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Spooning into summer - life with chronic pain & fatigue.

(1000 Posts)
Grockle Sun 14-Jul-13 07:58:50

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here

Grockle Sun 14-Jul-13 08:02:02
fuzzpig Sun 14-Jul-13 08:23:23

New title rocks! Love it grin

belleshell Sun 14-Jul-13 10:32:42

hello my fellow spoonless virtual buddies.......

KatyMac Sun 14-Jul-13 10:45:31


I'm having a bad patch so I thought I'd check in here

daisychicken Sun 14-Jul-13 11:17:23

Hi, am also having a bad few days again.... did a bit much yesterday plus the heat isn't helping..

CFSKate Sun 14-Jul-13 18:00:32
CFSKate Sun 14-Jul-13 18:04:52
Grockle Sun 14-Jul-13 21:37:25

Nice to see people posting smile

I've had a good patch recently. Pain-wise, at least. Insomnia is BAD & restless legs/ arms/ brain fog are not great. I'm wondering if the reduction in pain is linked to my being wheat-free for 4 weeks now. I hope not because I'd love a nice baguette with loads of butter. Gluten-free bread just isn't the same.

Mentally, I've been in a bad way but I had a bit of an epiphany today & am trying very hard to be positive, calm & smiley. Not being in great pain makes that much easier.

Spoons to you all.

newestbridearound Mon 15-Jul-13 08:20:25

Hello, I haven't posted on the spoon thread before now but having a really bad patch with my ME at the moment so thought I'd say hello smile

gallifrey Mon 15-Jul-13 08:24:07

Grockle I am pleased to hear that you are feeling better and more positive now xx

buildingmycorestrength Mon 15-Jul-13 19:49:03

Hi all. Glad things are not to terrible at the moment, Grockle.

Hello newbride. thanks

Had guests at the weekend who took well over an hour to say their goodbyes. I was desperate to go lie down but keep thinking, 'Oh, they're going now, I'll just hang on.' Urgh.

Solo Tue 16-Jul-13 12:14:35

C&P'd from old thread. Didn't see the link!

Hi all. I hope you are all ok.

I returned to work yesterday. I am shattered tbf. I am being sent to the OH people which I hate doing! but I have no choice sad

Many extra spoons to you all.

Matildathecat Tue 16-Jul-13 13:07:59

Hello, new poster here. Long history of prolapsed disc, failed surgery, finally getting second opinion and diagnosis of severe nerve compression due to scarring from the first surgery. Second op to remove the scar tissue and decompress the improvement and MRI now shows even worse scar formation. Now been told to go down chronic pain management path. Had some stupidly expensive injections last month which have helped a bit and have more booked for Sept on the NHS. Shed loads of drugs.

Anyway, I have been offered a place on a Pain Management group which involves all sorts including CBT. I will definitely go but was interested if anyone has done this kind of thing and what they got from it?

Hope you are all having a good day and look forward to chatting here.

magso Tue 16-Jul-13 13:44:47

Hi Matilda. Sorry your surgery was not successful. In our local hospital the chronic pain is combined with the CFS/FMS team. I have CFS. I attended 3 1:1 sessions, which helped me learn to pace (not do too much)and accept etc and have got less unwell during that time, so I think it probably did help. There was also physio but I did not get that far due to another condition (PoTS).
Grockle hope your slightly better patch continues and becomes and even better.
Has anyone used TENS for back pain? I have had back pain on and off for decades, (currently have a minor facet lock up causing pain on breathing- a regular occurance but I can't see the chiropractor till next week) and have just bought a small semi disposable stick on TENs patch (half price in coop pharmacy). I have never used one before and do not know how to set the level. Do you set it to be just detectable or does it need to be much more obvious? I tried the later yesterday and I it didn't seem to help.

belleshell Tue 16-Jul-13 15:59:55

Hi to the newbies, and welcome, we are a lovely bunch here, even if I say so myself.....Grockle :D glad things a little easier!!! xx
Magso, with tens start off low and increase it until its unbearable, I used it in start with couldn't tolerate greater than setting 3 towards the end I was on ten and couldn't feel a thing, oh the joys of child birth!!

fuzzpig Tue 16-Jul-13 18:09:22

Hi all smile

Just wanted to say I have now settled on 12hrs a week instead of 16. I had been umming and aahing for a while but I just decided to make the bloody choice - even if it's the wrong one - and get on with it. So, I will now only be doing 3 4hr shifts a week instead of 4 - and crucially, there will always be at least one day between each shift. That is going to make a big difference I think especially if I get a bug (since that's when I end up off sick, as the CFS makes simple illnesses so much worse) - I will only ever have one day to get through before I can rest, or if it is really bad hopefully I will only need one day off sick. It starts immediately which I was surprised about but it's good as I no longer have The Fear of doing consecutive days.

Matildathecat Tue 16-Jul-13 18:19:57

Hi Magso, I have used Tens quite a bit. As said already start low the increase. I can tolerate it quite high but found it quite an annoying sensation and kind of reminded me I was in pain. I prefer more pleasant distractions. I have a fab physio/ Pilates instructor who gives me a wonderful massage then back targeted exercise. It's a bit expensive but I'd go every day if I could afford it. I also love swimming so go to the pool a few times a week and do a combo of swimming and hydro exercises...did I mention I used to be super fit before this saga?!

I did listen to music on my iPod in the wee small hours when in agony, strangely enough I now hate all my former favourite music. Would insert sad face but don't know how...

Marking place on new thread

magso Tue 16-Jul-13 21:51:57

Thanks Belles and Matilda, I will try turning it up. I think my back is playing up because I missed pilates.
Fuzzpig hope your new hours work. You can always increase again if you need to.

crashdoll Wed 17-Jul-13 08:19:38

Hi spoonies! My hospital have applied for funding anti-TNF treatment for me, which I am strangely excited about. I feel really hopeful that this is the right way to go for me. I'd cross my fingers but they're very swollen atm.

Grockle Wed 17-Jul-13 09:36:43

Hello.... Welcome, newbies. smile

my positiveness seems to have waned somewhat overnight. confused I feel quite unwell & so exhausted. Trying to drag myself to the end of term. A couple of weeks of almost no pain, some energy & feeling quite bright & chirpy was lovely though. I just wish I know what had caused it so I could repeat it. I stopped taking all my meds a few weeks ago because I felt like they weren't helping & were just making me fat & sluggish. I felt amazing for a while but now I feel like I am having a crash. So, do I medicate or not? Do I start eating wheat again or stay off it?

Well done, fuzz. I think if you ever decide 12 hours is not enough, it's easier to build up from that than to reduce hours so I think you have done the right thing.

I have tried TENs in the past but it either did nothing or gave me painful electric shocks! I don't know if it was me or a rubbish unit or what. I know people love them though.

Struggling to get going today sad

Solo Wed 17-Jul-13 12:27:30

I have not made it to work today sad still in bed actually blush), I'm sooo tired.

I am wondering if the OH people might retire me medically or make me medically incompetent...? anyone know anything about these?

Matildathecat Wed 17-Jul-13 13:41:25

Solo, can you indicate what type of employment you have? I may be able to clarify a few bits for you.

Solo Wed 17-Jul-13 14:16:02

I'm a prison officer Matilda. and I hate to say it, but my symptoms don't make me a good one currently sad

fuzzpig Wed 17-Jul-13 14:44:40

There should be several hoops to jump through before it comes to that, solo. In my county they have stage 1/2/3 meetings for increasing levels of absence but they can do as many 1/2 levels as they want before doing the level 3 (which is the one where medical retirement may be discussed)

fuzzpig Wed 17-Jul-13 14:47:45

Oh and grockle/magso I actually can't just increase my hours again now! Basically this was the last chance to decide my permanent hours, after being only on a temporary change for several months. If I want to increase them in future I will have to apply for vacancies. But that's fine - I am happy knowing the pressure is off now. smile

Solo Wed 17-Jul-13 15:10:08

Hmmm... well, I'll go and see what they say. Either way, I'm out of there after September. It would just be nice to go with a pension so that I could afford to do a fairly light pt job.

Solo Wed 17-Jul-13 15:11:06

Fuzz it's that pressure that makes everything worse isn't it?!

neriberi Wed 17-Jul-13 16:30:39

Afternoon ladies! hope all is well? Ive just got my latest lot of test results back and part of my immune system isn't working properly so I've been stuck on prophylaxis.

Grockle Wed 17-Jul-13 22:11:12

I'd love to know about that, Solo.... about how easy it is. I wish I could be retired. I love my job but I get so ill sad I'm on my 2nd trigger meeting & almost at my 3rd but they've now doubled the amount of absence I need to get to the next stage.

I don't know what to do about DS... he doesn't fall asleep. Tonight it was almost 10, yesterday the same, at the weekend, it was 10.30. I know it's hot but he has a fan & this is ridiculous.

Hi can I join you nice ladies?
7 year history of ataxia here, coming and going (unknown cause) til last year when it hit badly and took me off my feet for a few months. Now been left worse than before with intermittent ataxia, terrible fatigue and restless legs and a few other neuro quirks. I'm back at work but struggling and have finally decided to get a wheelchair for long trips as I just can't walk far any more. My GP has been fab but the hospital docs less use than a chocolate fireguard!
I feel stuck between the able and disabled world sad

fuzzpig Thu 18-Jul-13 08:56:07

Hi medusa, welcome! Sorry you are having such a rough time. I had to google ataxia as I'd not heard of it. That sounds really frustrating. I'm glad you've got a good GP, they are worth their weight in gold. Very annoying about the hospital staff though - was that a consultant? What job do you do?

Solo yes the pressure is maddening, for me it was basically the pressure not to be off sick. My manager is nice and understanding but I am still scared of missing work. And even if I earn less money by doing only 12 hours, it's got to be better than doing 16 but missing several of them and getting sick pay instead, and worrying about losing my job.

I hope it's not too much pressure on DH as now he's got to get more work really. He will be finding out today if he's passed his fitness instructor NVQ (fingers crossed pleased, spoonies!) and then hopefully he can look for work in one of the many local gyms. Am really hoping they won't be put off by his age (45, although doesn't look or act it)?!

neriberi Thu 18-Jul-13 14:35:09

Afternoon all, I was just wondering how on earth was everyone coping in the heat?

crashdoll Thu 18-Jul-13 17:20:49

Afternoon! I'm suffering in the heat - extra swollen. sad How's everyone else?

I'm in a horrid flare but I can't take steroids to ease my symptons because I've now got osteopenia (kind of pre-osteoporosis) and we don't want to take the risk of my bones thinning even more. I'm hoping I can start the new medication sooner than they think. Not sure I can keep going on like this, working 4 full days a week and just generally trying to cope. confused

fuzzpig Thu 18-Jul-13 17:26:51

Oh god the heat!!! Me no likey.


fuzzpig Thu 18-Jul-13 17:28:19

Crash doll that sounds awful is there anything you can do to try and stop the bone thinning progressing?

crashdoll Thu 18-Jul-13 18:32:33

fuzzpig Apparently weight bearing exercise but the osteopenia is in my feet and my worst affected RA joints feet! I'm going to ask my GP for a bone density scan of my whole body as I think I'd feel better knowing. I have vitamin D issues, so I need to keep up the supplements and attempt to sit in the sun for long enough to get vit D but not long enough to get hives. hmm Sorry, whinge whinge whinge!

gallifrey Thu 18-Jul-13 21:13:12

hi everyone, hope you are all doing well.

I've had an awful day, I went to the doctor and cried, I couldn't explain to him why I was so upset as my 2 yr old dd was whinging and crying and trying to play destroy with my phone...
I'm still not sure if I actually achieved anything!

I'm moving next week and will have to go through the whole thing again with another doctor, I'm fed up with being fobbed off and given stronger painkillers, I will be taking tramadol for ever it seems and I can't carry on like this any longer.
I fucking hate it so much, I'm not normal enough to do anything like get a job or go for a walk or do the housework without crying in pain and having to lay down after, yet I'm not disabled enough to get DLA or any bloody help with anything. It bloody sucks sad I hate my life

KatyMac Thu 18-Jul-13 22:25:57

Went to see the GP today; not because I was feeling rough but because I have excema (sp) in my ears, if I could scratch them with a cheese grater I would.

He took one look at me took my temp (39.something) had a look in my ears & I have a major infection

Co-amoxiclav(7 days), ear drops, an ear swob & a possible consultant appt depending on the results later

Of course now I have a diagnosis I have collapsed in on myself and retired to bed (I really do feel awful)

fuzzpig Thu 18-Jul-13 22:26:21

Oh gallifrey sad sorry you're having such a crap time. Hopefully your new doctor will be really good (and don't be afraid to switch if they aren't). Hugs and spoons to you xx

Crash can you get vitamin d injections instead? I've heard you can get them if deficient.

fuzzpig Fri 19-Jul-13 09:41:28

Argh I wrote another post last night but iPad died. Sorry about the ear infection Katy, they suck angry and oh god the itchiness! It's always too far in to scratch. I have even been known to attack it with a cotton bud dipped in boiled water blush

I often use a hot (using recently boiled water) flannel as a compress on my ear when it hurts, especially at night when I lie on it. My mum puts lavender oil on it too.

Matildathecat Fri 19-Jul-13 11:22:16

Solo, typed a long message to you yesterday which vanished! Not happy.

Anyway, I worked in the NHS which may be similar . The long term sickness policy was led by HR and Occ Health were asked for their opinion on fitness to work, any adaptations to hours or environment than may help.

Occ Health did this and HR made the decisions.

I was dismissed after 11 months. After25 years with a totally exemplary record. Not one word of thanks or good wishes. Bitter? Yes.

Now, at 47, I cannot work but have been advised not to apply for ill health retirement until I have exhausted every possible treatment avenue. It's ridiculous as its perfectly evident I will not be fit for work as a midwife again. I have a blue badge for gods sake! My neurosurgeon has told me that chronic pain management is my only option.

In the NHS the ill health retirement applications are assessed by ASOS and they are not minded to oblige. I am psyching myself for a fight.

Has anyone here been through the ill health retirement thing? I'd love to hear from you.

Hope that helps.

Solo Fri 19-Jul-13 13:33:05

Thanks Matilda our OH is ATOS too. Ah well sad

neriberi Fri 19-Jul-13 14:28:07

The heat is not mixing very well with my super low blood pressure, I've been extremely ill the last couple of nights after my commute home.

Crash, I have a vitamin d deficiency. My consultant has told me to take supplements (but not with calcium because of the problems caused with build up) and to get a bit of sunshine. I've found that holland & barrett is the best place to get them from because they do lots of different types / strengths etc.

crashdoll Sat 20-Jul-13 15:55:05

Wish you better KatyMac and sorry to both neri and gallifrey who are having a tough time. Hope it's cooler where you are today fuzz? It's quite humid here but not as bad.

Thanks for the tips of different types of vitamin D. My GP won't agree to the injections because of cost and to be honest, the calcichew tablets are fine, I just need to remember to actually take them!

I'm feeling quite down at the moment. sad I have this urge to be on my own all the time. The pain is draining me and the more painkillers I take, the less able I am to motivate myself as I'm so sluggish. I have a party to go to tonight and all I'm thinking is "I look fat and ugly" and "I hope there are enough seats so I can sit down". I'm not going with friends, I'm taking my own car so I can come home when I want but I don't even want to go. I'm 25, yet I'd rather be at home in my pjs on a Saturday night than hang out with my friends. blush

Matildathecat Sun 21-Jul-13 11:17:47

Feel as if I have been hit, hard across my lower back with a cricket bat. Seems my hopes for the recent nerve block I had we're a bit premature.

Codeine it is. Hope it doesn't progress to a tramadol day. Of course have already had my naproxen and gabapentin. Hate all these drugs.

Hope others are faring better.x

Matildathecat Sun 21-Jul-13 11:18:29

Were, not we're. iPad.

magso Sun 21-Jul-13 12:25:38

Matilda that sounds very painful. Have you just had the nerve block? I Know what you mean though with the cricket bat/ kicked by a horse analogy.The mix of Tens and pilates has eased my minor upper back lock up so breathing is much more comfortable, thanks for your advice. I will see the chiropractor next week so hopefully should help further. My lower back troubles always set off the upper back. The CFS works against it all.
Fuzz I too cannot just ask for more hours, but would have to apply for an advertised post with the extra hours to add to mine. However in a better patch I do sometimes cover for others, which has the advantage of being able to say yes or no depending on how I feel. But that is for the future, once you are feeling more well.
Crashdoll I use an under tongue vit D spray. It's expensive ( for the higher dose) but I remember it better (keep it by the tea jar so easy to grab whilst brewing) than the chews from the hospital. ( my gp will not prescribe them - only the hospital when in on steroids for my breathing). I always get long flare ups of joints and back after coming off short course of high dose steroids for my lungs. I hope not being able to have steroids gets the doctors to look harder for a safe but effective treatment for you.

OddSockBox Sun 21-Jul-13 12:28:19

New poster on this thread. I have chronic pain in my lower back.

Today's dilemma is the coming weekend when there's a family wedding and I don't think I can handle all the activities planned, but there's a lot of pressure on me to. I don't know whether to just "suck it up".

Solo Sun 21-Jul-13 12:32:05

Hi all. How are you doing?

I'm still in bed; I feel like I haven't slept in weeks...

Went back to GP on Friday and he's certificated me for 2 weeks, but that goes into my 2 weeks leave and I'm not sure where I stand with that as I know you can't have leave when you are off sick. I think I'll have to ask him to cert me for longer as I come back directly onto nights from leave. Can't leave them in limbo for nights. Bloody hell! I'm fed up sad

OddSockBox Sun 21-Jul-13 12:32:31

For the people talking about TENS I have some info. Most TENS machines you see in the chemist etc just do 'High TENS'. For chronic pain Lo-TENS is better. explains it more. Lo-TENS produces endorphins to block the pain. You have to get the type of machine that allows you to change the settings to the ones in the link. Again I think I got mine from Amazon. The first came from Physiomed but kept falling apart.

Solo Sun 21-Jul-13 12:33:35

Oh and I go on 'holiday' on Friday next and ATOS have given me an appointment on......... Friday! hmm

magso Sun 21-Jul-13 13:54:48

Welcome Oddsockbox, and thank you for the helpful Tens link. Mine seems to be a mixed burst type by the sound of it.
Its always hard to know what to do with occasions. If you want to go then could you go for the actual service part, then depending on timings rest before the meal then skip (most of the)the evening part? I am assuming others could look after children. Is there any where you could rest - such as a relatives room or hotel lounge if you are not staying overnight.
Hi Solo, I've had a lazy morning too. Dh has taken Ds out while I get started ( very slowly) on the chaos that ds leaves! Atos on Friday! Will you be able to fit it all in or have to reschedule one or the other? We often start our journey to our holiday location(France) on a Friday night, so ds is physically tired enough to cope with the start of the journey and tunnel crossing stopping overnight part way. I don't know what happens with sick leave and holiday overlapping. I think the GP can only sign off for 2 weeks (or is that hospitals?) at a time, so maybe extend the sick note just before you go if you think you are unlikely to be fit for nights on your return from holiday. Certainly worth giving GP a ring to sort it out.

Solo Sun 21-Jul-13 14:19:37

We are meant to be leaving for hols on Fri morning ~ early! <eek>
I will have to reschedule the meeting and will phone line manager for advice re the cert. Bloody more stress and worry I don't need.

crashdoll Sun 21-Jul-13 15:44:23

Afternoon all. thanks for those having a rough day. We need a 'spoons' emoticon! I went to the party in the end. I had a good time but there weren't enough chairs, so I stood a lot. My hip is really feeling the pressure today and my feet are swollen.

