Hello to all you terrific researchers! I am so glad to have finally found a forum that has such pertinent and frequently updated info. I am very impressed to see such dedication and self-help shared with all of us who are seeking relief. Thank you for all your work.
I have idiopathic bilateral spinal accessory nerve palsy (the left side started in '07 and the right in '09). The best help I had for that pain was a myofascial release practitioner. She's amazing! It's just now, my trap muscles are paralyzed.
I began my journey with CIPN after my very first chemo treatment in March '08 (for non-hodgkins lymphoma, stage 4). Having no idea what was going on, and having to be taken to the dr. office in a wheelchair, I followed my dr.'s order and entered the hospital for about a week, where they simply increased IV morphine till they thought I was sufficiently drugged and and then sent me home. So, I spent all of my 5 months of chemo on high doses of morphine and then oxycodone. Since then I have been on 5-10 mg of oxy 3-4xdaily for the pain, with no hope of getting better. Since I refused the offer of Lyrica (can't tolerate neurontin, so what's the use?), I was asked to not come back to that dr.
I have been doing 45-60 minutes of yoga/pt exercises almost daily since the end of chemo, as it helped so much to move my body.
I found this site in early April, while I was desperate during a terribly long, terribly painful flare up. I immediately agreed with the ideas here and I began with B12 and have continued adding the suggested supplements one at a time (to make sure I tolerated them). I'm up to B12, AcetylLcarnitine, alpha lipoic, D3, fish oil and flax oil, calcium/magnesium, B complex. I will be adding CoQ10 and review for any other needs.
By last week I was quite surprised to find myself feeling amazingly better - it was like I had taken some super anti-depressant. Pain levels were not highly affected, but the ability to handle it was. My energy level was tremendous.
After that peak on Friday, Saturday afternoon I started going downhill. Today I am feeling pretty much like I felt before I started the supplement program.
Is this a normal reaction? I expected to maybe feel better after quite a while, not have such a positive response that quickly, so I am a little shaken. Will my body react in roller-coaster fashion? I am thinking that since I got there, I will get there again.
I am trying to figure out why the crash has happened.
Any ideas?