Are you in pain?

[Amanda]

When I first learned about ALS because a family member was diagnosed, I was told it was not physically painful. Of course it causes mental pain!  Are you in pain? Do you have sporadic ALS or genetically linked ALS? Limb onset of bulbar onset? What kind of pain is it (cramps, sharp pain, dull pain, where?) What to you do or take to address the physical pain? The mental pain?

[Bill]

I am limb onset and about 5 years from disease on set. I do have pain but possibly no more than my arthritis would give me. When I do have cramps in my legs they are painful but don’t last long. Aspirin or other over the counter pain relievers.

[Astrid]

I have had a lot of pain due to muscle weakness of my left shoulder. My arm is too heavy for my sholder muscles and because of lack of movement iT became more painfull. I have a good therapist who gives me advice about range of motions. And iT works for me.

[Susan guarcello]

In the past i got terrible craps everywhere. Lasting Avery long time lasting several minutes. I now take cannabis tincture. More CBD then THC. The cramps are less frequent,less painful and much shorter in duration.

[Anonymous]

Cramps or Charlie Horses in my legs were very bad. Started taking magnesium supplements and they let up some. Dr gave me Baclofen and they are a lot milder.

[Anonymous]

sleepless night

 

found this while reading

 

Prevalence of pain in amyotrophic lateral sclerosis: a systematic review and meta-analysis: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration: Vol 0, No 0 (tandfonline.com)

published 03 2021

 

[Author]

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