Those of you with joint/bone conditions, do you find TENS machines make any difference? I use it for general aches and pains (of which I get many due to the bad way I walk) but for my 'normal' pain, it does nothing.

OddBox I tend to save up spoons for these sorts of events and suck it up. I do cave a lot to family pressure, especially where older relatives are concerned but I have a major guilt complex. blush Sometimes, you can only really decide on the day or half way through. What sorts of things will you be expected to do?

OddSockBox Sun 21-Jul-13 16:28:05

crashdoll Problem is it being the whole weekend - from fri lunch to sunday night. Travelling - 1.5 hours car (passenger), then train 1 hour, then sitting around on painful chairs, then train back, then socialising, then next day wedding where there will be chairs but I'm not sure what like plus dancing the usual, then next day long car journey again. The Friday part's been sprung on me rather and I'm getting a guilt trip about it for saying I might not be going to that bit.

belleshell Sun 21-Jul-13 19:23:05

Hi All, ive not been AWOL but just tired busy and too hot, the cloud this weekend has been heaven sent apart we have been camping so I ended up with hot water bottle last night and 2 sleeping bags.........I hate my dodgey thermostat!!!!

Oddsock, I have to take rest days following any kind of event, ie im off tomorrow cos we have been camping which exhausts me beyond belief but if I don't go I don't socialise, I do actually do less when camping( no cleaning ironing shopping entertaining kids!!!) but the social side kills me...........

as for the heat.....omg,( solo are you high security??) we cant take any spare uniform, its an old Victorian building, no air con ... I get clammy from 7.30 am and just don't cool down..........its awful, my uniform clings, I feel sick and my lead suit feel like it has a lead suit on too!!!

spoons and a cooler night to you all xx

Solo Sun 21-Jul-13 23:18:27

No, not high security, an old Victorian building though with around 18" thick walls (like old storage heaters; they heat up and hold the heat) and all wearing wool trousers! it's torture sad
I agree about the cloudy felt was bliss!

yegodsandlittlefishes Sun 21-Jul-13 23:39:59

I have been having quite a bit of joint pain lately. In the past, I've found pilates, Wii fit exercises and walking helps, to build up muscle strength and improve posture. Losing weight helped, but since giving up a cleaning job and starting on thyroxine, I have put some weight back on. I rub ibuprofen gel into my joints at night, to get to sleep, and I try low dose asparin. If it gets to the point where it is hard to stand up, I have a rest day or take nurofen.

Grockle Mon 22-Jul-13 02:01:42

Hello...hoping everybody is on the mend. Welcome oddsockbox.

Katymac, that sounds nasty sad & gallifrey, hopefully you will find a really good GP when you move.

Solo, what a nightmare with ATOS!

Matilda, our OH just changed from ATOS to someone no better. And work are not obliged to do anything they say and they haven't!

I'm currently on tramadol, amitriptyline, gabapentine & mirtazipine. None of them help. How can I still be in pain? What are my other options? WHat might stop the pain & faitgue? I'm not depressed or suicidal but I don't want to live like this. I can't.

yegodsandlittlefishes Mon 22-Jul-13 06:53:08

Grockle, have you tried (or would you consider trying) acupuncture? I've heard it can work wonders for some people.

crashdoll Mon 22-Jul-13 07:46:57

Grockle Are you in any sort of therapy? I do have a history of MH problems but they were exacerbated by my condition, so I've returned to therapy. It can be hugely cathartic just to talk and get it out. It won't help the pain as such but may help you to manage it on an emotional level? thanks

Solo Mon 22-Jul-13 09:37:37

Yeo I was just about to suggest acupuncture. I went to a Japanese acupuncturist/herbalist who had had many successes with patients suffering ME (to the point of cure). Sadly, I was not one of them and had her stumped, but it works for a lot of people and many use it for pain relief. Just find one that is recommended by someone you trust.

Solo Mon 22-Jul-13 09:39:03

Yegods not yeo hmm. I don't know how many blunders I made typing that out and putting it right before posting blush sorry!

OddSockBox Mon 22-Jul-13 15:44:12

Grockle are you under a pain management clinic? I am at the moment and finding the helpful things I've learnt from it is that for me stress and pain are linked, so I'm learning relaxation techniques. And also it's helping me with pacing myself/goal setting. I'm thinking of looking into some counselling as well when I've done that just to talk it all over. It's been a big shock to my life.

Matildathecat Mon 22-Jul-13 16:06:13

Hello to all, hope you are bearing up in the heat. Reading some of your posts makes me feel so relieved not to be working. Such a pressure for you all.

Solo, sorry I don't know your story, is th ATOS interview in relation to your inn health retirement ?

Grockle, your pain sound horrendous, are you under a pain clinic? I can't function at all if I take tramadol but it does work. Am so used to all the others I feel fairly normal though do forget things a lot. Hydro type excercise and relaxation are great but still don't help in the long term.

Grockle Mon 22-Jul-13 22:08:05

Not tried acupuncture, no. I don't know how to find someone good. I do have a hypnotherapy session booked in a couple of weeks and then an assessment with a private practice who treat FMS through nutrition & supplements - they were highly recommended by a friend but cost an arm & a leg.

Crash, I am not in any therapy - I can see how it might help though. And I'm not under a pain clinic either, just a GP who tries to be supportive but is openly exasperated

Solo Tue 23-Jul-13 00:06:25

Matilda no, it's just the occupational health that my work employ. Because I've had/am having sick time, I get sent there.

gallifrey Tue 23-Jul-13 13:39:30

Hi everyone, thank you to everyone that commented/wished me luck re my last post.

Yesterday in light of my 'I don't want to be on tramadol for ever' thing I didn't take any of my medication at all.

I am on tramadol, naproxen, paracetamol, amitriptyline and omeprazole normally.
I didn't take anything all day and to start with I felt great, didn't feel sluggish and lethargic at all and did a bit of hoovering etc.
By about 4pm I felt terrible and in a lot of pain, my legs in particular were very painful and achey. I couldn't even stand up to make the dinner! My hip and back were also painful. In the end I took my normal afternoon meds and my night time ones at the same time at about 7pm. (4 tramadol, 2 paracetamol, 2 naproxen, 2 amitriptyline) decided it would probably be ok as I hadn't taken anything all day.
Didn't sleep very well and DH had to help me get undressed as I couldn't move without it hurting sad

So I'm guessing the drugs do work...

Solo Tue 23-Jul-13 16:27:32

sad gallifrey

Matildathecat Tue 23-Jul-13 17:33:37


Your post leaves me really concerned...4 tramadol plus all the other meds is enough to cause you real harm. You should never double up your dose. Sorry to say you are better keeping your levels steady with your normal dose. If you feel like reducing the dose do it slowly, ie all normal but only one tramadol, then assess how you get on.

Sorry if I sound preachy but if I took all that I would actually be unconscious. And i take a LOT of drugs. Sounds like you have enough problems without a knackered liver. If you want to reduce slowly your pharmacist would be able to advise you.

Take care.

On a personal level I have a dilemma. I have been taking my dog to agility classes. The people there only know I have a 'bad back'. Now the dogs are getting better the whole thing is getting much more physical, essentially you run the course with your dog. Last week I tried to hobble along but spent all next day in bed. Today I did ask for help but really it's a physical hobby. I'd be sad to stop as we both enjoy it and I am meeting new people and giving my week a bit of structure. Do I speak up and ask for more help or accept I'm not up to it and find another hobby? (One that involves lying down!!) the group are nice but we don't know each other that well and everyone else has their own dog, of course.

Opinions please?

OddSockBox Tue 23-Jul-13 17:43:12

Gallifrey that sounds like a bad day sad I'm the same I want to get off the drugs but I'm holding off until I see the pain management nurse because it sounds like it's not as easy as just stopping them, and when I've tried stopping I've had a similar experience to you.

yegodsandlittlefishes Tue 23-Jul-13 19:59:28

Solo I answer to most things (Yeo sounds kind of Cornish, I like that!)

Gallifrey That sounds terribly frustrating. I used to live in an area where acupuncture was on NHS through referral at hospital. I doubt it is done like that here, might be worth putting out some feelers to see whether you can find out about NHS acupuncturists (information on them might be more readily available than for private practitioners) and whether you can book a private consultation.

Another option to consider is chiropractic treatment, but not knowing your history I've no idea if this is a helpful suggestion or not. I've found it very helpful for joint pain and back pain, but when in the amount of pain you describe, it was due to a trapped and bruised nerve. It was eventually helped by a combination of pilates exercises, physio and then chiro...simple really, I know!

gallifrey Tue 23-Jul-13 21:55:45

Thanks everyone, I don't normally take that much all at once, but desperate times and all that!

I have been seeing a chiropractor twice a week since january, he has been fantastic and worked wonders. I have cut it down to once a fortnight recently and the usual niggles have started to creep back in but tbh I can't afford it @ £35 a session. Also we are moving so I will be going to someone else that he has recommended.

yegodsandlittlefishes Tue 23-Jul-13 22:44:24

Yes, very expensive. I saw a chiropractor for about 20 weeks for some shoulder pain/restricted arm movement and it was £35 a session. No holiday that year!

Good luck with the move. Are you moving somewhere nice? I find the aches and pains are easier to cope with if the scenery is good!

gallifrey Tue 23-Jul-13 23:29:21

yes we are moving to Milton Keynes :-) hopefully find a better doctor there too.

Grockle Wed 24-Jul-13 02:41:55

Gallifrey sad Please be careful.

Matilda, say something... can you say you have bad legs too? You don't need to give your entire medical history but it would be such a shame if you stopped going without at least trying to make it work. It was be sad to have regrets. Someone might be willing to help. In fact, if I lived near you, I'd do it... we're just have to hope we could alternate our good/ bad days grin

I stopped all my meds for 2 weeks & felt amazing! Then it all crept back slowly. The insomnia didn't go away at all. I started back on minimal meds - tramadol & ADs but I'm so shattered, I can't function properly.

I used to have a chiropractor for a year & it was heaven when I had terrible back pain. He used to jump on my back & make my spine crunch (it was a bit alarming!), causing instant relief. I felt very bruised the next day & the pain came back slowly over the next few days. I get reduced rates through work.

Today I saw my GP who has now referred me to the CFS clinic. No idea what they do there but at least it's another place to try to get some help & support. Last day of term tomorrow. Phew!

SirBoobAlot Wed 24-Jul-13 02:47:12

I'm so bored of this shit.

<dramatic sigh>

magso Wed 24-Jul-13 09:38:05

Grockle the CFS referral sounds helpful. Mine gave me some I:1 sessions, which were quite helpful in the long run (tiring at the time) but I think put me on a better path, even though I was quite negative. Just having help in pacing was good, despite thinking I had pacing nailed before I started, and it was good to talk with someone who understood illness and was positive about what I was still managing to achieve.
Well I went to the new chiropractor (old one is away at present) but she only did an assessment so I am back to using my Tens. I go back next week for manipulation. Not helped by falling and the usual bruises. The cost of regular treatments is the main problem.

SirBoob how are you - or is it best not to ask?
Gallifrey I hope the move will help. Bedfordshire seems to have quite a good health authority so hope you are lucky with a GP who can help.
Matilda I think saying you are restricted with running would be better than leaving the group. Could you and you dog just do things slower?

Grockle Thu 25-Jul-13 00:11:30

SirBoob, you ok? I hear ya, totally bored with (by? of?) all this shit. However, I finished work for the summer today & feel a million times better. I will still work but at my own pace & on my own without other people making demands on me. I know I am lucky.

I have high hopes of CFS clinic. If only I could sleep.

Love & spoons to all.

VenusSurprising Thu 25-Jul-13 01:15:47

Hi there!
I just wanted to post and say that I had ME for 8 long and painful years, but now I'm fine.

I used to use up all my spoons just getting up and washed, and used to so and the rest of the day crawling around and lying on the sofa, moaning with long muscle pain and sweating.

I used to have baths hot and then cold with lavender oil and black pepper oil, and I changed my diet completly - having no refined carbs or carby fruit.
Just lamb, and pear some weeks, day after day, and then fish for breakfast and a big vegetable and brown rice balti/ tomato for evening meal, week after week.

It took me 8 years of just giving in to ME to get out of it. I had to accept that I would always have to acknowledge it as being there.

I work part time now as I got ill from ft work after having my DC. So ft really, if you factor in that parenting job!

I try and eat cleanly, and always sit whenever I'm anywhere. I can't stand for long at all. I make people give me a seat on the tube/ bus.

I carry money always for a taxi, and I've learnt to just leave wherever when I need to. When I'm out for a drink I have spirits and non yeasty drinks: gin, vodka with soda/ tonic.

I try and have one after noon nap every week, ad have trained my DC to put on a DVD / book / get out the lego while I conk out.

I only exercise in a gym, as I can't stand the idea of being miles away from home and having to get back again before I can rest. I do yoga and Pilates and I do aqua aerobics, but only for about half an hour at a time.

Learning to slow down and pace myself was the hardest thing to do as I was pretty hyper, but it's made the most difference in my life.
Being able to say "no" is also a huge positive!

Hope you all find a spoon in your back pocket tomorrow- not to spend it necessarily, just to hold it and know you have it!

KatyMac Thu 25-Jul-13 07:48:21

Matlida - can you borrow an interested teenager to 'run' the dog for you?

Matildathecat Thu 25-Jul-13 10:22:49

Thanks for the thoughts about my dog agility class. I know it's a pretty trivial dilemma ! Anyway I am going to speak to the instructors and give a bit more info. They are willing to help but I've had to ask every single time and we all hate asking for help, I think.

Venus, your post is really inspiring, my SIL had a really similar illness, yes it did last years but she has recovered. She manages her life in a very similar way.

New question...I notice that lots of people on this thread take tramadol. Now I take heaps of drugs, naproxen, gabapentin , cocodamol ,amytriptiline , but tramadol is only for really awful days and then I can't do anything except lie down in a semi comatose state. Can others actually function on tramadol ?

Have a good day.x

Solo Thu 25-Jul-13 16:05:57

I can't take Tramadol as it gives me massive chest pains. I generally take nothing at all as I can't stand taking drugs. I reckon that if I was up for them, my GP would have me on quite a few now, but I refuse them and manage my symptoms as best I can without.

SirBoob you ok? <daft question I know>

I'm off on hols. Not looking forward to it tbh, but hey ho! I'll see you all soon. Take care and many spoons to you all.

CFSKate Thu 25-Jul-13 17:22:40

A bit of good news

"We are pleased to announce that Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), has agreed to advise the charity on all aspects of a UK rituximab trial.

Professor Edwards was responsible for both the phase I and the proof of concept phase II (NEJM 2004) studies in rheumatoid arthritis , which formally established the validity of B cell depletion in autoimmune disorders. It all started with a paper called ‘Do self-perpetuating B lymphocytes drive human autoimmune disease?’ published in Immunology in 1999 [1].

There is no other expert in the UK who is better placed than Professor Edwards in advising the charity in setting up a rituximab trial to benefit ME patients."

crashdoll Thu 25-Jul-13 19:56:36

I'm having a really tough time. sad I'm lonely as well as sick and tired of being sick and tired. I'm incredibly disabled by my condition at the moment and I hate the way I am. I'm scared this is how the rest of my life is going to be. If it is, I just don't want to live it.

Matildathecat Thu 25-Jul-13 20:10:25

Big hug, Crashdoll. This, too will pass.

Can you phone a friend?xx

magso Thu 25-Jul-13 23:03:29

Another gentle hug for you Crashdoll.

Grockle Fri 26-Jul-13 00:57:33

Venus, what a positive post. When you say you eat cleanly, what exactly do you mean? Is it still brown rice, veg etc?

I had an OT assessment today which was pointless. but I have another appointment next week for them to assess my hand, since i can't grip anything properly.

Crash, I feel the same - lonely & sick & tired of being sick & tired. The future can seem quite bleak and unappealing. So sorry. I wish there were a simple solution. sad

crashdoll Fri 26-Jul-13 04:53:50

Thank you all. I have therapy later so I'm going to talk it out a bit. I'll be ok, just having a blip. I took some tramadol and had a few hours of good sleep thankfully!

gallifrey Fri 26-Jul-13 09:50:24

sending love and spoons to you all, I know exactly how you feel xxx

candycoatedwaterdrops Sat 27-Jul-13 09:50:57

Just popping in to say hi. It's crash under a new guise. I'm counting down the days until I get to start my new treatment and praying I'll be one of the lucky ones that it works really well for.

thanks for all x

Grockle Sat 27-Jul-13 14:27:00

Hello, candy. I like your new name.

I'm taking DS pony trekking now. I need to sleep - had a 2 hour nap but can't wake up properly.

raggedymum Sun 28-Jul-13 12:10:22

Hi, I've had two of these threads on my 'watch' list but never was able to read more than a few pages at once, and never caught up. I hope it's okay to stop in -- I'm really struggling with fatigue problems for the last four years, but got fobbed off at the GP's early on, but I've now talked to enough people and read enough that I'm positive my experiences are not normal and I'm working my way up to getting an appointment at a new GP (although we moved in Dec and I still haven't managed to register yet sad ). I just feel like my whole life is a string of not accomplishing basic things while being completely exhausted at the small things I do manage.

Things came to a head yesterday after which I came to look for this thread, when I talked to my Dad on the phone and he was criticising me for not yet putting together a play table that he got DD at Christmas, and saying he wanted to get her a climber but he doesn't feel he can because I won't put it together. I know its ridiculous and I should be able to 'just do it' but we only just got our house on the market a month ago after moving and I was saving all my energy for working on that because it seemed the most important thing, and if I did more stuff I'd be even worse off. And since we got the house on the market things have been really bad because I've not been able to rest on weekends, as we had overseas visitors one weekend and I remember being worried about the next work week because I normally get sick by Wed if I do things both weekend days, and we did tons. And then that week was really bad and I had to work through the next weekend and last weekend was a social event that I'd promised to help out at. I feel like I can't ever get any friends because I'm always so tired and I wanted to use some energy for something that might help me get to know people, so I went. Then I was already really bad at work on Monday, and then just spaced on Tuesday and missed a bunch of meetings and by Thursday actually fell down the stairs twice, embarrassingly in front of colleagues and an out-of-town visitor blush. I thought the stairs must have been slippery (they are weird and twisted, so very thin at points), but DH said he wasn't surprised because I had been so tired and clumsy this week. And then my Dad complained about the table. And I thought maybe I should just put the table together, but we need to get a drill, and if I go out this weekend I know I'll be even worse at work next week and I really can't manage that. So I was crying and 15mo DD came over and hugged me, and its so pitiful that a 1yo needs to comfort me.

Sorry that was a big splat and I hope its not inappropriate here.

Matildathecat Sun 28-Jul-13 16:39:26

Candy, love your new name. Hope your new treatment helps, can you say what it is? Please don't if you don't want to. I'm just nosey and am a relative newcomer!

Raggedy, your situation sounds awful. If you were to read your post and imagine someone else had written it, what would you advise? Your DH sounds understanding, can you get any extra help from him or anyone else? I would get GP sorted ASAP and be asking for a whole range of investigations. Sounds like you are trying to prioritise tasks ( can't your dad put the bloody toys together for you?), maybe you can get even tougher ie afternoon in bed, time off sick from work, employ a cleaner, get DH to take kids out and do the food shop?? Really hope you can find the energy to put yourself first and learn to say no to others.

I am typing as lying on my bed due to severe back pain so am practising what I preach! Hope you feel better soon.x Btw it took me ages before I would ask for help, I know how hard it is.

