1. < Autoimmune Diseases

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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marilyncarkner | @marilyncarkner | Feb 18 6:56am

So sorry to hear this … it can become very discouraging for sure…hope things turn the corner for you and your husband

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pacer3702 | @pacer3702 | Feb 18 11:29am
In reply to @reets70 "I have had miserable buttock pain since my diagnosis of PMR one year ago. I found..." + (show)
@reets70

I have had miserable buttock pain since my diagnosis of PMR one year ago. I found an article on Periformis Syndrome that reflects exactly what this pain is like. I was told by Neurosurgeon that I have Spinal Stenosis and would need fusion surgery. I’m holding off on that since my husband is not well. So, nothing helps this pain so far. Two epidurals, PT, etc. and the only thing that alleviates the pain is complete rest. Not happening around here. Good luck with this!

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Have you tried wearing an SI joint belt? It often helps with piriformis syndrome. Did your PT check the alignment of your hips in terms of an apparent (not actual) difference between the lengths of your legs? That would be a typical PT approach for piriformis syndrome. I don't know if it is a safe maneuver if you also have spinal stenosis.

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1 reply
harley22 | @harley22 | Feb 18 11:44am
In reply to @nemo1 "Frankly, anything that helps the pins and needles will be tremendously helpful. Thank you so much!..." + (show)
@nemo1

Frankly, anything that helps the pins and needles will be tremendously helpful. Thank you so much! I have salon pas in the roll on. I use it everywhere but my feet. I was Leary of using the roll on on feet because of the other ingredient (don’t recall name at the moment). I get it like that too. It is impossible to do anything when the pain happens. Most times now when it’s “active” I howl in pain. It’s bad for that to happen. Usually I can rock and keep it together. I get these electric shock like jolts to the bottoms. It’s unbearable. Feels like a pic hammered into foot. Unreal. If they help like you say, it may very well be the game changer I need. Thanks so much.

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I too howl in pain, and it’s enough to send my dog out of the room. 😝
It’s not funny but if you see how annoyed my Morkie gets, you’d laugh.
It stops my misery for a second when she does that!
Hope the patches help your feet.

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1 reply
adohracapella | @adohracapella | Feb 18 12:28pm
In reply to @pitou "I’m currently in the process of trying to get 5% lidocaine patches, for nerve pain, in..." + (show)
@pitou

I’m currently in the process of trying to get 5% lidocaine patches, for nerve pain, in my feet. My insurance won’t allow me to get them. My dr is on 3rd appeal. I don’t get it, they don’t cost a fortune. Does anyone know what to do, if they deny the 3rd appeal?

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I have fibromyalgia and lumbar stenosis that causes peripheral neuropathy
I buy on Amazon “ THAT STUFF FOR PAIN”
It really helps to downgrade pain reception
It might work for you
I spray my hands then rub into area of pain
Good luck

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Nemo1 | @nemo1 | Feb 18 2:24pm
In reply to @harley22 "I too howl in pain, and it’s enough to send my dog out of the room...." + (show)
@harley22

I too howl in pain, and it’s enough to send my dog out of the room. 😝
It’s not funny but if you see how annoyed my Morkie gets, you’d laugh.
It stops my misery for a second when she does that!
Hope the patches help your feet.

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I’m going to try that and see how it works.I”m diabetic so that was a concern. Thanks so much for your humor and advice! Much appreciated! 💜

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aleciarickabaugh | @aleciarickabaugh | Feb 19 6:47am
In reply to @nemo1 "Frankly, anything that helps the pins and needles will be tremendously helpful. Thank you so much!..." + (show)
@nemo1

Frankly, anything that helps the pins and needles will be tremendously helpful. Thank you so much! I have salon pas in the roll on. I use it everywhere but my feet. I was Leary of using the roll on on feet because of the other ingredient (don’t recall name at the moment). I get it like that too. It is impossible to do anything when the pain happens. Most times now when it’s “active” I howl in pain. It’s bad for that to happen. Usually I can rock and keep it together. I get these electric shock like jolts to the bottoms. It’s unbearable. Feels like a pic hammered into foot. Unreal. If they help like you say, it may very well be the game changer I need. Thanks so much.

Jump to this post

I get that feeling also the pins and needles and random shocks and cramps. The only thing I found to help me is compression socks. I have different levels of compression that I wear but they help in a matter of minutes.

REPLY
1 reply
marilyncarkner | @marilyncarkner | Feb 19 11:40am

Mine is in my shoulders and upper arms …Doc put me on Pregabalin which helped butI feel so woozy

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1 reply
Nemo1 | @nemo1 | Feb 19 3:16pm
In reply to @aleciarickabaugh "I get that feeling also the pins and needles and random shocks and cramps. The only..." + (show)
@aleciarickabaugh

I get that feeling also the pins and needles and random shocks and cramps. The only thing I found to help me is compression socks. I have different levels of compression that I wear but they help in a matter of minutes.

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Thank you. I will have to try putting them on because the medicine isn’t really helping. If I can feel better in minutes I will have to grin and bear the pain of touch to the feet when I wear socks that don’t fit.

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sommerreign | @sommerreign | Feb 19 8:53pm
In reply to @pitou "I’m currently in the process of trying to get 5% lidocaine patches, for nerve pain, in..." + (show)
@pitou

I’m currently in the process of trying to get 5% lidocaine patches, for nerve pain, in my feet. My insurance won’t allow me to get them. My dr is on 3rd appeal. I don’t get it, they don’t cost a fortune. Does anyone know what to do, if they deny the 3rd appeal?

Jump to this post

I’ve used Voltarin gel & it used to be by RX only but now it’s OTC and I just use the size of a nickel amount on the nerve track & rub it in a few minutes.
Within 15-20 minutes, the burn is half of what it was.

REPLY
drorvick | @drorvick | Feb 20 5:03am
In reply to @marilyncarkner "Mine is in my shoulders and upper arms …Doc put me on Pregabalin which helped butI..." + (show)
@marilyncarkner

Mine is in my shoulders and upper arms …Doc put me on Pregabalin which helped butI feel so woozy

Jump to this post

Do your research well with this med. Ask your doctor if he would take this or want a family member on it. I am able to prove their are 100,000's of people trying desperately to get free of this drug. Read in the Facebook group Gabapentin and Pregablin Withdrawal group. Fifty thousand members or more now suffering. Most feel their lives are being destroyed. Fear of even getting off of one mg. Be careful. I know all too well. Check out all the lawsuits there are.

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