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

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

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

I'm tired & just want to feel well.

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

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

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

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

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

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

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

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

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

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

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

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

Purplemonster Fri 20-Jul-12 20:32:12

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do you take any supplements?

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

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

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

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

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

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

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

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

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

Gentle hugs to grockle and everyone else.

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

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

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

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

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

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

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

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

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

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