psch wondered if I could be having panic attacks ( I am utterly sure I was not!!! - I just could not stand up and stay conscious sometimes!) I was eventually diagnosed with CFS after seeing the lead professional (the thyroid specialist in our area). The CFS clinic will not see patients without a diagnosis. My GP openly admitted she knows very little about CFS/ME but I supplied information ( including what to rule out) and found out who I needed to see etc and eventually was referred on and diagnosed. I also found that one of the other GPs in the practice has some knowledge (they all seem to have special interests) so it might be worth asking your GP( or one of the others when seeing the childrens GP) if he has a collegue with a special interest in fatigueing illness.
I use walking poles quite a lot, and have made lots of mini changes to the house to try to make life less energy consuming. Our whole family has had to adapt. The CFS clinic so far has worked on getting me to stop as soon as I get wobbly or slurred speech. At first I thought they were unrealistic (I am always wobbly- and what mother can just stop?)- but little by little I have got slightly better - mm by mm rather than leaps and bounds.
I think the things that have helped me most so far are nutritional support ( similar to Dr Myhills advice), pacing, talking to people that understand and, and lastly I think being able to breath better (after getting my asthma and rhinitis properly treated) may have helped.
Must rush hope you get support soon

Grockle Tue 07-Aug-12 15:55:59

Yes, the slurred speech! DP laughs at me when I'm really tired - he says I'm as funny when I'm tired as I am when I'm drunk... I can barely talk, fall over & flap my hands a lot whilst pointing at things to try & get my message across blush

Those of you who have changed your diets, what have you actually done. I've read about the Stone Age diet on Dr Myhill's site but it is confusing (or I am not very clever...)- no dairy, no wheat, no grains, no carbs, no berries? But then it says for dinner to have berries & potato confused

I am vegetarian so if I can't eat dairy, grains, carbs or meat, it leaves me with salad, nuts & apples & not a lot else.

belleshell Wed 08-Aug-12 07:33:55

has anyone one suffered with weight gain! since my diagnosis i have put on 2 stone, and it just wont shift. i have joined slimming groups and get no where. i know i really need to exercise more but i just cant, a bike ride with the kids last week on holiday put me in bed for a day ( i went 4 miles down hill!!!) i am desperate, but cant seem to shift it. i eat alot of fruit, i have porridge or 1 slice of brown toast with a banana for breakfast, its usually a salad or maybe pasta or cous cous for dinner and then whatever for tea. i have tried reducing portions, etc.......its just another chuffin curse of ME! how does everyone else get on!

Grockle Wed 08-Aug-12 08:20:31

Me! I began putting on weight when I was barely eating anything. It didn't make sense - I was at my usual activity leve so I'm not sure why I started gaining weight. I've probably put on a stone but I daren't weigh myself. My ability to do anything physical has dropped but I'm still not eating loads - cereal for breakfast, fruit for lunch, piece of toast or more cereal for dinner. I woud guess that I'm still within healthy range for BMI but teetering on the edge of being overweight.

I feel quite fat and lazy.

stressedHEmum Wed 08-Aug-12 09:21:09

Me. I've put on about a stone and a half over the last 18months (and I was already fat), even though I eat far less than I used to and have completely given up alcohol. My diet is pants, though, because I can never think of anything that I actually want to eat and I often am far too tired to cook myself a decent meal, after having cooked for everyone else (I'm the only veggie in the house).

I need to exercise more but I just can't. A walk to the park the other day put me flat on my back for the next 3 days and even getting through the day is usually too much for me, so I don't know what to do about it.

fuzzpig Wed 08-Aug-12 09:41:41

I was fat to begin with too, but since I started getting these symptoms (and having looked at the other thread linked to here, it was about 15 months ago) I have maintained weight - which is ok but considering how much more active I have been and how much less I have eaten (both due to being at work, my job is fairly physical) I would have expected to lose a bit - I am on my feet all day and don't eat for comfort or boredom anymore.

Saw the doctor yesterday BTW, after some exhausting muscle tests he said it is viral myalgia and I have to go back in a couple of weeks. I need to tell him that I have had these symptoms for much longer (forgot to mention it yesterday, damn fog). I do agree with what he said though, it has to be a virus thing because it only got dramatically worse after having the chest infection, but that doesn't explain why I'd had the same problems for over a year before that. Maybe it made me more vulnerable to this illness or something.

mercibucket Wed 08-Aug-12 10:20:11

If you are veggie, would you be willing to compromise that for your health? I used to be veggie, I did read once that it's more common to get thyroid probs (which I have) on a veggie diet. Anyway I changed to a high protein diet with fish and chicken and do feel healthier for it. If not, I do think it's really important to work hard at a healthy diet if veggie and ill. It's so easy to fill up on carbs n cheese.

Grockle - did you check all your blood test results yet? With the weight gain as well it could be a thyroid problem. We let people suffer for years in the uk when they would treat in the US

stressedHEmum Wed 08-Aug-12 11:12:00

Merci, I don't know, tbh. I've been veggie now for over 30 years, I don't think that I could actually tolerate meat anymore. I had a really good diet before I was ill but now, I'm just too tired and sore.

I've actually had to change even the way that I cook because I can't stand long enough to chop, grate etc, and anyway, it makes my hands and arms to sore. So now I do things like use bags of ready chopped veg, grated cheese, frozen mash for the tops of pies, all sorts of things that I would never have even contemplated before. I am so fed up of the whole thing, it's affected every single area of my life, and the family's because I can't go anywhere or do anything without suffering for days afterwards.

ArthurPewty Wed 08-Aug-12 11:35:01

Message withdrawn at poster's request.

fuzzpig Wed 08-Aug-12 12:19:01

(((stressed))) sorry it's so crap.

There are other foods good for protein aren't there? I'm rubbish with nutrition etc but I thought stuff like lentils were good?

I should look into it more TBH, I have gone off meat a bit lately as it makes me feel sick (had so many random aversions that I even wondered if I was pregnant) so I doubt I'm eating right. I picked up a thick pamphlet in the pharmacy yesterday all about vitamins/minerals so I'll give that a read too.

Nutrition is such a bloody minefield though - you only need to read MN to see how much conflicting information is around! It's hard enough when you're just trying to work out how to feed your children, but surely a lot worse when you can barely find the energy to cook. Most times even ordering the shopping on my phone wears me out.

I sympathise about getting the prepared food stressed - I feel silly paying more for it but something's got to give. DH was a chef for many years but he is struggling to cook too (prolapsed disc) so we are currently trying to find the balance between convenience, health and cost (let alone taste!) and it's not easy. thanks

belleshell Wed 08-Aug-12 12:36:22

i had fasting bloods done (again )last month at 8.20 am all normal!! including all thyroid it isnt thyroid...i have just taken the dog for a 10 min slow walk over field and back, all i could think is cant wait to get home.... i used to go to gym 2 twice a week as well as working and having 2 small kids. just wish i had half the energy i used to.... god i must stop moaning...sorry

ArthurPewty Wed 08-Aug-12 12:55:13

Message withdrawn at poster's request.

stressedHEmum Wed 08-Aug-12 13:10:53

Fuzzpig, thank you. yeah, it's rubbish, but you just have to get on with it, don't you. I mostly shop online and even that leaves me knackered, all that concentrating and clicking!

Lentils, beans and other pulses are good for veggie protein and low fat, so they are good for you. I try to cook with them at least a couple of times a week for everyone, not just me. Eggs are good, too, but I really don't like them, never have. I'm actually a pretty garbage veggie because I don't like eggs, cheese or milk very much blush. I get B12 injections every 3 months and have calcium and VitD supplements from the GP, as well as my meds, but none of it seems to help much.

I'm like Belle - I really must stop moaning. So many people have things so very much worse than I do. I completely try not to moan in real life because people just don't understand how appalling I feel. I think everyone on here must get the same sort of reaction.

Leonie - I've had monthly blood tests for the last 2 years, sometimes weekly ones, fasting and otherwise at all times of the day, and there is never anything wrong with my thyroid or anything else except B12 and VitD. Apparently I should be ridiculously healthy now that they are sorted out, but I'm not. My illness started after I caught some horrible virus while I was on holiday in foreign climes. It knocked me for 6 for about 10 weeks and I've never really recovered.

fuzzpig Wed 08-Aug-12 13:30:05

That's funny (odd, not haha) stressed, doctors I've seen keep asking if I'd been anywhere abroad, been bitten etc, as they couldn't understand why this infection wouldn't feck off.

I cried at DH the other day because I felt guilty complaining about the pain when DH is in agony due to his arguably more 'real' injuries... he told me off. You just can't compare. It doesn't matter how bad your problems are compared to others, if they hurt, they hurt, and that's enough reason to come on MN and have a moan smile because where would it stop? Telling someone with no feet that they can't complain because they still have hands?

MN is brilliant for venting about things you can't talk about IRL - use it and try not to feel bad about it xx

mercibucket Wed 08-Aug-12 13:52:17

That's the great thing about mumsnet! Moan away!
StressedHEmum - have they looked into why your vit d and b12 are low? Do they pick up with the injections/tablets? It must be v frustrating to see the blood tests come back ok but not feel ok at all.

fuzzpig Wed 08-Aug-12 14:23:41

I was wondering about asking for those two vitamins to be tested as when I'd posted about my symptoms in the past people suggested it. Stuff like iron always comes back fine. Are d and b12 done with specific tests or are they under the full blood count? If the latter then I guess they must be fine as I've had frequent FBC tests. If not then do I just ask "can you test my d and b12 please"? confused

Or should I just go buy some supplements on the basis that it won't do any harm.

I think the GP yesterday was thinking of doing some blood tests but he said we have to wait a little longer as I recently had a course of steroids and he wants to let them get out of my system first.

stressedHEmum Wed 08-Aug-12 14:32:49

Merci - yes they pick up with the injections and supplements. I've had all the intrinsic factor tests, bone type tests and things like that and they all came back fine.

My B12 was only 114, so it was very, very low, VitD and calcium are just a bit low. Doc thinks that the B12 was caused by my body using it all up, basically, when I was ill after my holidays. I've been getting the injection for a year now, and the level of B12 has normalised. She seems to think that the D3 and calcium are dietary deficiencies and a chronic lack of decent sunshine (west coast of Scotland, VitD deficiency is not uncommon here). I've not been on the supplements for long, but will find out if they are working at my next blood test.

It's v. frustrating, because I should be "jumping up and down" according to my blood results, but I'm not.

Fuzzpig, that's the thing, isn't it? It just doesn't seem like a "real" illness and lots of people don't think it is. Someone actually told me that ME was a made up illness and someone else that it was caused by too much drinking. I think that because I look alright, there is a bit of a lack of understanding. It's a bit like my DSs AS, you can't tell by looking at them, so there is nothing wrong with them.

It is good that we can come on here and moan a bit, it helps keep me sane, tbh. I spend the entire time trying to put on a brave face in RL, so being able to talk about it here is a relief.

Thanks to all for support thanks

stressedHEmum Wed 08-Aug-12 14:41:02

I have my levels tested as part of a FBC but the GP always puts them on the form thing specially under other tests. The Vitd test here has to be sent to Dundee because it's specialised test, it takes about 6 weeks to come back normally.

I think the B12 showed up in a normal test, but I've had so many I can't really remember. The intrinsic factor is a specialised test to see if the B12 deficiency is caused by pernicious anaemia.

I would definitely ask about a B12 check and a VitD check wouldn't hurt, especially after the summer we've had. I would just ask your GP if they've been checked and if not get them done.

fuzzpig Wed 08-Aug-12 14:44:11

YY to the Aspergers thing. I am actually waiting for my own assessment for AS (in fact the CPN is supposed to be phoning me today about it <glares at phone>) so while I have not known the 'label' long I certainly know what it's like to get the "but you look fine" thing angry

CFSKate Wed 08-Aug-12 15:54:48

Gut bacteria, weight gain, autoimmune diseases and autism.

Article quotes Professor Jeremy Nicholson - He also speaks here

Invest in ME are fundraising for an ME centre, if fundraising achieved - first project to be looking at the gut.

Thomas Borody also worth a look.

Grockle Wed 08-Aug-12 22:48:09

I teach children with severe autism & am fairly sure I am a little autistic. DP says I'm 'special'. I try to keep my funny ways to myself which is why I like my job - the children help me straighten & line things up. I'm away tonight & had to straighten all the picture frames in the wall before I could settle in My room. And change the toilet roll so it was the right way round blush

I'm also the only veggie in our house but have lapsed, mainly because I really can barely manage to cook things to suit everyone. I really don't like eating meat though - it makes me feel fat & bloated.

Fuzz pig - I also have a prolapsed disc but whilst it is painful, I can manage & cope better with that than I do the other joint & muscle pain. Whatever the cause, constant pain is miserable. And 'invisible' illnesses are so hard.

I will ask for a printout of my bloodtest results - I forgot last time as I was in so much pain & feeling miserable.

fuzzpig Thu 09-Aug-12 10:00:09

I didn't realise you could actually get a printout of results.

Unfortunately the last lot of bloods haven't, AFAIK, been given to the GP - because I'd been seen at the hospital for an urgent X-ray, and the unit there did bloods. All they seem to have sent is a quick discharge letter as they didn't even send the (clear) X-ray result. But the hospital doctor did look over the results at the time (saying inflammation was high due to chest infection) so presumably she would've said something if any of the other results were bad? (not entirely sure what they were testing but they took 3 little bottles).

Currently pondering the balance between "Internet-induced hypochondria" (or rather the appearance of it) and "being armed with knowledge". Have been reading a little - nothing heavy as I am really struggling with tiredness - mostly just looking up terms that I've seen mentioned particularly on that longer thread linked to earlier. Particularly struck by the 'orthostatic intolerance' - that has been a massive problem for at least the last 15 months and I never knew there was a name for it! Even standing for our (5-10min) staff meeting leaves me feeling faint and constantly shifting my balance so as to stay upright, while boggling at the fact my colleagues manage to stand so easily. I had a 24hr ECG last year and because it didn't show an actual heart problem I have spent months thinking I was just unfit - even though massively increasing activity has done nothing to change it.

I realised I have been 'pacing' pretty heavily since starting my job, though again I didn't think of it in those terms. Even when I only worked 18hrs I knew I couldn't do anything (barring perhaps 2hrs in town after which I would be almost as wiped as if I'd done a full day at work) on my days off - I knew I would be in agony the next day. After work I would be unable to get off the sofa and often be near to tears because of being tired and sore. All my full time colleagues would talk of doing things on their days off or even just cooking their dinner after work, and I would wonder how the hell they managed it.

At first I put it down to "getting used to having a job". I was a SAHM before and certainly not sporty, although I was capable of walks and the gym and so on, but not as active as I should have been, and in any case the job is more physical than say office work. DH (despite his many injuries) voluntarily took on ALL the housework to allow me to adapt to working life. I have felt guilt for this, and shame that I must be really unfit despite doing so much at work.

But I didn't get used to it even in 8 months of 18hr weeks. Full time is hell despite me being much happier in my new slightly higher role. I am still finding myself totally incapable of anything outside work. Apologies for massive and hijacky post (and I hope nobody here thinks I am being a google hypochondriac) but I am a little freaked out. And I feel a bit stupid because I've suffered like this for over a year (symptoms started before I started work) without doing anything about it because I just waited for it to get better on its own.

What does this all mean sad

belleshell Thu 09-Aug-12 13:03:45

Hi Fuzzpig can you think of anything that happened 18 months ago that could have triggered your chronic fatigue! because thats what you have. i think the viral myalgia is all part of the same problem. when i think back to my 1st true episode, it was following a year from hell. But when i think back i had been having symptoms beofre this event i had always just managed to get on with it, but after my 1st recordable episode that set the wheels in motion and meant i had every test known to man all of which where normal, my recovery was slower adn more episodes followed. im lucky that i have managable symptoms on a daily basis, tiredness, pain, brain fog, visual disturbance, constipation etc...but it when these 'crashes' happen that i literally take to my bed and hope for the best. This isnt the best management butthe one i feel helps because i just remove myself from the world.......obviosly when the kids are about i care for them but im lucky that i have a very loving and understanding partner, who helps. The guilt however is a killer. i have been laid this morning think that im useless and i really need to pull myself together. i havent taken pain kilers (becasue i cant drive when i do) and i have dragged myself into work to check emails and drop off sicknote. that took 1 hour i am now back in PJ and in agony. when people ask how i feel i dont know what to say, i really feel like saying im F**KED off thats how i feel. Knackered doesnt even come clsoe to my tiredness atm, and pain is invisable isnt it...

eeekkkkkk soryy another rant, but for all those reading this and knowing how i feel i hope oneday we all get a magic wand....x

fuzzpig Thu 09-Aug-12 13:20:48

I'm not sure about any discernible trigger. I've been trying to think back as so many people have said their symptoms started after illness. I wonder if maybe it was around then that I had tonsillitis for the first time in over a decade (I have had it I think 3 or 4 more times since) but can't be sure. It may have been another chest infection as I have always been prone to those. But whatever it was, it was nothing like the infection I've had since June.

And <hollow laugh> at the word 'recordable' - that really struck a chord, I think the way to sum up the last year plus would be that I've felt ill the whole time and that as soon as I have a 'recordable' illness I'd rush to the doctor (which I rarely did before, even my pregnancies had very little medical attention) because I thought FINALLY! I can get some help and, TBH, a 'reason' for resting.

