Sorry, to hear about Nate’s back problem. While over the years the heating pad has been my choice for back injuries. Now the hospital and the physical terrorist both use ice packs much more than heat. Just an observation for your consideration.

I wonder if the easily pulled muscles are from loss of muscle tone and of course the wacky communication. I am seeing a chiropracter for mine because somehow I hurt my lower back recently. Not sure how, but it suddenly started hurting and I was walking around bent over. Heating pad here too…are you using a moist heat one? I couldnt imagine using an ice pack considering how darn cold i am lately!

Be sure to monitor Nate’s heating pad use, if he has any sensory problems.

I used a heating pad while I was recovering from GBS, and burned my thigh rather badly. I didn’t know it, but my skin was numb in that area, and the heating pad was too hot. I only realized this when I felt intense itching on my thigh. There was no pain at all, but when I put my hand there, I found that the heating pad had caused a large blister.

Best wishes, Suzanne

It could be your sciatic. There are exercises to help (stretches, more like), but it is hard to explain. Do you get any PT? Maybe a consult to them would be helpful.

Hi,

See a chiropractor. Sounds exactly like a pinched nerve in one vertabre. Happens to me ever once in awhile, and already with a reduced nervous system, when another nerve gets cut off, it weakens me that much more.

My back and neck cause me pain to. You might want to talk to your doctor about Neurontin if you are not yet taking it. Its non-narcotic and is used to treat this type of nerve pain.

Masons back pain is really bad. That was one of the first reasons he was admitted to the hospital. It scared me, I asked his Doctor about it. I was told that he has alot of muscles back there too.

Hi swimm,

Neurontin is a non-narcotic pain relief drug used in our disease to mask pain. It does nothing to heal or help with anything building up anything in the nervous system. It takes at least 3 weeks in the system to be fully effective and do it’s job correctly. Ask your doctor.

swimm,

This may not be your problem, but if you have exhausted all other avenues, here is a suggestion. I suffer terribly from lower back pain. Sounds similar to yours …… After going to physical therapy, and it not helping at all, I just tried to live with it. There came a point a few months back were I couldnt really walk, or move for that matter because of the pain. I was trying to find someone who could deep massage the muscles in my lower back. Not that familiar with certain things in the US yet, so I asked around and was told to see a qualified massage therapist. I was always under the impression that they just genetly rubbed your back as stress release in day spa’s and such. Really long story short, went to my local hospitals health centre, they had a registered massage therapist, and she has done wonders for my back. She worked mostly in the area just above my buttocks and my very lower back, and included some of the buttocks area and side of the hips down the side leg. At first she could barely touch me, nevermind press down, but after a while she could get into the muscle even though it was painfull. What a relief. After the first 1.5 hour session I felt relief, and nearly skipped out of there. Needless to say, I went to her a number of times …. in fact, I think I need to make an appointment now. 🙂 Im not sure how sensative you still are since you were only diagnosed last month, so this may not be possible, but it may well be worth giving a try. Keep us updated, interested if you are able to resolve this.

swimm,

neurontin most liiely made you dizzy cuz you were given too much too soon. many of us take neurontin, 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 absorbtion max/day. the only reason for the slo build up is it may make you sleepy/dizzy till your body gets used to it. if you really have an adverse reaction to it, stop taking it. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi swimm,

Did the doc mention that neurontin is a siezure drug, and that it’s designed to prevent them? Over years of study, and approved by everyone, it was found to give pain relief to nerve pain patients too. Why it’s so widly prescribed for just that. You may of had a reaction to the drug, that’s certainly possable, but causing siezures??? One thing I don’t do with doctors is get them focused on fixing the blame. That’s why my back problems and all the others get fixed in a hurry. I have no intrest in establishing blame. Waste of time, and doesn’t change a thing. Like pain.

Might want to talk to another neuro to get some opinions. I am assuming you are meeting with a Neuro, if not might want to talk to one about this anyways, my regular general practice doctor doesnt have experience in this area and isnt very familiar with GBS or Neurontin but my Neuro is. Like racer said Neurontin is used to treat seizures among other things. Also, back pain is typical with GBS and the fact that your doc is not familiar with that, maybe he isnt very expericned in treating GBS either. If you havent yet, may want to get a second opinion just a thought.

