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Severe pain

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Goldie1027

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Hello. I wondered how many of you have pain and if so, what makes it better. I have like chalie horses in my arms. It feels like someone has an ice pic to my shoulder and my fingers hurt and are stuck like I am holding a ball. That;s just my arm. If I do exercises it's hit or miss. sometimes it works.
I can take pain killers like oxycodone, but I still have the pain.
 

KarenNWendyn

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I get Charlie horse cramps all the time in legs, hands, and chest wall muscles. Mostly they are brief and respond to stretching, but my legs are achy early in the AM when I’m in bed. I use CBD oil daily which I think helps. My neurologist recommended Magnesium Oxide 400 mg at bedtime and Vitamin B6 50 mg daily. Some people also use Mexilitine for cramps. I recommend against opioids like Oxycodone for daily pain or cramps unless you’re in a hospice situation, mainly due to problems with respiratory and bowel suppression and drug tolerance.

The problem with the fingers sticking could improve with an anti spasm drug like Baclofen or Tizanidine plus hand splints at night. Sounds like ROM/ stretching might help your shoulders.
 

chally

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Tumuric hashelped me right from the start, 500 mg daily.
When I ran tri athletes races I always carried small packet of muster and when cramps came on one squirt and in min it’s was gone.

Worth a try.
 

lgelb

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Welcome, Goldie! Feel free to start a thread to introduce yourself, or tell us more about yourself in this one. Massage and someone doing passive range of motion exercises is invaluable. A good PT can train whoever's around to do them, under your home health benefit, or some MTs also make house calls, which you may or may not get partial reimbursement for depending on whether your plan has a massage benefit. Make sure your arms/elbows are supported wherever you sit.

I also recommend a low voltage heated mattress pad. And Biofreeze and similar compounds help some people if you can tolerate the smell, but of course you can't mix those with heat.
 

tripete

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pain is just something we have to work through. it is now our normal.
 

KarenNWendyn

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If the above suggestions (especially the occupational and physical therapy interventions) fail to relieve pain, consider a trial of either Gabapentin or Cymbalta. These are non-narcotic prescription meds which are useful for some people in chronic pain management. Cymbalta (Duloxetine) also works as an antidepressant. For intense pain localized over one specific region (like a shoulder, hip, or spot on the back), Lidocaine patches may help.
 

KimT

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I take a lot of magnesium since I'm on Remeron, an antidepressant that can cause constipation. I take 1,200 mg a day. I also take CBD Oil, a small amount of medical cannabis, tylenol (no more than 2 a day), tumeric, and an occasional Advil. When it gets bad I up my dose of Valium and add Gabapentin.

I have all kinds of pain. I have moderate to severe joint pain in every joint. MRIs showed torn rotator cuffs on both shoulders and tendonitis in both ankles. In fact, long before my dx I had tendonitis, no doubt from sports, falls, and car accidents.

My whole body hurts. When it gets where I can't walk, I take an Oxy to break the pain cycle and it seems to work.

I wish someone would invent a toe splint that actually worked. I've spent several hundred dollars on all kinds of splints for my curled toes and nothing helps. When they cramp, it's agony.

My doctor told me to go to a podiatrist to see if she/he knew of something that would help.
 

lgelb

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Kim, have you tried pressure boots with or without a piece of plastic used as a "splint" on the outside for more structure? Keeping the arch elongated can help prevent the toe curling.
 

affected

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Kim the toes curl because of shortening of the wasting muscles in the lower legs, so stretching here and the arch as suggested may have better impact than working on the toes which are the result rather than the cause.
 

KimT

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I can still walk pretty fast in my running shoes. I can still raise up on my toes, walk on them and even walk on my heels. I can see the atrophy in both calves and I work on them as best I can.

After my sprained "good" ankle I couldn't walk at all for a few months and I think that made the atrophy progress in my calves.

The reason I like my running sneakers is because they are so well padded. I have a very high arch and naturally bony feet, even before ALS. My feet hurt less when I have the sneakers on so I pretty much wear them all the time. I have blisters on the top of my curled toes from staying in the sneakers all day. Not bad ones, just the beginning. They are bruised.

I did find stretching in the hot tub helped more than trying to do it myself on the bed.

Thanks for the suggestion. I'll keep working on the calves.
 

KW1234

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I found f oot splints on Amazon that hold your toes upright and keep your toes from curling. I also hhad hand s plints made to kee ppl my fingers straight. I have pain in my shoulderthat I think comes from my tricep weakening more rapidly than the bicep. I use a concentrated CBD topic and Morphine at night.
 

Kristina1

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Hi Goldie, I get a lot of pain from these types of 'charlie horse' type cramps. I get them in thumbs, forearms, upper arms, upper legs, abs, tongue, and even facial muscles! I take gabapentin which seems to help a little. I have a splint for my finger curling that I wear at night.

I wouldn't recommend oxycodone for this-- the cramping is acute pain that dissipates when the cramp releases. Oxy won't really help with that. Neither will ibuprofen or any other painkiller unfortunately.
 
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