Grockle Sun 28-Jul-13 22:35:45

raggedy, that's exactly what we are here for. I dont know what to advice, other than to be kind to yourself. Can your DH make the table? Or could your Dad come and make it? Mine has been quite supportive & is good at getting things done now he sees how ill I get.

I have done too much - having friends stay last week & going out all over the place every day seemed ok at the time. Then, the pony trekking yesterday tipped me over the edge! I've had a long nap today and am determined to take DS to Chessington tomorrow as a surprise. I've taken 2 zopiclone but still can't sleep sad

gallifrey Mon 29-Jul-13 09:55:23

hi everyone, we have moved to our new house, it's lovely with plenty of room downstairs for me to manoeuvre my wheelchair about. I'm absolutely shattered, even tramadol isn't touching the pain in my legs sad I felt quite good on friday and probably over did it.
Grockle did you go pony trekking too? I used to have a horse before I became disabled and I'm keen to start riding again but not sure if I could do rda.
Sending spoons to you all xxx

raggedymum Mon 29-Jul-13 12:57:18

Thanks everyone for the kind welcome! I was really stressed out this weekend, so very nice to see kind words.

I hope those who have over-extended manage to recover soon. Pony trekking sounds fun, even though very exhausting. I also used to ride horses, and taking lessons again is one of the many things on my list to do once we sell the old house.

And sorry, I didn't make things clear when I was all upset: DF lives in the US, so can't help with the table. And unfortunately DH has ME and is worse off than me. He helps a lot, though -- he does childcare while I'm at work and then works on a PhD in the evenings. He can't do anything very physical though. I'm afraid that the next home-thing I do is going to be mowing a strip of lawn so that the postman can continue to reach the door (the rest, embarrassingly, is now meadow -- it almost looks on purpose though, so a bit better than just overgrown, and we're tucked down the bottom of a hill so not embarrassing the neighbourhood), and I don't know when the table will get addressed. We can't afford cleaners or lawncare, etc., until the house sells -- I just looked at the bank account and we're slowly eating into our savings. I think I need to take the time to do a good budget and try to stop the creep before we're in dire straights. But, of course, that takes energy!

GP is also high on my list -- I have a lot of issues around that, so it is not as easy as it might sound sad I'm phobic of phones to start, which is one of the reasons we haven't yet registered. I have a lot of trouble letting myself be 'vulnerable' and so tend to minimize my problems at a Dr's, so if I'm not careful I'll go in and say I'm fine. And it is hard to get over because I have had bad experiences with being told I was making things up and what I was experiencing wasn't real, plus some nightmares in the US regarding health insurance which lead to a depressive episode, so there's a lot of psychological baggage to battle through. But I've told DH a couple times I really need to go, and I told you here, and I even told one person at work, so for me that is progress. Once I've told people I am more likely to take action.

Matildathecat Mon 29-Jul-13 16:11:17

Raggedymum, quick thought, could you confide in your Health Visitor? Some are really great. Maybe also ask a few friends and acquaintances for kindly GP recommendations. I think you have to go in to register and collect forms so you may not need the phone at all.

If your partner could go with you would that help? Also write a bullet pointed list of your problems or concerns so you can show your new GP . If the list is long or complex ask for a double appointment .

Last thing....bugger the table! It will happen at some point. If your dad mentions it tell him the truth. Maybe he'll fly over and help or at least getting on at you.

You've made a start, do hope you get some help soon.x

Matildathecat Mon 29-Jul-13 16:14:50

Stop getting on to you!

buildingmycorestrength Mon 29-Jul-13 19:11:19

Hello, raggedy. Several of us on this thread have found acceptance to be key to improving our quality of life. This means accepting (rubbishly low) limits on activity, accepting many trips to doctors and specialists, accepting help from others and being sometimes pathetically grateful to have it.

Some posters on this thread have virtually no help, no partner, no family nearby, etc so I am always mindful that although it SUCKS to ask another mum to walk the kids to school for me, sometimes that is how it is and thank god.

It also means accepting that some people won't get it, won' t want to get it, and will say the wrong thing. Doesn't mean I have to like it, but I have to let it wash over me as I am too busy managing my illness! I'm a good person who is ill, not a malingerer...and I avoid anyone who thinks otherwise.

It does NOT mean believing life will be like this forever. thanks

belleshell Mon 29-Jul-13 20:08:26

Hi all, so after another barrage of blood tests, there is still nothing except inflammation marks been slightly WFT is causing there horrific day and night sweats ( and its not the weather is been going on for a long time!!) oh and any advice on weight loss..i have put 3 lb over the weekend.........if I had piggedout great, but I haven't!!!!!!!! imnot happy sad

Grockle Mon 29-Jul-13 23:35:27

Yes, I did pony trekking & it nearly killed me! Combination of riding & a psycho pony but I won't be jumping on a horse any time soon. Welcome to your new home, Gallifrey.

Raggedy, I am phone-phobic too. I HATE speaking on them & I minimize symptoms too. Bonkers!

Belle, I've had awful day & night sweats. No idea why. I have photos pf me in a bikini on the beach in 30 degree weather with goosebumps. I have put on 1/2 a stone in the past 2 weeks sad

I took DS to CHessington today. I'd not have managed it without the Fast pass tickets I bought but we had a fab time! The drive was hard (almost 200 miles round trip) & I am shattered. Not asleep though, despite zopiclone hmm

candycoatedwaterdrops Tue 30-Jul-13 08:08:37

Matilda "Candy, love your new name. Hope your new treatment helps, can you say what it is? Please don't if you don't want to. I'm just nosey and am a relative newcomer!"

Thank you. smile It's fine. It's an anti-TNF treatment for inflammatory types of arthritis called Cimzia. My clinic have told me it had positive results, so I am feeling cautiously optimistic.

Belle I also pile on weight like there's no tomorrow. I'm very inactive which I think is part of the reason. Do you drink enough fluids? If I don't drink enough, I retain huge amounts of water.

raggedymum Tue 30-Jul-13 08:36:40

Thanks again, you're all so nice smile

DH and I talked again last night about registering. I think we may do it soon; I'm afraid I haven't asked him outright yet to phone for me, but I might soon. He doesn't like phones either, but not to the extent I don't. Another thing that is holding us back is that there are 4 different surgeries to chose from, and I don't know which to pick. I found some contact info for an ME support group near me -- would it be too weird to email that person and ask for recommendations as to what surgery or GP would be the best for pursuing fatigue issues?

belle, I don't know your backstory, but I also used to have awful sweats! Night and day -- I used to bring a change of clothes with me to work and wipe down in the bathroom with damp paper towels when I came in, because my clothes were soaked with sweat just from the morning commute, even in the winter. It turned out to be part of a dysautonomia which is now controlled with medication.

It's only recently that I've learned dysautonomia is often comorbid with ME, although my fatigue issues have only been for the last 4 years and I've had dysautonomia for 15, so I don't quite know what that means for me.

belleshell Tue 30-Jul-13 16:32:31

Raggedy, my back story is ME, was diagnosied about 5 years ago, but probably had it 11-12 years, the GP thinks it might be medication based, but I have messed about so much with my medicines im scared to change again, I have taken tramadol today instead of co-codamol, but I just don't think it works, I will persevere for a few days, I have also stopped my duloxetine. I cant take extra clothes into work unfortunately so i spend my whole shift hot and sticky, which makes matters worse im sure...

I don't think I drink enough at all, i feel it swishing inside me...... i am also inactive ( id love to walk like i used to) thanks to ME and the fear of a week in bed i don't do much other than my daily needs......... it makes me so sad, 2 years ago i weighed just under 10 stone, i worked so hard to get there now im just over 12 stone!!! i don't think i eat that unhealthly, and often go for healthier option in everything.........i hate ME!

gallifrey Tue 30-Jul-13 18:26:30

funnily enough I decided to take a cocodamol this morning instead of tramadol, I was in agony I could really tell the difference sad I took some tramadol at lunchtime but it's not really made that much difference. Wonder what else I can take that is stronger than tramadol if I'm still in pain after taking it. Morphine next I suppose. Or just put up with it!

Grockle Tue 30-Jul-13 19:27:50

Belle - duloxetine made my sweats a million times worse & I had to stop taking it.

We've had a home day today - am shattered & fell asleep on the sofa.

yegodsandlittlefishes Wed 31-Jul-13 07:56:48

Am on an activity holiday. What in the name of all things green and lovely did I book this for? I thought my new meds would help give me the energy I needed, but have woken just as tired and frazzled as I as last night and meds have not touched it. Have kayaking booked for me and DCs in a couple of hours.

lisad123everybodydancenow Wed 31-Jul-13 08:37:04

Message withdrawn at poster's request.

Grockle Wed 31-Jul-13 08:57:47

[ Lovely thread here]] about dealing with people (us!) with chronic pain.

Ooh hello! Didn't realise you were all over here, thank you Grockle for putting the link up.

magso Wed 31-Jul-13 09:42:25

Lisad I can't really help but had similar findings myself. CRP is I think found when there is active inflammation but is not specific to the cause - so it could be anything that the body is dealing with (ie infection/injury/ inflammatory illnesses). The ANA test - used to recognise Lupus can also be slightly positive with inflammation without nessesarily being caused by Lupus. At least that was what I was told. So I think positive results are often taken with a pinch of salt by specialists looking for particular syndromes. Hopefully they will investigate further.
Sorry you are feeling so poorly. It took me a long time to recover from my long stay in hospital with pneumonitis.

yegodsandlittlefishes Wed 31-Jul-13 09:54:49

Hello Lisa, welcome! Sorry, I can't help with the question about CRP levels.

I can empathise about feeling crappy, though, as I am also feeling crappy today too.

How did you get on at Legoland, if you don't mind me asking? I always found it hard just to walk around there watching DCs and DH doing things. Exhausting, and well beyond tired at the end of the day. Hope you have the chance to recharge today (and tomorrow if needed).

yegodsandlittlefishes Wed 31-Jul-13 09:57:18

Hello murderofgoths how are you? Hope you are having a relatively good day today.

Bit of a mixed one today, think I slept funny and aggravated everything. How are you?

LackaDAISYcal Wed 31-Jul-13 10:05:55

Signing in again smile

I was on one of the other threads, but lack of MNing means I've dropped off, but Grockle has reminded me you are here <waves>

Mixed connective tissue disease with symptoms of mainly lupus but also myositis and scleroderma. I'm sun sensitive, so the recent hot weather is killing me and have just had a horrible flare up which was nipped in the bud with depo-medrol. Struggling a bit with the holidays as I want to do stuff with the kids to alleviate the boredom, but if I do too much and then go to work in the evenings, I am totally wiped out.

So, are pain management courses any good? Our GP surgery runs a short course for people living with chronic pain, which they mentioned when I was diagnosed two years ago, but my pain levels are normally not too bad and I have been trying to be in denial about the whole chronic illness thing. However, that last flare up has been the worst from a pain point of view (normally I have skin issues in the main) and my pain levels are getting progressively more pronounced and the GP mentioned the course again...

Kormachameleon Wed 31-Jul-13 10:18:30

Can I jump in here please ?
I'm having a flare and am being driven insane with pain and fatigue
Doctor is useless , I saw her yesterday to say my pain is uncontrolled and severe and she offered tramadol but then realised it interacts with one of my other meds so wouldn't prescribe it but wouldn't offer anything else

So it's suffer or suffer

I'm so bloody fed up of it

LackaDAISYcal Wed 31-Jul-13 10:18:53

LisaD, have they tested for anti-RNP? I have high ESR and CRP but Anti-Sm (specific for lupus) is negative but I am positive for the anti-RNP which led them to the mixed connective tissue disease dx which is an overlap of lupus/scleroderma/myositis. I'm being treated for sero-negative lupus though as my symptoms are mainly lupey. They are certain it will progress to sero-positive lupus in time, but said that as I got my dx quite early on in the rheumy journey, I'm still in the very early stages of my disease.

Lupus apparently improves after menopause though. Never thought I'd welcome menopause, but bring it on grin

yegodsandlittlefishes Wed 31-Jul-13 10:24:12

I woke up cold and depressed and meds had no effect.

Eventually worked out that am feeling this way due to illness and it might not all be completely DH's fault, and divorce (or whatever) not likely to improve my day. (I can joke now, but it is hellish to be feeling it). I am slowly warming up and beginning to feel like I can risk a shower and getting dressed.

Managed to convince DH to take my kayaking slot and I am hoping to summon the energy to buy warm clothes. I feel whatever I do today, I may be borrowing spoons from tomorrow. DH does not understand this idea. He seems to want to take each day as it goes and needs a new explanation and discussion every day.

Can't stop crying, but at least I am not having unwanted negative thoughts.

All this for some walking around, a swim 2 days ago and sitting in a rowing boat for a bit yesterday.

LackaDAISYcal Wed 31-Jul-13 10:24:32

korma, have you tried low dose amitryptiline? I was prescribed 20mg at night and it does help enormously, but it makes me very sleepy and a bit zonked out the next morning. I'm fine if I take it at about 8.30pm and in bed before 10, but I work evenings until 10.30 so if I take it when I get home, I can't get out of bed when DH goes to work next day and the kids wreck the house if not directly supervised! So I don't take it.

LackaDAISYcal Wed 31-Jul-13 10:26:29

yegods, I would just do a couple of days of relaxing and let DH and the DC do the mad activities! I'm much happier on the sidelines these days. Sorry you are feeling so grim; it is such hard work sad

CFSKate Wed 31-Jul-13 10:29:40

for those with ME, CFS

we need this drug trial to happen. I don't want to spend the rest of my life ill.

Kormachameleon Wed 31-Jul-13 10:30:56

No lack I haven't but I notice that many seem to take it. Will google it just now and see if it will be an option

I have to have bloods done today and then call the Rheumy helpline to see what they can offer but I'm not gonna hold my breath

I feel really panicky and stressed

yegodsandlittlefishes Wed 31-Jul-13 10:54:09

Thanks DAISY, I do need to take that advice (my body isn't giving me much choice, feel achy/fluey and I know not to push myself with this). I have spent Soooo much money on this trip, and haven't had a holiday for a while, so wanted to make the 'most' of it.

Spoons to all!

Grockle Wed 31-Jul-13 11:35:28

Hello... link to other thread didn't work but am glad both threads are helpful.

I'm paying for our trip to chessington on Monday & for doing too much last week. I feel dreadful. It's not like I've been climbing mountians. We're off to Camp Bestival tomorrow which is DS's holiday so I can't not go but we're not packed & I really can't face it. It'll be ok when we are there but the thought of it is making me feel sick.

Lisad, I don't know. My lupus diagnosis is changed every time - I have it, I don't, I do, I might... I don't know any more.

When you say 'sun sensitive', lackadaisycal, what does it do to you?

Grockle Wed 31-Jul-13 11:45:07

Second attempt to link to other thread:


LackaDAISYcal Wed 31-Jul-13 12:08:32

Five minutes in the sun, Grockle, and I am the colour of a well cooked lobster (though it is just a reaction rather than actual sunburn), my upper arms and decolletage are permanently mottled red/purple as well. I get a nasty itchy blistery rash and it brings out joint pains and fatigue sad.

I used to be a real sun worshipper too. Now I use factor 50 even on a cloudy day to try and minimise the effects of UV.

I started a thread on here a few years ago (before I was diagnosed) about the colour of my arms etc and I now have a huge patch on my stomach too. Doc says its livedo reticularis and is inflammation of the blood vessels due to the lupus, though I've read that it can be connected to heart problems confused

neriberi Wed 31-Jul-13 13:40:42

Afternoon all. I was at the docs last night, my blood pressure is super low at the moment so much so that I've been told to wear flight socks, that's all find however I am finding being a healthy sick person bloody exhausting at the moment, I even asked my DH if I was hard work and was being married to me hard work?

I've been told by my consultant and now my GP that I need to slow down and cut out the commute and that I should be taking things a lot easier than I am and that I need to stop working in London, which is all fine in principal but how on earth do you slow down when you have no choice? I keep being told what I should be doing to help myself and I know what I need to do to help myself BUT I'm not in a position to do any of it because of my current financial situation. Right now I'm angry that I'm ill and can't for the life of me remember what its like to feel normal anymore? And I'm fed up of people pointing out the obvious as well. Rant over.

I believe a CRP blood test is something to do with checking for inflammation. See the link for a bit more info.

Matildathecat Wed 31-Jul-13 13:53:03


Hi, I am starting a pain management course I September it's run by the local hospital pain clinic. They held a taster day a couple of weeks ago and I was really impressed.

It's 8 weeks long one half day a week. Mixture of discussions, pacing, ideas for alternative therapies etc. also an exercise session and relaxation. By attending you also become eligible for one to one Alexander Technique classes, free group exercise classes for 'people like us'(!) And, I think, acupuncture. It's run by psychologists.

Tbh I think, as a former hcp, that I probably know/do most of it already but even if one thing helps I'm up for it. In these days of cutbacks I'm amazed its on offer.

One thing they were clear about was that they were looking for ways of managing and living with pain, not curing it. They did not expect that we would be reducing analgesia even. I was pleased about that. Much as I would love to stop taking meds I certainly don't want any pressure to do so...

Hope you get something from your course, will look forward to hearing about it.

Thinking about dragging myself to the pool but my pain is zinging. Big sigh.

raggedymum Wed 31-Jul-13 15:41:53

Ugh. Had to come home ill from work today, and I didn't even do anything on the weekend sad DD keeps hugging me; I think she can tell I'm upset and is either looking to make me feel better or for reassurance. It must be scary for her to have her Mum so upset.

Had a thought and looked up new surgeries online -- they all have websites! Very intimidating. No idea which to pick. None had any fatigue resources on their "links" or "info" pages. One had a form to fill out, but my software was too old to make it work. Also worried now that you need an appointment before getting any repeat prescriptions -- I may try to get one more repeat from old surgery before changing. My current medication is off-license -- they won't try to change it, will they? It's the only thing that enables me to actually function. When I moved to this country I got put on the "closest" licensed med (there really is nothing else in its category, it's unique), and it didn't work and was not particularly good for me to boot.

Completely sympathesise, neri -- your words could have been mine.

DH has taken DD out, so I will try and get some sleep, and hope I can get re-energised for the rest of the week.

lissieloo Wed 31-Jul-13 18:12:35

Hi, can I join please? Fibro, severe teitzes, and heading into osteoporosis and osteoarthritis (just had a BDS to see what state my bones are in now). I had to go to bed for an hour this afternoon because I was in so much pain and shattered.

Helloo, checkng in after seeing the link in chat smile

Psoriatic arthritis here, plus regular old psoriasis and long term depression. Oh, and don't forget the recotcele from DS1. I'm a happy, healthy thing grin

Have to call up for blood test results tomorrow, then I can finally start taking sulfasalazine! (Am still breastfeeding DS2 and told I wasnt allowed DMARDs. Thanks to mumsnet, this is now sorted, yay!)

Grockle Wed 31-Jul-13 19:54:41

Welcome lissie

Lackadasiycal sad I was going to do angry but that seemed a bit insensitive! Done it now thouug blush

What are you on, Raggedy? I think asking the local support group for suggestions is your best bet.

yegodsandlittlefishes Thu 01-Aug-13 10:07:31

Hello again. Hope everyone here is coping this morning, and not faced with terrible choices. For those who do have difficult choices to make, I offer a hand to hold. (Purely selfish, am cold again and I could do with the warmth!)

I love these threads, they're a refuge when in pain.Thanks to all who post, it is all

buildingmycorestrength Thu 01-Aug-13 10:18:10

I had a bad couple of days but am doing a little better today - which is good as I have a major work deadline to accomplish!

