Back in February, I had a cyst on my chest and had it removed, only to result in an infection that followed the procedure. The following week I felt fatigue and numbness on my face and in my mouth. Then I started feeling dizziness and collapsed in my home. I was hospitalized, where the doctors told me I had low sodium and therefore low blood pressure. After days of testing, the doctors did a spinal tap and I was finally diagnosed with GBS. I was given IVIG treatments, and then discharged from the hospital in late March.
The difficulty used to be my low blood pressure. My case of GBS somehow comes along with trouble maintaining constant normal blood pressure. I was determined to improve it by exercising, but now it's difficult since my numbness was replaced with pain. It only started out as tingling in my fingers two months ago in April, then pain spread throughout my whole body. It is even worse than before, 10+ on the pain scale, and it spreads across my back, shoulders, abdomen, fingers, and legs. Any slight touch or rubbing of my shirt against my skin causes shocking pain.
Today my husband wrapped my upper body with the ace bandage so that my shirt doesn't rub against my back and shoulders. It helped throughout the day, but the pain came back worse than ever at night after taking the bandage off. My doctor prescribed 1600mg a day of gabapentin, but I only take 1200mg to minimize the long term negative effects it might have on my kidneys in the future. However, the pain does not go away. I am currently waiting for insurance to approve me for another treatment of IVIG. I really hope the request will go through.
This pain is indescribable. The closest thing is having sandpaper constantly digging in your back, or broken glass grinding into your skin. It's so debilitating, energy-draining, and puts serious limitations on my functionality, both emotional and physical. I don't know how much this pain will have to last. Will it ever get better? Has anyone else been through a similar experience?
Any response would help and be comforting. It would be nice to relate to someone who is going/has gone through this, or hear any advices or words of encouragement. Many thanks in advance.
I'm so sorry. This does sound a bit like the pain my husband is in. I'll see if I can get him to come back to this forum and chime in. Till then though, he switched to Lyrica (from Gabapentin) a few months ago and it seemed to help a bit more with pain. Although he is still in immense pain. Also, for what it's worth, the Mayo diagnosed his condition as Small Fiber Neuropathy. He did/does have GBS as well but my understanding is that the pain is what led them to the SFN diagnosis.
I am very sorry to hear you are going through this pain. I am the husband of S Anderson. While reading your description, my 1st thought was why isn’t your doctor prescribing Lidocaine cream or ointment? There are lidocaine patches, but I think the ointment would be a godsend for you.
How are you doing now, Nobuko?
Thinking of you.
S. Anderson said:
I am very sorry to hear you are going through this pain. I am the husband of S Anderson. While reading your description, my 1st thought was why isn't your doctor prescribing Lidocaine cream or ointment? There are lidocaine patches, but I think the ointment would be a godsend for you.
Oh my, Im so sorry. When I got released from the hospital back in December I was given 2 weeks worth of pain meds. When I ran out, my primary care dr refused to prescribe me pain meds. My GBS affected my legs and I was paralyzed from the waist down. The pain was beyond imaginable. It felt like being electrocuted non-stop. At one point, after coming home from one of multiple trips to the ER, at about 3 am the pain was so bad I started hallucinating. The GOOD news is, is that YES IT DOES GET BETTER. When the nerves are regenerating they literally feel “raw”. The pain is actually an indicator that things are getting better. I understand your pain. It’s literally indescribable. From my own personal experience, here is what got my pain under control: a pain management dr (oxycodone 10 mg 4 times a day), my Neurologist put me on Neurontin 1200 mg 4 times a day. The neuro dr told me the body can only absorb 1200 mg at a time. It took about a week of this regimen before things got manageable. I was almost suicidal because the pain was so bad. I highly believe the high dose of Neurontin was my life saver. I can definitely tell when I miss a dose or in the morning after a long sleep. It’s been a long struggle. Some more good news, and I’ve heard this from other people, recovery is really surprising and almost happens “overnight”. It’s not a full recovery but I went from being paralyzed from the waist down to walking within a week. Don’t push it. Your body will heal when it’s ready and it will let you know I hope this helps. Much love.