Grockle Thu 09-Aug-12 15:24:16

Fuzzpig - my psychiatrist said to go to my GP about EVERY tiny thing now... so that it was always recorded. For example, the fact that I've had a sore throat 6 times this year is not noted anywhere because I don't bother going to GP because I am there so often anyway blush He said it's important to make sure these things are recorded. But, TBH, I'd never leave the GP's room if I went every time there was 1 tiny thing wrong.

mercibucket Thu 09-Aug-12 18:58:37

You can definitely get a print out of all blood test results and I highly recommend doing so, then checking all the results. You might need to ask for them with the reference ranges. In particular, check tsh (under 2), t4 (if not done, it should have been!), ferritin (not at bottom of range), b12 (over 500), folates (if not done, ask), and vit d. Those are some of the main ones for bone/muscle pain, fatigue etc. No doubt there are more, I only know the ones relevant to me
There is also a theory in the thyroid world that fibromyalgia and cfs are often thyroid insufficiency. The theory goes that the tsh test is new (ish) and before it, a GP would assume thyroid probs and treat with natural thyroid (t4 + t3) and the patient would get better. But now, the tsh test (which doesn't test your thyroid at all) misses some people so they get diagnosed as cfs or fibro instead. This is just what I read. There are some doctors who treat with a trial of t4 to see if symptoms go. It is not a mainstream treatment. For more info, ask on thyroid uk's site at health unlocked

ArthurPewty Thu 09-Aug-12 19:47:01

Message withdrawn at poster's request.

fuzzpig Thu 09-Aug-12 19:59:11

Will do. Booking an appt tomorrow.

fuzzpig Thu 09-Aug-12 21:58:54

Is there anything particular I should be saying to the doctor? He's really nice and thorough (hence I always ask for him when booking) so I'm not worried about that aspect, but I don't want to be all 'expert patient' if there's a chance that will be a bad move.

Also, is hairloss relevant? I know after you give birth it's normal to lose some hair (since it gets thicker during pregnancy) and I did briefly after my first baby. I did after my second too - but it never stopped. He turns 3 this month! I am always finding masses of hair in the plug and clogging up the Hoover etc and it always comes out when I brush, which never happened before. I do have thick hair though so while it is distressing I don't know if I should mention it.

belleshell Fri 10-Aug-12 03:26:14

im sorry for pinching your thread, but it is kinda relevant, i wondered how everyone describes their pain? this is something i really struggle with. i have two type, the one i get daily (and when i have done too much) is like someone as grabbed the top of my right leg,so tight i lose feeling and then it is painful to the point where i limp, and i dont know where to put myself, my fingers on right handburn with pain!!, the second pain i get is when im in crisis, and i feel like i have a lead suite on and im walking throu treacle....everything is such an effort... how do u explain yours!

fuzzpig Fri 10-Aug-12 07:24:27

Mine is like the lead suit/treacle thing.

Have you ever seen the X men movie (can't remember which of them) where they show how Wolverine gets his adamantium skeleton? (or whatever it is, I'm not as much of a fan as DH!). You see him being submerged in water by the scary scientist guy and they inject his whole body with this pearlised grey liquid. That's how I describe it - when the pain suddenly comes on it is like somebody has injected me with the heaviest metal on earth and I can feel it flowing to every part of me.

Hips are 'in a vice' though, and lower back is a bit like period pain.

Can you tell I feel like shit this morning grin

ArthurPewty Fri 10-Aug-12 08:27:34

Message withdrawn at poster's request.

Grockle Fri 10-Aug-12 09:40:06

I get general fluey type aches and pains daily, with stiff hips & back pain like when I was in labour. When I've done too much, it's like the lead suit/ treacle thing - I can barely lift my feet to make the next step.

In between those 2 stages, my legs begin to feel heavy & wobbly, hence using a walking stick to give me extra balance & security.

fuzzpig Fri 10-Aug-12 11:02:25

Leonie. I sense you are trying to hint at something.


I have an appointment for Wednesday - so earlier than the 'couple of weeks' he said to come back in. Hope he doesn't object. Wasn't actually expecting to get one so soon (yes that is 'soon' for our surgery!)

Will definitely mention the hair loss. And my hands. They feel sore sometimes, on my palms, like the skin is too stretched and dry. That's another one that has been bugging me for a long time but never enough to make me do something (other than get through my body weight in hand cream!)

ArthurPewty Fri 10-Aug-12 11:11:40

Message withdrawn at poster's request.

Grockle Fri 10-Aug-12 12:18:32

This is very interesting. My hair falls out a lot too & I have been discharged by the dermatologist with periodic episodes of eczema/ dermatitis and very dry skin. Never thought to link any of this.

Oh, and my cough seems to have returned. It usually takes a good 2-3 months to shift it.

fuzzpig Fri 10-Aug-12 12:32:05

I don't have dry skin anywhere else. Is it under active thyroid you are referring to btw, rather than over?

Coughs are crap aren't they, mine had virtually gone but I'm back with a really sore throat again since yesterday angry feels like I've got little balloons of poison in my throat <poetic>

Really sick of it, it's like I'm not allowed to get better. I have two more weeks of certified sick leave but it doesn't feel like enough, even though I really miss it.

Grockle Fri 10-Aug-12 15:05:07

It's shit, I know. I'm due to go back to work in September but have loads to do in the mean time but I'm so exhausted, I can't do my work. I can't concentrate or remember anything. And I can't go very far without taking my stick to help me balance. How I'm meant to keep up with a room full of children with severe learning difficulties & interesting behaviour, I don't know. My GP just says to keep going. Even when I told him I was so exhausted, I was tempted to fall in front of a bus so I could have a break.. Just keep going. I wish I could. sad

Sorry - feeling frustrated and low... I just want to feel well.

ArthurPewty Fri 10-Aug-12 15:06:49

Message withdrawn at poster's request.

fuzzpig Fri 10-Aug-12 16:49:40

sad no apologies needed here grockle. This is a lovely supportive thread you've started!

Have to agree I've had the same thought. Although it was scary, my first thought when a GP said I may have pneumonia was "good, I may get to go to hospital".

belleshell Fri 10-Aug-12 17:01:51

omg i cant believe you all feel like this too.. its so good (for me! ) to hear others go throu what i do each day, i really think at times i am losing the plot....
((((((((((((((big hugs all)))))))))))))))))

Grockle Fri 10-Aug-12 18:08:01

Oh sad. I'm glad I'm not the only one who feels like this. I'm not really suicidal, just desperate for a break, to not be in pain and to feel well, even if only for a day. I spent so much time earlier this year wondering what I could do to achieve that. It was not a good time. I'm coping better now but wish I had some support from a dr. Feeling like this is all in my head, doesn't help. I'm meant to be going away this week to do some walking. I think I may have to let DP & the dog go whilst I sit in the pub!

fuzzpig Fri 10-Aug-12 18:56:01

Looks like a supportive doctor would make a world of difference. Can I ask - does your surgery have any Physicians Assistants? They are a sort-of doctor, they seem to be getting more popular as they do shorter training and earn less, but can do most basic doctor stuff (the main difference I have experienced is that they can't actually sign the prescriptions they wrote!).

I just ask because in my experience - and as we don't have assigned doctors here I have seen many different doctors/PAs - all the PAs have been fantastic, really thorough, compassionate, empathetic. Compared to the 'proper' doctors, of whom all but a couple have been the exact opposite. Maybe it's just coincidence, or maybe it's more to do with different training or reasons for getting into the field or something.

fuzzpig Fri 10-Aug-12 20:53:14

OK one more thing (reeeeally starting to feel like a hypochondriac now!) - shooting pains in wrists. They are only occasional, not every day, but when I get them I am briefly unable to do anything else as it really fecking hurts. Then it goes away and I forget all about it until next time. Relevant or not?

magso Fri 10-Aug-12 23:32:28

Another here who felt relief at being forced to stay in hospital. It has been really hard to accept that I am ill and even harder to not feel guilty at resting(pacing).

belleshell Sat 11-Aug-12 08:52:27

Magso i am so with you at feeling guilty for resting!! i feel if i have made the effort to get up and out of bed then i have the effort to do things, yesterday i hoovered throu! then took dog for a walk with DP. My whole day of resting was cancelled out by these few chores!!!! gggrrrrrr. I have also had to tell my kids that next week (they have been at their dads this week) not to expect much as i am tired! ( if only i was just tired!!) its heart wrenching........

fuzzpig Sat 11-Aug-12 09:30:23

YY to the guilt, I have been feeling that especially as DH can't do active stuff with them due to his injuries. I keep planning to do all this stuff with them but when it comes down to it I just can't as I'm tired [understatement emoticon]. My mental health is wobbly at best and the guilt of feeling like a crap mum certainly has not helped. Now that I'm realising that the symptoms may actually be part of something 'real' (as opposed to me just being unfit or being tired from work) I am starting to feel a bit less bad. I think if I knew exactly what was wrong it would help me a lot. Given other people's stories though I am really worried about how long this process of elimination will take. Really worried.

I managed quite a lot yesterday. Went into town (was only actually there 20 minutes visiting 2 shops for specific things - toddler boxer shorts and toy Daleks!), stood/sat outside the house while DCs ran round. Cooked both (easy) meals. Sorted out a load of clothes which involved trying stuff on. Apart from very achy arms (I find it really hard to put my arms over my head even when I'm 'well') I actually don't feel too bad today. DH even commented that I look better. Maybe it's a sign things are improving but I am scared of pushing myself too far.

fuzzpig Sat 11-Aug-12 18:13:03

Crap. Spoke too soon. My crime? Sitting upright for the afternoon instead of lying down, chatting to my parents. Totally wiped sad had to lie down on our tiny landing after a trip upstairs to the bathroom. So embarrassing.

One more thing (sorry blush) the doctor said the viral myalgia I was showing was the worst he'd ever seen - he actually got another doctor in to repeat some tests as he was concerned it might be meningitis. It wasnt obviously, and I was a bit confused by it, but does what he said mean that maybe it is in fact something more long term than post viral aches?! Or at least maybe he's more likely to listen to me as he can see it is bad.

belleshell Sat 11-Aug-12 20:04:55

hi fuzzpig, sorry your feeling crap again today, ive had a busy one, done 3 hour round trip to pick kids up, (i wasnt driving today thank god, i slept most of way there!) come home my partners 2 kids are also here which is no problem cos they all get along, and now i am panicking how im gonna be rest of week.... as for the GP, i still believe that this is an acute episode of a chronic problem ie, the underlying symptoms have been made alot worse due to your chest infection. I know you are worried about the time it as taken for others to be diagnosised but i do think things have come on in the last few years especially since NICE have guidelines on the diagnosis and options for management. (not treatment because there isnt a treatment as such only management of the many symptoms!) so please dont worry about this. if it was anything sinister there would have been something on one of the tests to show or indicate a problem... and as for sleeping on the landing, i perched on a flower stand today!!! KEEP UR CHIN UP . X

belleshell Sat 11-Aug-12 20:07:20

NOT SURE if you have seen this

fuzzpig Sat 11-Aug-12 20:16:01

Thanks belle - looks a bit wordy for me (blush) but I'll give it a proper look later.

belleshell Sat 11-Aug-12 20:19:35

the short and long of it all is no one understands ME/CFS but it more of a recognised condition that they have to manage better and they have set criteria for diagnosis!!!


fuzzpig Sat 11-Aug-12 22:39:46

Before I get even more confused - are CFS and ME two names for exactly the same condition or is there a difference between them?

fuzzpig Sat 11-Aug-12 22:43:51

Oh hang on. Never mind. It's explained on the first page of that link. blush

fuzzpig Sat 11-Aug-12 23:24:30

In case grockle or anyone else needs it this is the list of what blood tests should be done according to the NICE guidelines

urinalysis for protein, blood and glucose
full blood count
urea and electrolytes
liver function
thyroid function
erythrocyte sedimentation rate or plasma viscosity
C-reactive protein
random blood glucose
serum creatinine
screening blood tests for gluten sensitivity
serum calcium
creatine kinase
assessment of serum ferritin levels (children and young people only).

fuzzpig Sun 12-Aug-12 00:11:19

Read quite a bit of it now and it's finally made me tired enough to try and sleep (on sofa with big bang theory on - cant face bed tonight)

Surprised the guidelines mentioned graded exercise therapy though as other things I've read suggest it is not helpful. I googled a bit about deconditioning the other day and couldn't see much about it as a cause/factor in ME (I guess I was searching because I am so paranoid about just being told I don't do enough). I don't know, it's a few years old now so maybe it'll change at the next review.

I'm worried though as it seemingly frequently implied that too much rest is bad, so now I'm really confused. I am so scared of not being better in time for my return to work (I have 2 more weeks) that instinct is telling me to do as little as possible to allow myself to get better properly instead of rushing it. Then I feel like I need to do some stuff because otherwise I will be useless when I go back to work due to so much inactivity (5 weeks off!). Have to say, most of the time instinct is winning. Is this wrong? Should I be doing more?

belleshell Sun 12-Aug-12 05:14:43

NO instinct isnt wrong, and these guidelines are for long term managemement, again you have had a an acute epsiode of chronic symptoms it seems. i do have to admit i struggle with the whole resting theory, to anyone that gets referred to a ME/CFS clinic this is what the whole emphasis is on, learning to pace ( which i am crap at i am all boom and bust! but then at times i hate been like this i do it to try prove i havent got it and again i end up in bed!) until you are told any different i suggest you rest, but what i would say is try get into a routine, ie get up and get dressed, then rest have some lunch then rest. have some tea then rest, perhaps a nice bath before bed.....etc what you do in the rest times will obviously vary ( AFTER ALL A WOMENS(OR MANS) WORK IS NEVER DONE )so it may be that you do a short shop, make tea, a little bit of house work etc......

Im worried i am confusing you further! i aa sorry to anyone i have confussed i just feel your desperation of knowing what the hell is going on with your body and how the hell to manage it....sorry again

fuzzpig Sun 12-Aug-12 07:27:17

Don't apologise belle your posts have been really lovely and helpful x

Groovee Sun 12-Aug-12 07:41:43

My GP suspected ME but further investigations was Fibromyalgia. It answered a lot of questions from way back to my teens.

If you go to and look up CFS and fibromyalgia and read up on them both. You can print out the leaflets and highlight all your symptoms and then see a sympathetic GP, you may get further with investigations.

There are some fab support groups on Facebook too.

topsi Sun 12-Aug-12 09:44:57

Just wondered if anyone has googled Dr Myhill (?one l or two). She is a private dr and has loads of advice on her web site. You can even down load her book for free?

ArthurPewty Sun 12-Aug-12 10:03:55

Message withdrawn at poster's request.

fuzzpig Sun 12-Aug-12 11:03:01

Have looked at that site. Still not entirely clear on the differences between CFS and FM although from the bits I read I think CFS seems more like me (eg when I googled I saw that joint pain is not part of FM but my knees and elbows kill). Though it also said you can have both.

I want hypothyroid/lupus ruled out first though. Damn I'm going to sound like a total attention seeker asking the doctor all this aren't I sad if I even get the guts to say it at all.

I still keep feeling like it's my fault I am ill. Although it is drastically different now so I do know I am unwell, I was unfit and overweight before, maybe it's my fault and I deserve it.

ArthurPewty Sun 12-Aug-12 11:11:46

Message withdrawn at poster's request.

fuzzpig Sun 12-Aug-12 11:23:29

Yikes! Had to google the last of those as I'd not heard of it. I guess the thyroid problems are properly treatable as opposed to the others which are just 'managed'?

I have had thyroid function tested before which was fine but I gather that there are actually better tests which are less used? Can anyone explain this in idiot proof simple terms please?

ArthurPewty Sun 12-Aug-12 11:48:03

Message withdrawn at poster's request.

fuzzpig Sun 12-Aug-12 11:54:27

Thanks leonie. So, I should ask for FT4?

And no I didn't know that about SHBG! Never heard of it. I am crap at science. How do you know how much oestrogen you have confused

ArthurPewty Sun 12-Aug-12 13:14:47

Message withdrawn at poster's request.

fuzzpig Sun 12-Aug-12 13:19:58

Wondering how many bottles of blood they will have to take grin good thing I'm not squeamish!

ArthurPewty Sun 12-Aug-12 13:24:02

Message withdrawn at poster's request.

fuzzpig Mon 13-Aug-12 11:06:46

So WDYD if the results are between 2 and 10? Since they wouldn't treat it?

Cried myself to sleep last night, feel really crap still. It's just not improving at all. Getting so grumpy from being stuck indoors and snapping at the kids. I just took a short walk around the block, certainly loosened my knees up (I feel like an 80yo saying that!) but really tired out like I've done an hour in the gym. DH struggling too and no support from anyone. Got family visiting tomorrow, was really excited about it as they live far away, now I'm dreading it because I won't be able to lie down.

I've written a list to take to the doctor. Hopefully they can do blood tests now as the cough is virtually better and it's 2 weeks since I finished steroids. I am also going to ask about returning to work. I remember a colleague doing a phased return when she'd been off a long time, to get used to being back at work. Anyone have experience of this? I am worried because my job (unlike colleague's) is quite physical and there are some tasks I will really struggle with so the best thing for me to do would be to tell them the things I can/can't do and for them to write the timetable accordingly. Technically this would be quite easy but I'm not sure they'd be willing to. I don't want them to think I'm being a PITA.

