Miserable nerve pain

Posted by marilyncarkner @marilyncarkner, Feb 13 5:22am

No sleep because of undiagnosed nerve pain. Feeling miserable .. I have PMR which just flared a 3 mg and my Rheumy bumped me up to 10mg. My thoughts are either internal shingles(had the vaccine) or Brachial pruritis ..Taking 6 Benadryl pills each day .. there is no rash
I spent 2 weeks down south with lots of sunshine could be a trigger. I also apply Zostrax
Any ideas or info on pain control or thoughts on the connection to PMR?

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If you have an autoimmune condition, sun can definitely be a trigger (it is for me). Hoping you can go down again on the prednisone. Be careful with that much Benadryl: it can have side effects like tremor and also overuse can cause withdrawal. If your issue is autoimmune and not allergy, Benadryl won't help anyway! Can you tell if the 10mg pred is helping with the picture clouded by all that Benadryl?

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@windyshores

If you have an autoimmune condition, sun can definitely be a trigger (it is for me). Hoping you can go down again on the prednisone. Be careful with that much Benadryl: it can have side effects like tremor and also overuse can cause withdrawal. If your issue is autoimmune and not allergy, Benadryl won't help anyway! Can you tell if the 10mg pred is helping with the picture clouded by all that Benadryl?

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Great answer… Last night did not sleep at all.Desperation set in and I took 3 benadryl pills spread over 8 hours.Also took some extra Tylenol.Now I know that that is not recommended😳 but as we speak I am Pain free. Good point about the the benadryl clouding the Prednisone.

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@marilyncarkner

Great answer… Last night did not sleep at all.Desperation set in and I took 3 benadryl pills spread over 8 hours.Also took some extra Tylenol.Now I know that that is not recommended😳 but as we speak I am Pain free. Good point about the the benadryl clouding the Prednisone.

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I used a lot of Benadryl and thought I had ALS- developed tremors and muscle twitching. If you can't sleep maybe your doc can prescribe something. You might be using Benadryl as a sleep aid rather than for allergy!

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@windyshores

I used a lot of Benadryl and thought I had ALS- developed tremors and muscle twitching. If you can't sleep maybe your doc can prescribe something. You might be using Benadryl as a sleep aid rather than for allergy!

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Good point…the things you will turn to in the middle of the night to get some sleep….

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I'm just guessing but since you mentioned a couple of weeks and fun in the sun down south that might be the reason for the new symptoms. There is an older discussion on the topic but it does have a lot of member experience within the last couple of years.

--- Brachioradial pruritus. (severe itching on forearms and neck, no rash).: https://connect.mayoclinic.org/discussion/brachioradial-pruritus-severe-itching-on-forearms-and-neck-no-rash/

It's the pits not being able to sleep so I'm hoping you find something that helps soon.

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Nerve pain is a special agony. I’m in a flare since early this month and I cry out in pain. I sympathize. I apply lidocaine cream. So far it did help. The spasms are out of control so I’m waiting for the neuro and NM doctor and pain management dr to help me. I hope whatever they decide finally treats what ails and not throw darts at it. The lyrica was doubled. Barely touches this pain close to surface of skin. So, it knocks me off my feet. This pain felt like lightning pain in the bottoms of feet. I’m not sure what could help. I’m supposed to follow an anti inflammatory diet. Trying to do what I can. I’m so dependent on my guy to do what I can’t and I hate that. I’m praying I get help so we can get back to living a little. Hope you find some relief and answers soon.

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My GP prescribed Gabapentin 300 mg b.i.d for carpal tunnel and bicep pain just before I was diagnosed with PMR, I still take it at night to help with existing bicep pain. No interactions with prednisone or methotrexate. I think it also helps calm me down and sleep better.

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@nemo1

Nerve pain is a special agony. I’m in a flare since early this month and I cry out in pain. I sympathize. I apply lidocaine cream. So far it did help. The spasms are out of control so I’m waiting for the neuro and NM doctor and pain management dr to help me. I hope whatever they decide finally treats what ails and not throw darts at it. The lyrica was doubled. Barely touches this pain close to surface of skin. So, it knocks me off my feet. This pain felt like lightning pain in the bottoms of feet. I’m not sure what could help. I’m supposed to follow an anti inflammatory diet. Trying to do what I can. I’m so dependent on my guy to do what I can’t and I hate that. I’m praying I get help so we can get back to living a little. Hope you find some relief and answers soon.

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I have MS and it's been a month since I tried Botox for spasticity/nerve pain in my right leg and it worked. I think Botox is only approved for spasticity but it helped the nerve pain too. My doctor only injected 100mg because I'm sensitive but I read online up to 400mg is acceptable. I hope this works for you.

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@nemo1

Nerve pain is a special agony. I’m in a flare since early this month and I cry out in pain. I sympathize. I apply lidocaine cream. So far it did help. The spasms are out of control so I’m waiting for the neuro and NM doctor and pain management dr to help me. I hope whatever they decide finally treats what ails and not throw darts at it. The lyrica was doubled. Barely touches this pain close to surface of skin. So, it knocks me off my feet. This pain felt like lightning pain in the bottoms of feet. I’m not sure what could help. I’m supposed to follow an anti inflammatory diet. Trying to do what I can. I’m so dependent on my guy to do what I can’t and I hate that. I’m praying I get help so we can get back to living a little. Hope you find some relief and answers soon.

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Have you tried 5% lidocaine patches available by prescription? I place them on the tops of my feet where the epidermis is thinner to promote absorption of the drug. The patches control my nerve pain better than gabapentin and I don't have as much systemic exposure to a powerful drug.

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Thank you for the great idea! My old neurologist wanted to do Botox on my migraines(in 2021). I told her I had bell palsy 2x (years ago/long time) and didn’t feel comfortable with Botox. I’m not sure. But if it were the only treatment that is “safe” enough for me I would try it. I’d need it in both feet/legs (back?) so thank you so much. When I see pain mgmt dr at the end of the month I’ll ask her about Botox. 🙂

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