fatigue yet again

Hi Jeff. Don’t give up your only 13 months out. It took me almost 3 years for a good recovery. I’ve been post GBS for 23 years now. I still have times when I get extremely tired but it does get better. Are you still taking physical therapy ? Also has your Doc. tried Prednisone Steroid Therapy. I still have to have that from time to time to get me built back up. Don’t be discouraged it does get better and more manageable. I promise. I’m not saying you won’t have residual effects but you can cope with them. If you need anything let me know… Your in my prayers….

hi jeff & welcome,

the fast track to recovery is to give in to the fatigue & rest/sleep. i slept 20 hours at the beginning & did not make my best recovery till after 26 months. some take provigil [sp] to increase activity. if steroids make sure you are not on them too long – v bad side effects. as anita says, w time you will do better. take care. be well.

[url]http://www.gbs-cidp.org/forums/showthread.php?t=40&highlight=rebuild[/url]

gene gbs 8-99
in numbers there is strength

I am over 4 years out from a severe case of CIDP & didn’t really begin to feel somewhat normal until this spring. I was getting up too early & fighting taking an afternoon nap. I have finally began to listen to my body & feel much better now that I sleep in later & take a nap when I feel tired. I hate not being able to keep up with the rest of my family but they all understand. I can’t stress it enough, listen to your body & make sure you get enough rest. Probably not what you wanted to hear, but it is working for me.
Pam

that no one gets out from under this in less than 2 years. For me it was closer to 3, and I still have lingering pain/fatigue problems on occasion. My onset was 9/95. I took tegretol for pain, which is very similar to neurontin, for about 18 months. some of the many hours of sleep that first year were from GBS recovery itself, and some were from the tegretol, which improved with time. tegretol really wacked my head at first! pushing will not help. time and rest are unfortunately the best things, but these can kill a profession. almost did mine.

peace, above all else
kurt

I ‘m a year out and a few days. I am making an appointment with another neuro. becuse the one I had at onset saw maybe 2 cases a year….Any way fatigue is a problem for me also. If I find anything out I will most certainly post it , but I’m not holding my breath. Being from a small rural area in the middle of nowhere I have to travel either 5 hours to Pittsburg or 4 hours the Phila. of 3 hours to Rochester NY. I have picked Rochester. None the less GBS is a pain in the a$$ no matter where you live.
Bill

Don’t give up on a full recovery just yet. Maybe you should ask the neurologist about some IVIG treatments. My neurologist is always telling me that if I start wearing down or “hitting the wall” to let him know, and he will order some more IVIG. I’m fortunate that my neurologist has seen many cases of GBS, and seems to really be on top of things. Ask yours about it.

rchudgins,

could you pls let me know the name of this good neuro & contact info. i keep a list for future gbsers in need. take care. be well.

gene gbs 8-99
in numbers there is strength

Gene, his name is J. Micheal Watts, D.O. His address is 95 Wall Street, Albertville, AL 35950, phone (256) 878-3999. He is experienced in dealing with GBS and I highly recommend him to anyone in north Alabama dealing with GBS. Very nice guy. Apparently, there are lots of cases of GBS in my area, but doctors are not sure if that’s maybe because it could be under-diagnosed in other areas. Dr. Watts (neuro) and all the staff at the small-town hospital (Marshall Medical South) see a lot of GBS and were thoroughly familiar with dealing with it.

rchudgins,

thx! take care. be well.

gene gbs 8-99
in numbers there is strength

hi jeff,

a few months ago i heard a respected gbs neuro say the younger usually recover faster. but remember attitude means a lot. i was 57 when i got gbs. almost 7 years later i still am in recovery. it’s much better than not recovering. i am 85% recovered [v subjective #]. never give up. never give in. take care. be well.

gene gbs 8-99
in numbers there is strength

Jeff,

We sometimes forget that other medical problems emerge as we get older and, in Manhattan at least, changes in air quality have exacerbated breathing problems.

The only advice I can offer to both you and me is: Listen to your body.

Regards,
Marge

Jeff,

I sometimes blame every medical problem on GBS but I had severe fatigue–caused by severe asthma and copd and was on ssd–before GBS. Have you had a complete physical recently?

Regards,
Marge

Dear Friends:

You have fatigue because your nerves are operating very inefficiently. That is the root cause of everything. There isn’t a magic pill or herb or anything else that will make it better. Any product that advertises more energy is simply borrowing your future energy to have right now. In the end, these products almost always make the situation worse.

The things that do work with fatigue are not easy and demand a certain amount of commitment on your part. They are:

Get enough sleep at night. This means 9 to 10 and a half hours of sleep a night for the average GBSer.

Take naps when you need them. Your body will tell you when you need a nap. It’s up to you to decide if you can fit it in your schedule.

Plan rest time. Make this a scheduling priority.

Don’t do several energy depleting activities without taking a break between them.

Practice good energy management. Create an energy budget where you balance energy expenses versus rest. This doesn’t necessarily mean you need to plan everything out, just keeping energy management in the back of your mind may be enough.

Avoid all stimulants including caffeine, nicotine, energy drinks, and herbal stimulants.

I have only seen one study that had anything positive you could do about GBS related fatigue. The US Army did a study that found that endurance training (sometimes called interval training) did reduce fatigue. I tried an endurance training program for nine months and I had noticable drop in fatigue levels, but during the winter it was too hard to continue training.

Lee

Lee, thank you for your words of wisdom! I have posted them where I can see them daily. When I was practicing yoga “faithfully” I felt much better. When I had a bit of a set back, I stopped and never got started again. “Energy management” ~ I love that phrase. Thanks 🙂

Just an idea- Have you been worked up for sleep apnea or other sleep disorder. Might not be a bad idea to ask your doctor to set you up a night in the sleep lab. Dr. Shawn

Dr. Shawn
There are so many of us who have been tested for sleep apnea because of our fatigue. Unfortunately its the limb and extremely body fatigue that I think we, or in my case, was difficult to describe to the doctors and is not understood. I understand where Jeff is coming from, at times the fatigue is so great that lifting the phone to my ear is an almost impossible task, and I often end up crying from frustration and ‘fatigue pain’.

It is a misnomer that NO ONE recovers from GBS in under two years. I was relatively young when I got it (I suppose I still am :p ) since I was 19. I was walking unassisted in 6 months. The fatigue was a debilitating problem for another few months. Then it gets hard to say because I went straight into denial about the severity of the problem and burned the candle at both ends. These days I live a moderated life. I still get frustrated and unhappy about the fatigue sometimes, but I’m surrounded by people who remind me that I’m more than the sum of chores I can do during a day.

The level of your fatigue will eventually be clear but I agree with the basic prognosis: When I’m exercising I feel better (until I inevitably push too hard because I’m stubborn!), as when I sleep 8 – 9 hours a night and of course the Provigil has helped markedly. A lot of people prefer Ritalin. But if you’re not on any fatigue-reducing drug, you should certainly find a doctor to talk to. I went from having to be in a fog and fight to stay awake for the first three hours of the day (after which, I would take a nap) to not even needing a nap most days. It’s glorious! Now if I can just get back into exercising again, I’ll be a happy gal.

Abby