Fibromyalgia/CFS/ME & benefits

LadyMorticia

GlasweJen wrote: »

I'd say that the main symptom of chronic fatigue syndrome is chronic fatigue, hence the name. If its main symptom was pain then it would be called chronic pain syndrome.

And anyway, I have talked in this thread about the OP possibly finding it difficult to claim DLA for chronic fatigue and it's related memory problems while working full time as a social worker. Sorry for not being one of the happy clappy "smiles and hugs will get you your award brigade. Maybe I'm bringing this stuff up as I know what im doing with DLA forms, the OP needs to be prepared for what the DWP are going to throw at her.

I wasnt told about my diagnosis of CFS, I read about it 4 years later on a computer screen which was nice.

Same here!

I spent months and months thinking I was going crazy.

Then I went to my GP who said "...you do realise that you were diagnosed with M.E at the hospital, don't you?".

Um...nope! Didn't have a bloody clue!

My GP was just as shocked as I was! She expected me to have received a letter with my diagnosis on. Nope, never received anything!

Torry_Quine

GlasweJen wrote: »

I'd say that the main symptom of chronic fatigue syndrome is chronic fatigue, hence the name. If its main symptom was pain then it would be called chronic pain syndrome.

And anyway, I have talked in this thread about the OP possibly finding it difficult to claim DLA for chronic fatigue and it's related memory problems while working full time as a social worker. Sorry for not being one of the happy clappy "smiles and hugs will get you your award brigade. Maybe I'm bringing this stuff up as I know what im doing with DLA forms, the OP needs to be prepared for what the DWP are going to throw at her.

I wasnt told about my diagnosis of CFS, I read about it 4 years later on a computer screen which was nice.

The main symptom is fatigue like no other fatigue but is by no means the only one or at times the worst.

This is why I hate calling it CFS rather than ME as everyone just thinks about the fatigue rather than the complex concurrent symptoms which occur.

LadyMorticia

Torry_Quine wrote: »

The main symptom is fatigue like no other fatigue but is by no means the only one or at times the worst.

This is why I hate calling it CFS rather than ME as everyone just thinks about the fatigue rather than the complex concurrent symptoms which occur.

Same. CFS almost seems trivial.

GlasweJen

I was under the impression that ME wasn't used because not everyone had encephalopathy with it?

I was years later and symptomless when I read it, there's a thread on it somewhere here. No one knows why I wasn't told just that I saw someone at the hospital, saw my GP loads and it always got blamed on my heart condition.

Torry_Quine

GlasweJen wrote: »

I was under the impression that ME wasn't used because not everyone had encephalopathy with it?

I was years later and symptomless when I read it, there's a thread on it somewhere here. No one knows why I wasn't told just that I saw someone at the hospital, saw my GP loads and it always got blamed on my heart condition.

That's true but until someone comes up with a better name then ME is far preferable to CFS.

LadyMorticia

GlasweJen wrote: »

I was under the impression that ME wasn't used because not everyone had encephalopathy with it?

I was years later and symptomless when I read it, there's a thread on it somewhere here. No one knows why I wasn't told just that I saw someone at the hospital, saw my GP loads and it always got blamed on my heart condition.

My GP uses M.E because she thinks that CFS trivalises the condition.:o

Mine was diagnosed as M.E by the hospital consultant I saw.:o

GlasweJen

Ladymorticia, out if interest did you get a brain scan?

DanE2010

Im another one here who prefers to call it ME as CFS takes away from the rest of the symptoms that can as bad if not more severe than the fatigue. I think CFS is a very misleading name considering all the other horrible symptoms we have to put up with and then we get people coming along with not a clue about the condition talking like they know it all when they clearly dont.

"oh everyone can be tired when they come home from work its not a care need" That type of comment gets me down, you have no idea, this fatigue we feel isnt normal fatigue, if I had a £1 for everytime ive had to say that!

Have a tiny bit of respect for people instead of belittling the condition, it doesnt have to be hugs and kisses just a little understanding wouldnt go amiss rather than make people who are suffering a terrible terrible illness and recieving very little help or support, facing ignorance about it daily that is almost worse than the illness itself feel even worse than what they currently do!

The pain I feel is just as bad if not worse than the fatigue, if I actually have any energy to venture outside say to go to the supermarket I can garuntee by the time I get home im in pain, my whole body aches, my joints as stiff as a board and I find myself shuffling around the house like a frail elderly woman because I find it that painful to walk.

OP I recieve HRM and LRC and I can say that I was awarded this because I had the backing from doctor and specialist, there evidence they gave was really atrue reflection of how my condition effects my day to day care and mobility needs, and at the time I was woring fulltime - altho I was signed off sick at that point and had used up all of my holiday entitlement as I was using that to mask my illness, eventually I had to reduce my hours tho as working full time was makig me incredibly ill and my specialist told me if I was ever gonna stand a chance of getting better I would need to slow right down and build myself and activities back up slowly so im not constantly getting better, working hard, crashing and ending up bedbound for months.

As an aside Lady M I have been on Amitriplyne for 2 months for the pain and also notbeing able to sleep a wink at night, for me it worked great for about a week and then I went back to what I was beforehand, plus ive put loads of weight on which is one of the side effects, of course everyone is different but might want to bear that in mind so now im back to square 1

GlasweJen

If you actually read what I wrote you'd see I said that you have to prove above and beyond. Some people are shattered after work and a DWP decision maker would query any care after work based on this. I used to go to tribunals and I know what comes up, do you think the OP shouldn't know she'll be asked this by 3 professionals when the DM has binned her form?

You were on sick leave, the OP isn't and apparently doesn't have a documented pattern of being off sick so completely different arguments. Your sickness related absences from work collaborated what you said, the OP doesn't have this.

The DWP can check NI records you know.

Jo_King

I think what GlasweJen is saying is important here. You WILL be asked about work in Tribunal - and the truth is most CFS/ME/Fibro claims go to tribunal. For example, I was asked 'if you're in so much pain, how can you sit and listen to people?' and lots of questions about the requirements of work - computer use, phone use, carrying things, moving around office, memory, cognitive function etc.

I absolutely understand the nuanced thing about 'I have x amount of energy, and if I choose to do y, I have nothing left to do z'. But DWP and ATOS do not do nuance well. Your best bet is a very supportive GP and consultant, and professional help in filling in forms. But like I said already, it's going to be a battle. Worth a go, but still a battle.

I've long argued for a 'help to stay in work' benefit, for people with disabilities - I told that that is DLA, but in practice it doesn't work that way.

On another note, GlasweJen, can I ask some advice? I've given up on DLA for the moment - it made me even more exhausted and aggravated my depression. I was told, though, that one of the problems was lack of evidence about my injuring myself. Now at the moment I'm falling and hurting myself around once a week (nothing to your experience I know!). I tend to just say 'hey ho, sprained ankle/wrist, purple thigh/shoulder' and get back to work (at the moment standing - can't sit!). I don't like going to the GP - waste of NHS money since they can't do anything for bruising, spraining, but do you reckon I should go, so there's a record of injury if I do ever decide to attempt DLA again?