New to forum…..need help / advice

Chris, I have GBS and the major complain with it that I have seen on this forum is the fatigue. People want to sleep to gain energy and it is very hard to do and seems you never can get enough sleep. Others will be here to add suggestions about the meds. Welcome to this forum and we all know how frustrating this can be trying to get diagnoised. Most of the time it is a process of elimination as they follow the tests that the insurance companies tell them to follow. Be patient and continue to have hope that what you have can be reversed like the GBS. It is a very long Journey and everyone of us is a little bit different from everyone else.

Hi Chris, glad you found us.

I am so sorry you are going through that awful pain. Nerve pain is the worst to try to explain to anybody. I am on Cymbalta 60mg x 2 a day and it helps for my residual pain, however the breakthrough pain is still there and I try to deal. I did try Lyrica, but It had awful side effects so i decided to stop and deal with it when it comes around as it isnt toooo often anymore. Its amazing how everyone reacts so differently to each medications.

How have you felt about your neuro? have you been happy with the treatment so far? Have you felt that the progression has stopped already?

Welcome to this forum. I hear your frustration with the pain and numbness. I was diagnosed with GBS in March of last year and had similar concerns with everything–especially numbness getting worse at night–so much that sometimes it seemed I would not be able to move after sleeping. I did not then have that much pain. I tried changing positions to sleep and this helped. I would get up and move to another place to sleep and this helped–both to move and the different pressures/positions–for example I would sleep a while in my bed, then go to the couch, and then the easy chair… Lots of pillows to keep pressure off the legs/arms helped; put a pillow/cushion between any parts that touch. You might try one of those eggcrate mattress covers to reduce pressure. Keeping my feet warm helps a lot now. I have to wear socks.

The other major thing to help is keeping my feet up in the day and limiting walking. If I do this, the pain is much better and I can sleep better and get more restorative sleep. I think that fluid builds up a little in the legs and this causes pressure and pain on the nerves (even though I do not get obvious edema).

Aleve also helps me. It is a non-steroidal anti-inflammatory (cousin of naprosyn) as does Cymbalta.

I wonder if one problem people might have with sleeping is an alteration in pH or oxygenation level that might affect nerves more in the night. This could be one reason that change in position helps and why cold makes things worse.

With Hope for cure of these diseases.

UR not taking enough neurontin. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Chris, Welcome to the Family. As Gene stated-raise the neurontin, it works the best on nerve pain. It makes no sense for you to be on such a low dose, and not able to sleep doesn’t help you either. Less pain=more sleep. I understand about the sleep, obviously I don’t sleep much either since its after 2a.m. now. Have you tried chamomile tea before bed, a warm shower/bath ect? I know its not much but its worth the try. They don’t work for me most nights, this whole month actually. You might want to try raising your pillow, a gradual incline with support going from your lower back and especially under your neck. It helped me get 4 hours last night, with a smidge more comfort than I usually have. I have a breathing problem now and it seemed to help to have the pillows at an incline. Hope you get some relief soon, everyone id soo different and sometimes it just takes alittle longer to find just the right combo of meds for a good result. Take care.

[COLOR=”DarkOrchid”]Welcome Chris. Took three weeks before a neuro Dx my GBS. Started in my feet and worked its way up to my chest. Had five plasmapheresis Tx which started same day and took ten days to complete. Was put on the build up of Neurontin and have been taking 5600Mg daily for going on four years. Backed off for a month to 900 and willl never do that again. Neurontin is over $2800.00 a month. Thank God for Medicare. My feet are the worst and I still feel paralyzed around my torso. It feels so strong at times it seems to effect my breathing. It is sometimes the worst pain I have ever felt. My average pain is tolerable but I also have Diabetes T1 and it causes me flare ups regularly. My neuro just started me another regimine of pills, Lamictal (Lamotrigine) that I guess is like Neurontin. Then I have Vicodine for breakthrough pain. Can’t drive and I walk with a cane whenever I feel I can get out.

I know what you mean about morning intensities. I get about two to four hours of sleep at a time. I have no control and even fall asleep at my computer. Fatigue is my biggest enemy. A trip to the store can put me down for a day or two. Fifteen minutes of heavy exertion can take a couple of hours to recover. just walking up stairs gets me to breathing heavy.

I’m sure you will find much help here. This forum is the best and people here know what they are talking about. Good luck and take care.[/COLOR]