ArthurPewty Mon 13-Aug-12 11:11:21

Message withdrawn at poster's request.

fuzzpig Mon 13-Aug-12 11:26:54

What are the costs like. I am supporting a family of 4 on less than 16k so unlikely to be an option - if it was, we would've got DH's back sorted out instead of watching him suffer for 2yrs sad

Or can you just pay for medication (if it were needed) and stay with NHS for the rest.

magso Mon 13-Aug-12 11:48:31

Fuzzpig I had a staged return to work after a long stay in hospital with pneumonia. Occupational health recommended I did not return to work but I was desparate to return - I did not realise I had CFS so a staged return (with the promise I would take a break when I needed to) was organised. I started just doing a half day- and frankly really strugged to do that. My speech and legs would go. It took a year before I tried a whole day and it soon became apparent I was not going to be able to return to my previous multiple days so I resigned from my other days as I felt I was unsafe to do more. I now only work one day a week and frankly struggle with that, with both my body and brain ( that fuzzy brain) letting me down. Work feels like the last little bit of myself left so I am hanging on by my finger nails - but keeping up to date and on the ball is tricky and I think I am loosing that battle. Perhaps if I had learnt to slow down earlier I may have managed better.
Anyway if you need a phased return ask for it. Occupational health should be able to help with details. Do not try to do more than you feel sure you can manage.

magso Mon 13-Aug-12 11:50:00

Ps do NOT resign like I did!!

fuzzpig Mon 13-Aug-12 12:12:59

That's a scary post for me magso! I only went to work (was sahm) because DH cannot work - but I was lucky enough to find a really lovely job that I adore. It was part time and I was dead chuffed to get a FT permanent position earlier this year especially as tax credits now require 24hrs/wk minimum rather than the previous minimum of 16! I'm so freaked out by this, I don't want to lose my identity and the confidence I've built up, but also I have to earn enough to support us. Also my 'specialist' role is only available to FT staff, I love the extra responsibility and I'm doing well at it, so I hope they'd make an exception so I could keep it if I reduced my hours.

I definitely won't resign - at the worst I could probably get a transfer to a desk job (work for the council so plenty of different roles). Since I got sick(er) DH has been saying that when he's recovered he will go back to work FT (rather than school hours as we'd planned) so I could get a break. It's ridiculous, I've only been working a year, how can I need a break already? And I don't want him to push himself too fast either as he's likely to return to retail management. I can't even focus on my OU degree now let alone what to do in the future.

This job has been one of the best things to ever happen to me and yet this has been the hardest year of my life.

magso Mon 13-Aug-12 12:47:58

Sorry to scare you! It was not meant to be scary but I suppose I do not want others to try to work through illness and end up with CFS as I have done.
I resigned because I could ( Dh took a more senior post) and I did not want my collegues to keep having to work extra to cover for me. I think I would have had a better outcome if I had not tried to do so much so soon - but noone could tell me and with a sn child really taking life easy is not a realistic possibility.
I was paid my contracted pay during my staged return and the object of occupational health is to protect your health. I think it is worth exploring and listening to their advice (unlike me who did not believe I should stay on sick leave for longer!). The council shpould have occupational health - but you may not need their help. Your employer will want you well and able before you return to FT work.

fuzzpig Mon 13-Aug-12 12:56:21

Bizarrely my boss just phoned about said referral, she is coming to visit me to discuss it. In my house.

<stares round at mess>


magso Mon 13-Aug-12 13:47:49

That sounds positive - I think- though I would not want an expected visit in my (very messy) house!

fuzzpig Mon 13-Aug-12 16:16:13

That was my first thought! She is really nice though.

Today's been a crazy day of phone calls - just got my appointment for an Aspergers Syndrome assessment next month. Yikes.

belleshell Mon 13-Aug-12 16:18:32

Hi Fuzzpig

ive been keeping up with how u are getting on. i too did a phased return to work in my old job and it was through occupational health, infact i never got back to my contracted 30 hours but managed to get back to 24, which i was managing. throughout all of me ME story my biggest fear was giving up work, not only because of the finacial side of thing but because my work is my identity. I have worked hard to get to where i am today. my current post is a drop in grade, but nevertheless A demanding role, and its that that i love. i like to make a difference no matter how small, so giving up would have been devastating for me. I do think if you listen to occupational health they will protect you. i did try to claim diability living allowance but becasue i had to put on my forms that i HAD to make meals for my kids because i was a singel parent i was refused. what they didnt see was the times when my kids where at there dads and i didnt get out of bed for days, and cooking was the last thing on my mind, as was washing (minger i know) etc....

the past 12 months have changed dramatically. i have moved away from where my ex lives to e closer to my family and my partner who now lives with me and helps me sort the kids. this meant i had to find a job (with my sick record i thought was impossible), my son (13) choose to stay with his dad because he was settled in school and didnt want to leave his friends ( he is now over 100 miles away) thankfully my daughter came with me, and i see my son lots. ME as tried its best to ruin my life but i wont let it. stay determined, but accept help wherever and when ever you can.

have you considered applying for DLA for you and your husband?

just a thought

belleshell Tue 14-Aug-12 14:53:36

how is everyone gettin on today. ive had a new referral to ME clinic (i moved last year). i wonder if they will have my magic wand?

fuzzpig Tue 14-Aug-12 16:29:47

Wow that's good news belle, hope the new place will help you.

I'm not so bad today, have had family over who we haven't seen for a long time and don't feel as tired as I expected but I expect I will pay for it tomorrow!

fuzzpig Tue 14-Aug-12 20:11:27

Damn, definitely feeling it now. Not terrible but have that "will be worse in the morning" feeling.

First thing that hurt was the main joint in my left middle finger. WTF?! I usually ache in my bigger joints but one finger seems rather odd confused

Belle hope you don't mind me asking but why did it take a whole year for you to get a referral to a clinic since moving?

Also is there some magic way of finding out if there is a clinic near me - I have googled but can't find anything closer than a 20 min train ride although that's not too bad really.

belleshell Wed 15-Aug-12 10:04:32

Hi Fuzz

it took a year because i have been so busy with everything else and just putting up with things. i was originally referred back in Feb, but the GP didnt send llods results so the referral was refused, i queried it all again last week and it was sent back ( with blood results) and i got thte letter yesterday. i can say i was so suprised it was so quick, my referral to last clinic was 6 months!

as for pain in fingers thats where mine starts, right hand 3 middle fingers ?????WTF indeed..

Do u mind me asking where you live? my new clinic is a 20 min drive too..

they are usually regional.

how did you get on at the doctors today.

I hope you get some answers today!

fuzzpig Wed 15-Aug-12 11:19:17

I am back from the doctors and I'm feeling wobbly and scared. But also amazed and relieved that the appointment went so well.

He asked how I was and I said it varies, then told him that the reason I was there so soon was to discuss the fact that I have suffered these symptoms and more for over a year in milder form. I had looked over my list and my posts on here this morning to remind me what to say, but I didn't even get through them all. He did ask if I thought it was due to my depression or if I thought it was something else, I said the latter. He was also very understanding about why I hadn't seen anyone sooner.

Then he said "have you heard of chronic fatigue syndrome" sad sad sad

I said yes, and wanted to cry partly because it makes it seem so much more real and scary, but partly due to relief that he'd listened and sort of confirmed that my concerns were valid.

So, he's printed off some blood test forms for tomorrow - not sure exactly what there is but I know it includes all the usual ones and some immunology ones. Going back next week to discuss results, and he has actually mentioned a possible referral to the CFS clinic (looks like there is one in my town after all, I'm in West Sussex BTW), I am a bit fuzzy on the detail but I think that he plans to refer me if the bloods come back clear.

My manager is visiting tomorrow, how much of this should I tell her? I want to keep her informed (particularly as the doctor said I shouldn't pin all my hopes on returning to work after bank holiday) but I don't want to say all this about CFS if it turns out it's something else.

ArthurPewty Wed 15-Aug-12 16:05:55

Message withdrawn at poster's request.

belleshell Wed 15-Aug-12 18:21:57

I am so pleased it went well, and it is scary but its better that it all been in your head and thinking you are going mad.CFS is real, it might not be a disease but it can be as debilitating as some... i say this to highlight you have a reason for feeling like you do. what bloods as GP requested, im thinking U+E (to check all salts in your body and kidney function) LFT (to check liver and its function) TFT ( to check thyroid might have added t3 and t4 too) FBC (full bloods to check if your aneamic or have infection etc) CRP ( to check for infection) is there an esr ( check for inflamation).

I would tell your manager that GP as requested more bloods and wants to see you next week, you should know more then. tell her how frustrated you are about your illness and how you miss work but tell her how you have been. Have you ever wrote a diary ie. exactly how you feel and your symptoms, even if you think it is trivial, this will help with CFSclinic. write about your sleep pattern, how you feel after doing anything demanding, if you are tired straight away or later and for how long. even mention the strange finger thing... whatever this turns out to be this info will be really useful, because when your feeling a bit better its really hard ( well it is for me anyway) to remember how crap it is, for me its usually becasue i dont like to think just how crap i am.

keep us informed, and let us know how you get on tomorrow.

take care

fuzzpig Wed 15-Aug-12 18:28:38

I certainly hope it isn't, I hope it's something more treatable! Thyroid tests are included in what I'm having tomorrow BTW, although it wasn't one that he actually mentioned out loud - he is more worried about it being something like lupus, if anything. Glad he's doing lots of tests at once anyway. Not a completely exhaustive list but a good start I think.

This includes a test for Cushings which a doctor in the hospital recommended - we both agree it is extremely unlikely (0.001%ish!) but worth doing since the other doctor had suggested it due to a few matching symptoms. I have to take a cortisol tablet at 11.55pm! <yawn>

belleshell Thu 16-Aug-12 04:46:48

Hi Fuzz, just want to reassure you that if you go to CFS clinic they teach you how to manage, the one i went to on reflection was really really good, they gave us the tool to problem is im in denial still am, i hate the fact i have it, and try to live my old life...the fact im off sick is proof to me i have got it and i need to sort myself out. people with CFS/ME are similar type of people it seem..

before all this was you active always on the go, never said no to anyone, life and soul of party, do mad things like start to clean cupboards or decorate late at night ( no maybe that was me!), did you worry lots, about silly things, house spotless, ironed bedding ( i still do!!) oh the list goes on and on....

the ME clinic i went to taught us how to pace properly, look at trigger factors... i do reflect on these tools from time to time and actually i only iron my bedding not the kids (cruel mother). My problem is finances and work, i cant afford to reduce my hours, i love my job but really its too much.... i wish i could drop 6 hours a week and i think i would cope so much more...ive got alot of thinking to do....

you are having the blood tests, try not to worry about the results till next week. the thing is you cant change the results and they may highlight something simple and treatable, it uses alot of energy to worry and you havent got that engery to spare....

let us know how today goes.

fuzzpig Thu 16-Aug-12 08:08:35

Your description doesn't fit me at all. That's why I kept thinking I must just be unfit - I was never the really active type. I could sit for hours staring into space, although that's more to do with my mental health problems (Aspergers and depression). I enjoyed exercise when I did it but wasn't terribly motivated. My brain, however, is ridiculously overactive, it never shuts up, it drives me crazy. I'm an intelligent person, my brain is the only thing I like about myself, so I think that is my biggest worry. I wouldn't mind being still if I could fill my rest time with books and learning, but I can't even do that right now. Emailed my OU tutor to update her and ask for a longer extension on my assignment - don't even know the question yet.

I guess my previous lifestyle makes it a bit easier for me to rest now and if it was relevant my logical brain would probably enjoy something like Graded Exercise (jumping the gun massively I know, I'm just musing really). I don't think I would be in denial though I can see why as a naturally active person you would find it impossible to accept sad

I am worried about work because that is the one place where I am active. I am really efficient (helped again by my need for logic) and am always the first to volunteer for extra tasks. I'm a different person there. DH went in there the other day and although they are really well staffed, one of my colleagues told him they are really feeling my absence because I'm a "do-er"! Couldn't believe anyone would ever call me that, it really shows the difference between Home Me and Work Me. I was certainly ill before starting work but I wonder if this has made it worse. I would hate to be at work without being the fast worker I usually am. I am paranoid enough without worrying about not doing enough work. I guess that is why I really want a phased return/amended duties.

Feel horrible this morning, I stayed up until midnight to take my cortisol tablet, but ended up only getting 2.5hrs sleep. My sleep gets really fucked up sometimes, it's not like when I was younger and it was pretty much my own fault for getting into bad habits - it's my heart, it flutters and pounds in my chest and it hurts. When that happens I know there's nothing I can do. I try and practise good 'sleep hygiene', I don't even have any caffeine in the house. Really frustrating. I think yesterday my mistake was sleeping in the day - only about 45mins as DH persuaded me to have a rest and I eventually dozed off. Guess I can't do that any more then.

Small question - can pregnancy/birth be a trigger for CFS, in the same way it often starts with a virus? I've been looking back over the last few years, it's difficult as it's foggy. If CFS does end up being the diagnosis I guess I can ask to look through my medical records? I feel like I need to know how it started. I remember having no energy once my second was born. I could barely lift him - admittedly he was huge (nearly 12lbs at birth - I may have developed gestational diabetes but there's no way of knowing for sure) but still only the size of an older baby and I had no trouble with DD at that weight. I hardly managed the sling at all and things like kneeling by the bath or bending over to change his nappy were intolerable. I just put it down to breastfeeding and having 2 children to deal with, and again, blamed myself for being unfit, but now I'm unsure if it was the start of this problem as like work I never got used to it.

I hate all the uncertainty. Glad I get the work meeting over with today. You're right about the blood tests, I will try and forget about them once I've had them in 2 hours time. It is hard though as I have no energy to distract myself! I have 12 days before I'm supposed to be at work and it still feels like nothing even though the last couple of days have been a bit better.

How do you actually rest properly? I read on an older thread that things like watching TV don't count. That's what I find difficult - I can rest physically but my brain does not cope without something to do - but then even reading wears me out. angry

Sorry, mammoth post. blush Hope everyone is as ok as they can be xx

fuzzpig Thu 16-Aug-12 09:59:29

Bloods done. Not entirely convinced they did enough bottles as they only had one of the two forms, good thing I noticed. Only thanks to this thread that I was aware of what to look for! A week until I see the doctor again
- will try and forget about it now.

belleshell Thu 16-Aug-12 10:10:38

Trauma is another trigger, stress, and viruses... my condition certainly got alot worse after a miscarriage, my mum been critically ill and me been so far from home i lived on the M62! between my mum and my ex and kids...

I cant rest that is my prblem, i cant just sit, i need to be doing something so when im like this i make myself go to bed so i cant do anything, like you fuzz my brain never stops, i was up at 4 am this morning writing my will!!!!! (im not sure if my sleep is fucked or i am!!)

the best description i ever had about ME was this

"if your old enough to rememeber cars wth a choke, you pulled the choke out to help the car start and then pushed the choke in when warmed up. But can you remember what happened when the choke got stuck? well thats like ME our choke is perminantly stuck..... we can never switch our mind off, our bodies might need to sleep/rest but our mind is racing on ahead!!"

it made perfect sence to me....

fuzzpig Thu 16-Aug-12 15:59:05

All done, it was fine and I feel fairly reassured. I did say that the doctor suspects ME but it's not definite, and also asked a hypothetical question about reducing my hours permanently (because if this is a lasting illness then there is no way in hell I can manage FT) and it is a possibility (requiring a convoluted application process) which is reassuring. she actually said she was not terribly surprised by my news as she has known other people with it.

Am expecting a phone call from ATOS (hopefully a nicer department than the heartless fuckers who assessed DH for ESA angry) in the next week, who will report back, but we both agreed it will need to be repeated after I have got my blood results as anything before that is just supposition.

Really wiped by the last hour though - was only sitting on the sofa but it was exhausting, talking and listening and writing a bit and trying to take it all in! Thankfully she's given me a few printouts.

No idea what to do with myself for the next week. Well apart from the obvious answer "nothing" angry

Grockle Thu 16-Aug-12 21:59:27

Hello - scanned thread but will read properly in a bit.

Just wanted to post & mark my place so I don't lose this. I accidentally walked 6 miles on Tuesday - I felt really well but didn't realise it was so far. I used to be able to walk 10-12 miles with no problems but I've been exhausted ever since. I'm not coping well with all this but my psychiatrist assured me that it's all fine & they are going through the process of ruling everything out. My bloods were apparently fine - good thyroid function, inflammation bit was a little high again & antibodies (or something?) were borderline but nothing to indicate any problems. I'm too tired to think about this and now seem to have a massively stressful situation going on with my psycho neighbour. Could really do without that. I'm desperately worried about going back to work sad

fuzzpig Fri 17-Aug-12 07:59:22

Hi grockle, I'm glad you've posted again, I was wondering where you were. I'm sorry things are so bad now.

Good thing they are doing lots of blood tests, though it is horrible waiting for results isn't it. Especially when you're in too much pain to do anything to take your mind off it. Do you know what else they are testing for before ending up at CFS? My doctor said if my bloods all come back clear he will refer me to CFS clinic straight away (I think) but I'm not sure if there's tests he might have missed - now that he's actually mentioned CFS I don't feel so bad about googling and maybe taking some suggestions like vit D and B12.

(the 'antibodies' thing may have been ANA and ANCA - they look for particular antibodies or something and can be used to diagnose autoimmune disorders like lupus, I had them as part of my bloods yesterday)

About work. I hear you sad I feel like even if this post viral 'episode' gets better (which I'm starting to think it may do, though it varies a lot), even if I get back to normal, I am still dreading going back because my 'normal' is still exhausted and in pain. I guess it's that feeling that made me realise I might have something chronic as I knew I would never return to work 'refreshed'.

I guess it's hard to keep them updated as a school is closed over summer but does your manager know all about this?

fuzzpig Fri 17-Aug-12 15:10:13

Went out for an hour just walking gently in the woods. Feel better for the fresh air but worse in every other way!

belleshell Fri 17-Aug-12 16:38:26

ive been to town for an hour with kids, after limping like an old lady for last half hour we came home!!!! im f**ked!

