Question about long-term increasing nerve pain
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June 22, 2016 at 6:40 pm
I was diagnosed with GBS in early 2000. I was in ICU for a month, the hospital for three, and rehab for an additional four. When my insurance ran out, my last purchase was a fun little cherry red wheelchair with metal flake. Shortly after the order, my legs came back and I’ve been mobile ever since. By all outward appearances I’m fine but I have ongoing pain. Over the last couple of years the nerve damage has worsened. The burning is every moment of every day and its really wearing me out.
I currently take 600mgs of Neurotin 5x daily (the 5th is really in case I need it late at night). Because of the pain, I usually wake up at 3AM every night for about an hour. I’ve tried slower release Gabapentin products like Gralise, but I metabolism them too quickly and they keep me up at night. I’ve also tried antidepressants and opiates (not recommending).
My wife treats the pain like its in my head or something I just need to get over – I don’t complain. Lately though, I feel that it’s weighing me down. I almost feel like I have PTSD in conjunction with the increased burning and undulating in my arms, lower back and legs. Because the burning has increased, I feel like I’m not controlling it adequately (though I do have a new Neurologist). I felt like I was alone in this until I remembered a forum I belonged to several years ago so I signed up here.
At this point I can function fine but the emotional drain is silently beating me up. I’m wondering if anyone else is experiencing the same increasing pain and what you’re doing to manage.
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June 22, 2016 at 6:57 pm
You may find some helpful info about pain options in the following thread:
https://forum.gbs-cidp.org/topic/pain-and-weakness-together -
June 24, 2016 at 6:16 am
Well Im in your shoes my pain is constant and increasing my feet is on flame and my hands are getting worse my doc say that i can be glad to stay on my feet. I stoped taking neorotin few years ago for it do d not go well into my head it made my drousy some day i could not drive beacouse of it. I try too exercise as much as i can and try too rest in the middle of the day. What i hate most is to sit to long with my feet down then my burning get worse. But with constant moving around it is my realese. I think it is no help in medicine with this pain the only one that has help me is sleepingpills in the evening i could not sleep for my feet was on fire after the day. Geting sleep is the best realese i have after many years of waken up every night many times.you are not alone in this and people think that it is all in our head but it is not. Xoxoxo Helga
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June 27, 2016 at 2:34 pm
Consider me in the same shoes too — if only I could stand to wear them. I was diagnosed around 3 years ago with CIPD. Before that, it was herniated disks, sciatica, and fibromyalgia, by the same neurologist, who I trusted with my life. She eventually talked me into having a spinal tap — a horrorshow in itself — which confirmed her CIDP diagnosis. I did 2 trials of IVIG before having to stop due to severe allergic reaction (my skin started cracking and peeling). My pain is totally out of control now. I had an EMG recently, where she told me it was barely there in my legs, despite widespread pain. At my last visit, I nearly broke down in her office when she told me it wasn’t the CIDP — it was a thyroid/muscle problem and as far as she’s concerned “she’s good on her end”. I’m at my wits end. The pain is really unbearable, and after 18 years sober I’m getting bad thoughts. I feel like I have to get some relief or go insane. No one wants to hear me complain anymore and the depression is killing me. I guess I need to get a new doctor, but can’t bear the idea. I’m sorry to go on so long. If anyone has come up with anything that helps, I appreciate any ideas. Again, sorry to write so much and complain.
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June 28, 2016 at 12:29 pm
Im sorry to hear about this “faith2266” you as so many of us is on the dark site, and having CIPD must be horrible, I have enough with my GBS aftermath 🙂 and I understand your depression, but the bottom of a bottle don’t do anything for you just get you under the bottle. Stay strong and take one day at the time, 🙂
xoxoxo Helga from Iceland
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