Feel a lot better (mentally) since deciding not to chase work this autumn. Will just have to see what rolls in.

Holiday in Saturday - am pleased but nervous. I don't think of it as a holiday for me (except the extra pair of hands) but for the kids. I will be tempted to overdo it, but it just isn't worth it.

And yes, this is a refuge when days are bad. I didn't post for the last couple of days because I thought, 'You can't just go on there an moan, building!' But, um, yes, that is the point. grin

I honestly feel sometimes like you lot are the only ones who understand.

"I love these threads, they're a refuge when in pain."

Absolutely, I can;t put into words how glad I am to have been shown this thread. It's amazing the difference it makes just knowing you aren't alone!

Struggling a bit today, did a lot of driving yesterday (always tough on my wrists and back) and I'm paying for it today.

While my family try their best to be supportive they only ever see me on my good days, never my bad. The saw me chasing my son around the garden yesterday, but they don't see the aftermath today.

raggedymum Thu 01-Aug-13 18:12:18

Yes, well put! I do hope others moan, as I would feel silly doing so all alone and newbie-ish blush

I'm taking bupropion -- it's used as an antidepressant and antianxiety in the US, although is only licensed for smoking cessation here.

I think I will email the support group contact -- it can't hurt, can it? And over email it will a bit more distant for my social anxiety. I've been thinking of asking the one person at work in whom I've confided for advice, although I'm not sure about doing that. It is very difficult to open up.

candycoatedwaterdrops Thu 01-Aug-13 18:36:27

Hello newbies. thanks

My working week is finished! I love my 3 day weekends; gives me enough time for rest and some play. Although I'm pretty cream crackered and apart from a few drinks in the pub tomorrow evening, I don't have any plans except zzzzzzzzzz.

STBXH has gone away for the night, and taken the car. This wouldn't be a problem except we've run out of nappies (he knew this) and he's got the pram in the boot of the car. I just had to carry DS to the shops and back. I am in so much pain I could cry.

belleshell Thu 01-Aug-13 19:58:44

Roll on weekend, I soooooooo need a weekend doing nothing, we have been so busy lately.. I was late finishing work today (I had to re do online training, I thought I had completed in |Feb!!!) brain fog.........gggrrrrrrrrrr

Goth, so sorry STBX is a twat, mine still is even though he is a defo EX!!

BreastmilkDoesAFabLatte Thu 01-Aug-13 20:43:12

Hello. May I come in and just sit here for a while with my glass of wine? I've just had a really tough hospital appointment... heart doing OKish (pending test results etc) but many unforeseen consequences of last year's surgery. And the scar itches worse than ever, ever before (have started separate thread...) and I'n just feeling miserable.

yegodsandlittlefishes Thu 01-Aug-13 20:57:19

Hope you have had the chance to rest, Goth.

yegodsandlittlefishes Thu 01-Aug-13 21:02:00

belleshell It's horrible when the brain fog results in extra work, the last thing we need, eh? Hope you have a great weekend doing very little! grin

lissieloo Thu 01-Aug-13 21:02:30

Hi all, thanks for the welcome.

Goth, I'm shock what a nob!

Today we went to the zoo, and while I got around ok with lots of breaks and drugs I'm suffering now. I could happily sleep for a year and my hips feel like they are dislocating. But tomorrow ds has his last swimming lesson then we are going to watch the dogs at Monmoor, with PILs. I can't wait for the weekend, just so I can have a rest!

yegodsandlittlefishes Thu 01-Aug-13 21:28:25

Welcome, fablatte I was just going to day I will join you with my hot milk, but I lay down for a bit and it was hard to move! My milk drink is cold, but will join you now! Hope that you can get the itchy scarvtissue sorted out. (My DMIL swears by vitamin E cream/oil for scars, but I found the only thing to work on mine was another operation on the same site, and the surgeon cutting off the old scar tissue, it felt much better after that (and his stitches were tiny and neatvand caused no problems).

yegodsandlittlefishes Thu 01-Aug-13 21:35:05

Sorry, also I meant to say I hope the test results are better than you fear/hope.

candycoatedwaterdrops Fri 02-Aug-13 09:07:45

OMG Goth I am fuming for you! Where abouts do you live? If he does something like this again (hopefully not!), I'm sure an MNer would help you out.

thanks for you. Take it easy.

BreastmilkDoesAFabLatte Fri 02-Aug-13 09:11:06

Hi yegods and thanks. Pain currently unbearable and I'm getting towards the stage of contemplating some DIY further surgery with a stanley knife, so it's probably fortunate that I don't actually have one in the house. I've taken max doses of painkillers and am awaiting callback from gp.

candy Over in Herts. He also forgot to take the bins out so I've just carted them down the stairs. It's Tramadol time for me.

lissieloo Fri 02-Aug-13 10:19:59

Morning all!

Latte, poor you! Has the gp called back?

Hope everyone is ok today.

I'm really struggling today. I could really do without going out, but its been planned for ages. My knees and hips are swollen, so I've had to wear a long skirt, and last night my rib popped out a bit.

lissieloo Fri 02-Aug-13 10:27:39

Goths, shock wonder why he's an ex!

lissie Is it that obvious? grin Actually for most of my problems he's been really good, but recently (since having DS) he's been less sympathetic and often bored of me being ill. I know he blames me for us not getting out much. I think he thinks I use my pain as an excuse. According to him I should just push through it. hmm

Bearing in mind he has ME/CFS and an anxiety disorder you'd think he'd understand a bit more!

lissie "last night my rib popped out a bit"

Ow!! Do you have to go out today? Is there any way you could rest instead?

CFSKate Fri 02-Aug-13 10:50:51

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lissieloo Fri 02-Aug-13 11:03:31

Murder, gotta love the "push through it"ers. I used to be able to do it, but when its constant, you just can't.

I can't really, my niece and nephew are coming too, along with PILs. It'll be ok, not much walking and I can take a small stool to sit on. And this weekend I can do nothing at all. DH has said he will cook, bless him. after reading about some DPs and DHs, and their lack of sympath, I have realised how lucky I am to have him.

Bet they wouldn't tell someone with a broken leg to just walk on it and "push through" the pain. It's nonsensical isn't it? Like I'm going to make it hurt and hurt and hurt and then suddenly be cured. I'm pretty certain it'll just hurt and hurt until I'm utterly incapable of moving.

lissieloo Fri 02-Aug-13 11:18:39

Yep. I "pushed though" the pain of a broken leg when I was a kid. damaged my bone and ended up with a slightly wonky leg.

candycoatedwaterdrops Fri 02-Aug-13 14:17:12

Goth I'm in Herts too. If the twonk ever does that again, PM me and I'll drive over and bring some nappies to you.

BreastmilkDoesAFabLatte Fri 02-Aug-13 16:04:19

I suspect that most proponents of the just-push-through-the-pain approach have never been in pain and have certainly never had a rib poking out (owwwch lissie are you OK?)

I spoke to the GP and have a prescription for amitryptyline for the pain. Given that it's a drug notorious for causing tiredness and drowsiness, I'm not convinced it's a viable option, but I'm open to trying it at least.

candy You are a star, thank you!

fablatte Guess drowsiness is better than pain? Sucks that those are the options though

Matildathecat Fri 02-Aug-13 16:35:12

Hey everyone, sorry some of you are having such crap

Thought that instead of moaning for once I would try to be cheerful. This morning I met two friends in a gorgeous location for coffee and lovely old gossip. The armchair was quite do-able with several cushions. Sitting is majorly problematic for me so pleased.

After that I walked very slowly in beautiful Richmond Park with an old pal and our dogs. Sun came out, too.

Then had a look at my house insurance renewal and noticed I had forgotten to mention I am no longer working and called the insurance co. Unbelievably it brought the policy down by £170!!!

I am now lying on my bed, in pain, of course, but don't care.

Hope you can all find some nice times, too.xxxxxxxx

Ps Lissie, my sleepiness from amytriptiline didn't last long tho I still sleep like a log and have to drag myself awake each morning. No more long hours of pain at night, though.

BreastmilkDoesAFabLatte Fri 02-Aug-13 16:55:16

Matilda... am I right in thinking you are the same cat as on our last thread? I hadn't realised where you lived... I'm nowhere near but I do love Richmond Park, which isn't too far from family.

Goths I'm keeping an open mind. But I'm going away for a few days next week and will want the odd drink so will wait until I'm back before I start the amytryptyline..

Matildathecat Fri 02-Aug-13 17:03:12

No, I'm a brand new cat! Only just recently found mumsnet. Sorry the last bit of my last post was for you re the amytriptiline. Don't tell anyone but I haven't stopped drinking wine. It does enhance the effects of the drug which is prob why I haven't got up beyond 20 mgs. Life's too short...

Btw I am not recommending you do the same!(wink)

lissieloo Fri 02-Aug-13 17:07:43

Latte, it bloody hurts, tbh. My ribcage is all wonky anyway and I have several boney lumps where the bone is permenantly warped. Teitzes normally affects one rib, but lucky me has it in all at both end. So one will pop at the spine (stops me walking) and one'll go at the sternum which feels like I can't breathe. One time one literally dislocated and popped my shoulder at the same time. Vomited onto the kitchen floor and fainted. Ended up rushing to a+e.

I love my ami. It means I can sleep at night and reduces my anxiety. My gp raised it to 30mg during my last flare up and its helped so much!

emmelinelucas Fri 02-Aug-13 17:25:25

Hello , everyone, please can I hobble in and join you ?
I have two bulging discs, and have been in varying degrees of pain for 3 years now.
I live with it, but I couldn't manage without gabapentin and naproxen.
When I am beside myself, and crying with the pain - which is in my buttock and leg on the left side, I have been known to drink on top of the meds...
I will do anything to help myself, and I defy anyone who wouldn't do exactly that if they felt as I do sometimes.
So no, Matilda I wouldn't reccommend doing as we do ...but heck !
Amytriptilline gave me nightmares.
This is a lovely thread btw smile

belleshell Fri 02-Aug-13 17:35:15

hello and welcome to our newcomers, fablatte, I take amitriptyline about 7 pm (im usually in bed by 9) so the effects have worn off by next morning.if I take it later, im a bit groggy!!

today I have cried (sobbed in fact) I haven't done this for a few years, but I stopped my happy pill (duloxetine) last week, because I have put 2 stone on and I wondered if it was that...........anyway im wondering If it really did improve my mood as well as pain relief.....(I have had a shit day, so maybe its just that!!)

spoons for u all xx

BreastmilkDoesAFabLatte Fri 02-Aug-13 17:48:15

Hi emmie and welcome

matilda Ahhh that explains it. I didn't think the cat I thought you were was a midwife... sorry: it must be really annoying to have people confuse you with others. But hi there, and nice to meet you.

BreastmilkDoesAFabLatte Fri 02-Aug-13 17:49:36

bellshells Thanks for tip. I'll try that!

emmelinelucas Fri 02-Aug-13 18:13:41

One of the worst things about all this is that I can't exercise, I mean properly and have put 2 stones on . I not only feel badly , but I am fat and I hate it.

emmeline Oh yes sad Know that one. And of course now people look at my weight and think that it's the reason for my back pain, not a symptom of it. If only I were to lose weight I'd feel sooo much better, nevermind that I was a slim size 8 when it started.

lissieloo Fri 02-Aug-13 18:57:08

One of the worst things about all this is that I can't exercise, I mean properly and have put 2 stones on . I not only feel badly , but I am fat and I hate it.

Yes to this! I am a recovering anorexic, and while I maintain a good weight I hate the fact that I can't control it like I used to. My tablets have made me bloat too, I hate it.

Sorry to everyone who's struggling today.

emmelinelucas Fri 02-Aug-13 19:51:34

It's not so bad in the winter, is it ? I wear baggy jumpers and heavy coats.
Now that it's summer and it's lovely weather I can't wear Tshirts and I am hot.
8 pm is tablet time, shower and bed.
Murder - I used to be slim too. I only wish that I actually knew it and enjoyed it all. I had no idea that actually I was a beautiful young woman, but I think a lot of people think that.

lissieloo Fri 02-Aug-13 22:18:08

Yep, I have to plan my wardrobe around my joints. Slim fitting tops are for non-poppy days. Jeans are for days when my hips are ok. Heels are only for glorious days. I read the spoons theory for the first time today, and its all so familliar.

High heels... Sigh... sad

lissieloo Fri 02-Aug-13 22:54:08

I have a gorgeous pair of tan platform wedge ankle boots. All I can do is admire them through the see through box. And I love them.

Hmm, have spotted online that there is a link between hypermobility (which my rheum suggested I may have too) and hernias. I had an inguinal hernia as a baby, and now a rectocele as an adult!

Anyone else got the two together?

Oh god high heels! How I miss them! I insisted on wearing beautiful red 6 inch Kurt Geiger heels on my wedding day, I managed to walk down the "aisle" and pose for photos then had to give up. Now they sit in a box taunting me.

belleshell Sat 03-Aug-13 07:22:30

Where is Fuzz??

yegodsandlittlefishes Sat 03-Aug-13 08:27:02

belleshelle I'm not sure, have you seen fuzz on this thread, or have we lost him/her since the latest thread reincarnation? It is often so hard to manage to get to MN with pain and illness for some, so can understand if some people don't visit often, but a shame to lose a regular if they haven't spotted the thread!
( I wish we could opt for notification emails for that kind of thing).

candycoatedwaterdrops Sat 03-Aug-13 14:35:45

I've seen fuzz on another forum and she posted a couple of weeks ago on this thread.

<waves manically at fuzz>

lissieloo Sat 03-Aug-13 16:13:46

Afternoon all, how are you all?

As predicted, today I am utterly shafted, despite the nice weather. I borrowed a few days worth of spoons to have days out, and now I'm paying for it. Dh had to dress me and brush my hair. I hate feeling like this. I'm so vulnerable and useless. This isn't what dh signed up for. He married an ambitious workaholic who's arrival would start every night out. I was the one with all the fire and energy, now I can't even brush my own hair.

Sorry, having a small pity party. Will stop wallowing in a bit.

lissieloo Sun 04-Aug-13 11:38:39

Sorry, didn't mean to kill the thread

gallifrey Sun 04-Aug-13 12:10:02

I think you just summed up how we all feel sad xx

Agree with gallifrey Hard to think of the times before

Yep, pity party here too, "busy" day yesterday

lissieloo Sun 04-Aug-13 15:17:36

Thank you, I have to stop comparing myself to the old lissie.

Beyond, sorry you are having a crappy day too.

Went back to sleep, just woke up, feeling marginally better now smile

My mum has the boys and I was hoping to get some cleaning done. Not even dressed though!

BreastmilkDoesAFabLatte Sun 04-Aug-13 20:02:11

Also stuck in self pity. Maybe it's the weather <searches for straws to grasp.

raggedymum Sun 04-Aug-13 20:47:22

Feeling bad too. Meant to get cleaning done today, but barely managing cooking. Decided to risk it and rest instead -- I get ill if the house is dusty, which can put me out 2-3 weeks -- because really need to tons at work next week given how poorly I did last. Almost in tears before dinner -- just want food! But can't afford to order out or get ready meals for everything, so have to cook.

Kormachameleon Sun 04-Aug-13 21:06:47

Evening all

I feel like shit, I feel too shitty to even bother to phrase it nicely

Had emergency Rheumy appointment on Friday and he wants me to start methotrexate - the possible side effects terrify me
I feel so unwell, have slept all week through and am still exhausted. Feel awful for my son who is bored to years and getting grumpy with him

I just want it to end, it's no life is it ?

MrsStarwars Sun 04-Aug-13 22:01:47

Hi Korma sorry to hear you are feeling so rough. I am new to this thread but wanted to reassure you regarding the methotrexate. I have been recently diagnosed with RA and have taking methotrexate plus a cocktail of other drugs for about 4 weeks now. Like you I was really worried about the side effects, but a month into the treatment I've had none at all. I've never had to take more than a paracetamol in my life so all the medication was a bit of a shock. I have 3 young children so I have to take it so my joints won't be damaged any more. Take it easy while you're feeling so unwell, hope things are better soon.

LackaDAISYcal Sun 04-Aug-13 22:51:39

korma, I know a few people on Methotrexate and most have had a good response to it, and only one (that I know of) has stopped.

Lissie; I constantly compare me now to me then, and try to live life as the old me would. It never works sad

Arrrgh have just lost half of a quite long post <sigh>

anyhoo, the abridged version is I now take days as I find them. If I wake up feeling good, we do things. If I wake up feeling bleargh, like today, I mooch around the house taking it easy. I have embraced my inner slob (hard, as I used to to be so regimented with housework) and learnt to let it go rather than kill myself trying to be immaculate.

I often feel quite embarrassed by the state of my house (especially where my MIL and her beautifully clean and tidy house is concerned) but am learning to accept that the friends who care about me care about me and not my house.

Finished today with probably a few spoons spare for tomorow. Always a bonus smile

LackaDAISYcal Sun 04-Aug-13 22:58:03

As an aside, I developed a ganglion cyst on my wrist about four years ago, just below the heel of my hand. It has bothered me constantly. I used to play with it subconsciously, like a worry bead. After my latest depo it has dsappeared overnight shock Have since read that ganglions could be due to the inflammation realted to lupus and has disappeared because my disease in under control thanks to the last depo.

Anyone else have any experience?

Korma, I have literally yesterday started sulfasalazine, so in the same "place" as you. Apparently its going to be 12 weeks before I notice a difference though, so Rheum nurse sent a prescription over to my GP for a cortisone jab to tide me over.

My house is a state. As I posted on the other thread, the problem is, I was quite lazy before having DCs and have only been ill since having them, so people just think I'm being lazy now too. And as I said there, it mays me feel like the boy who cried wolf!

MrsStarWars, I also very rarely used to take so much as a paracetamol for a headache, now I'm on up to 12 tablets most days!! I think I actually rattle when I walk!

magso Mon 05-Aug-13 08:43:16

Lackadaisical I had a ganglion on my hand for months, (it was a real nuisance as it was just where my hand joined my wrist and affected movement) and in the end was scheduled for surgery to remove it. It disappeared virtually overnight the week before. When I rang to cancel they said they commonly disappeared on their own. It was before I got properly ill though so not quite the same.
Not doing too badly here. I am seeing a new chiropractor who has a theory that nerve compression in the back (mine is all over the place) causes disfunction in even greater measure than pain, depending on which part of each spinal nerve is compressed. So my weak 'drunk' legs, tachycardia, etc etc are back related, rather than caused by ME. I will see how Ifit into this theory. I have had back pain since my early 20s but have stayed away from surgeons for as long as possible. I am lucky in that manipulation has usually got me out of the worst pain each time. I feel for those who cannot do this. Afriend of mine with a prolapsed disc ( after no back trouble in the past) and private medical insurance went straight to surgery and is doing very well.
My house is very neglected too. I am in bed now listening out for ds as he makes it even messier! He is watching a DVD.
Hope those who are struggling have a better day.

candycoatedwaterdrops Mon 05-Aug-13 09:07:45

I've been on methotrexate for 3 years. I've tolerated it really well thanks to taking folic acid 5mg every day (except MTX day which is a Friday for me). I take it at night which seems to eradicate any nausea I felt when I was taking it in the morning. The following day, I am always more tired than usual but I just plan a quiet day.

LackaDAISYcal Mon 05-Aug-13 10:40:58

Could just be coincidence that it's gone then!

How is everyone this morning? I had a very slow start to the day as I was up waaaay too late last night. Thankfully the kids are at an age they can amuse (and feed) themselves in the morning!