Hi swimm,

If neurontin is not good for you mabye you could try topamax. That is what I am on and it woks. I have back pain too. In physio I use a “Tens” machine on my back. It seems to help a little bit. I don’t know if it is from my chair or what but I don’t get much sleep as a result because it keeps me awake most the night. You are not alone. The doctors I have talked to have done X-RAYS and they say there is nothing wrong and it is all muscular. So I am having to put up with the pain. I might get to have the Tens machine for myself but it means jumping through the hoops to get it because it is the government. I am almost wondering if this is normal for those of us dealing with GBS. That would be a good question. As this is a horrible thing to go through.

Sonja

Hi I have CIDP and since February I have been having back problems start in my legs then my butt and lower back. I had a Cat-Scan and it showed 2 slightly bulging disk L4-L5 L5-S1. My neuro said that it is not causing me my lower back and leg pains. She said I need to to do exercise to strenghen my lower back and stomach to help it. Yes I don’t exercise much but I work 8 hours on a production line try to do as much as I can. She told me I should consider physio for my back but I can’t afford it. I can probably go about 4 times through my work insurance but that is it. I walk in the stores alot lately but that is not enough. I got a stepper I will have to start using when I am not tired. It is hard at work because my back is giving me more throuble then my CIDP and I can’t do as much so I see the look on peoples face when I am still on modified/light duties. Also I am tired and I am still having problems with my ankle area where I had my nerve biopsy in June 2005. So the pain medication at times makes me tired. It seem lots of people on this forum and the UK seem to be having back problems. I would like to know more about the chances it’s related to my CIDP. I have a mild case of CIDP and I am improving to almost 100% except for my ankle and hands.

Thanks for letting me vents my thoughts on this subject

Sue

Hi,

A common problem that I see, not that this is the case with anyone, is they see the wrong doctor for what ails them. Everything under the sun has to be associated, or caused, by GBS/CIDP, for people to come to grips with another issue or medical problem. Therefor, see neuro only. I got my back pain solved, first by a chiropractor in 30 minutes or less, then this last 2 years, by my orthopedic doctor. Who handled my lumbar buldging disc which sounds a bit worst then you have at the moment. I caught mine just in time to have a chance to let it repair itself. Your neuro says that isn’t a source of pain? It sure was for me though, and most indeed effected my legs as well, and the orthopedic doc said he was surprized I could put up with the added pain it produced, and the added stress it put on my already comprimised nervous system. Which doc sees the most patients on back pain? Who sees this every day in their practice? There’s your first hint folks.

Hi Swimm I get mostly leg pains in the back of my legs then it moves up. I have been going to the chiropractor for about 8 yrs. I love it but it’s not helping me right now. I know I don’t exercise my legs to strenghen them like I should I figured by making my legs stronger it would help. But when I am tired and my right ankle hurts at times do to my nerve biopsy when the medication wears off ( medication make me tired also)I just don’t feel like using my stepper. 8 hours on a cement floor at work is enough. Also what Ali said area just above her buttocks and her very lower back, and included some of the buttocks area and side of the hips down the side leg is exactly where my pain is included is the back of my legs.

Swimm I might take you on your offer some day about asking your wife a question. My Dad had a stroke in May with other problem arising after the fact so now he is back to square one with his rehab.

Sue

Sue,

If you can go to the 4 sessions with a physical therapist from work it may still be of some help to you.

Tell the PT that you need some exercises you can do at home to help you to strengthen your back. My PT got me started by showing me the exercises and giving me printed sheets with diagrams of them too. I do them (most days) at home now and they do help.

I do hope that you get some relief soon. Best wishes.

Hi Suzanne I should have said my work insurance would cover me for about 4 visits total about $250. They will 80% per visit till the $250 is used. I remember now I might have some exercise sheets like that at home somewhere. I had a fall at work 2 yrs ago and need 6 weeks of physio therapy total cost for Worker Compensation $1500. At the time I got a sheet to do exercise for my lower back.

Thanks Suzanne

Sue