Hi Claudette - thanks for the note. I am doing a "copy and past" in this return message so you can copy and paste it to the FORUM as it will be read by many more than me and by some who may have better answers.
Although I've had PPS symptoms for years, I'm newly diagnosed by a Doc in Portland OR. My symptoms just worsened to the point where I had to look into PPS as possibly being the reason for symptoms.
I have many questions-not sure how to go about this-so perhaps I'll just list some basic facts and folks can jump in with comments.
Polio at 2 yrs, I think. Not hospitalized, they were full, cared for at home, "had to learn to walk all over again" the only comment my Mom would make. Some of my earliest memories are of crying in my crib because my legs hurt. My left leg is shorter than the right, has been weaker ever since I can remember-it feels like I am "dragging" it-that it is not doing it's part. This is much worse, now.
I have restless legs and pain in my legs, spasms sometimes, fatigue, scoliosis and also bursitis in my weak hip-from PPS, the physical therapist told me. A hip replacement in the future, which was scary to hear. She said I was over-using the "IT band" to compensate for weak glutes and hamstrings, gave me exercises to do. I also do water aerobics in a warm pool 3 X a week; just started that.
I've seen some studies on acetyl-carnitine and C O Q 10-has anyone taken them? Also some mention of Substance P, that has something to do with sensitivity to pain-does anyone know more about that? I can get acupuncture regularly, which does help.
The Doc prescribed Gabapentin for pain; starting with 1 cap at night and working up to 300mg. caps 3 X day but had to stop after 1 week at night. It didn't seem to help my legs, although I could fall asleep. I feel too groggy in the am and immediately developed a twitch in my eyelid, which I am finding out is not uncommon.
Has anyone used calcium/magnesium at night to help with restless legs?
I just had an EMG and NCS last week, no results yet. X rays showed more scoliosis in lumbar region and thoracic area. Also osteoarthritis and osteoporosis, which I've known about for years.
Reading this forum I feel almost embarrassed to post what my issues are! I'm determined to make the best of my situation, however, am past the week of "attitude adjustment" I had to go through.
Some of it sounds familiar to me. The restless legs and watching muscles "jump" around uncontrollably. I was struck by polio in 1953 just before my 6th birthday and spent my birthday there and my Dad told me I was getting braces instead of the bicycle I had been promised. Of course he never meant they were my birthday present but that was not how my 6 year old brain interpreted it. I was a very angry little kid for quite a while until I was finally old enough to understand what had happened. It sounds like you were able to avoid that part of polio. I had to go back into short braces again about 10 years ago to keep me upright. Such as is progress. I hope you find information.