Pain with healing nerves?

    • July 29, 2015 at 12:56 pm

      Hi, my name is Lisa. I was diagnosed with a very mild GBS 3 weeks ago. I was only hospitalized for a week during IVIG treatment, and sent home for rehab. This whole experience for us has been frustrating, as I’m not sure the staff at the hospital really knew what to do with me, since I wasn’t a “textbook” case. We haven’t got much information on what to expect during this recovery process. They didn’t even schedule me for follow ups with neuro or PT, I had to do that all myself from research. (ugh!) I’m sure it’s out of my own strong will, but I’m able to walk, albeit slowly. I still have numbness and tingling in my arms and legs, and I get exhausted just sitting in the upright position for long periods of time.

      My question is this: yesterday I started having this searing pain running down my arms and legs. I’m assuming I should take that as a good sign, and it means my nerves are “waking up”? Does anyone else have this experience? Is it something that lasts through the entire healing process? Something to be concerned about? I have left messages for my Dr regarding something to take to manage the pain through this, other than the advil I’ve been taking… but will that even work without hindering the healing of the nerves. I know there are not cut and dry answers because everyone is different, but I was hoping someone out there can just give me some guidance on what to expect here.

      I have also requested from this site some information on a local group in my area, but have heard nothing back. Does anyone know if there are any in the northern California area, preferably around Sacramento?

      Thank you!

    • GH
      July 29, 2015 at 2:41 pm

      Shooting pains in the limbs are normal with a peripheral neuropathy and can be associated either with healing or with the opposite. Follow-up exams are essential to determine if you are making progress and not backsliding. Either a neurologist or physical therapist can monitor your strength to check this. Your pain sensations are not enough.

      Were you diagnosed in the hospital? When you are discharged from a hospital, your care is transferred to your primary physician and neurologist. If you didn’t have a neurologist before being hospitalized, then it is not unusual that you would need to find one on your own at that point. Regular checkups with a neurologist are essential until it is determined that you are not in danger of relapse.

    • July 29, 2015 at 2:52 pm

      Thank you for the response. I was under the impression that once you have this, you likely won’t get it again. What do you mean by relapse? I know there are certain things to monitor, such as lung function to not develop pneumonia, but I haven’t been told of risks involving getting worse instead of better…

    • July 29, 2015 at 5:11 pm

      Lisa, since you are fortunate to be able to use the internet following a bout with GBS, you should find good info about your condition here:

      You can get contact info for the Sacramento chapter here:

      Use the forums keyword search to find advice from others about pain and weakness. Here is just one of the many topic threads that could be helpful:

      Monitor your symptoms closely so that you can see if anything is getting better or worse. If you can, keep a daily chart for awhile to help track this.

      I wish you a quick recovery

    • GH
      August 2, 2015 at 1:36 am

      By “relapse” I mean loss of muscle strength after a period of seeming to recover. I thought I was recovering after IvIg treatments, but I then started to get weak again. Eventually I was reclassified from GBS to CIDP. I am mostly recovered now, with no signs of relapse, but still see a neurologist every six months for a checkup.

      There is a good chance you won’t get it again and will continue to improve, but you should be aware of your strength and watch for any signs of persistent loss of strength.

    • August 3, 2015 at 10:51 pm

      I have this too. I take gabapentin for nerve ending pain & tizanadine for spasms. I see my PCP and my neurologist released me back in May. If my feeling in my feet hasn’t returned by the end if this summer then I will schedule follow up with him. GBS is a learning experience for sure

    • July 25, 2017 at 12:16 pm

      Hi Lisa: I have had a similar experience as you. I was diagnosed with the flu after having it on a boat for a week. The same day I got hit hard with pain in my arms and weakness in my arms and legs. I bounced from one hospital to another as they didn’t quite know what to do with me after testing for stroke, and more common neurological disorders. They suggested I may have GBS, but never tested me. After I was released I went to the neurologist that worked on my neck issues in 2014. He gave me the EMG and put me back in the hospital for IVG treatment. I am slowly getting better, but I have nerve pains in rings around both arms. It will get better and then worsen. I also can stimulate tingling slight pain in my lower legs by thumping my upper legs. My neurologist says I am much better. I am much more mobile. However, I discussed another IV therapy with him last week as I am never sure if the increasing ring pain in my arms means I am becoming more sensitive to the damage or if I am having a relapse with more damage occurring. It was the pain in my arms that was the worst at outset. I am considering another treatment even though I am obviously progressing as far as arm and leg strength. Best wishes…..Dan

    • December 30, 2017 at 11:28 am

      I had it very bad in my back when I was in decline and then again when I started to improve, also had severe restlessness, could not sleep or get comfortable, too hot too cold, crazy.

    • January 2, 2018 at 1:29 am

      I also had a mild case but was not treated. I also have bouts where my legs are very weak but bounce back and then get weak again. My upper body is not affected nor do I have any pain, just cramping and I feel my leg muscles slightly spasm. My biggest issue isnt pain, its weakness. Its as if it can’t make up its mind!

    • January 2, 2018 at 1:31 am

      There is a lot of info out there about full blown GBS but very little on mild version or followup. I wasn’t given any follow instructions, either and still unsure of whats normal or not.