Grockle Sat 18-Aug-12 07:36:24

My line manager knows but not how much I struggle. I'll go back in September & see how it goes but I've managed barely anything over the holidays & this is the easy bit - all my planning etc. I usually love it.

I hate the old lady feeling. It's ridiculous. On the plus side, I have made a pretty bag for my walking stick grin

fuzzpig Sat 18-Aug-12 19:08:13

Do you think your boss is sympathetic to it? I know so many people still think it's all in the mind. I know my manager is understanding but I'm a little unsure whether she thinks people are kind of in charge of getting themselves better (ie that resting too much is bad and deconditions you) which makes me a bit scared in case I don't get better soon.

I don't feel like I'm getting better sad I know I was right to think this is more than a short post viral thing. I got stuck halfway up the damn stairs again. I am so so scared and so angry

belleshell Sat 18-Aug-12 20:00:54

((((hugs fuzz))))) i really struggle because as much as i am living this nightmare i sometimes think is it all in my head!!!yes i completely emphatise with others who live this hell....does that make sense! if this is an acute phase of a chronic condition, 4 weeks is no time..... one peace of advice i was given is live one day at a time, tomorrow may never happen, and we cant change what does happen tomorrw through worrying today!!! for some one who worried when i had nothing to worry about this really as helped me over last few years,


fuzzpig Sat 18-Aug-12 20:32:09

Thanks belle, just aaaargh tonight as it seems so endless (and I feel ridiculous saying that when compared to the rest of you it's no time at all), even reading the bedtime story felt like murder, I could barely talk at that point.

Counting down the days til I see the doctor but I don't know if I'll feel any better when I know anyway.

If only I lived in a house with no stairs. They are my worst enemy at the moment angry

Grockle Sat 18-Aug-12 22:33:59

Yes, I often feel like this is all in my head. BUt then I stand up & hobble for ages before I can stand up straight & I limp or my legs just won't support me. I don't think I can imagine that nor the pain that makes me cry? But since they never find anything wrong, it feels like it must be. Honestly, if I hadn't lost my marbles already, I really think this would do it. It does feel so endless.

It;s so hard to go from being a very active person to being someone who often struggles to function. I am also angry, frustrated, very disheartened and scared about the future. But it certainly does giv perspective, doesn't it? I always used to be a bit of a worrier but in the grand scheme of things, my worries were nothing compared with this.

And yes, stairs are a nightmare.

I'm going away to the Yorkshire Dales for a few days - it was meant to be a walking holiday since we'll have no children with us. We thought we'd be able to do some longer walks than we usually manage with 3 DC under 7 but we're now trying to work out which walks are short enough and suitable for wheelchairs angry sad

belleshell Sun 19-Aug-12 02:28:04

well the weather is grand up here in Yorkshire at the min, dont push urself too much, i did a bike ride on ours 4k thats all down hill....and thats exactly where i went not long after,..........down hill...maybe you could take the time just to recoup a little..i do however know the guilt of saying to other half at 8pm im off to bed, or you go ill stay here is hard to deal kids have gone to their dads today, and whilst it was a sigh of relief (only so i can rest) i feel for my partner because im still knackered still in pain and still cant do back to work monday..mmmmthats gonna be fun!

fuzzpig Sun 19-Aug-12 08:02:54

Good luck at work belle. Is your boss understanding about your health?

Grockle I'm sorry you won't get to do all the walking on holiday. I now understand what DH feels missing out on everything as he's on crutches, we do pretty much nothing now - DD's first proper school holidays and she has spent most of it stuck indoors. I hope you can find other ways of enjoying your time up there, are you into board games and things like that? I know it's no substitute for missing out. I've always wanted to do walking holidays.

It makes me angry that your doctors keep saying they can't find anything wrong. What they mean surely is that they can't find any other explanation for your symptoms - and that is when CFS is diagnosed?

I still think it's all in my head sometimes or basically that it's my fault for becoming 'deconditioned' (even though I'd never think that of someone else). I think it's only through talking to all of you that I am able to contemplate this as a real illness - ironic that we can all reassure each other and yet still can't have faith in ourselves.

We actually just got accepted onto the local housing register - I really wish we'd done this a couple of years ago when DH first got hurt. If I do get diagnosed I'm going to ask the council about special adaptations - if you have a disability you can apply for bungalows for example. No stairs! We considered doing this at the start but decided against it as DH technically should get better after surgery. But then I worry about ending up somewhere far away from the school for example, and not being able to handle the walk. I know I'm thinking too far ahead again but I think it's the only way I can deal with this - it is happening so fast, three months ago I was just thinking I was tired/run down, now I'm seeing a totally different future. Maybe I'm being melodramatic - I just can't imagine feeling better.

belleshell Sun 19-Aug-12 19:37:42

Hi Fuzz, the housing situation is really postive, i can say you will have better days, never brilliant but better, but saying that about 3 months ago i had 1 day where i felt like me, i had no pain, brain fog, fatigue was fantastic, i did think well it must have been all in my head, then bam next day i was crippled for that one day it was fantastic.

as for work, i havent thought too much about it, my plan is to take it as it comes which is easier said than done cos once im there im in the numbers..... my colleagues seem understanding, but its a new job, and im not sure for how long they will put up with me working reduced hours before something is done.that scares me becasue finacially i cant have reduced with my new learnt skill of one day at a time im not thinking aboutit (much)!!

Grockle........i would contact your nearest ME clinic and speak to them direct, ask to speak to the occupational therapist, or the physio, explain your situation and ask what is the best way to get reffered or do they take self referrrals.... they will assess you before they do anything else and then make a diagnosis if they think its ME then it will go from there... or they will give advice on how best to get reffered....working for the NHS i know sometimes (most of the time) you need to take control of your health in your own hands......


fuzzpig Mon 20-Aug-12 16:36:01

Not sure it's so good housing wise, rules are really complicated and either way I expect we will be waiting a couple of years. But I am glad we are finally on the register.

Feel really sad today, going stir crazy. Left hand's knuckles and wrist really hurt as do my left ankle, knee and hip hmm unfortunately in preparation for DH's operation, he has to sleep on a higher bed due to issues around getting in/out. Specialist told him to inflate our double air bed under our mattress. Tried it out last night and it's hell. Hoping I can get used to it as the alternative is I sleep on the sofa for a few months. Which I don't mind short term but it seems more important than ever that I get a decent night's sleep when I go back to work.

Totally failed on the 'not thinking about test results' thing too. I only remembered today that another possibility he mentioned was some autoimmune thing called something something rheumata <helpful> any ideas? Also wondering if I should ask for more tests. He did loads but not a complete list I think. What if he refers me to the CFS clinic but they send me away because I've not ruled out enough other stuff? Can that happen?

<tells brain to shut up>

belleshell Mon 20-Aug-12 17:27:58

rheumata sounds like rheumatic, which could be arthritis based, but im sure this would have shown up in some of blood tests especially those looking at inflammation etc.... i actually think your GP is doing all the right things and if like he said tests are ok then he will refer on to CFS clinic...he must have done enough for him to be happy enough he as ruled out everything...( limbo is a really shit place to be.

what pain relief do you take? this is another area CFS clinic can help with making sure you get the meds that help your symptoms.

is it tomorrow you get the results.?


fuzzpig Mon 20-Aug-12 17:47:36

It's Thursday so still a few days to go. Day before that I have a smear test and I'm terrified, I have diazepam for it because I can't cope with any gynae procedures (I was abused as a child).

Painkiller wise at the moment I am taking an anti inflammatory called Naproxen. He prescribed this when he first said I had the viral myalgia. When I went back last week he didn't ask if they'd been working as we were mainly speaking about the longer term problems, but I guess he wants to see what's going on before fiddling about with medication. They haven't been working much at all except for headaches. I was actually referred to a headache specialist in the neurology clinic a few months ago due to a phase of what I would describe as cluster headaches, but now I wonder if it's just part of the bigger problem. I had Diclofenac for them which took the edge off a little.

belleshell Mon 20-Aug-12 18:17:08

You really have been through the mill havent you! is the smear been done by someone you trust ie practice nurse....if so just explain it to them...

i too went to see a neurologist for headaches, i was diagnoised with parapalegic migraine ( it wasnt it was my ME!) if all blood tests are normal maybe ask for pain relief for neuorpathic pain such as amitriptyline ( to start with) i take and anti depressant duloxetine that is prescribed for the pain, i know if i havent had it and i take amitriptyline when pain is bad, unfortutaley it makes me drowsy...this could however help you with your sleeping in a small dose. day to day i take paracetamol and brufen, and co codamol if its getting to much ( this doesnt help my constipation {emabrrased face}) but does ease the pain.

how has the rest of today been.......... ?

fuzzpig Mon 20-Aug-12 18:28:54

Unfortunately it's being done at the partner surgery as there were no appointments at mine. I did ask the receptionist to note that I will be slightly sedated due to being very scared, and she did write it down.

Not done anything else today. I'd felt better for a while thanks to having some time away from work (I love my job but was getting quite stressed) but depression is definitely creeping back in. Not taking any ADs though as I'm waiting to see a psychologist. After years of virtually no doctors visits I am suddenly drowning in them confused

stressedHEmum Mon 20-Aug-12 18:33:28

Fuzz, I take citalopram for the nerve pain and fatigue - it takes a while to kick in but it definitely helps. I also take diclofenac and co-codamol (500/30) which help a bit with muscle and joint pain.

My GP reckons the only thing that works in any way at all to ease the symptoms of ME is an AD - so it might be worth trying it.

fuzzpig Mon 20-Aug-12 23:33:53

Thanks, I will ask at the doctors. I have a feeling he might still want to wait (Aspergers assessment with the psychologist is 7th Sept so not too long) or maybe even leave it to the CFS clinic, although I guess it depends how long I have to wait for an appt if I'm referred. DH takes 28 pills a day, we are already like a damn pharmacy!

Should I ask about supplements too? I guess it's a controversial topic.

Went to have a lie down while the DCs had their bath, fell asleep at 7 blush annoyingly now I'm awake (obviously), I hate it when that happens!

fuzzpig Wed 22-Aug-12 10:41:19

Smear test was actually fine. Diazepam is awesome - quite tempted to ask for it as a regular sleeping tablet. Do any of you take anything to help you sleep? It's driving me nuts not being able to sleep some nights.

belleshell Wed 22-Aug-12 13:11:20

i take zopiclone, it doesnt make me groggy in the morning..... i still dont sleep well but dont sleep at all without it....

i so glad your experience wasnt too disturbing...

ive managed 3 mornings in work this week, im feel quite well considering, still need my afternoon nap>......ffs im 39 not 89!

fuzzpig Wed 22-Aug-12 13:18:25

Thanks I think I have had zopiclone before. I'll ask about that. Some nights I sleep fine, others I just know I'm not going to sleep, and I can't figure out a pattern at all.

I don't sleep in the day now as it just seems to mess me up further. I'll try and rest regularly, but not sleep.

grimbletart Wed 22-Aug-12 13:21:50

OP - I'm in a rush so haven't been able to read the whole thread, so apologies if this has been covered, but among other things ask if you have had a folic acid test. Docs bang on about vitamin B12 (and it is very important) but I don't believe they routinely test folic acid.

Someone in my family became very ill with symptoms like yours plus memory loss plus tingling and feeling like he had horrible flu tiredness but without the temperature. It went on for months and months.

He kept being told all tests were normal, was given a diagnosis of exclusion i.e. CFS/fibromyalgia until a different doctor ran all the bloods again and included folic acid. He had a reading of under 3 i.e falling off a cliff level. They said it was "very low" but did not think that was the cause. He was given folic acid and some of the symptoms resolved within days (the memory loss for example) and the rest gradually went away over weeks. Because he had been ill for so long it did take a time to recover.

I did a lot of research on folic acid and apart from the well-known pregnant woman problems research on deficiency is abysmal and many docs seem ignorant about it. Mostly they worry that taking folic acid can mask B12 deficiency but they don't put any emphasis on folic acid deficiency itself.

Just a long shot, but could be worth raising it.

fuzzpig Wed 22-Aug-12 13:33:37

That is a really good point, I'd never realised it was that important (although a lot of fortified foods have FA in don't they? Cereal etc?) so that's one to ask about.

I keep wondering, should I just get a load of supplements and start taking them now, or wait until I've had enough tests first.

fuzzpig Wed 22-Aug-12 23:43:06

Oh FFS. Is diazepam supposed to be a painkiller? It seems to have worn off now and I can't sleep, but also while today was relatively pain free I am now back to the massive aches in my joints. WTF. Probably better though as I'm seeing doctor tomorrow. Have to take the DCs with me as DH has an ESA assessment at the same time, don't know how I'm going to manage with the buggy (but preferable to chasing round after tear away DS)

fuzzpig Thu 23-Aug-12 17:01:41

I seem to be hogging the thread again blush

Am back from the doctors. Most blood results were back, and normal, barring slightly low iron and slightly high ESR - he said these are both possibly due to having been unwell for ages with the chest infection (he reckons it was actually flu) and will test them again in a little while. The immunology results aren't back yet as they get sent further afield.

So he has referred me to the CFS clinic already (it's the one at Kings or St Bart's, I misunderstood and there isn't one in this town). He said he will call me if the immunology ones show anything and will switch the referral if relevant (eg to rheumatology). He said they might insist on more blood tests first so I'm not really sure what's going to happen.

He was quite clear that he doesn't think it is related to depression, he said as I've had depression for so long he trusts me to know that it's different. Interestingly he also said it is unusual for depression to present in different ways in the same person over time. I mentioned the diazepam and he is understandably reluctant to prescribe it as it is addictive, but wouldn't rule it out completely as it helped with the pain. He's given me zopiclone to try as and when.

Manager visiting tomorrow so I'm going to discuss phased return as I think I could go back to work next Tuesday as planned but no way could I handle full time straight away. I am worried though as my 'target' is not to have any more absence in the next month, what if I get worse again?

Grockle Sat 25-Aug-12 12:27:55

Hello - I've been away for a bit & have been feeling much better. I even managed proper walks - 5-6 miles which I could not have done several weeks ago. I couldn't even manage a 2 minute walk to the shop! We have a busy couple of weeks before I go back to work. I'm having a massive panic about that because I'm terrified I'll become ill again & feel very unprepared for my return.

Interesting about folic acid - I shall google. My ESR is still slightly high but nothing worrying.

Fuzzpig, you sound like you've had a really rough time - I think our backgrounds & some of our issues are similar. I've had diazepam for my back when it was really bad. It didn't stop the pan but made me sleep which was lovely. I've also had zopiclone which I love but my GP is very reluctant to prescribe either so I have to cry and beg for several appointments before he'll allow me to have 7 days worth of drugs.

Anyway, hope everyone is ok. I'm off to a wedding this afternoon. I'd really prefer to stay home & sleep but I can't!

fuzzpig Sat 25-Aug-12 13:36:30

Hello grockle, glad you're feeling a bit better and managed to do some walks! smile I understand why you're worried though, so I hope you can take it reasonably easy (!) until you go back to work. Surprised they won't give you zopiclone without a fight, I thought that was fairly readily prescribed. I have two weeks worth but haven't tried it yet as I am saving it for the nights I am not naturally sleepy. I have nearly run out of painkillers so I don't know what to do about that. I totally forgot to ask. Is your doctor as reluctant to prescribe other drugs? He sounds more like an unsympathetic arse each time you mention him sad have you thought any more about seeing somebody else?

I am going back to work on Tuesday - I had another visit from my manager (and a colleague to 'accompany me') yesterday. It went well, we discussed a few things including very hypothetical issues like redeployment. I did get upset though, I cried a bit just because everything is getting on top of me but they were really lovely. I said I was feeling better as I'd had a better couple of days but I'm not sure she's convinced I should be going back yet. She was very reassuring about the prospect of further absences as I was scared about that, she said she does understand it is sometimes unavoidable and that we will talk every week to see how I'm doing.

I will be doing 4hrs a day tues-fri next week, which includes a 15min break (and hopefully getting a lift each way with a colleague who lives nearby) and then the idea is to gradually increase it so in five more weeks I will be back at FT hours. I will also have slightly amended duties to avoid heavy lifting and long periods of standing. But I will have to gradually get back to doing those too because they are an essential part of my role. If it's felt I can't, then redeployment would be considered. sad

fuzzpig Sat 25-Aug-12 13:37:36

Hope you manage to enjoy the wedding, BTW. Do people there know you aren't well? Hopefully they will understand if you have to take it slowly.

fuzzpig Sat 25-Aug-12 16:46:51

I managed an hour in town <waves pom bears poms>

Feeling it now, am not so optimistic about work. It was horrifically crowded too and I don't like that.

stressedHEmum Sat 25-Aug-12 17:40:38

Hope you have a fab time this afternoon, Grockle. I'm glad that you're feeling a bit better. Don't overdo it though. It's easy to feel a bit better and try to do some stuff only to find you get knocked straight back down.

I've had a grim few days. On Wednesday I had a dental check up and then had to get a tiny bit of shopping. In the evening, I had to visit a friend who is in hospital longterm, another friend and I go every Wednesday. I've hardly been able to get offmy bed since. Exhaustion, muscle pain, nerve pain, head ache, joint pain, sore throat, irritable bowel, eyes not working, confusion and damnable muscle shakes. I can't even go to visit my dad today on his birthday. Yesterday, I couldn't even hold my own cup of tea.

I am so fed up with this whole thing. Sorry to be a whinger.

fuzzpig Sat 25-Aug-12 21:49:34


Totally agree about getting knocked down. It is like one step forward and two steps back isn't it. xx

Grockle Sun 26-Aug-12 17:36:34

Wedding was lovely, thank you. I was there with DS and we didn't know anyone else apart from the bride & groom so we didn't stay very long. I was worn out too. It's interesting that I've been home for 3 days and feel achey and tired now but was fine when I was away. It seems to be daily life that wears me down - the rushing to get to places, constant thinking about what I need to do, what to cook, etc.

