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ALS Community Spotlight: “Does ALS hurt?”
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ALSSpotlight, or read the full series here.
https://alsnewstoday.com/spotlight/does-als-hurt-how-i-describe-common-symptoms/
Have you experienced any pain associated with your ALS? If so, when did it begin and how severe is it? What are you doing to relieve it?
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2 Replies
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I was diagnosed officially August 2022. (Unofficially in June on my birthday!!). Fist symptoms were slurred speech. Followed by cramping in my legs. That hurt. Gabbapenteen was prescribed but I didn’t like the side effects. I manage now by carful stretching and avoiding certain positions. I also take a drug to relax my prostate. I have no proof but it seems to reduce some muscle cramps.
So that pain is manageable by a little.
I do feel my speech is painful. It makes me very sad when I have to speak with someone that doesn’t know me. The looks I get when I speak… for this I got a card from ALS Organization that I hand to people that explains the the slurred speech asks that I am given time to answer. I do recommend this.
thank you for your time
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Hi Alan,
Try tonic water with quinine, it seems to help alleviate the pain from muscle cramps.
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Thanks RZ. I’ll try it. The real problem is that I don’t like gin…,
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