BreastmilkDoesAFabLatte Mon 05-Aug-13 10:44:40

Having a shit morning. I've just lost it with DH and the DCs. House is a wreck. Nobody is dressed. And having DH tell me that they're 'only responding to how you feel' just doesn't help. I'm sure it's true but it does not help.

yegodsandlittlefishes Mon 05-Aug-13 11:48:38

It's almost true, fablatte, if it's anything like when my DH says it. Roughly translated to true meaning:'they're only reacting like small children, and that's what I feel like doing but I'm a grown man and I don't have that excuse'!
My DH is currently sporting a comedy holiday mustache which makes him look like something from a WWI film. At least we now have something else to talk about apart from how rubbish I feel, how limited life is and how rubbish the weather is.

gallifrey Mon 05-Aug-13 12:00:00

Hi everyone!

I've been in tears all weekend more or less, my dh told me that I spend too much time on my phone and laptop and not with my 2 children. Its true, I do sad but I have such little energy it's all I can really do. Even just going to the park is such an effort. I have been using my wheelchair more and more as I just can't walk anywhere without being in terrible pain. The other day I braved Tesco and managed to walk round but by the time I got back to the car I was in agony. Then when I got home I couldn't even make dinner I was so fatigued. I went round Ikea yesterday in my chair and it was so nice to get home and still have the energy to do stuff! For some reason my legs are really bad but my arms not so much except for washing my hair or hanging out the washing. I seem to be able to wheel my chair ok, and at least it's a bit of exercise!!

I have moved so have registered with a new doctor, it will be interesting to see what they say, I can't imagine being like this for ever.

Matildathecat Mon 05-Aug-13 12:44:39

Morning all. Not feeling too bad here even after a night out at a restaurant on Saturday, so long time sitting.

Several people finding housework a problem today, am I allowed to recommend a product? It called GTech SW20. It's a cross between a traditional carpet sweeper and vacuum. Rechargeable battery so no cord and as light as a feather. I can easily manage to so the whole ground floor myself and it does both hard floors and carpet. Sad to say I love it!

Having a go at reducing my gabapentin today. I'm so sick of feeling doped. Wish me luck..

Really hope your days improve. I am lucky that my dc are grown up. Means I spend a lot of time alone, though. Oh to be my old self.

magso Mon 05-Aug-13 12:55:17

I tend to think in terms of getting slowly better- which I have come to accept is a combination of getting more well and adapting to the new slightly less able me.
Gallifrey well done for getting around Ikea! I need to get something but am not sure I have the energy ( especially with the drive as well)! My arms tire very fast but my legs are improving. I can walk quite well now before the 'drunk legs' appear. Driving ( especially with ds in the car) I find exhausting.
Small children need such energetic care to interact well. Thankfully ds is older and his needs are more noticing and encouraging, rather than the eyes in the back of the head that small ones need all the time.

crikeybill Mon 05-Aug-13 12:58:16

Hello everyone can I join. I desperately need some perspective.
My Dh has m.e/CFS and has got worse over the last 3 years or so. He hasn't worked since being made redundant 10 years ago due to ill health. I work full time and we have three kids.
We've just had the most almighty row, it's been bad for a few months now and the house is a horrible place to live ATM.
He feels I am not sympathetic. I feel that he doesn't help himself and yes I do get frustrated.
Its exploded today because yet again he's let us down on plans and yet again stayed up till 3am watching t,v.. So this on my week off I'm yet again up and dresses and looking after the kids alone. He got up at ten, went to the bathroom, I said good morning and he ignored me and went back to bed. I exploded. I did slam things around I admit. He came down stairs was angry at me and we have just rowed and rowed.
He told me he felt ill and exhausted so needed to sleep, my point was a bit of common courtesy would be to say that. He said he felt too sick to talk !!! Why stay up all night ? He says he can't sleep. I'm so frustrated. It feels like I'm left to do everything. I work, I take the kids to school I take the baby to the childminders and its getting too much. Everytime I say something he just says I'm not sympathetic, how I have it easy because I have me health.
We are in a bad bad way. I feel like I have nothing left to give and this isn't the life I signed up for. He is supposed to have an appointment this afternoon at the CFS clinic but is threatening to cancel as he feels ill. I feel so frustrated.
What can I do ? Am I in the wrong ?
I'm so unhappy--

magso Mon 05-Aug-13 13:01:11

Sorry crossposted Matilda. I love my stick vacuum for the same reasons. Light, rechargeable and does the job. Its a bit heavy (for weak me) to use as a duster but OK for little clean ups. It a pain when it jams up but DH is good at unjamming it. It was very costly but so useful.

magso Mon 05-Aug-13 13:35:22

Crikey I am so sorry you have had a row and are both upset. I am sure my husband feels similar to you at times and I can certainly understand how you must feel having to take responsibility for almost everything. It must be lonely and exhausting. Having ME myself (and a few other bits and pieces) I can understand your DH too. The not sleeping and waking up exhausted is very frustrating. But its sometimes better to watch TV or read (if you have the energy) than lie awake tossing and turning (because of pain) and upsetting your partners sleep into the bargain. I am not at my best in the mornings,( being rather zombie-ish for the first hour or so) and it sounds like your DH is the same. When DH has a go at me it helps for me to realise the real bogyman here is the ME - not me.
I feel I must do all I can to get as well as I can - for all our sakes and that included getting to appointments. However trying to do too much ( and that may be very little) is counterproductive. It sounds like you are both suffering from the effects of ME on your family. I suspect once tempers have calmed down and egos recovered you need to try and be kind to one another and sit down and talk about it. DH needs to try to get to his appointment(or anything else that is helpful) if he possibly can ( and he may be truly too unwell to get there without help)- could you take him? One of the first steps to recovery is finding time to have fun and enjoy life - and feeling guilty and upset about what he can't do is unhelpful. Hopefully the CFS clinic will help him learn what he can do and help him learn to pace effectively.
Hope I don't sound too bossy. Lots of us will feel your pain and your husbands.

fuzzpig Mon 05-Aug-13 13:44:35

Hi all. Haven't caught up with this in ages so just remarking my place. Had an appt with an occupational therapist at st barts today, went really well. Off to work now but will tell more this evening all tomorrow.

Spoonage to all xx

magso Mon 05-Aug-13 13:49:20

Of Fuzz wondered where you were. Appointments and work all in one day - better send lots of spoons your way!

raggedymum Mon 05-Aug-13 14:36:00

Oh, I so sympathise with messy house problems. I actually have a Roomba that hoovers for me, which is the only way it gets done. I bought it some 5-6 years ago, and it was way worth it. I wish there was one that could wash bathrooms as well. And do laundry. Seriously, I need that robot from the Jetsons. I have a horrible catch-22 in that I tend to get colds if the cleaning hasn't been done, but I can also wear myself out doing the cleaning. But that is less problematic than being sick for weeks; at times I've lost entire seasons to one cold. Deciding to take it easy in preparation for a hard work week like I did yesterday is rolling the dice.

crikey, I understand your situation from both sides: my DH has had ME since I've known him, and goes through good/bad spells. And I'm struggling with my own issues right now. DH sometimes gets cross with me for 'ruining' plans when I'm too tired to do things, and I sometimes get cross with him for doing what I see as 'wasting' energy on less important things (like how he can be up late designing model train layouts and yet somehow can't manage to scrape DD's uneaten food into the compost bin and leaves me to do it when I get home from work).

One thing to keep in mind is that the fatigue is NOT logical. For some reason unbeknownst to me, one trip to a store, even if it is only 15 minutes, is just as exhausting as an afternoon hiking. Taking the day off work except for a single 30 minute Skype meeting will leave me almost as exhausted as if I'd gone in for an 8-hour day. It makes no sense.

Like magso says, you two probably need to have a sit down and try to understand each other. Ask him to tell you what his limits are, and see if you can figure out things that he can do within those. You probably need to set up some method of communication such that he can let you know if he's gone past his limit and isn't going to be able to do things he planned to. Sometimes my DH sometimes literally can't make words, and I know if I talk to him and he mumbles back, that it means to throw the day's plans out the window.

One of the things that I had to learn from DH when my fatigue issues started was that it is counterproductive to put all my energy into what I thought was 'most important', meaning things I found enjoyable simply fell away because I couldn't justify to myself spending energy to, for example, work on my crafts when I didn't have enough energy to clean the kitchen. It sounds like you might be having a little of my mindset there. Even with less energy, one still deserves a full life, so it can't always be the 'unfun' things that get done.

Your happiness is important too, and your DH also needs to realise that he has to save some spoons to work on your relationship. It can't all be from your side. Have you read the spoon theory? Has he? It might do to use it to open a conversation by showing it to him and asking if that is what it is like for him.

gallifrey Mon 05-Aug-13 14:43:27

I tend to wear myself out doing housework and getting stressed about it, then I have no energy to do anything else like take the dcs out!

I would love to have a cleaner smile

On a brighter note, I feel ok this morning smile I'm sure it's because I used my wheelchair yesterday to go round Ikea, if I had tried to walk round I would be suffering today for sure. I have decided to stop taking tramadol for the moment and start taking cocodamol 30/500 instead again (mainly because I'm running out of tramadol but have loads of cocodamol!) Already I don't feel as lethargic today!

Grockle Mon 05-Aug-13 14:49:59

Hi everyone. i've tried to catch up on the thread but its taking me a while - I'll do it properly later.

I just wanted to respond to crikey... I can see both sides of this. I split up with my ex in January, because of his mental health (was messy because I was too stupid to just let him go but thats a whole other story). One of my key issues wasn't his depression but the fact that he flatly refused to help himself. After 3 years, it because too much - I cannot help & support someone who won't help themselves, who constantly finds reasons and excuses to not do anything at all.

BUT, I have fibro, lupus & now suspected ME too. I have days when I feel so utterly ill, I cannot speak. It makes me vomit. I do my very best to communicate though - despite me constantly explaining how I feel, if I don't say it aloud then I can't expect people to know or to understand. I have terrible insomnia that leaves me awake all night for days or weeks on end but I don't sit up watching telly & I certainly don't lie in bed all the following day - I can't, I'm a lone parent with a job. I still have to get up & get through the day unless I am bedbound through pain & fatigue.

I do understand how frustrating it is for you with your DH. I don't really know what to advise but it sounds as though he needs to make some sort of good will gesture, at least... get up with the children, help you out then maybe go back to bed. Or at speak to you. Being chronically ill is horrible but you have to learn to manage it & its impact on those around you. IMHO. Pot. Kettle...

Coro Tue 06-Aug-13 08:23:34

Hi, I'm rubbish at keeping up with the thread but I appreciate knowing it is there.

Solo Tue 06-Aug-13 16:32:33

Just keeping my place on the thread.

Matildathecat Tue 06-Aug-13 18:08:24

Bad pain. That's all. Big sigh.

candycoatedwaterdrops Tue 06-Aug-13 18:29:38

Pity party for one. blush

Things are really crap. We're still waiting for my local PCT to approve the anti-TNF treatment. In the meantime, I've caved and agreed to a short course of high dose steroids. It makes me go crazy but I'm trading my stable mental health for a few weeks reprieve from this bastarding condition.

My clinic were horrified when they examined me - have never seen my joints so inflamed with such limited movement. In a way, it's good for them to see me like this because I often hide away in a flare up and they don't see me. That said, I'm not sure you can call my current problems a flare up as that implies I might flare down and I fucking haven't. angry My OT felt I was unsafe on one stick, so now I'm hobbling about on two - although I have ergonomic handled ones so overall, I am putting less pressure on my poor hands but still, using two is such a faff. <sigh>

I feel sick and exhausted and tearful all the time. Even before I was diagnosed and put on medication, I wasn't this bad. It's not good that I'm taking 2 very toxic drugs (and about to add a 3rd) but I'm still in this state....ugh! sad

magso Tue 06-Aug-13 18:57:20

hope the short high dose steroid course damps down your mega flare up Candy, and you are soon feeling better. Short courses have far fewer side effects than long term use ( I often have them for my dodgy lungs), and the PCT hurry up and fund the anti TNFs.

Can hardly type, arms fel like theyre made of lead sad had depo jab earlier and it has cause a huge flwre up and i can barely move sad sad

DH is at the end if his patience with my health and so am feelinf extra soecially shit

belleshell Wed 07-Aug-13 19:44:22

beyond and candy, wish I had spoons to send...... I hope some come your way soon,...

candycoatedwaterdrops Wed 07-Aug-13 19:53:49

My consultant had a shit fit and said I couldn't have the oral steroids because of my reaction last time and because of my osteopenia. Fortunately, I hadn't picked up the prescription yet. I got a 120mg jab of prednisolone depo instead. I'm praying for less swelling or even just to be able to put my feet fully down on the ground, I'm walking on my heels FFS! sad

candycoatedwaterdrops Wed 07-Aug-13 19:54:18

If I could share some spoons, I promise I would. thanks for all.

CFSKate Wed 07-Aug-13 21:51:58

new website for the UK drug trial for ME, explains everything

Well, depo not had its effect yet, but at least I can move again smile

Am determined to get any help I can now though, trying to struggle through, carry on as "normal" and leave DH to do everything is just wearing down our relationship. And while he's been off sick (depression), I've completely taken the piss, unintentionally of course, but we cant carry on like this. So, first things first, ring up for another dla/pip application form smile

candycoatedwaterdrops Fri 09-Aug-13 09:51:06

Beyond Was it a steroid depo? I had one on Wednesday morning and I've already got some relief. Fingers crossed for you. smile

belleshell Fri 09-Aug-13 14:03:34

hope we are quiet cos every one is busy doing nice things and not suffering, thank god its Friday!!! is all I can say

Yep steroid. Still no relief yet, but I remember it didnt kick in as quick as they said it would last time either. Dose this time is twice what I had last time, so hopefully it'll be worth the wait... smile

Not doing nice things here, sorting out the floordrobe that has been surrounding my bed. Relatively easy job that I can sit down while I am doing...

LackaDAISYcal Fri 09-Aug-13 15:11:57

supposed to be busy packing for our holidays here, but feeling a bit crap. tired and listless and no enthusiasm at all. Missed my meds yesterday and didn't take any till lunchtime today, so no surprise there. Not looking forward to a fortnight of bickering children in a teeny tiny cottage with virtually no garden confused

LackaDAISYcal Fri 09-Aug-13 15:13:55

I have an extensive floordrobe as well Beyond! It's the must have bedroom furniture dontchaknow grin

Hope the depo kicks in soon. I usually start to feel better after a couple of hours and have total relief within 24 hours. My disease is mild though, so they keep telling me hmm

daisychicken Fri 09-Aug-13 15:27:13

Hi, haven't been here for a while... last few weeks have been busy and busier with the kids home. Am still trying to sort my meds - stopped tramadol due to horrible side effects, lowered amitriptyline dosage to 5mg a night (which doesn't knock me out thankfully) so am sleeping better. Tried Buphrenorphine instead of Tramadol - like taking water for me! Just started Dihydricodeine but again.. doesn't seem to make any difference. Apparently sometimes what works is due to genetics and whether we have certain receptors... confused guess it does make sense when you think about it.. Anyhow, need to go back to GP as co-codomol and amitryptyline isn't enough on its own...

I don't want to wish the school hols away as I love having the kids home but I need a rest(!)

How is everyone today?

candycoatedwaterdrops Fri 09-Aug-13 16:33:20

Beyond Make sure you rest! I rushed around (work was manic sad) but when I relaxed, I got some relief.

Today I went to a shopping centre!! shock I only lasted 35 minutes but for the last few months, I wouldn't have even entertained the thought. I'm still walking on the backs of my feet but I'm hoping when the swelling goes down, I'll be able to walk properly because it's making my calves ache.

I did bugger all yesterday, am only folding and putting away some clothes and I just spent about half an hour picking hair out of my Big Hair

Has anyone here done a PIP application yet? I'm quite good with paperwork type stuff, but hearing all the horror stories about people being turned down is making me panic a little!

Grockle Sat 10-Aug-13 03:11:52

Just checking in. Hope everyone is ok.

Not done PIP but DLA was hard enough. I won't try for PIP.

raggedymum Sat 10-Aug-13 07:43:05

Made it through the work week, nightmare. Did confide in someone else at work, and turns out he will be my new line manager for part of my job. Good luck that, he was very sympathetic.

My Mum is visiting next week. That is going to be very hard. Woke up early this morning to clean while baby is asleep, because I had a sore throat last night. Sometimes I can nip things in the bud if I clean extensively at first signs of a potential cold -- just praying it works!

gallifrey Sat 10-Aug-13 12:52:22

hi everyone hope you are all feeling good.
I've been using my wheelchair loads to go out its amazing how much more energy I have left so I can cook dinner etc aftee being out all day. normally if I walk round anywhere I'm exhausted by the time we get in and can barely function.

Solo Sat 10-Aug-13 18:22:09

Hi all.

I'm back and I'm completely knackered! I hope you are all overflowing with spoons.x

candycoatedwaterdrops Mon 12-Aug-13 20:51:39


Tired, oh so tired! sad

Matildathecat Mon 12-Aug-13 22:15:32

Well, thought long and hard about getting my head around applying for ill health retirement . Made a call to the advice line ( turns out a lot of info I'd read on the web was wrong) and turns out I had to do it through my former nhs trust employer. First I discovered they had entered my exit code as voluntary resignation...they fired me for ill health!! Furious and got on the phone to Pensions guy. Turns out he was pretty helpful and filled in all the forms on their side with lots of input from me(!). All on the same day.

Next form I have to do.

Last form is filled by GP so called and offered appt with my favourite GP two hours later! She understands the system and will do her best. Have asked specialist for a report and may ask physio, too.

I know I'm in for a fight even though I know I deserve it. Nice to have such good support. I wasn't expecting it. Any hints gratefully accepted.

Sending spoons, energy and peaceful sleep to you all.x

gallifrey Tue 13-Aug-13 15:08:29

so fed up with this, we are going on holiday tomorrow to stay with my dm who lives in the algarve. The flights were astronomical £1500 on crappy easyjet and they were the cheapest!
So instead we are getting the ferry from Portsmouth to St Malo and driving the rest of the way, it will take about 17 hours with an overnight stop near Pamplona. DH will probably do most of the driving (I hope!)

I'm really looking forward to it, can't wait to see my mum too smile but I'm not taking my wheelchair and now I'm worried that I'll be needing it and if we are going to be doing lots of walking.
My mum rents her garage out to someone that hires mobility scooters and I'm wondering if I could borrow one while I'm there!

Solo Wed 14-Aug-13 01:09:20

Hope you have a good time gallifrey

Grockle Wed 14-Aug-13 07:14:09

Hope the journey is ok & you have a lovely break, gallifrey.

I'm amazingly well but struggling with terrible insomnia. I'm having 2 hrs sleep often & it's making me feel awful.

On Monday, I did something that I feel really uncomfortable... I was out for the day & used a mobility scooter to get around an arboretum. I felt ridiculous but it meant I could whizz around & see lots and still have energy to get home. It was a real eye opener.

Have a lovely time galifrey!

gallifrey Wed 14-Aug-13 12:29:48

thanks everyone smile
Grockle I know exactly what you mean and why I tend to use my wheelchair most of the time when I know I'll be having to walk far.
The other day I used it all day and still had the energy to cook dinner, and for the first time in ages my legs didn't hurt when I went to bed xxx

Solo Wed 14-Aug-13 12:39:45

Grockle, my sleep pattern has gone to a few hours too right now. I know that it cycles: No sleep. Sleep all the time. Sleep a little. Feel like a zombie.

