Dear Marge!

A near and dear friend has CFS, and I think she will be interested in your information, so I take the liberty of sending your post to her.

Thank you:) 🙂 🙂

marge and allaug, there is also more info on medscape.com in there last issue. very interesting info.

yeah, hopefully soon!!!!! until then i’ll stick to my high protein diet!!!!!

I’ve often felt that the residuals from GBS seem a lot like CFS, so I had a lot more sympathy for those suffering from chronic fatigue! It’s not just feeling a little tired or rundown – you can be completely debilitated by it. And the fact that no one understands it, or thinks you are just lazy, contributes to depression which doubles the fatigue.

I will tell you that the fatigue factor involved in GBS residuals is THE WORST part of recovery. For the most part, I can deal with chronic pain – I had that before GBS 😉 – but fatigue completely altered my life. Even when I do get that rare burst of energy and get pretty active, I pay for it for days.

WHAT I WOULD GIVE for a med that would combat fatigue!!! They seem to have a pill for everything else under the sun these days, why not fatigue? But then again, revving up our bodies to do more than they are capable of probably wouldn’t be a good thing, would it. 😮

I agree wholeheartedly, Birdie.

I have CIDP and there’s nothing worse than reaching 2.00pm and suddenly being unable to function because of fatigue. And it’s not that I feel sleepy; it’s an overwhelming tiredness that affects every part of my body and brain.

If only my face would turn green or something to indicate it was happening. Then maybe people wouldn’t wonder why I’m slumped at my desk.

Deb

Dear Friends:

The diagnosis of Chronic Fatigue Syndrome is based on finding no other known cause for fatigue. SInce there is a very real cause of fatigue for GBS and CIDP, then, by definition, people with GBS or CIDP cannot have CFS.

The thing that frustrates me is that people have been given disability status based on CFS, which may or may not have a physical cause, but not with GBS which has a real physiological basis. It just seems wrong. Maybe we need a buzzword for the energy draining aspect of GBS residuals so that we don’t have to go to war every time one of us is forced into a disability retirement.

Lee

Hi,

The way I see GBS fatigue, is purely on the phisical side. The nervous system was reduced in operational capasity due to the attack of the disease. The facts are there that nerves don’t nessessarilly grow back, and if they do, no gaurentee that the length or original routeing will occur. I have the same size and weight body as you, for an example, yet my bodies’ working much harder to preform like functions. My body preformance will drop off quicker then yours, to the degree each person is effected from GBS. I guess you call that fatigue. Makes sence to me. Why I recommend that if you’re demostrating your fatigue issues to a pro, always go for distence first to see just where you can go, or do, with tacks or devises. I sit next to my therapist and her clipboard, pick up a hammer and pound the nail three times. See writes down I can use a hammer and pound nails. As I’m looking over her shoulder to see that, I say hang on a second. Let me start a continuous pattern to see what happens. Things looked good threw strike 5, then 6 threw 10, the strikes grew weaker, and by 12, the hammer was comming out of my hands in the swing motion. Now what do you write down? I can walk better then most, who were lesser effeced damage wise then me, and show that visually to a doc or therapist, only because I trained my body to do it. See me 500 yards down the road though, and you’ll want to dial 9-1-1 for me. I’ve wondered if putting GBSers threw a complete cardiac workup, where body stress, endurence, and so on are measured so well, might prove to be a measuring, or grading system that could benifit us in a way. Establish fatigue levels or grades. Some of this sports testing can be directly applied to fatigue issues, I would assume. Most everyone saw Lance Armstrongs’ training program from the medical side. Tubes, cords, wires and pads all over his body riding stationary measuring endurence. Because I have axonal damage, I know my fatigue is permanent. I can say cronic also. If everyone wants to play dumb and ignore fatige as a ligit residual from GBS, then I get to claim syndrome too. I do not have CFS. I could argue I have acute fatigue syndrome really. Along with sensory, axonal and motor neuropithy. I stick with just GBS. I can’t speak to the legitimacy of CFS, but I will go out on a limb and say you can’t have both CFS and GBS, claiming fatigue is a seperate issue. Or is now an issue years later, and GBS is the cause in past med history. It has to stand alone, on it’s own merits.
R13

Dear Marc:

Good to see you back. I really missed arguing with you and goofing with you the last couple months. I hope I didn’t blow your cover.

Lee

[QUOTE=Lee Spurgeon]Dear Marc:

Good to see you back. I really missed arguing with you and goofing with you the last couple months. I hope I didn’t blow your cover.

Lee[/QUOTE]

Racer13

I was a good girl and didn’t blow your cover. Lee you’re in big trouble now Mister.:D

Dear Brandy:

OK, maybe I’m in a little trouble, but at least Marc hasn’t seen the e-mail address at the bottom of the page on the “I’m not all that impressed thread”. If he sees that he may go Cherynobol on me. But don’t worry, I’m not telling him a thing.

Lee

You said it very well Deb. I find also around 2pm I get more tired body mind and spirit a different tired. I take ADHD pills 54mg of Concerta that supposed to last 12 hrs but I think it only last about 6 hours most times. I get tired and that just over powers my pills. I wish my face would turn green also so people realize it just not the everyday tired they get. Like when they say “we all get tired” “When you get older you get more tired.” Most people I work with don’t understand.
Thanks Deb

Sue Watters1
CIDP

[QUOTE=Lee Spurgeon]Dear Brandy:

OK, maybe I’m in a little trouble, but at least Marc hasn’t seen the e-mail address at the bottom of the page on the “I’m not all that impressed thread”. If he sees that he may go Cherynobol on me. But don’t worry, I’m not telling him a thing.

Lee[/QUOTE]
[COLOR=darkorchid]I was proud of myself for not blowing Marc’s cover, either*. Marc was a no-brainer, hands-down when I saw ‘racer13’*.[/COLOR]

[COLOR=#9932cc]*ok…I’m using a quick reply. No smilies available.[/COLOR] [COLOR=darkorchid]Also using, ‘quote messaage in reply’, too.[/COLOR]