Cfs

saving_pennies

I have CFS and my university are great. You can get disability student allowance from student finance which offered practical support and equipment. You can also get ESA whilst studying. I get ESA, DLA and study at uni on a part time basis with a high level of support.

Anubis_2

Torry_Quine wrote: »

I thought so but some have talked of fibro and FMS so confused me.

I'm not unhappy with my diagnosis, just meant that as I have ME the fact that there are rheumatologists doesn't help me.

Do you mean you are disappointed in the limited NHS care given with regard to your condition? I'm afraid in cases of CFS/ME/FMS that it is common to be thrown on the scrapheap. There isn't much they can provide in the way of relief despite them trying.

LadyMorticia

Anubis wrote: »

Do you mean you are disappointed in the limited NHS care given with regard to your condition? I'm afraid in cases of CFS/ME/FMS that it is common to be thrown on the scrapheap. There isn't much they can provide in the way of relief despite them trying.

I agree completely.

I was thrown on the scrapheap when the M.E clinic said that I was too severe to be helped.

Mojisola

LadyMorticia wrote: »

I was thrown on the scrapheap when the M.E clinic said that I was too severe to be helped.

This is one of the problems with the studies done on ME. Almost all of them require people to travel to a centre and participate in some kind of activity, even if it's just counselling. People with moderate to severe ME are unable to do this on a regular basis - if at all - and so are excluded from the studies.

Mojisola

There's some interesting opinions about the next twenty years of ME here - http://phoenixrising.me/archives/10920

Torry_Quine

Anubis wrote: »

Do you mean you are disappointed in the limited NHS care given with regard to your condition? I'm afraid in cases of CFS/ME/FMS that it is common to be thrown on the scrapheap. There isn't much they can provide in the way of relief despite them trying.

I've never been offered any kind of help other than pain-relief etc from the GP which brings its own problems! :mad:

Anubis_2

Torry_Quine wrote: »

I've never been offered any kind of help other than pain-relief etc from the GP which brings its own problems! :mad:

To be fair, apart from a pain clinic and a bit of physio thrown in, there is little they can do. I was referred to the pain clinic years ago, who gave up on me "nothing we can do, you are too limited in mobility for exercises" followed by the same attitude at physio.

Until they find out more about things, there is little that can be done which is why it is impirtant you pace yourself etc to do what you can, for you.

Isis_Black

saving_pennies wrote: »

I have CFS and my university are great. You can get disability student allowance from student finance which offered practical support and equipment. You can also get ESA whilst studying. I get ESA, DLA and study at uni on a part time basis with a high level of support.

Yeah I have that set in place already after my depression (that I do think now actually not think but know I was misdiagnosed as he didn't listen to my problems)

I'm just thinking right now it's not the best place for me, especially with the travel of 11 miles there and the same back everyday just kills me, I'm shattered by the time I get there, then lectures ok yeah are boring but I really struggle with them
Then I have to work our studying round feeling crap and having a family
I really wouldn't recommend going UNI when you have kids and an illness :-s
I'm proud I can say I've given it a go, but I'm really thinking I just can't do it right now

Mojisola

saving_pennies wrote: »

I have CFS and my university are great. You can get disability student allowance from student finance which offered practical support and equipment. You can also get ESA whilst studying. I get ESA, DLA and study at uni on a part time basis with a high level of support.

Make sure they offer you an extension to the exam times. My son was also allowed to take his exams in a small quieter room and could use a computer which was a lot less tiring than handwriting exam answers.

HellsGranny

I'm a Fibromite, was diagnosed in 2010, but have become much worse in last year, recently been back to Rheumy, who has referred me to Neurologist and Physio, (who has arranged for a Occy Therapist to come and visit me). Recently, I have also seen ENT surgeon, Voice Therapist, and cardiologist.

Personally, I think there are aspects of both Fibro and CFS in my condition, the fatigue is immense, even just walking is very difficult now, long recovery, sometimes several days, Pain is a constant feature, as is stiffening if I remain in one position for more than a few minutes.

It is all complicated, I was a very active person, caught Shingles, and soon the symptoms, which had formerly been mildly annoying, became progressively worse.The thing that really confuses me is that I don't get 'Flares', it just progressive, measurably so, apparent even to family members.

I am fairly old for a first diagnosis, (64) and rather unhappy that I was retired before diagnosis, still, them's the lumps!:( Was looking forward to some World Travelling, but......... never mind, the Law of Sod kicked in!

I'm not complaining, just commenting on my personal position just as an example of what can happen.