first posting day at the forums

Hi Stilltired,
I can totally relate to what you are saying- it sounds exactly like me! I was diagnosed in September of 2008 and have made an amazing recovery as well (we are blessed!) except for the lingering fatigue. I, too, have a little one (22 months old) and I am definitely not the person I was. My neurologist is wonderful, but thinks my complaints are “small potatoes.” He had another severe patient call me to remind me of how well I am doing…..
My advice to you is to rest whenever and whereever you can- If your kids are napping, then you nap. This helps me alot and I NEVER had napped in my life before this. Also, I have found the natural Emergen-C drinks helpful. They seem to give me a little “boost” be it psychological or not….
Try to remind your significant other that you are not back to normal yet too… I think this has been another problem at least for me… since we look “normal” everyone expects us to resume to our pre-GBS status and that is a difficult act to follow, when you feel as fatigued as I do all the time. Good luck to you and your family… Reading all of these posts really makes me feel fortunate to have recovered the way I have and I am sure you feel the same… Tracy

Fatigue is one of the least appreciated, but most significant consequences of GBS. It does not affect everyone. A lot of neurologists (including mine) do not believe that fatigue is part of GBS. There are a number of good medical papers on the subject and more and more doctors are coming to appreciate it. The medical papers state that the amount of fatigue does not match up with (correlate) with the degree of severity of the GBS. I also had a “mild” case, but tremendous fatigue. Now almost two years later, the fatigue is easing up it seems, but it was really, really tough for a long time and still is not easy. Please look at the notes from the Symposium about fatigue (in the Main Forum under Notes on GBS and CIDP).
WithHope for a cure of these diseases

Hi Julie,
Glad you posted, you will find many kind people here to help you medically and emotionally. My 12 y/o has cidp so I am limited with gbs knowledge, (as this was our second dx and we were later re dx with cidp) Keep positive and rest when you can. Best wishes1
Dawn Kevies mom

Hi Julie,
So sorry you felt alone with this, you are not alone now.
Fatigue is a big issue with GBS. I have had GBS since Oct. 07.
I would sleep hours during the day and evening and still go to bed
and sleep at bedtime.
I gradually started sleeping less and less. I am now able to go some
days without sleeping or make do with a nap of an hour or less.
I don’t know how you could be getting the rest or sleep your body
needs with two small boys and working part time.
Google “The Spoon Theory”, But You Don’t Look Sick.
I don’t have the link for it but it has been discussed on the forum.
You may want to print it and give copies to family and friends.
This might help them understand your fatigue.
My family understood my fatigue as I had a Dr. that said to
[B]REST [/B]as much as you can.
Shirley

[url]http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf[/url]

StillTired,
My first bout with GBS left me exhausted although it was a mild case. I continued teaching but had to take one or sometimes two days off to get my strength back. When I did go in, I had to teach and make the plans for the substitute. The students did not suffer because of this. However, my superintendent gave me a poor review because of the days I missed. When I showed him my diagnosis, he said that if I weren’t in the hospital, then I should be at work. Grrrrrrrrrrrrrr…….maybe someday GBS will be well-known so we can get the empathy we deserve.
I took adrenal extract and that took the pain away and brought down my blood pressure. I think that GBS is when we overload our body – whether it be with an immunization or stress. The adrenal glands are important in this instance. So I supported them with the glandulars I took. I took them during my second bout of GBS and I am pain free. I healed alot faster this time although it was alot worse than the first time.

Hello Stilltired and welcome to the forum

I had the Miller Fisher variant of GBS in May 08, my neurologist told me that I had a very good recovery, the only residuals are fatigue and my voice not being back to normal (the throat was the most affected part of my body and my voice is slowly coming back).

About the fatigue, I agree with the others, rest whenever you can and get plenty of sleep. Also, try to have a healthy diet and do some exercise if you can, yoga gives you more energy and swimming is also very good (but you’re likely to feel exhausted after a swimming session!), walking also has lots of benefits.

Best wishes

Yep fatigue is awful. I am almost 3 years post onset and still have bouts of tiredness. Although it is so much better than when I was first sick. You are still new to this and mild or not, the exhaustion is still there. It will ease with time, how much time no one knows. Give yourself time to heal because you may be “recovered” but your body is still healing. Some days will be better than others, and you will quickly learn your limits. Those limits will change as time goes on and there will come a day when you realize you didnt need that long afternoon nap, or it is shorter than it used to be. It is a slow process but things will get better.

Julie,
What a great report you have given us. Keep it up!
Take care of yourself
Shirley