January 24, 2019 at 3:30 pm
Mariel, thank you for this post. It is fascinating! I’m anxious to give your suggestions a try and will report back.January 24, 2019 at 1:02 pm
Diagnosis of variants seems to be difficult, and I’m wondering if that might be the case with me. Not sure if it is worth investigating as there is little treatment anyway. I can live a semi-normal life – guess it is what it is. Thanks Erik for replying to my post. :o)January 24, 2019 at 12:01 pm
I was diagnosed with GBS in the Spring of 2015. The burning/tingling remains but is usually under control by using 600 mg Gabapentin daily. Fatigue remains but other than that no other problems. I broke my arm at Christmas and had surgery to insert a plate for the breakage. During recovery the GBS Monster has began to visit me again. I’ve had to double my dosage even while taking tramadol for pain. My worries of course is that I’ll have another onset of full blown GBS. Really difficult to find a doctor who has any answers. Any thoughts on this dilemma?July 2, 2016 at 10:54 am
Hi Jazz! Yes, I have found that your symptoms are very typical. I had GBS beginning 3/14/15: ICU for 2 1/2 weeks and rehab hospital for a month. Released with a walker on May 1, 2015. I still have the same symptoms you are struggling with. The best advise I can give is get accustomed to it and arrange your life accordingly. It does get better but rehabilitation takes time. Your nerves are healing and the healing takes time. A healthy lifestyle is important.
My main reason for replying is that I can attest to the fact that Gabapentin causes weight gain. I tried other medications with worse side effects, and currently I am on a form of Gabapentin that I take at night and it is time released. It took a bit to get used to it, but I think for me it is better than getting off the pain reliever all together. And, I have lost 6 pounds in 2 weeks so I am encouraged by that.
I have also looked into alternative treatments and have had great results with Bowen Work massage. I was skeptical, but it seems to help me. I also meditate daily.
Be patient as it takes time and everyone is different concerning their recovery time. It is hard for me to stop and take time to rest when I need it. I listen to my body now and rest when I need to.
In my case, they almost lost me because of my extreme blood pressure highs and lows. I’m pretty happy to be alive so when I get discouraged, I take a moment to count my blessings.
Hang in there!