-
Do you struggle with PD-related pain? If so, how do you manage it?
My dad has been struggling with both PD-related and unrelated pain for many years. And we haven’t yet found a way to alleviate it. Do you struggle with pain? If so, how do you manage it?
-
4 Replies
-
A year ago I pinched the sciatic nerve and had surgery to remove part of a ruptured disc. Since that time the PD decline has accelerated rapidly. My spine, shoulders and hands are full of arthritis. While the pain from arthritis is tolerable I still have a lot of lumbar pain that the surgery was supposed to alleviate. Anyplace that hurts hurts more when the meds are off.
Because I am on Azilect I cannot take opioids, none of which I could never tolerate anyway. I seem to spend a lot of time at the pain clinic getting epidurals and other injections to tame the pain. Also lots of physical therapy to keep things moving. When I get up in the morning all the muscles in the lumbar region tense up and spasm. I use a TENS device in the morning on my lumbar region. That seems to help things relax back there.
-
I haven’t explored my joint/muscle pain but I too would like answers. I work out at a gym every other day and until about 3 months ago was doing 30 minute on a treadmill ut I develped hip pain (right side) and noticed that it tended to be tendon or muscle pain not joint. I had PT at the local hospital but it did nothing. The pain keeps me awake at night as I keep looking for a comfortable sleeping position. I’m working my way back on the treadmill and am working up to 3.5mph. at least the pain is not getting worse. Your advice could be helpful. I was diagnosed in 2009 and have been on 25/100 levodopa most all that time. I am 81 years old and sarcopenia (age related muscle deterioration). I take 1gm creatine and HMB on workout days.
-
early in my journey, i simply could not get comfortable in bed. i bought a new tempurpedic bed and i felt stuck in it. after reading a post on how good they were for PWP, i bought a $10k sleep number mattress with bells and whistles. soon, i came to hate it t0o (i call it the air burrito).
then, like goldilocks, i slept one night on an inexpensive mattress (that came from Ikea rolled up) in the spare room and love it! i made the new bed even better by sleeping on satin sheets so i can slide around. over the years in retrospect, i now realize the problem was not the beds, but muscle pain from stiffness and being stuck in one position all night.
on another note, i suffer from hip pain that keeps me awake at night. multiple drs, physical therapy, xray, and mri did not help. my own conclusion, when the meds are off my sciatic nerve is irritated by a stiff piriformis muscle (or vice versa). when it hurts, i sleep on the other side with a pillow between my legs. no cure, but it helps.
-
Similar to @Richard Cooling, I have lower back pain, but not until I get up out of bed. In bed I am perfectly comfortable lying on my back or either side, but when the bladder says it’s time to get up, I have about 3 minutes to get out of bed and shuffle to the bathroom, about a 50 foot walk. But, wait, the meds are off, everything works slowly and nothing is coordinated. I struggle to a sitting position and the back seizes up. Everything in the L3-L4 region tenses up and pain shoots from 0 to 7 in an instant. But at least I am sitting; that’s halfway to standing, I tell myself. Then I sit there, mentally rehearsing how to stand. I have to use my arms a lot because the legs are not fully engaged and I move like a snail. Left arm on the bed, right arm on the nightstand, Ii push up and hope the legs engage and do their job. It takes about 3 tries, then I am off to the races to the toilet, about 100 Parky shuffles (smaller than baby steps) and I reach it in the nick of time. I used to sit and pee, now I stand because I am not sure I can get myself up again, in spite of having grab bars.
On the way back to bed the muscles are starting to unclench. If it is near 6AM I take my pills, either way I shuffle a few more minutes to work out more of the spasms in my back. Then, if the sun is up, so am I, otherwise I try to get another hour or two of sleep.
When I get up for the day I put on the TENS device for half an hour and wait for the last of the muscles to finally relax. I have a little back pain the rest of the day, but it is down at the 1 or 2 level unless I really aggravate it. Once the carbidopa/levodopa kicks in there are no more spasms and just a little background pain.
Log in to reply.