Couple of suggestions

Anonymous
October 26, 2008 at 6:14 pm

Hi, Tina, welcome back. yes the name did change this year to gbs_cidp.org to better reflect the many CIDPers, but the old name should have directed you to the new name.

One suggestion, if you do PT again, ask them to make a priority to get a program that you can continue at home. It is a lot of hard work to get better with PT just to not be able to keep up the progress after stopping.
For neuropathic pain which is often felt as burning or aching in the feet and hands or tingling or pressure or excess sensitivity at the end of ones limbs more than in the middle of one’s body, gabapentin (Neurontin), Lyrica, or sometimes Cymbalta help a lot whereas traditional pain medications do not help as much. This is because the nerve pathways are damaged and misregulated after GBS/CIDP. These type of medicines help the damaged nerves act more appropriately.

Cymbalta is officially an antidepressant, but it also works for diabetic neuropathy. I think it is not officially “indicated” for back pain, but it helps many people with this and trials to confirm its benefit in groups of people with back pain are happening.

Lots of people are vitamin D deficient because of living in “northern” areas and getting less sun and no drinking as much milk (Vitamin D fortified) as in the past. The interesting thing is that there is some research into the role of vitamin D in autoimmune diseases, particularly MS. I take extra vitamin D daily although I have never been tested for deficiency, but I figure it will not likely hurt to take a daily amount, that it might possibly help the immune system, and that it is likely to help protect my bones if I fall from the effects of the neuropathy. You are supposed to get enough vitamin D made by your own body if you are in the sun for about 15 minutes a day. It is harder for those of us with difficulty walking to get to sunny places outside to sit or walk. Maybe I should make that part of my PT routine???

You do not say what your thyroid concern is, but one concern is autoimmune thyroid disease, something that a number of people on this site suffer from as well as having had the other autoimmune disease of GBS or CIDP.

Good luck to you and I hope that you find a better management plan for pain. Have you noticed the GBS-CIDP foundation biannual conference near Chicago in a couple weeks? Information is on the home page.

Oh, and happy birthday.
WithHope for a cure of these diseases.