A short sad history of ME/CFS

wssla00

NEH wrote: »

If you could afford it there is a specialist in Glasgow you could see....

NEH What is their name? I am struggling at the moment with an awful neurologist who doesn't listen to anything I say.....

zesting

I sincerely hope that the new research makes life for people with ME easier even if those of us with ME for many years have to wait longer to get back a good quality of life.

Moneywise a year and a half ago I had an assessment at home for DLA. The sort of health issues I have make it extrmemly difficult for me to converse and at that time even hear other people conversing. Many chemical sensitivities mean that scented products are damaging to my health. Anyhow during the visit I became almost immbolised, at the end unable to holding a seating position, unable to turn or move my legs, and slid to the floor crying. This is normal for me which is why I'm unable to converse, do averge cognitive tasks or be near people with perfumed products and various other chemicals. After the sliding to the floor and crying bit the doctor looked agitated and left in a hurry saying he'd complete his report elsewhere. It took me 8-10 weeks to recover from that doc's visit. I was refused DLA, the report of the assessment was at least half lies. Apparently there was nothing wrong with me I just needed reassurance! The expereince was sufficiently damaging to my health that I'd rather sell everything I own that live with the consequences of further damage. Fortunately I don't have to as my other half has secure work for another 11 months and refuses to let me go through that again.

I can easily see why for some people death is preferable to allowing fragile health to be further damaged, perhaps irrevocably.

For anyone up to the challenge of dealing with benefits I suggest you film or record the event, else it's your word against theirs and some officials seem extremely ruthless. Might be an idea to get prior and named permission to film and record to avoid last minute hassles or refusal.

prettypeach_2

sunnyone wrote: »

ME and fibro arent a diagnosis, they mean that nothing else can be found to be wrong with you.:p

I take it from the smilie that you are joking?

Fibromyalgia is a triad of symptoms - sleep problems, joint/muscle problems and IBS - which are given the label 'fibromyalgia'.

I'm not going to even get into the whole M.E./CFS thing.

Trialia

prettypeach wrote: »

Fibromyalgia is a triad of symptoms - sleep problems, joint/muscle problems and IBS - which are given the label 'fibromyalgia'.

If only!

FYI, for some of us there's a lot more to fibromyalgia than 'just' that, though that's bad enough. The cognitive processing issues are hell.

prettypeach_2

sunnyone wrote: »

I have a friend with ME and she is totally disabled by it, it dosnt allow her to be totally fit one day and bed rest the next as some people think it can, its a perminante exhaustive state that means the bare needs of self care are impossible most days, not camping, walking the dog and going about normal daily life most of the time.

Hmmm. Just because your friend's M.E. manifests in that way, that doesn't mean that M.E. can't manifest in other ways. It's well known, especially by a lot of sufferers that, similar to MS, M.E. can take a relapsing/remitting form.

prettypeach_2

Trialia wrote: »

If only!

FYI, for some of us there's a lot more to fibromyalgia than 'just' that, though that's bad enough. The cognitive processing issues are hell.

Actually I have fibromyalgia and M.E. myself thanks.

Yes, I know the cog stuff is bad, fuzziness, shutdown etc. etc. I don't know what's coming from where any more!

ash4becks

hi all might sound a silly question but are any of the M.E suffers overweight, consultant i sore said he wouldnt dignose me with m.e because of this which i find bizzare

prettypeach_2

ash4becks wrote: »

hi all might sound a silly question but are any of the M.E suffers overweight, consultant i sore said he wouldnt dignose me with m.e because of this which i find bizzare

That does sound bizarre.
Was he saying he wouldn't diagnose you because you were or weren't overweight? Not that that should have any bearing on it at all!

Mojisola

ash4becks wrote: »

hi all might sound a silly question but are any of the M.E suffers overweight, consultant i sore said he wouldnt dignose me with m.e because of this which i find bizzare

It is bizarre. Did he give any explanation for his decision? What is his speciality?

This kind of odd belief is common among doctors. We've been told by different doctors - "only people who get really ill within a couple of days have real ME, everyone with a slow-onset illness has something else" and "everyone with ME has severe depression - if they don't have the depression, they don't have ME".

I went from doing a very physical job to being housebound in the space of a week. I put on a lot of weight.

I have never had any of the digestive problems that many people with ME have. That often causes weight loss. Perhaps the consultant has only seen people with those problems?

ash4becks

prettypeach wrote: »

That does sound bizarre.
Was he saying he wouldn't diagnose you because you were or weren't overweight? Not that that should have any bearing on it at all!

iam about 15 stone so yes iam overweight i no that, and i do want to lose it , said he wouldnt dignose me with M.E because i was overweight,

theres Prof Rodney Grahame and think going to see him might be best idea will ask gp for the refural even though iam in newcaslte and he is in london but is leading speicalist

he was going on about sleep apnea which i find very strange considering iam a really quite sleeper it just doesnt fit and have been told that of bfs ,

i have appointment this afternoon with gp iam not happy at all, he didnt even examine me for fibro either which made me more annoyed as he doesnt
belive in it when i have had 2 gp's say that to me,

also the doc has hms himself and i asked him how long flare ups last he said 24-48hours , so asked why was i really bad for 3-4 weeks and are still recovering now , and didnt take in concideration my back is really bad, i was dignosed with ibs when younger aswell and then he wouldnt give me better painkillers either even though i told him they didnt work well , my heart is rasing atm out of breath i really think he is wrong my gp knows me better i just hope she listens have you ever found that with some docs