Pain in ALS

[Idaho2790]

When we are in California we try to make an ALS therapy group that meets once a month. We find that the open discussions are very helpful. Today we had several caregivers as well as the PAls. Discussion came up regarding pain associated with ALS and there was no one there that had pain of any sort. Even caregivers whose PALS weren’t in attendance said there was no pain. I have always been pain tolerant but for the past six months, I take as much as 250mg of tramadol and 1 ml of THC marijuana just to keep the pain from the spasm in my legs. When I could still walk easily, a walk for ten minutes would help and I could get by with 100 mg of tramadol. Why is there such a difference? Any suggestions would be much appreciated.

Kathleen

 

[Nikki J]

Everyone is different in their experience. As a disease that is a motor neuron issue rather than sensory no pain is not unusual especially early. I have no pain unless you count muscle cramps.

But weakening muscles can mean less support for your body and that can cause pain as can decreased immobility. I think it can also unmask some non ALS orthopedic or other issues.

It matters too your mix of upper and lower motor disease and it sounds like you are having your issues from spasticity which is an upper motor neuron issue. Some of us don’t experience much of that

Sorry you are in pain. Not fair. You are not alone though. Many here have pain issues too

 

[KimT]

I have lower motor neuron dominant ALS. Good range of motion, even in the areas that were sprained from falls. I also have widespread muscle and joint pain. Been round and round with ALS specialist, ortho, rheumy, and they all think the pain is from different sources.

IMO I have some kind of centralized pain disorder and maybe even fibromyalgia because my level of pain after movement is bad. Even gentle floating in the pool can cause pain. All my x-rays and MRIs were excellent. One doctor said I had the spine of a 30 year old, same with knees.

I started having pain about six months after my diagnoses (not counting cramps). Also, my tolerance for pain went way down. I have to numb my gums just to have a cleaning. Yesterday I cleaned my closet and collected a bag of donations. It took about 90 minutes. It felt like I had gone a round in the ring with a heavyweight. I hurt all over. Go figure.

I talk to other PALS and they have no pain, even when bedridden.

 

[Idaho2790]

I remember reading that you had muscle cramps as well. I have had restless leg syndrome for several years. I tried taking two drugs specifically for that. One caused vomiting two nights in a row (ropinerol) and the other caused me to feel wired. Since the diagnosis, which was Bulbar to start, I’ve had cramps that cause my legs to spasm. One leg comes almost to my chest and I have a time getting it back down. Do you think it might be something other than ALS causing it? I haven’t searched that possibility

 

[Kristina1]

I have pain as well. I get horrible muscle cramps (basically 'charlie horse' cramps all over my body, including my tongue!). And I get painful spasticity, where my muscles are rigid, though medication helps. My fingers hurt 24/7 due to contracture. And I constantly battle back and ab pain because of strain from poor core strength. You are not alone!

 

[nona]

I did not have pain early on except for occasional cramping in my neck and forearms that was resolved by Mexilitene. As my muscles have weakened, however, I experience pain at night in my hips and shoulders that usually disappears by mid morning. I think "no pain" is a myth. It all depends on your progression and background. As a runner, I had hip pain even well before diagnosis, and it doesn't help to be seated and immobile all day.

 

[affected]

My Chris was UMN dominant and had a lot of spasticity. He was also rapid progression so he lost muscle mass fast and the joints were very tight, even with a lot of ROM and massage. This caused his high level of pain - the tension in the wasting muscles and resulting frozen joints was cruel.

 

[notBrad]

I had some pain in my left hip for a while. Felt like a pinched nerve, but I still carry fragments of a bullet in there. Which may explain why I had minimum pain in the right hip. But I come from a family with exceptional pain tolerance.

 

[KarenNWendyn]

Brad, you’re one tough dude!

 

[nona]

I had some pain in my left hip for a while. Felt like a pinched nerve, but I still carry fragments of a bullet in there. Which may explain why I had minimum pain in the right hip. But I come from a family with exceptional pain tolerance.

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