Stressed, how are you today? I get so exhausted that I can't hold my own cup. I find it quite embarrassing & it makes me feel really pathetic. I really hope you've been able to rest & are feeling a little better today.

How's everyone else?

stressedHEmum Sun 26-Aug-12 19:42:24

Glad you had a nice time, Grockle. I'm a bit better today, thanks.I've actually managed to get up today, so that's an improvement smile The daily grind does really wear you down, even things like holding a conversation can be too much. I have a planning meeting tomorrow night with my Mission and Outreach committee and I'm dreading it. I really enjoy them because we are all good friends and committed to the work, but it just completely duffs me up for days afterwards.

fuzzpig Sun 26-Aug-12 20:03:46

Do they know how much it wears you out? Maybe they'll be easy on you if you explain you're having a bad time.

Grockle Sun 26-Aug-12 20:40:19

Nightmare, isn't it? When simple things like meeting people you know and like is so shattering. Try to take it easy.

Fizzpig - I was reading another thread earlier and can't look at you in the same light any more - I am sniggering about it now. grin

fuzzpig Sun 26-Aug-12 20:46:14

Would that be the ridiculous things you do with OH thread by any chance grin

(I hope it is, otherwise I've just doubled my shame...)

Grockle Sun 26-Aug-12 20:50:11

Yes grin

<wonders what else Fuzzpig has been posting about...>

fuzzpig Sun 26-Aug-12 20:54:34

Thankfully nothing in that league... at least I don't think so <racks brains>

Certainly cheered me up anyhow! grin

stressedHEmum Mon 27-Aug-12 09:20:29

OOH!, I haven't seen that thread, must go and look for it.

The meeting will be fine, fuzz, it's just that any kind of "socialising" wear me out completely. Having to maintain a conversation or engage my brain is just a bit much for me. The thing with my M&O committee is were all in the same boat really, I have my ME, another has terrible RA (replacement joints etc.), another has thyroid problems amongst other things and another has mental health problems and a host of other things as well - and we're supposed to be in charge of turning the church aroundgrin

We're having the meeting in one of our homes tonight so that it's a bit more social because we all need a bit of a lift at the minute. It's a weird felling to be looking forward to something but dreading it at the sametime.

fuzzpig Mon 27-Aug-12 09:31:21

I know what you mean! I have always felt tired and overwhelmed by any socialising, but mostly mentally - never understood why until I realised I have Aspergers. Now I feel worse physically of course but have really enjoyed having visitors these last two weeks as I've been really lonely most of the time. I know being back at work will be mentally tiring again though. I'm tempted to ask if I can use a spare room to take my breaks - I do love chatting to my lovely colleagues but I have a feeling I will need a few minutes silence while I'm still recovering.

First day back tomorrow. Have been up in the night with a bad tummy (thankfully wasn't sick) and feel really horrible now. Was planning to nip into town again today just to see how it goes but I don't know now. I think if I do go I'll have to reward myself with new shoes - that's the rule, right? grin

fuzzpig Wed 29-Aug-12 17:18:38

How is everyone?

I've been back at work for two days now. Yesterday was good, did really easy stuff. Felt ok afterwards although I nearly fell asleep soon after getting home. My colleague is driving me to and from work this week which helps a lot as I don't have to worry about bus times etc.

Today not so good, was moving stuff around a lot more - not heavy lifting as I'm not doing that for another couple of weeks, but lots of smaller stuff which has taken its toll. Feel very achy indeed now and can barely stand up. I am expecting a phonecall from occupational health tomorrow to discuss phased return (they were supposed to do this last week before I went back! angry) and I don't know what to say to them sad I really want to be back there but I hurt. I just hurt. I've only done 4 hours a day FFS.

Not due to see the doctor again but I've got an appointment with the neurology dept tomorrow due to the headaches - I got referred a while ago and haven't had anything as bad as the headaches I was getting then, so I hope they won't think I'm wasting their time. The doctor thinks the headaches are related to CFS so I don't know if they could even do anything!

Grockle Wed 29-Aug-12 18:59:39

Oh Fuzzpig... well done for going back to work... sorry it's so hard. I think you just need to tell occupational health what you said here - that you want to be back but that it hurts. I'm not sure what else you can do.

I'm back at work next week - 3 days relatively quiet then 1 hard day then the weekend. I'm hoping I can manage it although I haven't been able to do any planning because my mind is so frazzled so I'm off to a bad start. I don't really know what I can do about it. I can't do anything that requires any concentration or deep thought but it is great to feel physically better than I was. I'm very tired at the moment but not dropping off easily which doesn't help.

How is everybody else?

fuzzpig Thu 30-Aug-12 06:45:46

I know you're right grockle, I'm scared to tell them the truth though, they might send me home again. But I know my manager will ask me how I am when I arrive today so I will endeavour to be honest and say I hurt again. Longer day today as I've got the hospital appt straight after work. It's also my DS' 3rd birthday, but we aren't doing anything for it today. I haven't managed to get out of bed yet.

Sympathies with the frazzled brain. I've just got another extension for my current OU assignment and it doesn't seem long enough, and I've been panicking about my exam. It's frustrating, I'm normally really good at all this academic stuff, and now sometimes I can't even string a damn sentence together.

Can you ask again about the zopiclone (maybe a different doctor)? I've found it pretty good so far, I'm making sure I don't take it every day though as I don't want it becoming a habit.

With the planning do you mean lesson planning? Are there any plans from previous years that you can use/adapt to make it a bit easier?

fuzzpig Thu 30-Aug-12 16:08:14

Back home after another tiring day. I hadn't really thought about how physical most of my job is - we've eliminated the two most obvious tasks but actually most other things are manual too and it is wearing me out. I did say I am struggling to my manager and she said it is to be expected confused I'm not really sure what she meant, yes I expected to be tired but not so much as this. I am still a bit paranoid about how other people see CFS, I was talking to my colleague whose dad and sister both have it and I'm really glad there's someone at work who understands, he said his family have had a lot of people thinking they are lazy (that's what I'm scared of) and people saying "oh but everyone gets tired...".

Occupational Health are recommending I stay on 4hr shifts next week instead of 5 - I'm glad they've said that. Saw the neurologist and he said the headaches are related to the CFS. He is writing to my doctor to prescribe a low dose of amitryptiline which I have to take every night.

I was also wondering if anyone knows of any good and recent books on the subject of CFS? I browsed at work today but all our stock is quite out of date, which makes me think it's a bit pointless reading it.

fuzzpig Fri 31-Aug-12 15:20:24

Oh bollocks, that brilliant doctor I keep mentioning who actually listens and all that stuff... turns out he is leaving angry sad

awaywego1 Fri 31-Aug-12 15:38:18

Just delurking here to ask a question blush Hope you are all doing ok.
Won't go into too much detail but I've had ME diagnosis since I was 17-I'm 32 now. Over last 2 years I have been experiencing more and more neurological symptoms; nerve pain, feeling disorientated, clumsiness, trouble focusing with eyes, twitching etc. I had a really bad episode for around a month recently went to drs and they just say its the ME. All bloods ok apart from low vit d last year which is ok now. Anyway, I'm wondering I I should be pushing for a neurology referral? Or whether I should just accept it is the ME?
Any advise greatly appreciated. I'm feeling quite fed up about it all tbh.

fuzzpig Fri 31-Aug-12 17:40:41

I am a complete newbie to all this but from what I've read online it seems like when you are diagnosed a lot of doctors are too quick to write everything off as CFS. I think as things have changed (quite dramatically it seems?) you need to push for a referral.

awaywego1 Fri 31-Aug-12 20:38:46

Thanks fuzzpig-it seems impossibly hard to be taken seriously once you have this diagnosis-I'm sure if my leg fell off they'd blame that on the ME too grin

belleshell Fri 31-Aug-12 21:04:34

Defo push for referral! if its your ME fine if it isnt then at least something might alieviate yor symptoms.

Hi Fuzz, glad to hear work isnt impossible...just take it easy, and dont rush back to longer days, you might end right back at square one.

fuzzpig Fri 31-Aug-12 22:49:11

I feel like I'm nearly there belle. Square one I mean. Or like I'm getting flu again hmm I can't stop shivering tonight and my neck hurts although the latter might be thanks to being prodded by the neurologist!

Just found out DH will be having his operation in 3 weeks time - good news of course but I'm really unsure how we are going to cope with it all at once!

belleshell Sat 01-Sep-12 10:48:11

u will cope cos you have to just dont put too much pressure on yourself.....good luck. how u feeling the nights after zopiclone?? im afraid im addicted! but as i see it it helps me get by without it i wouldnt sleep at all then i couldnt function.wrong ideal but works for me!

fuzzpig Sat 01-Sep-12 11:27:46

The zopiclone is ok, I'm not taking it every day. I am finding that when I don't take it I wake up early so maybe I should take it daily. Neurologist said I have to stop taking it when I have the amitryptiline though.

Work people said they don't want to put pressure on me but I feel under pressure. They are being pretty insistent about me doing the harder stuff from next week - the main thing I can't do is stand at the self-checkout things, they are getting me a barstool to sit on which will help but when you actually help customers you have to stand up/move around anyway so not sure how much it'll help. I can't even do the basic stuff without hurting (shelving/tidying) but I'm too scared to say so as if I can't even do that then there is nothing I can do.

Thanks to DH's surgery I have 3 more weeks of phased return (1 week each of 4hrs, 5hrs then 6hrs a day) then 2 weeks completely off, then maybe 4 weeks of reduced hours while DH recovers. So I have 2 months before going back FT. I have started a separate thread about it in AIBU and have had lots of advice about asking for help from places like homestart.

Why do they call it chronic fatigue, it doesn't describe the pain at all, it makes it sound like just being tired hmm

Grockle just wanted to say good luck for returning to work next week, will be thinking of you xxx

belleshell Sat 01-Sep-12 20:45:32

if only it was just fatigue!!!!! your right the pain is so distressing, i hobble about like an old lady, i know im nearly 40 but.......

Im at ME clinic on wednesday just hope it is of some use>

fuzzpig Sat 01-Sep-12 21:06:31

Good luck belle, here's hoping they can help! smile

My arm is currently in a makeshift sling hmm from where I pulled it last weekend by the grand action of... picking up a bag. It's worse now. Dammit. No idea what to do about that on Monday.

Grockle Sun 02-Sep-12 22:48:08

Thanks fuzzpig. I'm extremely shivery too. I don't understand why I have goosebumps when it's 20 degrees out. Terrified about work - I'm doing a bit tomorrow then a proper day on Tuesday. I'm relatively new to my post (well, this is my 4th year so not so new really) & there are no old plans to adapt.

After a good couple of weeks, my legs hurt so much today that I needed my walking stick. I hate this & feel like i zm attention seeking or something. The DC were doing impressions of us yesterday & for me, they hobbled around moaning 'ohh, my legs hurt, I can't walk, my legs hurt...' etc blush

Sorry your good doctor is leaving, FP. Is there another good one you can see?

fuzzpig Sun 02-Sep-12 23:06:27

Oh grockle that must have been hard to see (your DCs I mean). DD often talks about the past by framing it as "before daddy hurt his back" - it's so sad sad

I worry about being seen as attention seeking too. I felt like a fraud today as actually while family were here I felt pretty much ok, I'm now in massive pain again (my arm especially angry). I don't want people to think I am just making all this up because when they see me I am fine. It's such a misunderstood problem! My manager said I'd feel better while I was distracted by working, yes that may be true (or not, as it turned out) - but it's afterwards that you suffer. I don't think people get that. Maybe because for 'normal people' they do something difficult and they are tired, then they get over it, but for those with CFS, they feel it the next day and then some.

I was wondering about whether people with CFS are more sensitive to weather changes? Just a random musing. I'm waffling now and really have to sleep. Dreading tomorrow, I just don't want to be there, I love it so so much but it will hurt to do anything. My manager is away for two weeks and I haven't even spoken to my line manager (who will be dealing with my phased return in her absence) about this yet so I've no idea how she will be.

You have probably all read it but there's a great article on "" called "spoon theory", google it if not, I just reread it yesterday and I've been thinking about how many everyday things are now 'spoons'.

fuzzpig Sun 02-Sep-12 23:08:23


No idea about doctors btw, nearly cried when I found out mine was leaving blush - seeing one I've never heard of next week so we'll see.

Really must sleep now xx

fuzzpig Mon 03-Sep-12 16:44:40

How was work for you grockle? I got through my shift with a few tears (in private), didn't really get to see my line manager so couldn't discuss it.

belleshell Mon 03-Sep-12 19:58:11

hi fuzzpig, and grockle........ work is bloody tough isnt it... at some times my life is work come home then bed, day in day out......... and fuzz i used the spoon theory to explain the my ME to my kids, they actually got it, now my daughter asks if i have enough spoons to take to park or go shopping which is tough, but on other occasions i can use it and say i have 1 spoon, what shall we do with it.

at least we can come on here and share the crap we face day today....

fuzzpig Mon 03-Sep-12 20:36:53

I really want to use the spoon thing (so cute that your DCs use it!) to explain it to colleagues... feel like it might be a bit soon though. Just a feeling I've got from my manager when I've been explaining things - like they think I'm enjoying it and am a hypochondriac? Maybe I'm paranoid. But that's the way life is now isn't it, heck I'd be totally screwed if it wasn't for the Internet, I wouldn't have the faintest idea what was wrong with me or how to cope with it or how to approach doctors etc - if it weren't for this thread I would be totally alone.

belleshell Tue 04-Sep-12 21:40:22

when i was diagnosised i sent my close friends and family the patient uk information leaflet on CFS........some of em thought i had lost the plot... as for work, i told them about the spoons in aroundabout way by telling them i had to explain it to the kids and this was how i had explained it..i said it in general conversation, and didnt make a fuss, i still feel they dont get it but im lost what to say without sounding like a hypercondriac!!! so i have stopped trying.

ME clinic for me tomorrow lets see if this sheds any more light on how to engage others!!!

Grockle Thu 06-Sep-12 21:59:45


Work has been ok for me this week but it's been an easy week - Monday off, Tuesday & Weds in meetings so sitting, listening all day (dull but not physically or mentally taxing) and today was a quiet day with the children. I'm off tomorrow and feel quite pleased that I've managed a whole week (well, sort of). Next week will be interesting as it's a proper work week - all children in every day, no breaks or quiet times. My back hurts a lot today but nothing else. Also, DP has been home all week so done all the cooking which has helped enormously.

I love the spoons analogy. I might use that with DS (& DP who is actually quite supportive)

How was the clinic, Belle?

fuzzpig Fri 07-Sep-12 08:23:49

Glad to see you back grockle and to see that your first week has been good smile

I'm off today as well! Working tomorrow though, 4 hours again. Saturday's are much easier though and more relaxed even down to dress code. Next week I'm doing 5 hours a day. Lots to do today including my Aspergers assessment!

Hope all is ok belle and that your appointment was helpful!

fuzzpig Fri 07-Sep-12 08:24:26

(why was there a rogue apostrophe in my Saturdays? blush)

belleshell Fri 07-Sep-12 09:15:01

Hi Grockle Fuzz and all

I too have done a full week....and what a week, monday was nice tuesday i was presenting at a conference so very nervous but got throu it wed ME clini pm and a full day in work yesterday ( i dont work fridays)

ME clinic was an assessment, and actually quite theraputic just to talk it all throu again with some one that actually understands ME. the outome was that i have been referred for CBT. but the Occupational therapist that assessed me feels i still havent ome to terms with the fact i have ME. in fact i am in denial, so i need to learn to accept my condition, before i can learn to manage more effectively.

Main issue is i dont take breaks my day is non stop from 0700 till 1800 when i physically cant do much more.

i need to take breaks through out the day to avoid this boom and bust life i live!!!!!


i have been given the name of Andrew Thompson ( i think you can put into google and he has a few free relaxation downloads) im waiting for my son to do it im technically incompetent... so lets see how this goes...... have u got nice things planned for weekend!

fuzzpig Fri 07-Sep-12 09:31:14

CBT sounds good belle. I have had it before and may well have it again sometime soon. Did you discuss any physical approaches too like changing meds etc?

belleshell Fri 07-Sep-12 13:46:14

my medication seems ok although she did suggest taking something like pregabalin for pain rather than the odd concoction i do. however im happy with what im doing pain wise, and dont want to take anything on a regular basis. Sleep was the other issue and she stated zopiclone long term isnt the answer which i know but i am in no position atm to stop that, no zopiclone = no sleep for me. I am happy about the CBT i just need to accept this bloody horrible diagnosis!!

magso Sun 09-Sep-12 10:02:24

Hi Belle, I am a few visits into my CFS clinic visits and my first task was to get control of the boom and bust cycle. I thought I was already pretty good at that having struggled alone for a couple of years before I managed to persuade my GP to refer me. The most useful thing was to realise I struggle with people (especially family and work) thinking I am lazy (as people do). It has changed my attitude -I need to rest to be able to function, so resting is part of my treatment IYKWIM. It is part of accepting the illness. It is so good to speak to someone who understands.
I was given Amitryiptaline very low dose. At first I did not think it made any difference , but slowly slowly my sleep has improved and with it everything else. I still have trouble getting to sleep but I am not usually kept awake by pain. The specialist who diagnosed my CFS ( before I could see the CFS team) seemed annoyed that my GP had not thought to try me on meds for neuropathic pain.
Good luck with 'coming to terms ' with your ME. Although I wonder if we ever really fully do!
It is interesting that many of us have mildly raised ESRs and ANAs in our blood tests. I wonder what it all means. Perhaps just evidence our bodies are struggling. Any one else with raided eosinophils?

belleshell Sun 09-Sep-12 14:11:18

me i have had raised eosinophils but always just put it down to the season etc!! mYBE THERE IS SOMETHING IN THIS?? and thank you magso for you message, i really do stuggle, yesterday my little girl was ill, and as much as it was terrible she was ill and in bed it was arelief i didnthave to do much all day, my legs are killing atm!!! i have a full week of work ahead and really arent sure how i will cope!!

