Pain and more pain

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EricInLA

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I empathize with you Kim, though my own pain has not been at the level you describe. I wish you could find a solution. I am surprised and discouraged that you have pain even in the pool - I know you like being in the pool and so do I. I have had intermittent arm and leg pain -- I don't know if this is nerve pain or muscle pain or some other kind of pain -- all I know is that it usually happens after I've used those limbs for a little while (using a mouse for hours, or walking up the stairs a lot) which leads me to think this is pain from overcompensating for weak muscles. Frankly I think the conventional wisdom that this is not a painful disease is simply WRONG, and I wish this stereotype was removed from motor neuron disease discourse. I would imagine that painless journeys are few and far between.
 

Dee Dee 0617

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Spirit, make sure it has quinine in it. I drink it all day, it's my go to drink. I started about 2yrs ago. For me I felt relief with in the first couple of days. I have to tell you no one was more surprised then me. I was just figuring this came par for the course. So I was taken aback when I realized the cramps in my legs feet and toes stopped.
 

Kristina1

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I'm so sorry Kim. Sending hugs. I have so much pain due to spasticity. My legs are misshapen andd unable to completely straighten. It sounds like your pain is caused by different things so I have no advice but I sympathize.
 

Scotiaspirit

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DeeDee, I have tried small amounts. I have a cardiac issue that puts me at high risk of complications. I tried sipping on a few 300 ml cans of tonic water months ago, but did not get any relief, just a bump up in palpitations and heart flutters. I have history of T wave problems, Torsads.
 

lgelb

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For those whose heart issues make quinine/tonic water questionable, mustard and/or pickle juice work for some as a treatment rather than preventive. At first, it was thought to be a sodium boost but there may be more to it than that, i.e. stimulating sensory neurons. Anyway, worth a try.
 

KevinM

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Kim, if you can get your pain under control it sounds like your functionality is still pretty darn good, which is really something since you are more than five years into this. From what I’ve gathered from your posts, you still have decent function of your arms and legs, and no speaking, swallowing, or major breathing issues. Keep going, young lady!

And though I understand the neurological test involving balancing on one leg with your eyes closed, that is often tricky for perfectly healthy people. My wife has never been able to balance on one leg for more than a few seconds, even with her eyes open.
 

KimT

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Thanks, Kevin. My five-year diagnosis anniversary is this coming August 26th. Three days later, I'll turn 65.
 

Scotiaspirit

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I have tried pickle juice in the past, it did not make a difference, and I loved the taste especially of dill pickle juice. I have to take 60 ml of Potassium Chloride each day to keep it at normal levels. My cramping comes in waves. It will effect my arms, legs, abdominal muscles, under my chin, back of my neck simultaneously. My pain specialist started me on a long acting pain med patch today. If all fails, I may quantify danger of cardiac risks vs severe cramping and give the quinine a try.
 

Scotiaspirit

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Kim, keep fighting and your 5th anniversary is a milestone, keep having more anniversaries, and no further progression would be celebratory. 💛
 

old dog

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I take a collagen powder supplement that has helped with cramping and joint pain. I doubt that it would help with pain of the intensity you are describing, Kim. I am so sorry! You have done everything possible to control this damn disease. I hope you and your doctors find a solution soon.
 
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