A short sad history of ME/CFS

mardatha

Hellsgranny I'm the same. Been ill 7+ years now and still cant get it right. I take 2400iu of vitD a day, it has helped. I have been better since I started taking it, but not back to normal by a very long chalk.

Trialia

HellsGranny wrote: »

I'm wondering if there is an element of ME in my condition, as others I know with Fibro get on far better than I do! I'm so frustrated that I am getting worse and very little is being done!

Not necessarily. ME and Fibro are very similar in a lot of ways. The best I can explain the differences... FM tends to have the pain element emphasised more than the fatigue, and ME is more the other way around. I find my friends with ME get remission and relapses, but my friends with FM don't seem to - it continues to fluctuate all the way through.

I have had FM for five years and, like you, I have it very badly. Unfortunately, some of us do. I think the percentage of British FM sufferers who have it relatively mildly is something like 75% (I read that somewhere?), then you have the others: those of us who are put completely out of our previous lifestyle by it and struggle to get much of anything done without help.

Re. the fatigue that you mention, this is what happens when you overdo it with FM - you pay for it.

NEH

I really don't think it is clear cut, everyone is different, it affects us all differently..

I have known a lot of people in the years i have had them and ME does have severe pain at times. I have never understood people who say the Fibro people have mostly pain as myself and others when we had ME suffered from very serious pain.

As for the fatigue some people suffer more than others, even in support groups i have been to, some are wiped out by it others not so much...I wish it was clear cut but it isn't, ME and Fibromyalgia present differently and one thing that affects one may not be so bad with the other.


Hells Granny have you thought about using the Fibromyalgia forums?

http://www.fibromyalgia-associationuk.org/community/

http://www.ukfibromyalgia.com/forums/

Trialia

NEH wrote: »

I really don't think it is clear cut, everyone is different, it affects us all differently..

I have known a lot of people in the years i have had them and ME does have severe pain at times. I have never understood people who say the Fibro people have mostly pain as myself and others when we had ME suffered from very serious pain.

As for the fatigue some people suffer more than others, even in support groups i have been to, some are wiped out by it others not so much...I wish it was clear cut but it isn't, ME and Fibromyalgia present differently and one thing that affects one may not be so bad with the other.

If you re-read my post you may actually get the point of what I just said. I didn't say pain isn't bad with ME, nor did I say fatigue isn't bad with fibro. I said the emphasis tends to be on one side or the other depending on which you have. Some people are unlucky enough to have equal pain and fatigue with both conditions; I do, and I don't have ME. But that is my experience of it - that the majority of ME sufferers tend to have more fatigue than fibromites and people with fibro tend to have more pain than people with ME.

Note the use of the words TEND TO, and don't treat me like an imbecile - I do have a fair idea of what I'm talking about.

NEH

Trialia wrote: »

If you re-read my post you may actually get the point of what I just said. I didn't say pain isn't bad with ME, nor did I say fatigue isn't bad with fibro. I said the emphasis tends to be on one side or the other depending on which you have. Some people are unlucky enough to have equal pain and fatigue with both conditions; I do, and I don't have ME. But that is my experience of it - that the majority of ME sufferers tend to have more fatigue than fibromites and people with fibro tend to have more pain than people with ME.

Note the use of the words TEND TO, and don't treat me like an imbecile - I do have a fair idea of what I'm talking about.

Trialia i think you need to step back, it wasn't necessarily aimed at you....I didn't quote your post, i meant in general. Not everyone is against you and i never said you were an imbecile....

mardatha

We all need a break and a cup of tea ladies !

NEH

mardatha wrote: »

We all need a break and a cup of tea ladies !

Classic moment of Fibro that it's just twigged with me you're in Scotland same as me...(flag might have been a give away :rotfl:)

I'm central Scotland, moving next month to Moray...whereabouts are you?

mardatha

I'm up in the border hills, currently flat on my couch totally wiped out

NEH

mardatha wrote: »

I'm up in the border hills, currently flat on my couch totally wiped out

Ditto! This treatment I am trying, i'm affected by the side effects so yes the couch has been my home for the day

I always find it interesting how different areas have different treatments or different approaches....

KxMx

clouty wrote: »

.

, it seems that the powers that be want to support us on ESA and DLA and HB and CBT (that's council tax benefit, not cog. behav. ther. ) in our sickness, rather than bite the bullet to start with, find out what is truly wrong, and fix it, if possible, and it often is. Instead of encouraging the few doctors that understand this disease, and training more, they persecute them.

Short sighted thinking, indeed.

Sadly the negative thinking towards ME means to get any benefits is a real fight, like a Medical I had once apparently I would "get better in a year" when I had already had it for 8.