Pain with healing nerves?

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.

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:
http://www.gbs-cidp.org/get-support/resources/publications

You can get contact info for the Sacramento chapter here:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdf

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:
https://forum.gbs-cidp.org/topic/pain-and-weakness-together

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

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.

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

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

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.

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!

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.