If I'm in a 'normal' sleep pattern, I dread going into the cycle and I've been fortunate in that I've not had too much of it for a while. Til now sad

candycoatedwaterdrops Wed 14-Aug-13 18:02:01

gallifrey Wish you a lovely break. thanks
Matildathecat I hope it's not too much of a fight. It's so unfair that we have to fight for what we are entitled to. It uses too many spoons. Wish you luck!
Everyone else <waves>

candycoatedwaterdrops Thu 15-Aug-13 18:32:55

I have a favour to ask you all please. As it appears crutches are going to feature long-term, which colour do you peeps prefer?

Pink -

Purple -

I prefer the pink ones but I don't want to look unprofessional at work. blush I work with service users.

Matildathecat Thu 15-Aug-13 21:35:40

Pink is rather nice. Will it work with your wardrobe? I guess you will need to coordinate shoes, bag?! I'm sure elegant crutches will meet with the approval of your clients.

My lovely GP filled in my forms double quick and have asked physios for reports, too. Feeling determined. Actually it's only me that hasn't completed her section. Need to do it really well though. I want my pension.

Matildathecat Thu 15-Aug-13 21:40:03

Pink is rather nice. Will it work with your wardrobe? I guess you will need to coordinate shoes, bag?! I'm sure elegant crutches will meet with the approval of your clients.

My lovely GP filled in my forms double quick and have asked physios for reports, too. Feeling determined. Actually it's only me that hasn't completed her section. Need to do it really well though. I want my pension.

Matildathecat Thu 15-Aug-13 21:41:14

I obviously really mean that! Not sure why it posted twice...

daisychicken Thu 15-Aug-13 21:43:06

I prefer the blackberry - colourful but slightly more subdued than the 'in your face' pink!

I'm shattered and in so much pain.... I don't want to wish the school holidays away as I love having my boys home but oh, I could do with a rest! Having children home all day uses too many spoons!!!

I cant look at the links on my ipad, but think I'd go for purle over pink as it goes with more?

Daisy, i know how u feel, sad DH has gone back to work off sick leave and i've been struggling the last few days. Hes been on nights too, so literally no help apart from the hour or so between him getting up and going back to work. I'd forgotten how hard it can be.
Nearly chopped my finger off yesterday atempting to peel a bloody potato! I havent cooked a meal in months blush

daisychicken Thu 15-Aug-13 23:41:43

Same here with DH - he's been working 6am-7/8pm plus he's been working weekends... (Can't complain as he's SE, we need the money as I don't work & it looks like a dry spell coming up sad )... but 2 weeks then school routines are back & I get rest time (while I try & find a suitable part time job....)

Hope you get to rest soon Beyond

Solo Fri 16-Aug-13 14:34:24

Hello ladies. I'm not doing very well as I was assaulted at work yesterday. I have much bruising and a sprained neck which hurts a lot!! painful shoulders and back and thumb pad...I only returned to work on Monday! I'm so embarrassed as I was stretchered out to A&E blush. Still breathing though!

Matildathecat Fri 16-Aug-13 15:49:41

Solo, that's dreadful. Really hope you get better soon and work allow you plenty of time to recover.

yegodsandlittlefishes Fri 16-Aug-13 20:25:18

Candy, I like the pink ones, but I'd not want to use them all the time...Could you go with the purple ones as 'everyday' 'work' ones for now and then, at a later date (having saved up another small fortune) get pink ones for special occasions, and to perk yourself up a bit? grin

yegodsandlittlefishes Fri 16-Aug-13 20:27:23

Solo, that's shocking! So sorry to hear you were attacked! Have they got whoever did it, and please tell us you are pressing charges.

Solo Sat 17-Aug-13 03:51:13

Work related yegods so it's all in hand. Not sure work will prosecute and I don't know if I have the energy to go that route myself ~ or the money.

Once again, I can't sleep...

Grockle Sat 17-Aug-13 07:18:08

Oh solo, I'm sorry. That happens in my work & it's horrible. 2 years ago I was knocked out shock

Hope you are ok & not in too much pain. X

Solo Sat 17-Aug-13 16:54:56

It is horrible Grockle yes! never happened to me before and just as I'm on my way out...<sigh>

In lots of pain, but moving my neck a bit more each day smile thumb not so good. Not sleeping.

yegodsandlittlefishes Sat 17-Aug-13 20:10:33

Message withdrawn at poster's request.

yegodsandlittlefishes Sat 17-Aug-13 20:10:46


KinkyDorito Mon 19-Aug-13 11:48:02

Hello all,

DX this morning with Fibromyalgia. I am unsurprised. Am knackered and in a mental fug most of the time, plus my whole body aches and is really sore when touched.

At this point I've been told to try some lifestyle changes to manage it - more regular gentle exercise, diet. If I'm still not sleeping they will give me some pills for that.

I'm already on 30mg Citralopram for depression and suffer with awful IBS.

DH is considering whether it would be kinder at this point to shoot me and end my misery grin.

Solo Mon 19-Aug-13 12:11:52

Hugs Kinky flowers

candycoatedwaterdrops Mon 19-Aug-13 18:14:08

Solo So sorry to hear you were assaulted at work, you poor thing. Rest up and sending lots of flowers and spoons to you.

Kinky Welcome to the clan, sorry you had a need to find us though. Have they mentioned any other medication? A referral to a pain clinic is a must IMO.

candycoatedwaterdrops Mon 19-Aug-13 18:15:27

Ooops, forgot to say thank you for the comments on the crutches, I'm going to go with purple but not yet as money is tight. My car's just cost me a few hundred bob and I have a credit card bill to pay eek!

KinkyDorito Mon 19-Aug-13 18:58:34

No medication candy. If I'm struggling I have to go back to GP for sleeping pills and to discuss pain management further. It was an odd consultation. Younger Dr said it is fibromyalgia straight away and talked about taking exercise to help it; went to see his boss who declared he didn't believe in the term 'fibromyalgia', called it something else to do with muscles, and discharged me to see how I get on. Didn't see second doctor, first doctor went out to speak to him.

My pain isn't unmanageable at this point. I am very stiff and ache a lot, and I hit the roof if touched on one of the fibromyalgia points, but I'm not incapacitated by it. My main problem is the brain fog and lethargy. Over the past few years I've gained a load of weight because I overeat carbs due to being so knackered all the time. I work FT in stressful job and have difficult family life - DD just finished 2.5yrs of treatment for cancer and has Asperger's too. Stress is certainly an issue.

I want to be proactive, but didn't get a great deal of advice about how best to tackle this. Exercise is great, but I need to do it on an evening when I'm usually dead on my feet. confused

belleshell Tue 20-Aug-13 14:07:54

Solo, omg hope you r ok... Welcome kinky ( and anyone else I forget) blame the drugs... I feel like a fair weather friend because I am here to moan, sorry in advance, I'm day two of bed prison, been feeling off its for last week, and wham I hit thAt brick wall yesterday. We have been busy lately ( not that DP agrees) but we haven't had a weekend at home for ages doing nothing! I'm trying to write a business case for my job and still doing my job onto, stress with ds so maybe this was to be expected... So today for those with ME and similar illness I am wearing my lead suit and doing the treacle walk......I'm sure most of you understand this! Why isn't life so simple.... I'm also feeling very selfish after following a local Dr on twitter who is in her 30 and is terminally ill with cancer, she just gets on with it, she is a senior Dr with a lot of responsibility.... I've got ME FFS I'm not dying yet I'm laid pathetically in bed feeling sorry for myself...... Rant over spoons to you all x

buildingmycorestrength Wed 21-Aug-13 07:11:04

Grockle I just saw this and thought of you. Borrow My Doggy (Google it) matches dogs with people who want to borrow them for walks and cuddles. Maybe they could help during a bad patch.

Soldiering on through summer, had a two week holiday which has helped break it up nicely. Only two weeks to go before school starts so I am hanging on. Oldest is at sports camps every morning to tire him out...he is extremely active (like, clinically extreme) and this is saving my bacon at the moment.

Have been having acupuncture for a muscular problem (pirriformis) and it has has a subtle positive effect on my general fatigue levels as well as my butt! No miracles.

thanks thanks thanks to all.

Holly94 Wed 21-Aug-13 08:33:11

Hi ladies.
Just posted on this forum about my problems with chronic pain and fatigue and saw this thread! Nice to know I'm not alone, sorry that you all have a reason to be here though sad
I currently have an undiagnosed illness. Doctors are refusing to take me seriously and as I'm 17 weeks pregnant are putting a lot of my symptoms down to that. I had these issues a long time before I got pregnant.

Solo Wed 21-Aug-13 19:47:28

Welcome Holly seems a bit quiet today, but these ladies are lovely and we all know what you are going through smile

raggedymum Thu 22-Aug-13 18:21:56

Hi holly. I'm also trying to figure out what's wrong with me, after trying to believe the doc who said everything was fine. It was actually early pregnancy which helped me realise it wasn't -- everybody talked about how tired you would be, etc., and suddenly got all sympathetic over what was pretty normal for me for the past few years.

My Mum has been here since last week, and its been a nightmare. I love her and she's sweet and everything, but she is absolutely no help. She says she'll look after DD, but she just sits there and doesn't pay attention, or wanders off. I'm trying to work from home as much as I can to look after her and DD, but I still have meetings to go to. DH is now mad at me because of a misunderstanding that I thought they were coming in to me, but he wanted me to come home, and he had to come out and try to calm DD when she was standing in the middle of the room crying and DM was just watching her do so. Meals are really hard -- I'm either cooking for 3 adults and a baby, which is a lot of work, or DM has very generously been taking us out to restaurants, but with a 1 yr that isn't exactly a relaxing time! The one time (on my birthday) that we got takeaway, DM complained. She's leaving tomorrow, and I feel horrible that I can't wait. It is going to be a long time to recover from this, and things are really busy at work for the next month or so. sad

However, we have identified a surgery -- the support group woman never got back to me, but I found some other generic advice and I hope we can register next week or as soon as we have energy to get there. I know its slow, and I feel like a failure for not pursuing this faster, but I feel like I'm barely hanging on and doing as much as I can. I really need to get started with a new GP soon -- I had to say 'no' to extra work on the weekend to my new line manager because I was afraid I really would't make it through the coming month if I did that.

Bot fly removal... Nothing comes close to it...

Lol, bugger, wrong thread!! grin

yegodsandlittlefishes Fri 23-Aug-13 19:47:11

That's just what I did upthread, Beyond!

I have some test results back! Tests I have been asking to have for well over a decade! I have an autoimmune disease, I've had it all my life and I have felt as though there's something wrong with me for over 2 decades, and which affected 2 of my pregnancies sad but it's treatable smile and although the meds still need tweaking, I'm feeling a lot better, to the point of feeling as though I've almost got my life back some of the time.

I also have a slight propensity towards potentially getting another autoimmune disease (I don't think any others are treatable) but will cross that bridge if and when I get there, although some minor rheumatoid symptoms have already begun, it seems.

I'm getting an ultrasound to see if there's anything detectable causing my wimmins problems, anemia, and pain & exhaustion the week before my periods. I'm actually looking forward to the prospect of an operation to get something done about it.

Spoons all round. If I could visit you each in turn to do some chores and help you out, I would.

candycoatedwaterdrops Sat 24-Aug-13 18:14:29

I've been off work for a few days (annual leave) and it's been lovely. I love my job but my body was exhausted. I got a call from the nurse today and she's coming to do my first 2 anti-TNF injections on Tuesday. It sounds odd to feel excited about stabbing myself with yet another toxic drug but I'm ready to get the ball rolling. I'd give anything to be walking without crutches by the time I go back to uni at the end of September. I'd cross my fingers but I could only cross my right hand fingers, the left is very swollen.

CFSKate Sat 24-Aug-13 19:00:31

Interesting article

Before I was lambasted by ME/CFS, I was an idealistic and trusting sort, loyal to a fault. I tried to see the best in people, tried to give the benefit of the doubt.

My soft malleable center has been pretty well kicked out of me over these many years of sickness. Along with the illness, there came a new world view, if you will. Because as the sickness settled in for a long stay, the people in my life gradually disappeared out the back door, never to return. And the Canadian government that prides itself on its humane safety net has let me down at every turn.

The fact that I am one among countless chronically ill people in my country, and the fact that there are countless more around the globe equally abandoned by their governments, only entrenches my shift from trust to cynicism.

When you know that your government will do nothing for you, and when you know that many of the people you knew don’t care whether you eat or starve, whether you have a roof over your head or you don’t … These pellets of hard truth left some pretty serious dents in my psyche as I was bombarded with them for years.

Even if I were to regain my health completely one day, with an income big enough and dependable enough to protect me from panic and sleepless nights, I am irrevocably changed. I will never see things the same again. And I don’t want to.

I'm having an incredibly bad day today, sat on the sofa watching telly, DH has taken the kids to see his side of the family. Not only am I sore, I'm feeling very sorry for myself that I could well be depending on people to do stupid little things like open my cans of coke for the rest of my life sad

DHs surprise 30th party was yesterday, I was already in pain then from doing it, then the effort of a party, and being moaned at for being lazy on three separate occasions. Broke down and bawled my eyes out on my mums shoulder. Sick of being in pain, sick of relying on people, and sick of people judging me and complaining that I'm young and shouldn't be struggling so much.
DH enjoyed his party though smile

buildingmycorestrength Sun 25-Aug-13 16:48:35

* Beyond* My hubbie's 40th this year. Am in a big quandary about what to do as may not be up to much on the day. sad. thanks for you.

CFSKate Mon 26-Aug-13 22:43:42
candycoatedwaterdrops Wed 28-Aug-13 14:41:52

It's been quiet in here, how is everyone?

I had my first anti-TNF injections yesterday. The first 3 doses are double doses, so increased risk of side effects. I tried to ride through it and go to work but I was puking and just couldn't drag myself out of the house. I feel horribly guilty for the time I've had off for, both medical appts and for general sickness. They are wonderfully supportive but I feel shit about it. sad I hate this condition; I hate the symptoms and I hate the meds.

RockinD Wed 28-Aug-13 20:10:10


Before you accept a diagnosis of fibromyalgia, please look into Adrenal Fatigue and read this book.

From what you say about your circumstances, you may just be running on empty. This may well be reversible at this stage without getting into the cycle of anti depressants and other medication that a fibro diagnosis implies.

lisad123everybodydancenow Thu 29-Aug-13 16:25:27

Message withdrawn at poster's request.

magso Fri 30-Aug-13 18:09:46

Hi Lisad, very much the same happened to me. Started off with severe pneumonia/ pneumonitis some signs of lupus and eventually diagnosed with CFS. Looking back I just think my body went wrong, after a long period of stress not dissimilar to yours. I am gradually getting more functional! When the ana test was repeated a year after the first one the result was lower( nearly normal). I don't know what to say but for now get as much help as you can. I now get DPs to help with caring for ds who has sld and ASD. Have you seen a rheumatologist. I think they are the most knowledgeable about Lupus etc. it's hard not knowing what it all means and what the future holds. ( hugs))

lisad123everybodydancenow Fri 30-Aug-13 18:48:36

Message withdrawn at poster's request.

candycoatedwaterdrops Fri 30-Aug-13 20:24:41

lisa As I'm sure you know, some conditions especially lupus are notoriously hard to diagnose. My rheumy says it takes about 10 years from symptom onset to diagnosis. IMHO, treating the symptoms is the best forward when the dx is unclear. It is frustrating though.

lisad123everybodydancenow Fri 30-Aug-13 20:26:48

Message withdrawn at poster's request.

magso Fri 30-Aug-13 21:00:11

Sorry you are in this not knowing limbo Lisad. I presume they do not treat because treatment needs to be very specific. Pacing applies to lots of autoimmune conditions, but it's very hard to do well when the main carer for children without support.
I felt as if the years of caring mostly alone for ds (who needs virtually 24 hr high alert care) contributed to my body failing, and left me not being fully able to care properly anymore, so I feel for you looking after 2 dds with ASD. DPs can under some circumstances be used for house chores especially those that relate to disability, although they are supposed to be only used for child care for disabled children. A friend of mine has DPs to employ a specialist carer for her severely disabled ds after school, and also for a male carer for a boys club. It's worth asking although it means an assessment from SS.

candycoatedwaterdrops Fri 30-Aug-13 21:34:33

lisa I'm not sure of your symptoms but if you have joint inflammation, a good prescription anti-inflammatory should help.

lisad123everybodydancenow Fri 30-Aug-13 21:35:54

Message withdrawn at poster's request.

newestbridearound Sun 01-Sep-13 17:15:52

Hi everyone! I did pop in a few weeks ago but never really said anything, today I just need a moan and virtual hug sad

My M.E is very very bad at the moment, I'm bedbound and probably functioning at around 5-10% most days. And after a prolonged period of good health and feeling I was actually recovering I'm not handling it well at all. I got married 3 months ago which I know will have been the relapse trigger but I never expected to drop this low again. I was about the same when I first fell ill 4 years ago and it was the worst time of my life- this time around I'm handling it even worse.

Has anyone else been bedbound before? I want to get up and get back to living but my body just will not do it, and although I'm trying to pace all I can actually manage is 5 minutes on here and then lying with my eyes shut for the rest of the day. Am bored out of my mind! And so lonely, I desperately want to talk with my husband but can't even bear him in the same room as it makes my head spin and the noise hurts. His nan died this weekend and I can't even comfort him because I can't stay awake, I feel like the worst person in the world.

I hope everyone else is having a much better week than me and that you all got an extra few spoons today smile Just needed somewhere to get this out where I know people won't judge.

raggedymum Sun 01-Sep-13 17:36:55

Hugs, newest. Can't offer much but sympathies -- beyond my experience!

I've been struggling through -- work exploded week before last, and I had to work through the weekend. Crashed on Wed, but was able to keep going after a three-hour nap. New line manager of the part of my job that didn't explode asked if I'd been to the GP yet -- haven't, as I'd thought we'd register last week but there wasn't a spare moment. I should be working this weekend too, but just can't. Thinking will try to get DH to stop by the surgery this Friday when we'll be driving right past. Line manager was very kind and put on gentle pressure -- he's very honest about how he's struggling with his new responsibilities and said he wouldn't know what to do if I ended up off sick. Nice to know I'm valuable and hopefully I can manage to take action with his pressing.

magso Sun 01-Sep-13 17:54:07

Oh Newest that sounds very tough. No wonder you feel fed up and not handling it well((hug))
A lady on a course I attended at the hospital had an unexpected relapse that made her very unwell and only able to go out in a wheel chair for very short periods but she is now functioning much better( walking, teaching part time etc) so hopefully you too will pick back up. It must be very frustrating. I spent almost all my time in bed doing nothing when I was first ill, ( and still need to rest a lot) and I know what you mean about not being able to tolerate other people even nearest and dearest- the noise and movement, but have not been as I'll as you sound.
I suppose at least you theoretically know what to do as pacing is not new to you, and you have got wellish before so know you can getvwell again. Does your new dh understand? My dh took quite a while ( as did I) to understand the need for rest and pacing.
(gentle quiet hug)

richteaaddict Sun 01-Sep-13 18:34:09

hi newest, so sorry to hear you are feeling shit, I crash approx. once a year and it puts me in bed for a few weeks, then I gradually re coup, slowly, it is so frustrating, so I can only send gentle hugs and sppons!!

for everyone else I have changed name, my DS has read my posts, one of which was about him he as been referred this week to mental health services after he came to mine last week with cuts up his arms, and telling me he hears a noise that mumbles most of the time, but on occasions tells him he is bad........... I am worried sick!! sad

newestbridearound Sun 01-Sep-13 18:40:51

Well done raggedy, sounds like you are doing a great job in spite of everything!

