Re: Stinging pain

[Guest guest]

Barb,

This is the neuropathy that likes feet and hands. Actually, the primary spots for sarcoid-induced arthritis is the hands and feet, ankles and wrists. So the fact that this is a "problem spot" is unfortunately, 'normal.'

Bugger that normal has to hurt like this.

One of the exercises that I was taught when I went thru pulmonary rehab is to do "circles" with our thumbs. This keeps that muscle and ligaments from the hands more relaxed and stretched.

It works. And my hands are better. Prior to the Remicade, my thumbs had actually contracted and were bent flat against the palm of my hands. I had worked for a physical therapist for several years and his speciality was hand and finger reconstruction for amputees. He was insistent that they massage that big tendon that goes from the thumb across the palm. For comfort-- I had been massaging that for more than a year, and I gotta tell ya, when I got the first infusion (it was during a clinical trial for Remicade and sarc)- I left the hospital, got to the airport, boarded the plane and was able to straighten out my thumbs for the first time in over a year!

That, along with the "sucking on a corroided lead pipe taste" was my clue that I'd gotten the medication and not a placebo.

When I wake up in the middle of the night, and my hands and spine and legs are in spasm -- I drink a cup of water with MSM powder, and within 10 minutes I'm able to go back to sleep.

I'm a firm believer in trying the natural fixes before I go back to pain meds-- I am a recovered painpill addict- having gotten addicted (dependent) on meds for severe back injuries. It's been 16 years now, and 2 yrs ago, I had to resort to Oramorph for pain control.

I'm now not needing any pain meds, and have found that for me, it was a high blood sugar neuropathy along with sarcoidosis neuropathy, and the chronic dehydration.

Taking care of these issues, along with the use of Methotrexate, Plaquenil and Remicade have made such a huge difference. I still have no energy, and have to be extra careful with infections-- but I'm much more mobile than I was.

Take care,

Tracie

NS Co-owner/moderator