Acute Disseminated Encephalomyelitis (ADEM) Support Group

Pain and restless legs

Hi,
I was diagnosed with ADEM in March of this year. I was temporarily paralyzed but eventually started to walk again. I can’t walk fast or run but I can walk now without assistance.
I have experienced quick jolts of pain in my legs throughout the day (the past 3 days). I hadn’t had this feeling before also, it seems that the restless leg feeling is getting worse. Has anyone else experienced this?

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I would encourage you to reach out to your doctor’s office. I do know that sometimes when nerves are recovering people can have jolts like you’re describing.

Sharon

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I was diagnosed with ADEM beginning January. I was also paralyzed. I have dealt with restless legs and spasms as well. I can tell you it gets better over time. I find that it is worse the more active I am I take baclofen 10mg at night which helps.

It has been 2 1/2 years since my complete paralysis from the neck down. I can walk really well but stairs are very hard for me. I have to wear running shoes almost all the time for support. I still have daily pain and a lot of leg spasms at night. I have to take Gabapentin (2-3 pills) every morning and night or it’s much worse. I have Klonipin for bad nights when my legs spasm a lot. CBD cream helps quite a bit with the pain. This has not changed at all in over 2 years.

hey, i was diagnosed early april 2017. i was completely paralyzed. I certainly couldn’t walk for 7 months. now 2.5 years later I can walk about 1 km with a cane and then I have to rest for a while.

my legs are pretty stiff so I take 3x 10 mg baclofen every day. cbd oil help with me. it takes away some pain/spasme and I notice that it gives me a little more energy!

I am still improving over Months with little steps.
They say that pain in the legs is sign of recovering of the nerves

Keep your head up. :sunglasses:

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5 posts were merged into an existing topic: Parents with kids who had ADEM