Pain and more pain

KimT

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On my last trip to ALS doctor in Jacksonville, he said my level and type of pain could possibly be nerve root related. I'm having more and more sensory issues and now my legs are tingling constantly and my back hurts badly. It even hurts when I'm in the pool doing gentle ROM. It hurts when I sit, when I walk, when I bend over, when I stand. He said, "if you live long enough with ALS, there are bound to be other issues you're going to deal with that may or may not be caused by the disease." That statement didn't even make sense but I just wanted to get out of there.

So he wants to do an MRI of my lumbar spine, even though the pain is mainly in my T-spine where I have curvature of the spine that has gotten worse since diagnosis. He said the contrast MRI would show damage to nerve roots.

To add insult to injury, I was diagnosed with IBS but at least I know what to do about that and have effective treatment methods to prevent another anal fissure.

The other finding is that my TSH has gone high again. Thank you Hashimoto's.

He also said he couldn't rule out another autoimmune disease since they run in my family and my ANA was up again.

It feels like my body is turning on me.

Nerve pain is horrible. It's unlike anything I've ever experienced.

I just look forward to bed each night and getting through the day.

I still go in the pool most days but it isn't like last year. Last year the pain nowhere near what it is now.
 

KarenNWendyn

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That sucks. I hope you find some measure of relief soon.
What about a c-spine MRI?
 

Samkl

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I’m so sorry, Kim
 

KimT

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I asked my GP for a c-spine order and she will give me one. I'll do it on a different date. I don't have an easy time with MRIs. I'd rather get a colonoscopy 😅 which I'm hoping to avoid.
 

KimT

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One think, only in my experience, after an ALS diagnosis many providers just dismiss other issues. That's why I left my primary care at Mayo Clinic. Nothing else mattered. When I had the UTI and the culture said blood and bacteria, she didn't even call me or let me know. My GYN prescribed an antibiotic only because I asked him and it worked.

I know the ALS neuro thinks my pain is not as bad as I'm saying. My local neuro specializes in pain management, I've known him for 20 years, both professionally and personally, and he can tell my pain level just by looking at me.
 

KevinM

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Kim, I’m so sorry. I’ve been surprised and annoyed that many neurologists and medical journal articles still often indicate that ALS isn’t usually painful, until perhaps the very late stages when immobility creates many pain related issues. That may hold true for many of us, but certainly not all.

Though I am still in the early stages (a little more than a year since confirmed diagnosis and a year and a half since symptom onset,) I am one of those who has experienced consistent joint and muscle pain over the past few months as my muscle strength declines and everything has to compensate. These are all still LMN impacts, as I don’t suffer from spasticity or other UMN features. But the constant ache and joint pain is very real.

I called Dr. Pulley to ask for something in addition to the Tylenol and THC/CBD oil I take, and he had the same comment: ALS usually isn’t painful. He did prescribe something stronger for use as needed (not a muscle relaxer, which I don’t tolerate well), which has been helpful, but of the many hundreds of patients he has seen over the years, a sizable number must have expressed having pain.

I believe that a lot has to do with how ALS specialists define pain. No, there isn’t actual “pain” associated with motor neuron death, which I think is how a lot of ALS docs look at it. And of course not every one experiences significant pain. But a lot do.

I am learning to mitigate my discomfort through meds and learning the limits of my exertion, but the type of nerve pain you are experiencing is a whole other level. I hope, hope, hope that something works. I know the oxy helps, but no one wants to stay in a funk all day by upping the dose dramatically.

My thoughts are with you, Kim. Kevin
 

KimT

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Kevin,

A younger lady from my home town has ALS. She is two years in and can still move all four limbs but is in a lot of pain.

I remember the exact time my pain started because Laurie suggested I get a lift chair and it helped me so much. It was January 2016, less than six months from my diagnosis.

I was still walking a mile a day. My grand nieces visited my brother and I was only a few steps away so they were at my condo every day for many hours. During this time I was wrapping it up at work and frantically trying to complete all the paper work. I know I was bending over a lot and then playing games and cards for hours. I think it started as a repetitive stress injury in my back but it didn't go away when I stopped. It got so bad, I lived in the lift chair and my bed for nearly a month, gaining a bunch of weight. Finally I went to my pain management neuro and he gave me some Oxy. I took a small dose twice a day for about three weeks and it broke the pain cycle.

