Overdoing it and spasticity ouch

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SpeedyMarie

Active member
Joined
May 24, 2019
Messages
38
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
Hey Everyone!

Over the past month or so it seems if I try to do things (walk with cane or walker) It’s been hot in Texas but just being active not running marathons or anything -as if I could lol. I’d try and fall. It seems I sprain muscles easier and have had some bad bouts of spasticity. One busy with visiting family and out in the heat. I woke up with searing pain in my hand that ended up going up across into my chest and down my other arm. I couldn’t sit up even scared me. Went to the ER vomited on the way. The ER doctor asked me why I was there I have ALS it’s spasticity. Made me feel awful but I was kinda out of it. I was more worried about electrolyte issues and I have a history of Prizemal’s Angina. Cramps in the cardiac arteries. I was out of it but ALS does not cause chest pain or EKG changes. Poo on her. The gave me methocarbamol IV and a script to take home with cardiology f/u. That settled. This time school clothes shopping a few stores and that night spasticity worsened again. It’s like muscles are hard and don’t function well along with pain for a bit. I’m UMN ALS and a slow progressor. I do have a chair but want to walk while I still can. Any tips with figuring out activity thresholds? Any tips? Thanks
 
Prior to knowing I had ALS, I was having a lot of cramps. I bought something called a BEMER and the cramps went away. 3 months later, I was told I may have ALS due to fascilulations. After more than 3 years, I never have had spasticity - because of the BEMER. It stimulates the blood in our body. Under normal conditions our blood heals us. Doctors have poo-pooed it but it worked for me. I personally think ALS medicine is a complete joke. Not one advancement has been made in ALS for 100 years. BEMER doesn't heal us; it makes my life better.
 
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We covered PEMF in this thread, making among other points, that it could be harmful to health and wallets, and I think the conclusions still hold. Not all PALS have fasciculations, not all PALS have cramps, not all PALS have spasticity, and these are three different things. Certainly the fact that you have had or have not had any of the three in some given time period, cannot be attributed to a particular device.

In the century you are dismissing, we have seen BiPAP and improved secretion management, feeding tubes, a lot of palliative drugs, and some that have slowed/hold promise for slowing progression. Then there are power wheelchairs, electric hospital beds, electric lifts, etc. Each of these innovations has unquestionably extended years of "quality life" for many, even with losses of mobility.

For that matter, since 1921, we have seen health insurance, with all its warts, become more widely available, including Medicare on diagnosis for most of our members, and more help worldwide, though never enough.

I'm very much aware that PALS are still dying. But the pace of progress toward the day when that is not always the case shouldn't pressure anyone into a "try anything" mentality when there are approaches with much more evidence of benefit behind them. And we are still able to try to pick up that pace, each of us, in our own ways.

Best,
Laurie
 
I’m glad you’ve found something that helps you. I agree with Laurie- A great amount of advancement has happened just not a cure, neuroscience has only really taken off in the past 20 years to treat previously untreatable things. I’m a genetic ALS patient so something in my blood tissues DNA/RNA caused it. Even that discovery is relatively new. Nothing out there like antibiotics for a infection for the umbrella of disease ALS is. I believe Hope for treatment is real to make it livable and not terminal which 100 years ago was nothing anyone could fathom. I’m going with massage and acupuncture to help personally.
 
How does acupuncture and massage help ?
 
Massage was critical for my husband as he had a lot of spasticity, muscle wasting and the result was freezing of the shoulder joints in particular. Daily massage and ROM gave a lot of pain relief and kept as much movement in the joints for as long as possible.

We tried acupuncture, attended about a dozen sessions and had zero result. Others have reported reduction in pain from this therapy.
 
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