Fuzzpig good luck with the assessment!

fuzzpig Sun 09-Sep-12 15:07:53

Assessment didn't happen!!! angry waited an hour and then they cancelled it.

Doing some decluttering today, didn't really have a choice as my parents visited and they brought loads of stuff, and we are going to the tip later, but I'm really worn out.

DS has his first day at nursery tomorrow! shock

Grockle Sun 09-Sep-12 21:21:44

How annoying Fuzzpig.

I had a group of elderly people round for afternoon tea today and i realised that on a bad but not terrible day, I hobble like my 102 year guest. I'm like her now - what will I be like in 70 years?

I'm not sure what my amitriptyline does, if anything, but I take it religiously for fear that I'll feel even worse if I don't take it!

fuzzpig Mon 10-Sep-12 16:29:45

Hope you're feeling better today grockle and that work was ok. Sorry about the hobbling sad

I am coping a bit better with work now although today DH and I then picked up the DCs and it has totally wiped me out.

Trying to figure out the 6 weeks recovery period for DH's operation, so working out work times, school runs etc. Think I'll need some help with school runs when I'm off as I don't think I can cope with 3 lots each day, but I don't know if anyone will be willing to help out if I am actually at home anyway, IYSWIM.

belleshell Mon 10-Sep-12 19:22:02

oh no fuzzpig have they rearranged assessment. i cant believe they let you sit there an hour before cancelling!!!!!

bye the way what does IYSWIM mean??

fuzzpig Mon 10-Sep-12 19:56:47

I know, I hate being so unassertive, I wish I'd had a go at them about it because they deserved it, but I just went outside and cried instead sad they are going to send me a new appt at some point but I don't know how it'll fit in with DH's operation especially as they are moving premises next week to somewhere really hard to get to.

Trying to relax this evening as the walk home has really done me in, DH is out at DSD's school thing and I've put the DCs to bed, they have really played up tonight and I shouted at them so often my throat hurts sad when I feel like this I have no idea how I'm going to cope while DH recovers from surgery.

IYSWIM - if you see what I mean smile

Grockle Tue 11-Sep-12 19:31:31

Right - 2 days of work this week & I hurt. I'm in bed already. I have turned into a horrible person, I am grumpy (pain & tiredness), snappy, irritable and miserable. I always used to be able to deal with feeling overwhelmed as I was so motivated to do my job well and have boundless energy but now I am ready to hand in my notice. I can't just quit my job but I really think it is making me ill.

Hope everyone is feeling ok.

Fuzzpig, do you have family around? You have an awful lot to deal with.

fuzzpig Tue 11-Sep-12 20:39:23

Oh grockle sad ((((hugs))))

Any chance this is just a temporary feeling, as you are adjusting after summer? It must be a real shock to the system. But I guess your job is demanding enough for a healthy person let alone someone battling CFS. Does your manager know you feel like this? Is there a chance of being transferred to something else?

Sorry will stop firing questions at you now. No, no family around really, not many friends either, amazingly my parents are going to come up a few times during the recovery period though which is a real relief.

I nearly gave up and stayed at the pharmacy today as I was exhausted after work and doctors appointment and couldn't face the journey home. Glad I had my bus pass. Immunology results were clear by the way so I guess that means CFS is a more likely dx. New doctor is nice and asked lots of questions although I was too tired to answer them really as they seemed a bit pointless (ie because I already got referred). I also have my amitriptiline at last so I will be trying it tonight.

Cupawoman Wed 12-Sep-12 15:41:22

Hi everyone, Is it OK to join your very supportive thread please? I've been off work for 7 weeks now with what I think is either PVSF or CFS. I've lurked for some time on the thread and am amazed at how you all manage with young families and work. I started with a simple water infection (no pain, just felt tired, nauseous, shaky) and was then put on 2 lots of anitbiotics to clear it which just exacerbated the symptoms hugely (and didn't completely clear the infection). I'm lucky in that my children are teenagers and can fend for themselves but I'm still adjusting to how my life has changed radically in a short space of time. Feeling a bit lonely and isolated. Hope it's OK to vent as I don't feel my circumstances are as difficult as some on here. But very frustrated at the length of time between GP appointments and the puzzled expression on her face each time I go.

fuzzpig Wed 12-Sep-12 16:16:58

Hello cupa smile

What's the doctor doing for you, are you having blood tests? thanks

belleshell Wed 12-Sep-12 16:30:08


welcome cupa, this thread can be a life line at time. im so sorry to hear you havent been well, and we all cope cos we have to which is shit in this day and age!

Fuzz, at least with bloods things arent quite so clouded and i am so glad new GP is ok! how was amitriptyline, it may take a while to get into system, but certainly helps me when i take it, think is im fit for nothing when i do so dont take on a regular basis.

Grockle.... i hear you 100%... last month i was ready to quit too, but i love my job, i have given up so much because of my ME and this is the last little thing im clinging onto, not only that i cant afford not to work....if only the benefit system was fairer, id love to work reduced hours, and im sure my symptoms would be better and thus making ME manageable, but im entitled to nothing!!!

so once again (((((((HUGS)))))))) to all

Cupawoman Wed 12-Sep-12 16:31:24

Hi Fuzzpig, Thanks for the flowers smile Besides water infection, GP thinks I've also had something viral. Had 2 lots of blood tests. First lot normal, second lot normal except for elevated white blood cells which the Receptionist says the GP has written a note beside saying 'normal for you'. So not entirely sure what that means. I've made another appointment with my GP next week to ask about it and after reading excellent advice on here I will also ask for a printout of my results so I can Google and scare myself a bit more.

Cupawoman Wed 12-Sep-12 16:41:51

Thanks for the welcome Belleshell. smile It's great to have support. I'm in awe of the fact that you all manage to work. I can barely make it up the stairs and think I'm having a good day if I can do the ironing and help make the tea (wimp emoticon). In my other life (7 weeks ago) I taught adults part-time and smiled a lot.

belleshell Wed 12-Sep-12 17:03:04

raised white blood cells indicate infection, so that might be why GP wrote normal, anything over 10 is abnormal. In my previous life i was life and soul now im party pooper!!!

Grockle Wed 12-Sep-12 20:49:56

Welcome, Cupawoman. Sorry you have to join us. Do you have any support?

This might be temporary with me but it is getting progressively worse - I can't stand up straight & my legs feel like lead weights. If one more person says 'are you limping?' I might cry. I couldn't get my words out this afternoon which is a problem when I work with people with communication difficulties. I need a sitting down, office job where I don't have to talk to anybody!

fuzzpig Thu 13-Sep-12 07:37:25

Yes the 'normal for you' thing is probably because he expected you to have an abnormal result given your recent infection. On my recent tests I had two bad results - low red blood cells and high ESR (something to do with inflammation?) - but wasn't concerned about either of them as they both are to be expected following illness, and I'd had a chest infection for several weeks. So the test result is not normal usually, but is normal at the moment for you.

I was wondering if the doctor had mentioned CFS or PVFS to you, or if you'd mentioned it to them, or if you are thinking about it yourself before approaching the doctor? They wouldn't diagnose CFS yet as assuming you were healthy before, you haven't had the symptoms long enough (minimum 4-6 months I think?) but they should be able to diagnose post viral fatigue at least. Are work treating you well?

I am plodding on at work, have also found out DS has got extra nursery hours during DH's recovery period, we were just planning on using them for when I go back to work, but we are now considering putting him in there for my 3 weeks annual leave too, because I don't think I can cope with 3 school runs when DH is completely incapacitated. It's going to cost nearly £400 for five weeks which is nearly half our ISA but I think it'll be worth it as I'll get a rest during the day. We've also been talking about the future of our jobs, as I really don't know if I will be able to cope full time, but due to DH's operation I am not going full time again until after half term, and so I am trying to forget about it until then.

Cupawoman Thu 13-Sep-12 12:59:34

Hi Grockle My parents live about 16 miles away but are elderly. They have both had their own illnesses to contend with over the past few years but are good at the moment (fitter than me right now for sure and my dad is in his 80s). DH very supportive but working away this week so I have felt slightly panicky especially on a morning when I seem to be much worse.

Hi Fuzz, No the GP didn't mention CFS. You are right - it would have to have gone on for longer than this. I've been signed off work for the past few weeks and so far they have been fine (watch this space). GP just keeps writing viral on my sicknote. I'm the one who thinks it might be turning into PVFS as I seem to be getting worse not better.

Grockle Thu 13-Sep-12 20:04:08

What job do you do Fuzzpig? I'm about to write my letter of resignantion, I think. I can't manage work. My legs hurt so much today & I can't focus on anything which makes doing my job impossible. I love my work but I just cannot do it atm. Not sure what else to do.

Mornings used to be worse for me too, Cupawoman - I am still very stiff & achey and need a hot bath before I can move much. Now I get worse as the day progresses to the point of needing a walking stick in the evenings.

fuzzpig Thu 13-Sep-12 21:27:46

Oh no grockle, are you sure that's the best thing to do? Read back on this thread, I think it was magso (sorry if I'm wrong) who said she really regretted quitting her job. Who is your employer, is it the council? There must be occupational health or something, they might be able to make adjustments or find you another job? Can you get signed off for the moment? It might force your doctor to listen to you as well.

That's what I'm banking on - I work for the county council as a library assistant. So not mentally demanding or pressured but physically quite hard as there's a lot of lifting, pushing, standing etc. If I can't cope in the long term (I'm waiting until after DH is better before I decide) I can either apply for a reduction in hours or be redeployed to something desky.

Cupawoman Fri 14-Sep-12 11:25:09

I saw a Dietician this morning at my GP surgery in hope she could offer some advice on the best foods to eat (I already eat pretty healthily but thought I might be missing something and wanted a professional opinion). When I explained about my lack of energy the only advice she could offer was to eat more sugar.

fuzzpig Fri 14-Sep-12 14:26:04

More sugar you say? <reaches for biscuits> grin

fuzzpig Fri 14-Sep-12 14:30:48

Today I am really strongly considering buying a couple of wrist splint things. All the joints in my hands hurt a lot (some more than others).

Just got back from work and now have to go to school and talk about the extra nursery places. Reckon the walk back will finish me off for the weekend!

I was good at work and told my line manager the truth about how I'm feeling, but said I want to just muddle through the last week as I'm then off for three weeks anyway. Not sure if that's a good idea or not TBH.

Cupawoman Fri 14-Sep-12 16:19:46

Yes, Fuzz, more sugar (swigs from can of Lucozade). I'm bloody pleased I didn't pay for her services. grin

Re work dilemma ladies, it's a tough one isn't it. Mentally we need the stimulation and distraction. Practically we need the money. But physically and mentally it must be so hard. So far I've wimped out.

My job involved driving around from venue to venue carrying heavy bags/resources, then trying to motivate a group of learners to learn something. Often I'd be up at 9pm marking and preparing. I feel exhausted just thinking about it. At the time, I thrived on it.

fuzzpig Fri 14-Sep-12 16:33:43

Euwww not lucozade! I haven't touched the stuff since my glucose tolerance test during pregnancy <boak> funnily enough though I've been reading a book about CFS and it says one of the outdated theories about the cause of CFS was hypoglycaemia confused

Found a reasonably priced/reviewed wrist support but all of them say it's for things like tendonitis and carpal tunnel - DH reckons it won't help in my case but the pain is driving me frantic. Even things like typing make it worse. I might be going to town tomorrow if I can face it, so maybe I should ask in Boots or something? Any thoughts?

out2lunch Fri 14-Sep-12 16:38:18

i think you are doing the right thing grockle - your health is the most important thing here

you all seem to be able to do so much on this thread - have any of you been diagnosed with ME/CFS?

i have and i can't do very much at all - nothing most days tbh

fuzzpig Fri 14-Sep-12 16:51:08

I am not officially diagnosed but my GP thinks that's what I have and he referred me to a specialist. Not sure what will happen now.

Basically I just work my reduced hours (and working at a slower pace) ATM, get home and collapse on the sofa. Yesterday DH was ill so I had to do bathtime, I am really paying for it today.

I think I've had it mildly for about 18 months, made much worse by the chest infection I had, and now while it's not as bad as a couple of months ago I am still unwell and if I could afford it I would still be off work.

I don't know what to think about the inactivity thing, so many people (including my manager) think that if you don't do anything at all you will make it worse, but I don't feel like that's true, because I'm making myself work and it certainly isn't helping!

out2lunch Fri 14-Sep-12 16:54:15

hmm if i don't do anything at all i feel better - no pain but a bit spaced out/still just as tired

Cupawoman Fri 14-Sep-12 17:03:08

I have only had a tiny taste of what some of the posters on here have been through for years. I am not diagnosed with anything as it's way too early but have similar symptoms. Re the inactivity thing, I've read conflicting stories. Some sufferers who have recovered, albeit partially, said their worst mistake was to solider on at the onset. Instinctively I feel whatever it is that I've got, my body is telling me to rest up but maybe that's just me caving in and not being tough enough.

fuzzpig Fri 14-Sep-12 17:07:34

I think the problem is that when people say you need to keep active and not give in to it, it feels like they are calling you lazy sad or maybe that's just me...

out2lunch Fri 14-Sep-12 17:08:50

this illness only gets worse if you fight it though

Cupawoman Fri 14-Sep-12 18:06:43

I think you are right out2lunch. Do you mind if I ask how long have you been diagnosed with it? And what, if anything, helps?

out2lunch Fri 14-Sep-12 18:15:46

ten years next month cupa.

the only thing that really helps for me is loads of rest - mornings don't really happen for me
i can just about manage to get out on a daily basis if it is totally stress free and a short drive and i have someone to go with. not all bad but it s a long hard slog with no end in sight unfortunately.

if i do half an hours work indoors most days i can get away with a few aches and pains but anything more than that i pay for days and days.

the very best i can hope for is a day when i can get up with dd to see her off to school,get ready in the afternoon and go out for a bite to eat and chat and then have a nice evening watching tv and on mn.

i have tried all sorts of diff therapies nothing really helped but when i did turn the corner - i was a lot worse than i am now - of all things it seemed to be some homeopathic tablets that made a difference.

Cupawoman Fri 14-Sep-12 18:46:44

out2lunch Did you start off with a virus or did it just come on gradually? I keep reading that often a particularly stressful time can trigger it. Also do you mind if I ask what was in the homeopathic remedy?

out2lunch Fri 14-Sep-12 19:22:39

pming you cupa

belleshell Fri 14-Sep-12 19:44:07

out2lunch i have beeb diagnosised 2 years, and i carry on because i have to, if i didnt i would lose my home...........i cant do that my kids have been through too much!!!! so i do what i can before i literally collapse, i do have to say my symptms are cyclic, or boom and bust, so when really bad i dont get out of bedm, feed myself get washed etc........i do however make sure kids are feed washed and off safe to school!!!!i had to move 100 miles back to be near my family to be able to do all this, meaning i had to leave my 13 yr old with his dad because he was settled in school,...........this horrible thing as ruined my life....i dont live any more just exist!!!! sound harsh i think im on a big downer tonight!!!! bloody PMT

out2lunch Fri 14-Sep-12 19:51:47

do you have days where you feel ok/normal then belle? how long do your bad days last in an average cycle?
i would really struggle to get up and get ready for work let alone get to work and do a days labour then get home again.

fuzzpig Sat 15-Sep-12 07:49:14

Can I just ask anyone who has been on amitriptyline - did you get side effects at first? I have to take 10mg every night for a month before seeing the doctor, and apparently they take a long time to start working which is fair enough, but they make me feel really hung over in the morning even if I take them earlier at night. Wake up with horrible taste in my mouth, really groggy, and bizarrely (considering I was told to take them by a headache specialist) a headache hmm

belleshell Sat 15-Sep-12 08:22:32

Hi out to lunch. Every day is a struggle but my cycles usually go about 6 months boom 8 weeks bust! After every bist I never quite get back to how I was before... My week is generally survive mon to thurs and then not very much fri to sunday.. Today (and yesterday) I just want to shut the world out. But I can't. I feel I exist I don't live anymorem
Fuzz the odd taste and hangover is how I feel also an extreme thurst and it makes me eat anything and every thing in sight!

stressedHEmum Sat 15-Sep-12 09:48:14

I have a diagnosis of ME. I carry on because I have no choice. I don't work but I have 5 kids, 3 of whom are HE, am a church elder with all the responsibilities that entails, a BB leader, a safeguarding co-ordinator, the organiser of the foodbank initiative in my church as well as other stuff. I HAVE to do things whether I actually can or not. Yesterday, for instance, I had a meeting in the morning about one of the projects I am involved in. I was out for 2 hours and had to go to bed for the rest of the day.

Most days I have to go back to bed in the afternoon, just to get through the day. Everything takes me much longer to do than it used to, you could stir my house with a stick, and meeting my responsibilities means that I quite often miss Sunday Service (especially Communion because after I've visited my people, I'm fit for nothing for days.) Quite often even going for a bath puts me back in bed and everything has had to change in here, even the way that I cook for the family.

I only ever leave the house for commitments, never for pleasure and can go weeks without going out at all, except on Sunday to church. Even internet shopping is a struggle because I can't concentrate on it and all that scrolling and clicking hurts my hands and arms.