The next time the pain came back was when I twisted my "good" ankle right before I moved and it was right when we had to evacuate for the hurricane in October 2016. I never thought I'd walk again and my hopping around threw out my back so double pain. That Thanksgiving and Christmas I couldn't do anything but eat. My sister-in-law brought me food and, after we ate, they left. What saved me is we had a warm Winter and I was able to go in the heated pool. Slowly, over the next 6 months my ankle got better and so did my back. That lasted nearly a year and now everything hurts, both joints and muscles but mainly my knees and back.
 

Scotiaspirit

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Kim, I suffer a lot of neuropathic pain that predates my ALS by twent years. At present, I am on a cocktail of gabapentin, lorazepam and hydromorphone. I been suffering horrible cramping in my feet, legs, mid torso, upper arms, and neck. I saw my Neuro today and had two nerve blocks in my occipital nerves on both sides of my neck. My mid abdomen is very swollen, and my Neuro believes it could be fluid accumulation. I am scheduled for xrays and ultrasound and may have to have yet another ct scan. My cramping has been brutal and even discussed the doctor assisted death option, as a last resort. I have pre existing cardiac issues (torsades t wave irregularities). Quinine is a drug she prescribes for cramping, but she is very hesitant to prescribe it to me doe to preexisting cardiac issues. Is anyone here getting Quinine for cramping. How does it work?
 

Dee Dee 0617

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Kim, I hardly have words, I am so sorry. I hope a doctor will do something.

Spirit, I drink soda water with quinine, it's stopped the cramps in my feet and legs. I've done nothing else, it really is the only thing I can attribute the relief to.
 

Scotiaspirit

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I have tried the soda tonic water and it has not helped yet, if you do not mind me asking, how much do you have to consume to get help for your cramps?
 

JimInVA

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I wake each morning due to cramping in my lower legs. Though I sleep very well through the night, I'd love to wake normally and not due to cramping.

Kim - I understand the nerve pain. My spine was 50% out of line with my sacrum and was beginning to squeeze the nerve roots. I'd be walking and suddenly find myself wanting to drop to the ground because of the severity of the pain. For over 20 years, I've been taking pain medication for back pain (I fell rock climbing in 1999 and broke my back)... and, for the most part, it kept it in check. The nerve pain was something quite beyond the residual back issues and prompted me to put life on hold (even as a caregiver for my wife) to alleviate that nerve pain. I've dealt well with pain meds for 20 years... but I was not ready for the quantity that the nerve pain would require just to take the severe edge off. I had surgery this last November where they did some carving of bones, added some titanium hardware and fused L4-L5-S1. Gloriously, the nerve pain and previous back pain is gone. Until I personally experienced that pain, I would never have been able to truly understand it from someone's description. I hope you are able to find its source and an acceptable solution to eliminate that pain.

My best...

Jim
 

Jhettinger

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As I lose muscle mass I have two distinct pain feelings, muscle pain due to over compensation, and nerve pain due absence of insulating muscle mass. I suffer for 5 years with muscle cramps, nothing works. my OT did a standing oblique left and right stretch, stopped my lower back spasms. I am losing about 25 pounds a year due to atrophy
 

KimT

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Jim, I knew you had successful surgery but had no idea how you got your original back pain. I'm so glad the surgery worked for you.

When you're in severe nerve pain, there is nothing you wouldn't do or risk to get rid of it. Honestly, if they found out that they could somehow get rid of my back pain, I'd risk surgery myself. I suspect I have a lot of muscle pain and it's hard for me and both neurologists to figure out what is causing what.

The thing that helped my cramps, which is an entirely different type of pain, was lots of magnesium, huge dose of CBD at bedtime and some Valium. My toes used to cramp closed and wake me up.
 

jethro

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did you notice difference in gait? pay attention. als attacks muscles without selection, so you dont notice that until certain point.
 

KimT

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It's harder for me to balance when I walk but I can still stand on toes and heels. My gait isn't as smooth as it once was and, if I walk too much, I start to limp a little. I can walk upstairs, with pain, and downstairs but downstairs is more of a challenge. I can still stand on one leg at a time but not with eyes closed and not for a long time. When I did yoga, I could balance on one leg for five minutes with my eyes closed.
 
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