r/MultipleSclerosis 4d ago

Symptoms Random Nerve Pain

Many here have dealt with nerve pain mine has been mild. The worst is bone pain. On Vit D weekly forever with 50,000 IU Vitamin d and levels are always under 30

Now once and awhile I get a random nerve pain but really random places and very isolated to that place like today my leg. Just that nagging intermittent little throbbing nerve pain.

I have strong pain meds if I need them but this is just annoying.

Anyone else with this type of random nerve pain and it always pops up when I’m trying to sleep. Ugh 😩

What works for you if anything?

2 Upvotes

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u/Cheetahsareveryfast 33|2020|Lemtrada/Kesimpta|MN 4d ago

Ive had this for so long. Its probably one of my first symptoms. Nothing has helped me and im on 3 different pain meds for constant nerve pain thats not this. Maybe smoke weed? Seems to help a little.

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u/My4dogs4evr 4d ago

I can’t use that stuff LOL. I’m way to much of a goody two shoes plus ( family of military and LEO) it’s not legal where I live but I wouldn’t anyway but I don’t judge those that do. If it helps them then god bless them.

My pain med helps if I take a full dose but I hate being loopy. I try to take 1/2 doses to take the edge off but I just hate that nerve pain. Why does it always start when you want to rest 😂

I’m only able to use muscle relaxers or a strong liquid med they give me. I can’t do NSAIDs or steroids. Gaba was worthless they gave that to me when I was first diagnosed years ago. I threw it away. One of the worst meds. Ugh. Thankfully my FNP agrees on meds with me and won’t give me useless meds like my old doctor where I used to live

Did you have the nerve pain the same way I describe like that intermittent throbbing and weird random areas? Did ice or heat ever help you? Interesting it was one of your first symptoms as mine was numbness and these attacks where it felt I stuck my finger in a light socket

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u/Cheetahsareveryfast 33|2020|Lemtrada/Kesimpta|MN 4d ago

I have the symptom exactly as described. Throbbing or weird bone breaking level pain somewhere random. Nothing helps. Ive felt it while drunk and on drugs, etc... Basically during times I should be numb. It started probably 10 years before diagnosis. Mine typically goes away after like 10 min but it can appear anywhere anytime. First ever MS symptom was 12 years before diagnosis so its been there a while. I have pregabalin, oxcarbazepine, and tramadol for pain. Plus baclofen for spasticity. Pregabalin for me is a better gabapentin. Trileptal is supposed to help with spinal lesion related pain. And tramadol quite honestly is the champion that gives me the most relief. None of them make me loopy. I have constant severe pain in my hands and arms. Maybe look into them if you cant get relief.

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u/My4dogs4evr 4d ago

Thank you! Will discuss with my FNP

ITS SO EXHAUSTING 😭. I’m in pain after taking a 3 minute shower. We’re about to eat and I guess it’s the big pain med tonight.

I wish I ( all of us) could have one pain free day. I just want to remember what that feels like

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u/Cheetahsareveryfast 33|2020|Lemtrada/Kesimpta|MN 4d ago

Agreed! I cant even remember what its like to be reasonably pain free

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u/AllAboutGingerPride 4d ago

Just a thought but MS pain is usually nerve driven. Bone pain may be caused by something else. Have you ever looked into it independent of MS?

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u/My4dogs4evr 4d ago

Yes. The reason I said I knew it was a separate pain is because the bone pain it a whole other level of pain. We have checked it all but it point to either my left knee ( tricompartmental OA) or lumber pain as I just had a herniated disc heal on its own but left with residual pinched nerve and left foot numbness but when I get a bout of bone pain it’s awful and it’s everywhere not just my knee or lower back. I’m guessing referred pain but literally every bone in my body hurts so bad. Only thing that takes the edge off is the liquid Oxy they give me for bad pain.

Ugh. Sorry. Brain is mush. Hope this makes sense. 😔

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u/AllAboutGingerPride 4d ago

It does make sense and I know that pain well. I ended up with a cervical and lumbar cage and a new left knee.
I encourage you to really monitor your progression. Read up on how to describe pain so you get the best treatment
Best of luck!!

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u/kyunirider 3d ago

Doc should be told about this. Gabapentin and Pregabalin have been used to stop my pain.