Magso luckily my DH is amazing, as are all my family. I'd probably have wasted away by now without them as I can't make food for myself or get to the bathroom! I met my DH a few months before I fell ill with ME so he's never really known me healthy- he stayed during the first 8 months when I was at my worst so he is being a complete star now as he has seen me do it before. Thing is I can't remember being this poorly; it was such a traumatic time and I was so suicidal that my brain has done that wonderful thing of blocking it out. So to me all I know is I was bedbound for 8 months, could barely eat or stay awake then suddenly was much better. I don't remember how I did it or stayed sane, just that I went from that to functioning at 80%ish.

For the time being I'm just giving into it, I tried to push through for a week and realised that nope that won't work so on complete bed rest apart from a tiny bit of computer time and eating/drinking. It gets lonely and I'm so frightened but I know that I have done it before and although it will take time I can do it again. Just wish the anxiety about it all would bugger off!

newestbridearound Sun 01-Sep-13 18:44:31

Oops didn't see your post richteaaddict (amazing name change!). How do you cope mentally when you crash? Does it panic you you won't recover again?

I'm so sorry to hear about your son. No wonder you are worried sick- but hopefully if he is under the mental health team they will be able to monitor and help him. Places like mind would probably be a great source of information and support to you too. Sending a massive hug x

raggedymum Sun 01-Sep-13 19:34:34

Thanks, newest! It sounds like you are keeping a positive attitude -- and it is good to know you got passed this once before.

Sorry to hear about your DS, richtea. I've had friends and relatives who had issues with hearing voices and things, but was before I knew them (or, for my Mum, before I really understood -- I only knew she stopped being able to make eggs properly and then went away for a while). The positive thing though is that they are under control now, so I know that modern medicine is quite good at this thing. Hope they are able to help him soon.

Something I keep mean to asking but never quite get to on my posts -- how do you make/maintain friendships with fatigue issues?

Being with people, especially ones who aren't friends yet, takes so much energy out of me. But I know that I feel a lot more positive after a talk or time with a good friend, so I would really like to make some nearby. All my good friends live far away. DH took me out for my 40th birthday dinner a few weeks ago, and asked if there was anyone I wanted to invite, and all I have is 'work friends' that I couldn't imagine asking to a birthday dinner. sad There's a Mum and DD in the neighbourhood that I'm starting to get to know, but kept not having energy to do anything about it. They actually came and invited us over yesterday, and my DD had so much fun, but I'm really worn out today.

emmelinelucas Sun 01-Sep-13 19:53:22

Raggedy, I know how you feel.sad
I have been dropped from a circle of ex workmates/friends (sort of ) because I have accepted invitations for meals out, make-up parties and that kind of thing, then I have had to cancel because I cant fight the pain (sciatica) or I am sleepy due to the meds.
I can understand how they got fed up, though.
I cant think of a solution.
This thread, and another have been an amazing support.
thanks to all you lovely posters.
I am sorry I cant be any more help, Raggedy.
Does anyone else have any advice ?

Grockle Sun 01-Sep-13 20:22:22

Marking my place because this dropped off my threads. Will read & catch up asap.

newestbridearound Sun 01-Sep-13 21:16:09

Raggedy I think most people with chronic fatigue and pain struggle with this. It's the constant battle between being desperate to socialise yet not having the energy and stamina to do it sad Do you belong to any support groups in your area? I find having some friends who are facing the same thing is always lovely as it means they understand when you can't see them and empathise with what you are going through.

Most of my friends have stuck by me through this illness and understand when I drop off the radar for ages, but I do try to keep in touch through texts, email when I can manage, the odd phone call. When I'm feeling 'better' we do gentle activities like going for coffee, sitting in the park, watching a movie at home.
With the new lady you have met you could always try and limit how long you meet up for to make the payback less intense? That way you get to have a chat and feel positive without crashing too much afterwards.

Solo Mon 02-Sep-13 00:08:47

Also marking my place.

richteaaddict Mon 02-Sep-13 05:19:52

Ragedy, the friends thing is sooooooooooo hard, I am very lucky in that I have a circle of friends I have had since I was at infant school, they just take me for what I am now, we have nights in I fall asleep, I don't do late nights out, but can manage afternoons, so they adapt to that, neverthelsee, I had to move back home for this, I did live 100 miles away when married, when I got divorced I stayed a year witht the kids, but it was hell......... I had no real friends, my ex family all ditched me, and when I was ill it was just me and the kids, id make them sit on my bed whilst I was terrible, so I made the ultimate sacrifice and moved home.(best thing ever for me,) but I paid by my DS wanting to stay with his friends!!- so he is now 100 miles away and ill!!!

we can have a virtual freidnship, I might even share a glass or two with ya, and we can chat from the comfort of our own beds..........let me know anyone if you fancy a good night in!!

candycoatedwaterdrops Mon 02-Sep-13 18:04:28

Ugh what a day! Someone at work (who's not known for his tact) asked me why I used crutches "when there isn't anything wrong with your legs"! I wanted to tell him to Foxtrot Oscar and then pat him on the back for being so clever for having x-ray vision and perhaps he'd like to correct my rheumatologist on her diagnosis of Rheumatoid Arthritis with associated joint damage.

I can't put my finger on why but it really upset me, perhaps because I feel like a fraud most of the time anyway. sad

magso Mon 02-Sep-13 19:45:18

Candy that would have upset me too - for the same reason - that irrational fear of being a fraud!! It took a friend who at the time did not know me very well to tell me I was ill not lazy, and the ME team said much the same. I wish I could come out with a joke - the way chaps do - in that sort of situation.
I struggle to maintain friendships too. I don't know the answer.

smilingthroughgrittedteeth Thu 05-Sep-13 16:25:47

hello everyone

I haven't posted on here for ages as since getting a diagnosis I've had a pretty good few months but I'm struggling at the moment and thought I'd have a moan to people who will understand and not tell me to just keep going hmm

I just can't stay awake, I had 2.5 weeks off of work and was fine before and during but since coming back I've been completely exhausted, my body aches and everything seems like hard work...... it doesn't help that I'd got out of the habit of being resigned to being tired all the time and am now getting frustrated with myself.

magso Thu 05-Sep-13 18:41:14

Hi Smiling. Moan away! Sorry you are feeling so tired. I am back to work (only very pt) after a break so expect it will be me struggling to stay awake and tomorrow. I've been going through a better patch so find the not so good days harder to cope with also. Hope your general trend is generally good. Are you on any treatment at last?

candycoatedwaterdrops Thu 05-Sep-13 20:15:05

Hi smiling, sometimes you have to just stop or at least slow down and take it easy. Ploughing on through can lead to burn out. Sometimes keeping going is needed but only when you must. Us chronically ill people cannot function in the same way as others, we need to find our own pace.

smilingthroughgrittedteeth Thu 05-Sep-13 20:44:11

I was diagnosed with liver failure I'm on a special boring diet and meds and since having a coil fitted have stopped having fainting spells, is just harder to cope with after feeling well for a few months

richteaaddict Thu 05-Sep-13 20:48:00

hi smiling, in exact same posisition, felt a littler better last week so back to work this week............why didn't it occur to me that I ws ok cos I wasn't doing anything, im back in work with a bang,today I sent an email to some onewhis a constant critic , to my work, we have had tiffs in the past, this morning I just wanted to as what is your fucking problem, but I was professional ad asked it in a professional manner, this isn't me!!! I don't make fuss, but I am tired work kills me, but I have to work I have 2 kids to support and my job is good, but im struggling, tonight I haven't even got the energy to cry

Grockle Thu 05-Sep-13 22:15:18

I really haven't managed to catch up but thought I'd post anyway. Will try to catch up properly.

A few weeks ago, I saw a private dr who said my liver & kidney function are not good & I have 'functional' heart failure... no permanent damage but my heart is struggling to manage. Which explains the tachycardia & chest pains.

He has put me on a strict diet which he is sure will help my liver & kidneys recover. It's horrible though: no dairy, no sugar, no fruit, no refined carbs, no yeast, no vinegar. So, I'm living on potatoes & veg & salad with no dressing. I am sick of it. I haven't even lost any weight. It's miserable.

Thank you for the dog link, building. I will check it out.

Sending love & spoons to you all.

magso Thu 05-Sep-13 22:48:04

Smiling the diet sounds hard. I hope the diet helps Grockle, although it sounds rather shocking ( chest pain and functional heart failure - sounds terrifying!) I am still trying to sort out my tachycardia. Still waiting for more tests. 24 hr BP is next. With appointments 4+ months apart (and its always more) it is taking quite a while. But then its years already so whats the hurry? Would you be allowed D-Ribose on your diet, I am convinced it has helped me. I came off my diet for the holidays and have put the weight back on again. Still now ds is back at school I can go back to dieting.
Spoons to you.

buildingmycorestrength Fri 06-Sep-13 14:45:50

Just thought I'd check in. I've been having acupuncture and I'm absolutely sure it is helping. I had about two weeks where higher levels of activity (I.e. housework, not exercise!) did not exhaust me. Yay. I feel more normal-ish.

Spoons to everyone.

TheAccidentalExhibitionist Sat 07-Sep-13 08:05:36

Can I join your thread?
After years of increasing sacro-iliac pain, I've suddenly developed multiple joint pain and debilitating fatigue and breathlessness. I've been given a diagnosis of Lupus and sacroilitis, plus herniated lumbar discs.

It makes perfect sense to me as I have a history of miscarriages and had numerous other symptoms creeping up on me for years. This last three weeks it feels like my body has just shut down though. I'm still finding it hard to accept, I don't want Lupus. I've always been an incredibly bouncy person, hyperactive some would say, so the fatigue is really frightening. I live in the south of France, which is fantastic but I think the summer and bronchitis last month has triggered off my first Lupus flare.

I have a son with ASD and hyperactivity which is an added challenge. Plus we are still trying for another baby and are on an assisted fertility programme. We are putting that to one side for the time being though, until the flare has passed.
Reading through some of the thread I can see I got my diagnosis relatively easily. French medicine is very proactive and they diagnose and treat quickly although they are not as up to date as the UK and they don't share information or educate the patients.

Can I ask some advice? How long do Lupus flares last and am I likely to feel back to my normal self once the flare has passed? Does anyone else get very breathless in the mornings? My GP is confused by it but I wonder if she is inexperienced in Lupus.

magso Sat 07-Sep-13 10:10:01

Welcome Accidental, but I am so sorry you are ill. I do not have a diagnosis of lupus so cannot answer you questions. I do have debilitating breathlessness (and back and joint pain) so can empathise. My breathlessness is worse in the mornings. I don't know why. It seems I have postural hypotension and tachycardia so drink loads on waking to try to help. I have no idea if that would help you. I think the best person to ask is your specialist. Could you ask for lung function tests? Hope your flare up is soon under control. (Hug)

AltogetherAndrews Sat 07-Sep-13 10:40:41

Hello, can I join and maybe get some advice?

Back at the beginning of January, I caught a virus, with flu like symptoms, but also a huge amount of pain, so intense that I ended up at a and e in the middle of the night. However after a few days I felt quite a bit better and went back to work. I managed three days, before the most extreme exhaustion hit me. I couldn't even hold up a book, or walk up the stairs. I was off work for nearly 5 months. The doctors tested everything, said everything was fine, and diagnosed post viral fatigue. No suggestions for treatment, no medication other than codine, as I was still in a lot of pain. No indication of how long it would last.

So I went back to work in May, it was difficult at first, but soon felt ok. Forgot I had been ill. Life went back to normal. But then about 5 weeks ago, I cleaned the kitchen at the weekend, and it came back. More time off work. Although I'm back now. But work is all I can manage some days. I'm sore, all the time. The pain moves about, some days it's my back, often it's my arms. Typing this is leaving me with a burning pain, like the type you would get after a too strenuous workout. Pain killers don't seem to make a difference. My legs and back spasm at night, particularly after a long day. I also often seem to get really painful bowels.

I stupidly googled, and found that these are the symptoms of chronic fatigue symptom, and that it could be permanent. I got really really upset, and stepped away from the computer.

So how do I manage this? I'm only in my 30s, I have two young children, and I am the main earner in the house. I'm already in attendance management at my work, and I really can't afford to lose my job. DH works, but doesn't have a permanent contract, so we can't live off his wages. The spoons theory was really helpful in thinking about how I spend my energy, but when things are bad, work uses up every single spoon I have, and then i come home to a clingy 3 year old, and can't just climb into bed.

Sorry for the essay. God, my arms are killing me now!

TheAccidentalExhibitionist Sat 07-Sep-13 13:30:35

Thank you Magso kind words mean so much at the moment when I'm reeling with the suddenness of it all.
I've managed to get someone to take my son to school in the mornings so at least I can stay in bed until the worst of the breathlessness passes. I'll try drinking loads of water and see if that helps. I have had tests looking for blood clots but they've come back clear, as I expected them to. I know the breathlessness is part of the fatigue for me.

As is often the way, we don't know how bad something is unless we experience it ourselves. I'm sorry that anyone finds themselves on a chronic pain and fatigue thread. I'm sure it will become a much relied on support for me in the future.

Hi altogetherAndrews your situation sounds frightening, especially as you have an active family life and job. I can't help with the answers except to say keep going back to your GP, or perhaps see a rheumatologist? I've found the more I see the GP the more they are inclined to take it seriously.
Do you have an HR department at work or occupational health that you could see. Sending you unmumsnetty hugs.

alwaysonmymind Sat 07-Sep-13 14:04:05

Hi everyone! Could I join the thread? My cat walked across the iPad and it popped up. Fate really as I am so low at the moment.

The spoon analogy is genius and I can't wait to use it to explain to others what my day/life is like. I have good and bad days - it seems as though this has been a bad week.
I was born with a hip defect that was undiagnosed for 2 years. I have said for years my lower back was "sore" we'll bloody painful really - I was constantly told it was transferred pain from my hip. Anyway a hip replacement nearly 3 yrs ago didn't address the back pain and the numbness in my leg. A chance meeting with my consultant sent me for an MRI which revealed spinal degeneration, bulging discs and pinched nerves. The day that letter arrived was great as I felt that I was not lying or imagining it. My STBex had to say sorry as he had always hinted that I was a lazy cow really when housework didn't get done and I reduced my hrs at work.

I teach in Early Years so its not ideal and I have gone on supply to cope with bad days a bit better though. Hopefully it will be ok but I feel very stressed about money. I am thinking of applying for DLA to help but when I see the papers they are full of stories with people much worse than I am who don't get awarded it.

Anyway although I wouldn't wish how any of us feel on my worse enemy it is nice that there are some people who will know how I am feeling

fuzzpig Sat 07-Sep-13 14:51:23

<pokes head sheepishly round door> blush

Hello all... Sorry I've been AWOL for a while. I'm not really sure why, I don't know maybe I just needed a break from thinking about the CFS stuff.

Going to catch up on everyone's posts now xx

raggedymum Sat 07-Sep-13 16:17:14

Thanks for the answers about making friends! Sorry it took so long to get back, but I haven't had the energy for internet until the weekend. It's good to see others find it difficult too.

Hello accidental, altogether, and always. Sorry that you have the need to join the thread, but welcome anyway smile I completely relate with the sense someone said of feeling like you're making it all up. Sometimes I wonder if it's not like the GP said, and some people are just more tired. Than I hear about what other people can do, and don't have to be so careful of spoons (love the analogy, too!), and think my life just isn't normal.

So, we finally registered at the new GP! The process took longer than I expected -- a little beyond DD's patience! -- but it is done. We have appointments in early Oct to be able to get repeats on our prescriptions -- I'm not sure if I should go into everything then, or make a special appointment after I've got sorted that I can keep my meds.

Work has continued to be a nightmare, and it looks like I'm going to miss a major deadline sad Although that realisation has actually taken some of the pressure off -- I'll do the best I can, but I'm not going to go to extraordinary effort as it is unlikely to help anyway.

yegodsandlittlefishes Sat 07-Sep-13 17:19:20

Raggedy, glad that you have registered with the new GP and hope that you can see them soon and that it goes smoothly there. Well done with not letting work take over the weekend or put pressure on you to do more than you should. Better that than over doing it.

Welcome newcomers, and please keep posting.

altogetherAndrews As others have said, do go back to the doctor and get to the bottom of this. They might have just done simple tests and not investigated fully.

candycoatedwaterdrops Sat 07-Sep-13 17:51:24

Just popping my head around the corner to say hi to the newbies. I'm living in a haze of injection anxiety and vomit bowls. I'm not feeling well at all and so damn miserable. sad

Matildathecat Sat 07-Sep-13 18:13:57

Always, we are virtual twins!! I have almost exactly the same history of Undiagnosed hip dysphasia then back troubles later on. I got the knees, too! My back history is long and depressing. It's on here somewhere if you can be bothered to find it.

Anyway just wanted to say hi. I'm lying on my bed full of gabapentin and tramadol. Not the life I planned, frankly.

I no longer work and was able to claim contribution based ESA for a year. I've looked at DLA but wouldn't qualify even though I have Blue Badge etc. ESAwaseasy to get but as I say I wasn't working at all.i was actually dismissed from my midwifery post for ill health. I am in the process of applying for ill health retirement but that's a real old saga.

May I be rude enough to ask your age? I'm 47.

Great to meet you, hope you're ok.x

Love and best wishes to everyone else. I don't post that much on this thread but I do read and empathise. I don't really suffer with fatigue as such. It sounds vile. For newly diagnosed sufferers do read about pacing, it's very sensible.xx

alwaysonmymind Sat 07-Sep-13 19:35:49

Hi Matilda,
I have sat down with kids in pj's as I know I will fall asleep soon ( hopefully). I am waiting to take this evenings tramadol and amitripyline. I also have co-codamol to take as a backup but won't take it tonight. My eldest has gone on a sleepover but is a bit reluctant. Bless her she worries about me and if I'm ok. She is only 9 and I feel bad that I have had to ask her for help especially when they were younger. My mum died when I was 9 and I had to take on a more adult role in my house. I always promised myself if I had children that they would be kids and it hasn't turned out like thatsad.
Anyway I am lucky that they are good kids even if they don't get out to the park or on bike rides as often as they (or I) would like.

I am 40 by the way.

My friends wanted me to go out tonight but I said no as I feel down. They will all get bladdered and I will get stressed about not having a seat. So one was trying to organise a meet up and suggested they come round next Friday to mine and bring a takeaway. Sounds ideal? Except my stress levels immediately went up as the house is such a mess. I was already counting up how long it would take me to make it presentable. I swallowed my pride and told my friend why. She is so good and said straightaway but we just want to see you we don't care about your house. She then offered to come around one day and help me tidy. And she does mean it. But I still said no sad.
The next time I speak to her I am going to explain about the spoons!

Hope you all have a peaceful weekend

magso Sun 08-Sep-13 10:25:49

Always my house is a mess at the moment. It always is but is extra bad because we have been on holiday (spoon shortage and lots of putting away) and the washing machine has gone on strike ( with wet washing trapped inside, and dirty washing piling up). Waiting in for the repair man means I will have to miss a regular meet up with friends, who suggested coming to mine!! I could not cope with that!!
Altogether Andrews I agree that investigations are needed. Perhaps ask for a referral to rheumatology (since you have joint and muscle pain). If after testing for all the other things that could give your symptoms you get a Dx of CFS or fibromyalgia (FMS) then if you are a techy type of person then the book from 'Fatigued to Fantastic' by Teitelbaum may help you. Its very medical and technical, and is really designed for drs to help their patients. There are ways forward for CFS. I am a lot better than when I was first ill - I guess I am 4 years ahead of you. Taking magnesium has been helpful to me- either as a supplement or across the skin via a regular bath with a cup of Epsom salts thrown in. (Hug)

fuzzpig Sun 08-Sep-13 10:57:36

Hi all!