Every day is a terrible struggle (and I am a bit better now after my meds were increased) but I have to just get on with it. Everyone is suffering in here because of my illness, not just me. None of us has any life. My DH works 6 or 7 days a week just to try to keep a roof over our heads, my kids don't get enough input and I'm not even fit enough to walk out to the park with them, take them to the cinema, play with them at very much....and we live in a tip that I'm completely embarrassed to let anyone see. But what can I do, there is no option but to carry on as best I can.

Like Belle, some days I feel a bit better than others, but never normal. Those are the days when I can stay up all day, but I still can't do very much, and never enough to make an impact on the mess in here.

stressedHEmum Sat 15-Sep-12 09:51:10

And the other thing about it is that if I started to give things up I think that I would actually go mad. it's bad enough being in the state that I am, these things give me a raison d'etre and something to get out of bed for. I HATE being ill and it would be too easy to get into a downward spiral so I keep going as a way of keeping going.

Cupawoman Sat 15-Sep-12 10:28:01

Ladies thanks to all of you.

Can I ask what, if anything, you all make of the candida argument? In other words, chronic yeast infection? I ask because I've had thrush several times this year and my tongue is currently horrifically white. Recognised nutritionists like Erica White and Barbara Cousins think CFS/Candida interlinked. Has anyone ever tried the anti-candida diet?

stressedHEmum Sat 15-Sep-12 10:41:14

Cupa, I tried the anti candida things but it was years ago before I was ill. My PIL were a bit off the wall, alternative remedy folk. FIL thought that he could cure my pre-eclampsia with homeopathy, DH's mental illness with radionics and other such stuff. MIL thought that she could cure the boys' AS with Bach Flower remedies and aromatherapy.

After DS3 was born, I had really bad fatigue. I'd had a terrible pregnancy, spent 8 months in hospital on a drip, a difficult birth, was dealing with a completely unstable DH who was in and out of psych hospital and 2 autistic kids. SO I was tired a lot (not like now, though.)

MIL blamed it on candida infection and gave me a diet to follow and a cleaning/washing regime for the house. At the time, I would have tried anything to make me feel a bit more human, so I stuck with it for over 6 months but NOTHING happened. I didn't feel any better at all, didn't have more energy or anything. So I gave it up. In fact, I think all that stressing and thinking about what I could eat/making sure that there was no mould or whatever in the house actually made things worse because it was just another worry.

In saying that I've only ever had thrush once, when I was a teenager, so I don't know that much about it.

fuzzpig Sat 15-Sep-12 10:42:59

I've read that the candida link has been shown to be false. However if you are getting thrush anyway it can't hurt to try.

Cupawoman Sat 15-Sep-12 11:06:08

Thanks ladies. Just wondered. If you've read the Sarah Myhill webiste, you'll know she advocates a stoneage diet which seems even stricter than a regular anti-candida diet. Totally at odds with recommendation from the Dietician yesterday who said to eat more sugar. You could go nuts thinking about this.
And no 2 bodies seem to agree or know the best path to follow. Neither wonder little progress is made. Sarah Myhill does put foward a convincing argument though if you have the energy to read through it all. I have tried and sometimes it gets too scientificy for my little brain.

Cupawoman Sat 15-Sep-12 12:17:55

Any medical doctors out there? Or nutritionists? Anyone willing to offer up some professional advice/opinions?

LongGoneBeforeDaylight Sat 15-Sep-12 12:25:43

I was diagnosed after about 6 months but I had a very sudden onset.

I'm happy to say after being totally bedbound I am about 90% recovered now smile

Cupawoman Sat 15-Sep-12 12:58:57

Can I ask what helped your recovery LongGone?

Cupawoman Sat 15-Sep-12 12:59:47

And how long were you bedbound?

out2lunch Sat 15-Sep-12 14:27:42

sounds v v similar to my lifestyle stressedhemum

oh for a housework fairy

fuzzpig Sat 15-Sep-12 16:17:22

I'd like one of them too!

I made it to town so I now have a rather fetching hmm wrist support thing, but I did a few other errands too such as getting a present for a school birthday party tomorrow. Now waiting for a taxi back as I can't face walking from the supermarket to the bus stop. Realising more each day how messed up I am mentally too, I get so confused and dithery that I can't even make simple decisions (such as the aforementioned birthday gift) so I spend even longer wandering/standing around and now I'm even more tired and sore. A vicious cycle indeed sad

stressedHEmum Sat 15-Sep-12 17:47:50

I dream of a housework fairy, I might actually be able to see the floor and find some stuff if I had onesmile

I knitted a square for the Little Hugs project last night and hung some washing out today, so I've been asleep all afternoon and now my hands and feet are on fire and my eyes aren't working properly, and I still haven't made the dinner for the kids. That's what I'm trying to work up the energy and alertness to do next.

Sometimes, I would just really like a few days with no responsibilities and nothing piling up on me.

belleshell Sat 15-Sep-12 20:32:47

sTRESSED!!! you sound just like me i HATE my ME, i hate the fact that my partners kids have been here today and have spent all afternoon in bed..... i could cry i feel like i exisit not live!!

LongGoneBeforeDaylight Sat 15-Sep-12 23:17:59

Sure, I talked about it here -

I was ill for 4-5 years, totally bedbound one year.

fuzzpig Sun 16-Sep-12 18:20:09

Had to spend another 2.5hrs in town today as dd had a party to go to, I was a bit more sensible today though. I decided to stay in the mall and not trek across the park to the other shops I wanted to go to because I knew it'd be too much, and only let myself try stuff on in one shop because it's so tiring. I think it also helped that there was nothing I had to do except have a rest at Shakeaway obviously so no pressure.

The book I'm reading seems to basically be about pacing and gradual increase in activity. I think that approach would work well for me but I'm not sure it fits in when you work as the nature of my job means I never know how much physical exertion I will have. And if I'm in work I have to do those tasks, I have no control over them. So some days I overdo it without meaning to.

LongGoneBeforeDaylight Sun 16-Sep-12 21:28:01

Sorry my link is - CFS Recovery

Grockle Mon 17-Sep-12 00:32:01

Omg, I hurt so much. I can't sleep.

On Thursday I had to swim with my class. We have a hydrotherapy type pool so it's really warm & I got out able to walk properly. It was fab but short- lived. I hobbled on Friday, struggled yesterday & today took DS to Go Ape for his birthday treat. I was so tired, I was dreading it & I was right to - I hurt so much now & no meds are helping. I have to work tomorrow but I can't walk ATM. It took me about 20mins to drag myself up the stairs on my hands & knees this evening & now i can't sleep for the pain in my limbs. I don't know if there's any point seeing GP tomorrow but I don't know what to do with myself.

Sorry for self-indulgent moan. Noone in RL seems to understand sad

Grockle Mon 17-Sep-12 00:35:32

Fuzzpig - re over doing it... I never really know what I am able up do without repercussions. I don't understand how you figure it out. When I feel well, it's such a relief that I forget to be careful.

I feel like my life is falling apart now - I need to work but it's making me ill. I can't do what I want to with DS, and I'm a miserable, moany old woman.

fuzzpig Mon 17-Sep-12 07:10:56

Do go to the doctor grockle, he needs to see you like this and actually listen to you. Do you think he can sign you off sick for a bit?

I am getting more aware of what I can do, I think I've always been the overcautious, realist/pessimist type of person, so if anything I'm too careful. I'm scared my managers will think I'm lazy though so I tend to ignore my own 'danger signals' at work.

5 more work days until I am off for 3 weeks. 6 hour days now against my better judgement. Haven't even had a shower for days and no time to have one now.

Cupawoman Mon 17-Sep-12 12:15:26

LongGone thank you for the link. I will watch it.

fuzzpig Mon 17-Sep-12 13:10:28

Got my appointment at st barts today, in November.

belleshell Mon 17-Sep-12 20:07:52

oh Grockle if i had a wand id wave it for us all. How was today, what did doctor say. I have t say i still dont know what i can and cant do but i have gone from just pushing the boundries to been frightened to do anything out of the ordinary!!! not that life as a mum, nurse, daughter, sister etc is anything ordinary like the rest of us...........what is normal?? How did you get on at the doctor. are you writeing a diary of how u feel when you are like this, it will really help when you DO get referred........and never feel bad abotu blowing off steam thats why we are here because your right know one in RL seems to understand!!!

Fuzz is that your ME/CFS appointment or the one they screwed up the other wek.

fuzzpig Mon 17-Sep-12 22:14:21

It's an appt at the CFS clinic.

fuzzpig Tue 18-Sep-12 07:49:24

Aaaaarrrrggggghhh it's getting colder now and that certainly seems to make everything worse angry

On my way to work now but just want to hibernate.

Hope you are ok grockle, did you make it to the doctor yesterday?

Grockle Tue 18-Sep-12 19:34:33

I've not been to the doctor blush. I've been at work but had to sit down all afternoon which isn't really possible most of the time. I feel pathetic going to the doctor as I look fine... although my legs hurt so much I thought they were going to give way today. I'm hobbling & waddling like an injured duck. I really don't know what to do. Mentally, I'm capable of work but I'm not physically able to keep up with the children, do everything I need to do (as it requires a lot of walking & moving) and now I'm getting behind & overwhelmed with my paperwork as I need to go to bed at 7.30 every night.

I'm glad you have your appointment, Fuzz. How're you Belle? And everyone else?

fuzzpig Wed 19-Sep-12 15:16:49

Please please go to the doctor grockle you need every 'incident' logged.

Having a shit day today. Got called up for making a couple of mistakes, really tiny mistakes, but I went and hid and cried after because I am stupidly tired and emotional sad

fuzzpig Wed 19-Sep-12 16:24:35

I think the brain fog is bothering me even more than the pain at the moment.

belleshell Wed 19-Sep-12 19:38:32

well if im been honest im ok but i havent had a poo for nearly a week!!! blush which is nothing new but i am so bloated, sluggish tired few up pissed of oh and in pain. but even worse than the poo thing its my daughters birthday at the weekend and we are going camping ( she wanted to) i am dreading it really really dreading it, my partner and i will have 5 kids with reality i want to hibernate, al weekend.....

Grockle, please go to GP, fuzz is right it needs documenting........

Fuzz hope the fog lifts slightly..............

everyone else hope you are surviving.........


Grockle Wed 19-Sep-12 20:23:35

Argh. I saw nice GP who was very lovely but said he cannot do anything since I have my rheumatology appointment in 2 weeks and I've been on every medication that he would suggest (amitripyline, duloxetine, an assortment of other anti-depressants, diclofenac, co-codamol, solpadol) He said he could sign me off if I want but then I'd feel depressed and guilty so it's best to carry on. I feel like crying but everything hurts too much.

Belle - it is my DS's birthday this weekend too. Thankfully, he did not suggest camping (although he loves it). I hope you have a lovely time (and have a poo before you go grin)

Fuzz, I've been called up on a tiny error this week & it pissed me off. I'm hobbling, can barely walk & the person who told me off hasn't acknowledged that I'm doing my level best but chose to tell me off. Grr.

I need a break but I have to make 2 birthday cakes for DS tomorrow night after work. Not sure how I'll manage that because I crawl up to bed at 7.30. Then my mum is coming (lovely but busy), then it's DS's birthday & family dinner, then his party on Sunday, then my Dad is coming to stay. The thought of it all is making me cry.

magso Wed 19-Sep-12 22:08:15

Oh grackle that is too much for you. I feel for you - the dread of all that hard work.
Can you send dh out to buy some lovely birthday cakes? I know you want to do it yourself but perhaps personalise with candles.
I struggled at work last week and felt a failure . Collegue who knew me before Cfs noted i was struggling to talk( actually it was the brainfog) and insisted i have a lunch break hard to come by as we were shortstaffed. I also work in a hospital which can be helpful. I have a couple of weeks off as recovering from sinus op.have a night to myself in ward before back home.

Grockle Wed 19-Sep-12 22:41:23

Oh, hope op is ok. A couple of weeks off sounds good. I'm glad you have supportive colleagues. I'm going to talk to my work tomorrow about trying to make things easier for myself... I don't actually think it's possible but surely me being there half the time is better than none of the time? I dunno

fuzzpig Thu 20-Sep-12 06:58:07

Well, employers have a duty to make 'reasonable adjustments' if you have a disability, but the difficult part is getting them to recognise that it is a disability as there's rules to follow (I've been told even if I get a dx I may not qualify yet as there's no proof I've had it for over a year). Employers can do that sort of thing informally too though. Did you have anything particular in mind?

I feel like crap today, bad tummy again, have to go in anyway as I have the safe key. We are short staffed too. Felt so weird last night, fluey and cold but also like I was drunk? Room spinning, felt like I 'wasn't there' IYSWIM, it was very disconcerting. DH reckons it's the amitriptyline but I've been on that a week already without having any effects that bad.

Hope you recover quickly magso thanks

fuzzpig Thu 20-Sep-12 07:05:05

Also grockle I can't remember if you've spoken to occ health at all? There should be procedures in place where you trigger a referral to them if you reach a certain amount or length of absence, and then there are a few steps involved. If you haven't had this yet, it's worth talking to your manager about it, as knowing what would happen (if you had more time off) might ease your worries a bit. There should be a clear structure. For me I know that I have my phased return but if it 'fails' ie if I'm not ready for FT work when I am supposed to be, I get re-referred, and there are options like redeployment, permanent reduced hours or the 'reasonable adjustment' thing. It's scary, but a lot less scary than thinking "if I'm off any more I'll get fired".

Grockle Thu 20-Sep-12 07:46:41

No, I don't know what adjustments I'd like to make. Ideally, I'd sit in a an office & do paperwork but since there are children that need teaching, I kind of have to do that too! If I'm off, it just makes more work for me. I will see what they say - at least they are aware that this has been going on for some time (they've called an ambulance for me in the past) & they've seen me hobble a lot. I've not spoken to occupational health but I'll ask about that today - work have made such a fuss about absence that I feel like I'll get fired, but I know it doesn't really mean that. It's had to do anything without a definite diagnosis.

Feeling drained this morning.

fuzzpig Thu 20-Sep-12 13:13:27

I guess as a teacher you work for the council, so there should be a set structure in place aimed at keeping you in work (even if a different job) and they can't just get rid of you. I hope your chat goes well x

CFSKate Thu 20-Sep-12 15:43:51
Grockle Thu 20-Sep-12 17:12:40

I chickened out of the chat today because I felt so tired & grumpy. Knackered but have managed to make a cake whilst I made DS's dinner, so hopefully I can go to bed by about 8. Hope everyone else is ok. Will read the link in a bit smile

fuzzpig Thu 20-Sep-12 20:55:37

Thanks Kate I really liked that post and the one it linked to. Not brave enough to post it on FB though!

Maybe another day for your chat grockle. Hopefully they will be approachable and kind about it!

I found out the clinic I'm going to is professor white's (although I guess it doesn't necessarily mean I'll see him?). He seems quite famous in the field. But he's a professor of psychological medicine, which is a bit weird. I feel uneasy now - is he somebody that thinks it's all in the mind?

I certainly don't think it is, but then I want to believe in treatments like GET even though that is controversial and lots of people are hurt by it... I don't know. I want to keep an open mind until I see them. This is probably my only shot at treatment (not a chance in hell of going private).

DH has his op tomorrow so very nervous, obviously mostly because of the surgery and its effects but also I'm really unsure how I'll manage on my own. Mind you I am feeling more faithful in humanity right now as a friend is taking DD to school tomorrow and another just dropped off an enormous cottage pie for us! smile

belleshell Fri 21-Sep-12 06:37:36

thank you for the link kate, i have posted it on fb, im sick of been asked if i am tired, and we are spending a weekend with my partners friends camping. i am drreading it, my close friends and family are used to me sloping off to bed because it is the only place i can get any relief, but what if these think i am miserable or lazy...........god why did i ever say yes to camping. my daughter however is so looking forward to her birthday. i have a cake to decorate, loft to unempty and pack for us all before lunch.....i must not be negative it might actually be fun. Fuzz i hope DH is ok, and you too, grockle good luck with your birthday weekend and everyone else hope you are surviving!

Grockle Fri 21-Sep-12 07:25:46

Hope the op goes well, fuzzpig.

Enjoy camping Belle - it really might be fun. Happy birthday to your DD. it's DS's birthday tomorrow - he's unbelievably excited!

belleshell Fri 21-Sep-12 15:10:49

happy birthday Grockle DS, my DD is 11 how old is DS. God what have i let myself in for it is pissing it down , we have 5 very excited kids, and i am so miserable, i have been baking all morning, then asda shop then packing!!! im cold i got pain and i am tired!!!! i am such a miserable cow!!!!

Grockle Fri 21-Sep-12 18:23:29

Have a lovely weekend Belle. I'm a miserable cow too but now have wine and that seems to help. Shame it's frowned upon drinking it at breakfast time.

SillySallyOne Fri 21-Sep-12 19:08:14

I hope you don't mind me jutting in. I had ME for several years so do now how some of you are feeling.

Can I speak honestly and frankly but I mean well honest. smile

You lot are doing way too much. Making birthday cakes, sorting out everyone else, doing things that other people want you to do but you don't want to do.

If you had flu etc you would not push yourself so hard, so be gentle with yourself, not because you physically can't but because you are important and need to do what is right for you.

