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Living with Polyneuropathy CIDP, GBS, & CMT

Attack of the worries?


#1

I have had GBS since 2007, I manage my pain with gabapentin, which doesn’t do it completely but helps, I was prescribed morphine but hated it so stopped. I had a long run up to my attack with various things happening. Over the last few weeks I have had an aggressive travelling limb pain, sometimes right leg/foot then left arm etc all limbs, also gnawing stomach ( which I had before first attack ) I have just started taking cbd oil, which was helping, but not tonight. I have never had pain quite so aggressively & never travelling. I also have permanent pain in the soles of my feet since this started. Does anyone else get this ? Or is this another attack starting or indeed taking place ? I would be really greatful for your thoughts.


#2

I don’t have a lot of experience, but I can tell you for myself, my feet are intensely painful. Sometimes it hurts simply to stand or walk. But truthfully since my diagnosis date is only a few months ago, I don’t have much to contribute.


#3

Linne,

I’m so sorry to hear about your pain. It sounds like yours is worse than mine but I understand having pain chronically. I have had GBS for about 13 months and my pain has been constant in my calves, ankles and feet. I have had it since the beginning. It is sometimes better and sometimes worse. I haven’t had any traveling pain though. One thing I have learned by being on this site and doing research is that everyone is different. I have never been on any medication for it besides over-the-counter stuff. No one has even suggested anything. My doctor just recently did a whole bunch of tests to make sure it wasn’t from an electrolyte abnomality or DVT’s. Everything was normal so good news but still no answer. I am thinking they are just going to say to is from the GBS and that’s how it is. Not a good answer for us who are dealing with the discomfort. So, long story short, I haven’t had exactly the same thing as you and not as bad, but I do understand what you are saying. Hopefully it is not another attack starting, I know that is fairly rare. Of course, so is GBS to begin with, right? I have the same worries (either of a relapse or the fact that things won’t get better). I know that keeping a positive attitude as much as possible helps tremendously but it is very hard at times. Hang in there! I just wanted you to know someone was thinking of you!!!


#4

I have had CIDP since 2015 every day is a battle. I feel your pain. CIDP only effects the arms and legs. I would encourage you to see a CIDP specialist. Look up CIDP on google and research your symptoms. Good luck and be strong. Prayers for you and all who suffer from neurological disorder. Jutty


#5

Thank you x


#6

Thank you so so much for your lovely reply, the pain has been incredible tonight again & although I’m worried your kind words have given me some comfort :innocent:


#7

Hang in there. I know exactly how you feel. I’ve gone through this many times and wish you a quick journey through the pain.


#8

I’ve had CIDP since 2010. I get IVIG 90 g Gamunex every 4 weeks. Whether or not your having a relapse is a question better answered by a neurologist…I only get the sharp shooting pains in my hands and feet.
However I came across what I call a Miracle supplement NaRALA R-LIPOIC ACID that someone had mentioned on this sight. I did the research and found some blind test studies had been done in Germany on CIDP, GBS, and I think Diabetic patients. The study was done with 1200 mg injection of R LIPOIC ACID. I don’t remember the numbers but it was good enough, I got on Amazon, and bought some 300 mg NaRALA R-LIPOIC ACID. I took 600 mg a day and after two weeks no more sharp pains in my hands and feet! That was nearly a year ago! No Gabapentin for me, thanks! IT HAS TO BE THE R NOT THE ALPHA LIPOIC ACID.
Also, I went to a new neurologist last week and she told me I should be getting my IVIG every 3 weeks from a study that was done 3-5 yrs ago! With that and some rehab there was a chance of some nerve regeneration!
Got my rehab eval yesterday and start that next week…I’m not expecting much, but I do have a new hope!
.God Speed…Never give up, Never give in!


#9

Hi SteveK,

Thanks for sharing what has been working for you. We wish you well on your recovery! It is important to talk to your neurologist about any supplements you are taking, as they will have the most up-to-date information. Keep us posted on your progress :slight_smile:

Meli


#10

Thank you I will try that. I don’t get IVIG, but am going to try & get to gp & hopefully neurologist referral, I was signed off from mine in 2011. Good luck with the rehab, when I had mine it did really help. Take good care. And no I will never give in !!


#11

That’s the beauty of a peer support community like Ben’s Friends: somehow, knowing you’re not alone helps make the difference between being able to handle what you’re going through, and feeling desperately isolated. We’re glad that you found us, Linne.

Seenie


#12

Kris66,
I’m so sorry for your chronic foot pain! I know how difficult this pain is to deal with and continue to live and love productively. Chronic foot pain can be very debilitating to living and finding any joy and happiness. It wears you down over time so you have to keep pumping your mind on positive, goal oriented, strategies to find, capture and promote and expand brief moments of happiness! Threads of golden moments that you can take and weave a happiness picture. Capturing moments of time where you are happy.


#13

Linne,
I’m new to Polyneurapathy but have been dealing with nerve pain for over a decade from spine fusions etc and I would suggest looking into Kratom. It’s a natural supplement similar to CBD but it works with the opioid receptors without some of the harsh side effects of the similar pharmaceutical remedies. It’s not perfect but better than the alternative imo. Hope this helps.


#14

Thanks for sharing the info and congrats on the pain relief. Did it take a full couple of weeks before you noticed the pain reduction?


#15

It should start working within hours for pain relief, from my experience. 2 or 3 tablets of 000 size do the trick on most days for me. Still dealing with symptoms but it helped manage most of the pain in the meantime. Hope this helps.