Pain management


Sep 6, 2023
Loved one DX
My pALS has a lot of pain, mainly in the legs and joints. Has anyone else experienced this or found something that helps? Her main complaint is spasticity and tightness, so they’ve recommended a baclofen pump. She doesn’t want that, but is very uncomfortable. This all started on her right side and her right foot is now really bothering her as well. She says it’s making it hard to stand to transfer. Any suggestions? She’s also taking buspar and Tylenol and occasional prednisone.
I take baclofen twice a day, the first time is 4.30am then I go back to sleep. The second time is 8.00pm then I go to sleep. This keeps the level of baclofen at an amount that is most beneficial to me during my awake hours. This system has kept me pain free for years.
A Baclofen pump seems to me something to try after everything else has been explored. It might be that no one singular med will help, but a combination. Spasticity can pull hips and spine out of whack, particularly if muscles are weak, and cause extra pain.
I relay the below not to talk about myself, but just to show what kind of options there may be.

I take a combo of Tizanidine and Gabapentin for spasticity. Fatigued muscles and joint pain seemed to be more affected by spasticity, so it was a loop that I needed to break- as spasticity caused muscle fatigue and pain, which triggered yet more spasticity. For arthritis and muscular pain, with sometimes awkward posture and joint immobility caused by spasticity, Celebrex. I have also been fortunate enough to receive some help from a pain doc who has done some nerve blocking/ablation in my lower spine to help with leg and hip pain.

I don't know what your PALS has tried, but it can sometimes take some time and effort on the part of the physician to find a combination of meds to help out. It might also be helpful to get a referral to a physiatrist or pain specialist, who would have many tools to help.
Do you provide passive range of motion exercises once if not multiple times a day? If I can stand multiple times a day, my calves are not so tight and I don’t get so stiff. But the stretching really helps me.