Polyneuropathy friends, where are you?

I feel for you, my husband thinks I can do more, people don’t realize what we go through. I have back pain had a series of shots that helped a lot. I am now going to rehab to strengthen my core and legs. I do what I can getting stronger. I can’t take meds. I did some ivig a while ago. I got a red beagle 8 yrs old and we got a 5 month old beagle keeps me happy and busy. I have trouble with my hands but I want to try to quilt as you go with squares and put together. Never made one before. Its just getting started. I pray for you and talk to a doctor to get you some mental help to get you through this. God Bless

Hi narda I also had gbs in 2013 I was paralysed from the neck down I’m wheelchair bound, my husband divorced me, from moo. What country are you in .

Hi Moo,
I’m so sorry that you are still in a wheelchair. I’m in the USA! In Florida. What part of the world are you in? Does weather affect your GBS? I know this will sound whiny but when it gets cold here, 30-40 degrees everything hurts much worse. Does weather affect how you feel like that?

Hi Narda I live in England the Wirral is so cold I live by the see, and yes the cold makes it very very painful, iv got osteoarthritis as well, I have careers now, but I have 3 wonderful children one lives in New Zealand, the other 2 live by me and come and help he when they are off. I love my kids, it was really lovely to here from you, take care, I hope you don’t mind but can I ask how old you are.

I don’t mind telling people how old I am. I’m 65 and was 60 when I was stricken. I’m a mom of two grown daughters who birth live about 15 minutes from me. My younger daughter has my darling grandsons. They are 7 and 2 and are a real joy to me.

I also have a 25lb Beagle that I rescued. Do you have any pets?

Hi narda I’m 54. Was 50 in the September and diagnosed 31 October, was in its for 9 months, then on to rehab for twelve months. I have a golden retriever called Ben my son Michael looks after him now, as my ex didn’t want to no only imself.

Howdy Y’all from Houston, TX,
Blessing to you both for the severe impact gbs did to both of y’all! I have CIDP for a decade supposedly in remission. I never lost sensation in my feet and legs and
The nerve function is a lowest range of “normal”. My legs and feet hurt all the time. Sometimes worse than others, like barometric pressure changes from weather changes. I’m on lots of pain med stuff, but it’s never enough.

I’m from Fort Worth Texas area here. Just recently got diagnosed with CIDP at age 65. I have had 3 IVIG treatments so far and have shown a big improvement after a few days from my first infusion. I am still working a full time job but am struggling with fatigue. I don’t know if it is the disease or IVIG. It probably is both. It is Friday so i will rest all weekend and probably do very little. At least i don’t have severe pain and can sleep OK at night. I will continue to count my blessings since i know it could be so much worse.

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Congrats on feeling better with IVIG and it is a tough road to maintain a full time job with CIDp and IVIG. Resting on weekend is great and try to exercise some.

In my opinion both contribute to fatigue and I’d recommend you counter that with Red Bull energy drinks or 5 Hour Energy drinks or others like this to give you the two bursts of energy you need from 9-12 and then 1-5 or as needed. The costs for these add up every day so if they work buy in bulk with some variety. Amway also sells energy drinks that are healthier supposedly. I used to buy from a client but don’t anymore.

Counting blessings is a must! Focus on the joyful moments, record them and feed them back to yourself in an effort to see that this life with CIDP is still worth it! Love, Kindness, Peace and Perseverance to you and yours! God Bless,

William T. Scott


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