CFS (chronic fatigue syndrome) Help required

jaynemaria

HI,

CFS is an umbrella term for M.E/post viral fatigue. My Gp calls it M.E but another doctor in the same practice calls M.E C.F.S.

to say yoiu can lead a normal life with CFS is rubbish and I'm sure if the person that said about inflammation of the brain is in all sufferers si sadly misled. There are no known test to diagnose M.E/C.F.S just lots and lots of tests to rule out other causes. Excercise is the worst thing for M.E sufferers as they tend to post exertional malaise.

I have M.E and have gone from working full time and walking and swiming regularly to not eing able to walk without extreme pain and discomfort, cant bathe alone and cant cook myself a meal.

You could try DLA if you have had the needs for 3 months or more but to be honest it is very hard to get contrary to what people are led to believe,so it would really help to have a welfare rights advisor help you.

Good luck

jaynemaria

You could also try www.foggyfriends.org. You will find loads of info and ask any questions you want with regard the illness

mardatha

There will come a day when there are so many people with ME that the powers that be will need to stop lying and denying and DO something about it.

happymumto2

Nutz666 wrote: »

If you have been diagnosed through a consultant at the hospital, they would normally give you information about what you could claim if they thought you were entitled.

DLA is not awarded on diagnosis but on how illnesses effect you. CFS is quite common compared to ME as ME is usually diagnosed through brain swelling and can be proved via tests whilst CFS can not. DLA is difficult to be awarded just for CFS as many people still think it's a pschological disorder rather than a physical one. Many people live normal lives with CFS and it is mainly treated through exercise and pain clinic if extreme. You would need FULL backing from your consultant as DLA would contact them.

If you work FT then maybe cut down hours if too much at the moment. Working would be good for your morale though and maybe explain to your boss about the diagnosis, they may compromise with you.

I was diagnosed with ME in 1994, I have never had (to my knowledge), brain swelling as I had no tests on my head. Where did you hear this, as I may have been misdiagnosed.

mardatha

I know that the brain of a person with ME shows differences to a normal brain...I read this somewhere and also spoke to a girl who is a hospital technician, she said there are big differences. But I don't know what they are and anyway the NHS wouldnt fund it for us to be tested.

jaynemaria

The two cases I have heard of where M.E sufferers have swelling of the brain were both discovered during a post mortem after they had died.

Although I havent had a brain scan, I know of a lot of sufferers mainly where they wanted to rule out M.S who have had the brain scan along with mri/ct scan and they have not shown any abnormalities. When I first went to see my GP and then consultant they both said the same that 'normal' brain scans dont show any difference, otherwise they would be able to use this as a medical test for confimation of the illness.

Jami74

I was very nearly diagnosed with CFS. I spent two years begging for help from the doctors as I slowly found life harder and harder. To cut a very long story short I eventually managed to get a referral to an endocrinologist. She was all ready to refer me to a centre that specialises in CFS and said that I ticked every box but I pleaded with her to let me try levothyroxine first (as my Mum has an underactive thyroid and had similar symptons until she was diagnosed). My blood results (and x-rays, scans etc) were 'normal' but she reluctantly agreed for a trial and the rest is history. Within weeks the pain subsided and I started being able to wake up when my eyes opened in the morning. A year on and I no longer feel like a geriatric. Sorry to go off topic and i don't want to sound patronising or offend anyone but for anyone thats not 100% certain of their diagnosis have a look at things like thyroid disease.

jaynemaria

That is a very good point.
I was lucky (if thats the right word) to have a great GP who knew that I was never ill before this so along with all the other tests I had to have thyroid tests right at the beginning and also from my endo along with cortisol synapten tests but they all came back normal.

I am suprised though that a lot of sufferes arent given these tests as standard,