I have finally caught up with the whole thread so am settling back in. Again, I'm sorry I just wandered off before. I think I just wanted to avoid dwelling on the CFS for a while. And then when I'd been away for a while it was harder to come back. I'm like that with keeping in touch with people IRL too.

I'm glad (well, as glad as I could be despite the reasons for people needing this thread) to see so many new people here for support.

By way of introduction (if you already know me feel free to ignore grin), I'm 26 with a 4yo and 6yo, and have been unwell since Jan 2011 with CFS. It was mild at first - I just kept putting it down to getting used to being a working mum. I had to start work PT as my DH got a back injury (prolapsed disc) and had to stop work. I eventually went FT at work (library, so can be fairly physical) and that's when I ended up with my first epic flare up, thanks to a chest infection that stayed for 7 weeks. I then finally started realising how my tiredness was actually beyond normal.

DH had his operation nearly a year ago now and I had another relapse, and was finally seen by specialists at St Barts Hospital in November (I was very lucky to be referred there given that I am in Sussex). As well as CFS I was dxd with POTS, which I think I had since my teens (but I always just thought I was pathetic/unfit). In the same week I was also seen by a psychiatrist in my town, who I saw because I have a lengthy history of MH problems (was abused in childhood as well and spent 4 months in a psychiatric unit for self harm as a teen). He provisionally diagnosed OCD and also said that the MH problems have hugely contributed to the physical burnout because my brain just won't stop. I was supposed to be referred to a psychologist but haven't actually heard anything hmm - but I'm having psychological help from St Barts anyway so I'm not in too much of a hurry.

Anyway, I have tried working FT since then but it is just impossible, so I have now reduced to 3 lots of 4hrs, spread out over the week.

I've had a (mostly) good summer and have 4 sessions of individual treatment under my belt, I'll be back later to tell you all my news as my brain hurts now!

Spoonage to all xxx

Matildathecat Sun 08-Sep-13 12:01:11

Always, I'm with you on nights out. I just don't do it unless to a friend's house. isolation is a terror and leads to depression, more pain and all spinning out of control. So please, please call your lovely friend and accept her offer. Do a bit of clearing up, have a natter, discuss Strictly. Whatever does it for you. Text or email your gang and tell them you feel crap, can't have a late night blah blah but yes please, come over with a takeaway and wine.

My friends and family have honestly saved my sanity. My social life is largely coffee dates and very gentle walks but it's good.

If you keep refusing any help your friends will begin to despair. Turn it around, you're fit and well, your mate is suffering but refuses sincerely offered help. Hard isn't it?

Sorry about your mum btw. I bet your kids are having a great childhood.x

buildingmycorestrength Sun 08-Sep-13 12:55:04

I call friends on the phone while lying down.

I also make sure to text occasionally.

I plan in an hour long visit with nothing else that day if I'm bad.

Spirits must be kept up.

AltogetherAndrews Sun 08-Sep-13 13:23:43

Thanks all. I'll go back to the GP, I'd given up as they were so unhelpful.
I'll also investigate the magnesium magso

I'm feeling a bit better today. Still sore, but energy levels feel better. One positive is that the recovery has seemed quicker this time. But I know that I'll have to be really careful to avoid triggering it again.

I know what you mean about social situations. I go, but flake out really early, and miss the bulk of the evening. It worries me that people will stop inviting me though, so I go. But I'm probably not the most fun anymore, and people keep asking about my health, so it seems to dominate the night.

buildingmycorestrength Sun 08-Sep-13 14:50:39

I kind of want people to ask me how I am, but I don't actually want to be an object of pity, so I developed a script...something along the lines of, 'Oh, you know, I'm quite bad at the moment, but mainly I'm absolutely bored rigid with being housebound so much of the time so please tell me all about how you are and entertain me!'

AltogetherAndrews Sun 08-Sep-13 16:17:06

The state of the house really bothers me. It's always been pretty untidy, but I used to deal with it by blitzing, but I just can't now. DH does his share, but it's really not keeping on top of things at all, and the place is in chaos.

But there was a thread on here yesterday about a website called Unfuck my Habitat, and I had a look on there, and it was full of really useful advice, including a section on how to manage when you have a chronic health problem. I have downloaded the app, and am hoping it will help me get on top of things.
We have talked about hiring a cleaner for a couple of hours a week, which we can't really afford, but would at least mean the hoovering and floors got done. I have two grown up step sons at home, who don't pull their weight at all, but do work, so I have told them they are paying for at least half the cleaner! But the house needs to be tidier before we can get the cleaner.

It just seems so ridiculous that a virus could have made such a mess of my life!

buildingmycorestrength Sun 08-Sep-13 16:38:41

The cleaning is a major big deal. You just don't realise until you can't physically do it. sad I give my husband and the cleaner the routine tasks because I have to do all the non-routine stuff which takes it out of me plenty.

raggedymum Sun 08-Sep-13 19:09:23

Yes, cleaning is horrible! I'm been completely beat today. Yesterday there was a local event that we could see some of from our house, so we sat outside and watched. It apparently took a lot out of me -- I hadn't expected it to. The house is an absolute wreck because I've working home all week and watching DD at the same time, and so if she was happy I let her be. There's stuff everywhere. I figured I'd clean up on the weekend, but yesterday there kept being interesting things outside and today I could barely keep my eyes open. I locked myself in a room where DD was safe and semi-dozed on the floor for most of the day. Now trying to get up the energy to make dinner.

And hi, fuzz, I think we met on a thread previously when I had a different name -- you were really nice and helpful smile

(Ugh, and now I've made the dubious decision of giving DD cheerios. She is not liking the suggestion that she make a game out of putting them back in the bowl, so I had better do something about that before we add crushed cheerios to the decor...)

magso Sun 08-Sep-13 19:28:28

I have a cleaner now too ( although part of the chaos is due to first her then our holiday), for 2 hours a fortnight. It not a lot but she does the routine chores like the bathrooms and floors (sometimes the windows if there is time) whilst I do everything else as and when I can. It doesn't help that ds is very messy ( he has SN). But like you Altogether Andrews it bothers me big time! Our house is too small and cluttered to have a lot of mess and muddle! When my home help first started ( after an op- the house got particularly bad in my absence so there was a backlog and me too unwell to do much) she basically helped me get the place more streamlined. We kind of did it between us. Many jobs are too physically hard for me alone. She also knows lots of short cuts that are maybe not too environmentally friendly (like cleaning the windows and mirrors with paper towels, the leather sofa with baby wipes) - but- needs must. I have had to accept ds room is always going to be cluttered - he just cannot do tidy! I think it is perfectly acceptable to share the cost of a cleaner with working adults in your house.
Fuzzpig nice to hear from you again. I am still trying to get my POTS diagnosis sorted and am waiting to see the CFS lead clinician to see if my CFS diagnosis still holds. Did you have to go for a tilt test? Or did they dx on 24hr BP and pulse results alone? I don't think there is a tilt test facility locally. Personally I think I have both conditions ( not everything can be explained by POTS) but the CFS OT/physio team discharged me into cardiology so I am back in limbo land.
Like you building I email and text - I have an old model I pad which is great for that as it can be used whilst supine.

AltogetherAndrews Sun 08-Sep-13 21:03:53

cleaning with a chronic illness

This is the website I mentioned above. I found it quite helpful.

Solo Sun 08-Sep-13 22:37:47

My ears 'pricked up' with the mention of housework sad I have clutter and chaos and cannot seem to get anywhere with sorting it out. It doesn't help that I hoard. I do try to get some done, but seem to go two steps forward, one back, which rapidly turns into a worse than before nightmare.
I have a 15yo lazy arse Ds and a 6yo Dd. They don't help at all and I'm sick of the mess.
Going to look at the link tomorrow...after work. First day back andf dreading it.

Grockle Sun 08-Sep-13 23:33:14


Welcome to newbies. Sorry you have to join us. This is a lovely thread, full of understanding & support.

So sorry things are so bad newest. I get bedbound but for days rather than extended periods of time. I have long phases of being housebound too.

Candy, that would upset me too. I hate using my crutches because I feel like a fraud. If someone said something to me, I'd crumble.

TheAccidentalExhibitionist, I can't tell what is a Lupus flare & what is FMS but they vary greatly in how bad they are and how long they last. I get bad breathlessness too.

Altogether... how do you manage? You just do! It's very, very hard. I'm a lone parent, with a demanding job that I can't always do properly.

Sorry RichTeaAddict sad

Friendships & chronic illness are really hard. Good friends will understand and, hopefully, new friends who are worth being friends with will understand too. Online friendships are brilliant & help me keep my sanity. In fact, some of my best friends are FB friends... I don't go out for coffee with them but they are always there when I need to talk, often at all times of day and night.

I don't cope with nights out either, unless I am very well & it is dinner, where I can sit & then go home.

You;ve reminded me that I need to text my cleaner! She comes as & when but usually about 2 hrs a fortnight & it makes a huge difference to my quality of life.

For those of you who don't know me... I'm 35, with hypermobility, fibro & lupus plus Meniere's disease, chronic insomnia & tachychardia. I'm currently working part time but haven't done a full (4 day) week since July. This week is the first time & I'm already in pain, beginning to struggle with sleep again & feeling stressed.

My memory is terrible atm. I forgot to take DS to a party yesterday blush I have a terrible cough which makes my chest very tight & my heart races more than usual. I can't breathe when it happens & it's always bad at night & when I am moving around. If I sit still, it's not so bad. DOn't know what to do.

fuzzpig Mon 09-Sep-13 08:55:57

Aaaaaargh cleaning! What's that? sad

My house has always been messy. I grew up with hoarder parents in a much-too-big house and now have a much-too-small house which doesn't cope with all the clutter we have amassed particularly in the last few years. There is a minimalist/decluttering thread which has been my hangout while I've not been here <waves at building smile> - this illness has finally brought it home to me just how much harder all the clutter is making our lives. It's awful, and I have finally become ready to deal with it. I am proud that I am finally confronting my messed up attitude to Stuff, but as you will all understand, I am SO frustrated because I can't actually do the massive blitz I am mentally ready for. sad So instead I have been trying to do a little bit whenever I can but even a little bit really takes it out of me. It is annoyingly slow but I'm trying to look at the long term benefits.

Magso my POTS dx was very quick. I had already read up a little online and was pretty sure that was what was causing some of my symptoms, but I didn't mention the name when I had my CFS assessment, just made sure I told him the symptoms when he asked. During the physical assessment he just compared my HR/BP lying down and then straight after standing up. That was it. I think it makes a difference what CFS specialist you see, IIRC there are some that use different diagnostic criteria which won't diagnose you if you've got certain other conditions. I am very lucky that I saw Professor Peter White who seems to be one of the experts (although from a bit of googling a while ago it seems he can be quite unpopular due to his faith in Graded Exercise Therapy) and he was really nice. He also said that although I clearly had POTS it wouldn't explain all the other symptoms that CFS did, and saw no issue with the two being dxd together.

fuzzpig Mon 09-Sep-13 09:17:30

By the way I had had a 24hr trace (ECG, not BP) in mid 2011, which in hindsight was after I had got the CFS. At that time my POTS symptoms had become particularly bad, I couldn't make it upstairs without feeling like my heart would burst etc. The trace was clear, and the cardiologist discharged me. I said "does that mean it is all in my head?" and he said "no, it just means it is not in your heart." I just put it down to stress as this was around the time I was waiting to start work and there were problems with references etc, and it did get better for a while after I started my job. So no, the trace was not really involved in my dx (but I did tell prof W about it).

So, my news:

Summer has actually been pretty good overall. Spent the first few weeks doing too little and the second half doing too much, so next year I will try to plan things more evenly. It was worth it though - did a couple of London trips (cleverly tied into my hospital visits grin) so DD could go to some galleries (she did an artist topic last term and loved it), went on a Thames riverbus etc. It was great to actually do nice things, but at a gentle pace (my parents have been very understanding of my need to NOT rush round every painting etc).

DH passed his NVQ in fitness training and is now doing the level 3 version which will hopefully improve employability, he has also been put on a customer service thing, so the next 9 weeks are going to be really hard work - he will be training 2 days a week and with him already working most weekends, I'm dreading it. I am just trying to keep telling myself it is only a short term thing (although then of course he will hopefully have more work, but at least then he will be getting more money).

I am still doing 12hrs a week (3x4hr), it's not quite permanent yet as my boss gave me longer to decide, though I'm pretty certain I won't change my mind! It is working well, the lack of money is a scary thing but hopefully DH will be able to make up for it. I didn't take any time off over summer and it's been ok as I know I only ever have to do 4 hours and then I have at least one day off.

I have felt a little unwell for a while, like I was on the verge of a relapse, but it never develops. A few weird symptoms like ovary pain, massive mood swings, I even POAS and felt a bit sad when it was a BFN shock! Don't know what's going on so I'm seeing my favourite doctor on the 19th - hopefully she won't fob me off or just tell me it's all the CFS as I don't think it is.

Sorry about the essay, I will be back later to explain about the treatment I've had as hopefully it will help some people here smile

alwaysonmymind Mon 09-Sep-13 10:27:10

Altogether thanks for pointing me to the unfuck your habitat website. I have downloaded the app and spent last night making list and playing with it! It has made me feel as though things are achievable even if I have to take baby steps to get there.
Matilda I have taken your advice and organised with my group of friends that I would have them over at the end of September. This will give me plenty of time to sort the house out without a load of pressure I hope. It also means that I can keep in touch with them and feel that I am doing my part in taking turns to entertain. Thanks

I had been feeling guilty about the kids watching TV etc while I rested. So I downloaded the change4life smart restart app. The challenge for the kids is to spend 30 less a day in front of the screen. It gave loads of suggestions for things for them to do and they did them (games like catch!) and really enjoyed them. I think it was because the computer told them what to do, not me! Anyway we had a lovely afternoon yesterday and it really eased my guilt too. Bonus!
I am hoping to use some spoons to begin the clear out now. I have saved one by getting the shopping delivered today. I have never done this before and it saved me time and money. Why did I not do it before?

Anyway hope there are plenty of spoons for everyone today xx

fuzzpig Mon 09-Sep-13 12:11:19

We would be totally screwed without online shopping always smile and well done on reducing screen time. This is a big guilt button for me but sometimes it feels like the only option! However as DS is starting school in less than an hour (!!!) we are going DVD free Mon-Thurs. Movie night on Fridays. They still get their 30mins iPad time though. It has only become possible by starting the decluttering process as they have easier access to what is left of their toys (still too much - got a long way to go yet), but it is still an endless battle of mess isn't it! <sigh>

alwaysonmymind Mon 09-Sep-13 13:30:42

I have spent this morning clearing the kitchen counter tops using the 20/10 mins idea on unfuck your habitat. I feel so much better but reversed the times - 10 mins sorting and 20 mins sitting down. In the end I kept sorting as I sat down. Now I am going to have a cuppa and begin watching " Circle of Friends" which I saved a few weeks ago.
Sorting out has meant I found some crafty bits for the kids to do when they come home tonight. They aren't very messy and they are Christmas decs too!
Hopefully I won't have to pay with too many spoons later - kids have no activities as well

magso Mon 09-Sep-13 19:33:08

I like the idea of 20/10 for cleaning , modified to 10/20s for me and always! I looked at the list of daily and weekly and mostly we (me for the day to day with some help from the cleaner for the weekly chores) manage these chores. Its the other things that are not on that list (dusting/ sorting out ds toy drawers/ writing the letters/ chasing things for ds ( spent all morning to transport this morning) all the extra parent duties that take up my energy. Also several chores are daily chores here ( the loo - if you have boys you will know what I mean).
Hopefully the man will come to fix my broken washing machine soon!

Fuzzpig, thank you for your reply. I had my BP checked from supine to standing (30/20 drop) and the tachycardia resolves at night (I was supposed to sit upright for my 24 hr tape which I only half managed). I see the CFS consultant very soon so I'll report back how I get on. Struggling with my back at present.

I suppose I should have introduced myself to the newbies. I'm old, with one ds (13) and have been unwell for 4.5 years following pneumonitis/pneumonia and a long stay in hospital. It looked at first as if I had SLE(because of the type of lung trouble, raised antibodies and joint inflammation) but I'm still in limbo land on that one. Then I got a dx of CFS, more recently OH now probable POTS. I was hoping to get help from my local CFS team (OT/physios) but they discharged me due to tachycardia (I nearly fainted on them so I can understand their reluctance to let me join the graded exercise program I was hoping for), but did organise for me to go back to the lead CFS clinician. I now only work one day a week, having failed to get back to my original 3 day week. This works for me and I am loads better than even a year ago. Heavy fatigue, wobbly legs and keeling over are my main difficulties.

foxy6 Mon 09-Sep-13 21:13:02

hi all would love to join you all. I have an appointment with a specialist on the 25 so I'm hoping for confirmation of diagnosis. the go has said fibromyalgia / ME. I had two months off work after having a cold and returned to work but am unable to work two days in a row as after working a twelve hr shift I'm generally not good for anything the next day. I'm currently of sick after having a bit of a relapse I'm just hoping it will be less than two months as I can't afford that much time off.

fuzzpig Tue 10-Sep-13 07:16:07

Welcome foxy smile grab a chair and settle in. It's often a virus that starts FM/CFS, hopefully you will get the answers you need on the 25th. Have you found anything that helps with the symptoms yet?

I had a rough shift yesterday - towards the end I was in a lot of pain, my hips for some reason. I was limping by the time we left and wanted to cry by the time I got off the bus at home. Ovary pain bad too, hope I don't need to get an earlier appointment at the doctor's as I'd really prefer to see the doctor I know is understanding of CFS (there are some who aren't, to put it mildly hmm).

I am wide awake since 6 angry having slept on the sofa (the norm for Mondays as I am often so tired) so I will take the chance to say what has happened at my hospital appointments. I have had 2 sessions with an Occupational Therapist, and 2 with a psychologist.

The OT's main aim is to make my week more balanced. Currently I have crash days (most notably Tuesdays, caused by the late Monday shift) and end up doing nothing at all, but I am finally starting to accept that over-resting actually does make me feel worse. I think that is more related to the POTS, as I spend so long on the sofa (not necessarily lying down) and whenever I get up it is a horrendous shock. So I need to plan things to do on these days. She is insistent that at least some of it be nice things and that it's necessary to use some energy to enjoy life.

I am still struggling with this though and it's going to be harder while DH is doing his training as I need to pick the DCs up twice a week. Fear stops me arranging more things. We also talk about short cuts and not feeling guilty. So what I might do is get the bus home from school - not ideal as I still need to walk a different way but it's not uphill at least. I am seeing her again on Thursday and I'm going to take my diary to see if she's got any advice for getting through this term. A relapse feels inevitable - imminent, even sad

The psychologist is lovely, we have mainly talked about anxiety as this is such a big issue in all aspects of my life. We talk about different approaches - mindfulness and CBT - and look at challenging negative thoughts and changing behaviour in particular situations. We talk about the past a little bit, but not as much as I thought I would need to - but I think I've done so much 'inner work' over the last couple of years that I don't need so much professional input if that makes sense. We had the second session by phone as I was unwell, it actually worked well to do it like that so we will stick to phone calls at least while DH is training.

fuzzpig Tue 10-Sep-13 10:38:04

Also just wanted to link to my new thread 3 positive things - one thing my psychologist suggested was writing down 3 good things a day (whether they be achievements or just nice things that happened to me) as a way of building up evidence to combat the negative thoughts. IF (and only IF - I know stuff like this can sometimes be too much) anyone wants to join in with trying it, then pop over smile