Learn to cut corners buy the cake, don't have 5 excited kids at home for a party do a cinema trip party where you can have a nap during it. Camping I am now well and really do not want to go camping and would say sosmile

Grockle re teaching do sit down, get the pupils to come to you, do you have a TA who can do the running about work. It will do the pupils good to think of others and be more proactive etc

I do understand that I do not know the answers and what I have suggested may not be appropriate but the jist is go easy on yourselves and you do not have to do everything. There is nothing wrong in putting yourself first for a while.

fuzzpig Fri 21-Sep-12 21:24:41

Very good post Sally smile

just popping in before retiring to bed, DH had his op today, they ended up cutting some of the disc away so it took a bit longer than planned. He's able to walk which they are really pleased with but he's in a lot of pain so they are keeping him in for tonight at least.

Hope everyone's weekends go well x

stressedHEmum Sat 22-Sep-12 08:58:36

Hope your DH makes a good recovery, Fuzz, and that you are able to manage OK. Try not to do too much.

Sally is right, we all have to find ways of managing ourselves. I'm always getting lectures about this from everyone who knows mesmile it's really hard when you have been used to being active and involved in everything to suddenly be faced having to curtail things, but it has to be done.

Belle - camping? Just WHY? I hate camping and wouldn't go even if I was able, it's one of my nightmares.

Grockle, you really need to go back to the GP, keep a diary or something, even if you have to get someone else to write it for you. Then you have something to show him that backs you up. Same at work, you have to have a chat with them about what you can and can't do. I don't know much about it because I don't work and couldn't even if I wanted to, but they surely must have to try to accommodate you?

Can you guys still drink wine? I am envy 1 small glass pushes me over the edge and I start slurring and stumbling about even more than usual and then I am ill as anything the next day, not a hangover, just everything is worse. Makes me very rubbish company.

I'm pretty cuffed today, had BB on Thursday and a Food Bank meeting yesterday, so I couldn't walk by last night. Am sore, stiff and knackered this morning and my eyes and brain aren't working too well. However I have to get through the day, try to hang some washing out and the like.

Hope you all have a good weekend.

fuzzpig Sat 22-Sep-12 16:58:01

Thanks stressed I am really struggling to keep it together, I overdid it at work a bit and DH is home, my parents were up overnight but mostly hindering more than helping tbh. I thought this time would be different. I hate being so unassertive!

Grockle Sat 22-Sep-12 17:02:02

I did see GP on Wednesday and he said there was nothing they can do til I've seen the rheumatologist, other than sign me off so I can rest. I'm too tired to keep fighting. My legs hurt a lot today but I've managed a short nap this afternoon, so that was good. Off out for dinner with my family for DS's birthday. Much as I love birthday celebrations, I'll be glad when this weekend is over.

I am going to have a long, hard think about what I want to do, what I can actually do & what to do now. I'm really struggling but feel like I have to fight it & carry on til I collapse in a heap (which is what happened back in July). I think because I DO try to carry on, people expect it. If I went to bed for a week, they'd let me off. It IS like having flu - all the aches & shivering & hurtiness & fatigue, so I should probably treat it as such and lie down til it's better. Thank you for wise words & encouragement.

Fuzzpig, how is DH?

fuzzpig Sat 22-Sep-12 17:11:41

Grockle if the doctor is offering to sign you off and its only 2 weeks I would take that option.

I was just wondering about the amitriptyline, did you take it for a long time? I was told I have to take it for a month before feeling any effect at all and maybe increasing the dose.

DH is able to move around but still in pain and feeling pretty sick, that's normal though apparently.

stressedHEmum Sat 22-Sep-12 17:51:09

I would let the GP sign me off Grockle, it can only do you good. Fighting against it and keeping ploughing on just makes things worse in the long run and brings on a big crash. (Good at giving advice, not good at listening!)

Fuzz, all the meds take a few weeks to kick in at all. When my meds were doubled recently, I was told to wait at least 2 months, and then go back to GP if I wasn't significantly better. I shall be paying her another visit at the end of this month, I think, because although I do feel better in muself, I still can't really do anything, iyswim.

Sorry your parents weren't much help, I think they are all the same, it can be like having extra children around. Hope DH gets some relief soon from the pain and nausea.

Apologies if there are a tonne of mistakes, I have clicked all the red underlines, but my eyes are still not working and my hands are starting to seize up.

SillySallyOne Sat 22-Sep-12 20:02:40

Grockle When you think about what you can do - think about what you want to do. Don't give up the good things so you can do more of the mundane things. If you like working then carry on working but try to make it work for you. Buy lunches, have a few takeaways etc get a cleaner. Use your energy on the fun/good things. Re the birthday party dinner tonight - consider making it easier for you, make it lunchtime or get a takeaway and have a picnic in the sitting room. Still great fun, you are involved, your family really would not want you to make things perfect all the time - they would much prefer to have a happy not knackered Grockle.

Fuzz hope DH is ok. I was put on amitriptyline and all it did for me was make me sleep better at night. It did not get rid of any of the pains etc and I think made me more dozy in the day. I did get better though so do not give up hope.

Grockle Sat 22-Sep-12 22:16:19

Thank you all. That's good advice, Sally & I will take heed. Tonight's dinner was really nice actually. We went out early & DP drove so there was no hassle with taxis etc It was nice to do something normal.

I'm on amitriptyline & I think it does nothing but I take it anyway just in case!

Grockle Sat 22-Sep-12 22:17:37

Oh, I will think about being signed off. I'll go on Monday because I want to but will also see how I feel tomorrow.

magso Sun 23-Sep-12 09:25:11

Sally's posts are very good. I think I have done fairly well since giving myself permission to be in recovery and therefore rest. It is important to use your limited energy for enjoyment not just the boring essensuals of life.
Hope your DH is feeling better fuzzpig. Hope you can rest up Grockle a sick note is a good idea. Good you enjoyed your dinner out. I Am back home (sinus surgery) and hoping for continued recovery. We had a lovely holiday in a camper van that worked well with my need for rest.

Grockle Mon 24-Sep-12 10:27:41

Argh, I'm at home today. I had an awful night last night - shivering & aching, like I had flu but without the cold. I'm so fed up of being cold all the time, even when I know it's warm. I lie in bed with the electric blanket on and shiver. It makes no sense. I didn't wake up this morning so DP called work to say I won't be in. But I'm now sitting in bed, aching & cold but feeling ever so guilty.

CFSKate Mon 24-Sep-12 11:07:40

stressedHEmum - not being able to tolerate alcohol is very common with ME.

This was posted in the comments of the Daily Mail I posted on Thursday

"A quote from Ian Lipkin......talking about his previous investigations into ME/CFS in the 1990's: "The one thing that did impress me [about the ME/CFS patients investigated] was that there was an enormous amount of immuno-activity that appeared to be non-specific in these individuals. So at a time when people were saying that this was a psycho-somatic disorder, I said: Two thirds to three quarters of the individuals whom we studied had polyclonal B cell activation. They're sick. We don't know why, but they are sick.""

fuzzpig Mon 24-Sep-12 12:53:21

Don't feel guilty grockle. You are sick, you need time off!

Grockle Mon 24-Sep-12 20:22:40

Thank you. I am now signed off for a couple of weeks and work are referring me to occupational health. I just want to get better.

I'm so incredibly cold... even in the summer when it was 28' outside, I would shiver and have goosebumps. I've had it all night & all day today - lying in bed on an electric blanket with hot water bottles & heated wheat bags but I just cannot stop the goosebumps & crawly skin feeling. Do any of you get this? And, if you do... what do you do about it?

I felt cooped up this afternoon so DP took me to collect DS from his childminder but I had to go in my wheelchair. Feel like such a pathetic attention seeker sad

magso Tue 25-Sep-12 09:24:16

I used to rest in bed with the electric blanket on Grockle - the only way I could rest properly as my muscles would just spasm from the cold. I still feel the cold or overheat easily but am not as forever cold as I used to be. There is a private hospital (too dear for my purse) that uses heated beds as treatment for ME - I think to encourage a healthy fever response. Any way that helped me accept that my enjoyment of lieing in a lovely warm bed was acceptable!
I cannot tolerate alcohol either.
Grockle good you have a couple of weeks sick leave. Don't feel guilty - I am sure I only started to recover somewhat once I treated myself as ill and needing to rest. occupational health have been really helpful for me so I hope they can for you too.

stressedHEmum Tue 25-Sep-12 13:02:24

I get really cold and really hot as well. I just try to manage as best I can, tbh. Extra cardigan and socks that kind of thing. I don't have an electric blanket or anything like that but I do spend a lot of time sitting under blankets and the like or going to bed with my clothes on.

it's good that you are signed off, Grockle, the rest can only help you.

fuzzpig Tue 25-Sep-12 13:45:04

I am also really sensitive to temperature, always have been. Apparently it's common in people on the autistic spectrum. I am really feeling it in my joints now though - it's no wonder people have asked if I've been tested for arthritis! It doesn't help that our house is poorly heated/insulated. My duvet is my best friend ATM.

I am pacing myself quite strictly now while I'm off work, but there is so much that needs doing (DH was doing most of the housework before), believe me we aren't house proud but I have to do it regularly because if it builds up I won't be able to attack it (eg I can't stand up for long so can't wash up more than a day's worth at once). That plus the school runs and bath/bedtime are really draining me.

I want to keep on top of things but I also want to rest up as I'm back to work in 3 weeks. I am alternating household tasks with rests. Not sleep though - had a lovely child free nap with DH yesterday morning but it totally messed up my sleep at night. So I just try to 'go to zero'.

fuzzpig Wed 26-Sep-12 13:14:58

Fucking hell I am totally wiped today. Not in much pain (well, not much for me anyway hmm) just exhausted to my very core. I feel like I'm made of lead. Done nothing today except take in Tesco delivery and school run. Don't think I'll even be able to get the DCs bathed tonight.

Hope everyone is ok and not trapped in all this rain!

magso Wed 26-Sep-12 15:40:55

I am sure one night without a bath will do no harm Fuzzpig. Rain always makes me more achy too but I am lucky in that ds goes to school ( SN) by school bus so I can rest up by school day.

fuzzpig Wed 26-Sep-12 15:56:55

Yeah I have stuck them in front of a DVD as usual and no bath tonight. DS is supposed to have one nightly because of his eczema but tbh it doesn't seem to make any difference. It is so high maintenance - he has bandage suits to wear every night too.

Dinner courtesy of my friend, she dropped off a massive tub of meatballs in sauce yesterday smile

kiwigirl42 Wed 26-Sep-12 16:36:59

I hope you don't mind me joining you guys? its been a really informative read so far.
I've got fibro. I had 2 wks in hospital with a flu like virus 3 yrs ago and about 6 wks after I came home developed toothache like pain in my bones esp arms, legs, back, neck. Tiredness was overwhelming - virtually bedbound for first 5 mths.
Luckily GP just accepted what I said re symptoms and gave me adequate pain relief. I see a pain specialist every couple of mths too. I no longer work as cut hours down and down to 5 per wk but that would still put me into bed for 2 days following (have chronic migraine too so the combination was too much).
I hate not working. Really hate it. My DH is wonderful and supportive but I know there are family members who think I 'should just get on with things'

I take morphine, gabapentin, tramadol and voltorol daily just so I can walk. Makes me so angry when I think that people don't believe I'm ill. Why would i want to live like this?

Luckily I am generally fairly happy - not the life I want but its the life I've got so making the most of it. DS is 12 and it upsets me that he does miss out on things due to this damm disease.

I did go to a local clinic and saw a psychologist but that didn't help my pain, funnily enough.

fuzzpig Wed 26-Sep-12 17:44:58

Hello kiwi smile

Will be back tomorrow but ATM I feel like I'm having a 'crash', could barely lift my fork at dinner, don't think my pacing was gentle enough but what else could I do! DH is still mostly bed bound so god knows how we will manage the next few days.

kiwigirl42 Wed 26-Sep-12 18:07:30

I've discovered that most things can wait. As long as children and pets are fed and watered everything else can wait.

I managed to vacumn the whole stairs in one go on Monday (usually can only do 4 and have to wait til next day) and I can barely straighten my arms. They are so sore. The muscles are solid and the elbow joint so sore. Definitely not in my head!

belleshell Wed 26-Sep-12 18:08:52

Hi kiwi lovely of you to join us, this theard is sometimes the only thing that makes me feel im not quite so sad mad or bad!! Fuzz, (((((HUGS)))) i so feel for you, maybe just do the bare essentials ie fed and rest, and same for kids...maybe even if it is for a few days, is there no one who can watch kids for you even if its just for one night. i spent most of Monday in bed ( i took annual leave knowing id be shit after weekend) i could barely walk let alone much more. i have pooped thou!!! thank heavens for small mercies!!! i am counting down the hours to my days off.... im still searching all for that magic wand.xx

Luckystar96 Wed 26-Sep-12 18:19:50

You keep saying 'there is nothing wrong with me'. But there IS something wrong with you whether or not a blood test can detect it- there are still a lot if illnesses that can't be diagnosed with blood tests, ME being one. I know how you're feeling. My GP diagnosed ME after about 6 months of feeling like you do, but there's very little they can offer as they don't really understand the illness. Depression is also a very common side effect of ME/CFS
A bit if advice- be aware of the boom and bust effect ie doing too much one day and suffering for it for the next few days. The only way through this illness is to learn to pace yourself properly. I am 11 years on from diagnosis but manage ok if I'm careful. I must admit I can't work as I find two kids ,a house and husband more than enough to tire me out . It took me a long time to accept this illness but once I had I felt so much better in some ways. take care, and make sure your employer is aware as they may be more understanding than you think ( I hope )

Grockle Wed 26-Sep-12 20:54:25

I wish it had only taken 3 months for me to be diagnosed with something. 3 years on and still nothing. And now my rheumatology appointment has been cancelled. My GPs (my regular and the nicer one) refuse to prescribe anything else til I've seen the rheumatologist. I don't believe they can't & I don't understand why they think it's acceptable for me to be in so much pain indefinitely. I'm at my wits end now. I've googled places to order painkillers online which I know is ridiculous & unsafe but I really do not know what to do. I'm not sleeping because of the pain & shivers & it all becomes a vicious cycle & spins out of control sad

Sorry for the rant... am in pain & feel helpless & overwhelmed.

Welcome to newbies & hoping everyone's not suffering too much.

fuzzpig Wed 26-Sep-12 21:21:55

WTF grockle?! Why did they cancel? angry

Am livid for you, there is no good reason for them to fob you off so much, they should be listening to you sad the way your GP has handled this from the start is not normal or acceptable, you don't have to stand for it, is there any way you can change surgeries?

belleshell Thu 27-Sep-12 05:01:49

grockle dont buy from you have an out of hours or walk in centre.....go there, it will be a different GP if all else fails go to A+E, at the walkincentre, tell them u are awaiting an appointment for review into your pain, but your symptoms have suddenly become worse. They dont know they whether they have or havent....its worth a long shot but a prescribed drug is so much safer than a bought drug, and even if its something to tie you over till you see rheumatologist. at which point they can stop medication and start a more appropriate one.

kiwigirl42 Thu 27-Sep-12 10:35:07

I really feel for you Grockle - you need to go back, go every day if you need to. I am so, so lucky that my GP took what I said at face value and gave me strong painkillers straight away (slow release morphine, in fact). I could barely walk. Its just such horrible, overbearing pain, isn't it?

Grockle Thu 27-Sep-12 11:09:33

Oh, I won't buy from the internet, don't worry. I just feel really stuck. Drs won't help & I don't understand why. I'm too exhausted to deal with it anymore - I can't be bothered to change surgeries. Maybe if I'm feeling better tomorrow I'll call them again or try out of hours at weekend.

I've shouted at DP this morning & had a massive meltdown because he has never once left me in bed in the morning & I'm exhausted and he's away all weekend so I have to do everything by myself.

I took DS to school this morning (usually a 2 min walk) and had to go in my chair but it took me 15 minutes because the pavements are so wonky and uneven and then I came home, collapsed & cried then slept on the floor for an hour and a half.

WTF do you do if you are alone for days with DC? How am I going to collect DS from school today?

Sorry for ranting & being so self-centred. I'm so emotional & upset and worried by everything & I really don't think anyone understands.

fuzzpig Thu 27-Sep-12 11:22:30

Why isn't he leaving you to have a lie in? Is he usually supportive?

Is there anyone who can do the school run for you this afternoon?

stressedHEmum Thu 27-Sep-12 12:23:08

I understand, Grockle. I have to do everything myself as well. DH is always going on at me to rest but he doesn't do anything to help. I was standing last night at 10pm cooking him dinner because he's been working late and wouldn't eat what the kids had had. I'd been in bed all afternoon and most of the evening and was practically falling over but I still had to do it. Same with all the washing/housework/kids stuff etc.

The one thing that I am glad of is that I HE because I could never manage the school run or the pressure of getting them all up and out in the morning. Althoug half the time, I can't really do very much with the kids at home either, so everyone is suffering.

Grockle Thu 27-Sep-12 14:43:51

He is supportive, Fuzzpig but I do't think it occurs to him that a lie-in might actually help. I realised last night that he tries to help by doing random things - yesterday it was emptying the hoover bag (which could have waited) whilst I hobbled round the kitchen cooking dinner for him & DS (I was too tired to eat it).

He always makes me cups of tea etc but doesn't get up til I do = he was awake for at least an hour this morning, reading & playing on his phone but it was only when I crawled out of bed & cried that he bothered to get up. SInce I complained, he's spent all day telling me off for doing too much or not helping myself - like lying on the floor to sleep because I couldn't crawl up the stairs to bed. I tried to explain that I couldn't actually get upstairs and it hurt when he tried to pick me up but I think it came out as mumbled sobs.

HE sounds very appealing right now HEmum, but if I did it, DS would only be learning about Power Rangers & Harry Potter since i'd just plonk him in front of the telly so I could lie down.

I'm going to brave the school run this afternoon - using crutches