1. < Chronic Pain

Notalgia Paresthetica help

Posted by lgerkin @lgerkin, Mar 19, 2020

Hi - has anyone been diagnosed with Notalgia Paresthetica? I've had the itch that comes with this condition for years, but it has worsened over the last year and is now very painful. The center of the pain is under my left shoulder blade. I'm also experiencing numbness in my left arm. I've had x-rays and MRIs but no doctor has been able to address it - or even acknowledge that it's an issue. I've been in physical therapy for months and tried acupuncture but neither have helped, although my posture has improved greatly. Any feedback is appreciated!

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 27, 2022
In reply to @suejohnson1 "My dermatologist suggested ice packs and a cream called Sarna. The Sarna only helps for a..." + (show)
@suejohnson1

My dermatologist suggested ice packs and a cream called Sarna. The Sarna only helps for a few minutes. The ice packs help but it is hard to get them tight against my back. The best one was REVIX Large Ice Pack for Shoulder and Back Injuries but I still needed to use 4" velcro to make tighter. All the plain ice packs have to be left out of the freezer for 20 minutes to thaw enough to be usable - they are rock hard straight out of the freezer. If anyone has found one that doesn't do this, I would love to know.

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Welcome Sue @suejohnson1, I bought several sizes of FlexiKold Gel Ice Packs that are flexible when they are frozen. They worked great for my knee replacment recovery. I've seen several similar ones on Amazon with straps for the shoulder or back. Here's the one I have - https://www.amazon.com/dp/B076PG75QJ.

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1 reply
suejohnson1 | @suejohnson1 | Aug 27, 2022
In reply to @johnbishop "Welcome Sue @suejohnson1, I bought several sizes of FlexiKold Gel Ice Packs that are flexible when..." + (show)
@johnbishop

Welcome Sue @suejohnson1, I bought several sizes of FlexiKold Gel Ice Packs that are flexible when they are frozen. They worked great for my knee replacment recovery. I've seen several similar ones on Amazon with straps for the shoulder or back. Here's the one I have - https://www.amazon.com/dp/B076PG75QJ.

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Thank you. Just what I wanted. I will order one. A question. I looked at the one with a strap and it indicated the strap which was velcro could be attached to the back of the ice pad. However that one had the strap attached to the short side and I would want it attached to the long side. Have you tried just taking a velcro strap to yours and using it this way?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 27, 2022
In reply to @suejohnson1 "Thank you. Just what I wanted. I will order one. A question. I looked at the..." + (show)
@suejohnson1

Thank you. Just what I wanted. I will order one. A question. I looked at the one with a strap and it indicated the strap which was velcro could be attached to the back of the ice pad. However that one had the strap attached to the short side and I would want it attached to the long side. Have you tried just taking a velcro strap to yours and using it this way?

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They do sell ones that come with straps to hold them on but they are not attached.
https://www.amazon.com/FlexiKold-Standard-Half-Straps-Packs/dp/B09HSPMKC1/ref=sr_1_6

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1 reply
oldwoman90 | @oldwoman90 | Sep 28, 2022
In reply to @amandajro "Hello @erie and welcome to Mayo Clinic Connect. I was not able to find another member..." + (show)
@amandajro

Hello @erie and welcome to Mayo Clinic Connect. I was not able to find another member with that experience, however, thought I would share this article that I found.

- Serratus muscle stimulation effectively treats notalgia paresthetica caused by long thoracic nerve dysfunction: a case series:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758879/
Has your doctor shared this as an option with you?

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so far, all ointments ant oral meds have not helped.

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repairgirl | @repairgirl | Nov 10, 2022
In reply to @lgerkin "Thanks so much! I believe the cause is a compressed nerve, since I'm also experiencing some..." + (show)
@lgerkin

Thanks so much! I believe the cause is a compressed nerve, since I'm also experiencing some numbness in my left arm. There could also be some mayofascial pain going on as I've carried heavy totes on my left shoulder for many years and the repetitive strain is bound to be a factor. The itching that comes with notalgia paresthetica has been off and on for over 20 years, and it's still there, but the pain is front and center for the last year. An Xray showed mild DJD and the MRI showed DJD and some fairly common benign tumors called hemangiomas, but my doctor didn't think they were the cause of the pain. I'm also having pain in my sit bone/ischial tuberosity and have been working with a pelvic floor specialist but no relief yet. I'm fine with standing in terms of back and pelvic pain but sitting has become very painful. Probably TMI here, but just wanted to put it out there in case it's helpful:) Thanks again!

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Hi lgerkin, I am so happy that I ran across your post. I have been having problems for over 3 years. My oncologist recommended me to see a dermatologist. I suffer from severe itching and pain on my ride side by my shoulder. I just came down with a "lesion" of some sorts and my PCP told me to see a dermatologist. Turns out all the pain and itching is caused by this condition which I never heard of before. I do suffer also with the sit bone pain for 3 years too but was to embarrassed to tell anyone. After reading your comment it all makes sense to me now. The doctor wants me to start Gabapentin which I know I had a bad reaction to also. I will try it again but don't think it will help. Did you find anything that works? I don't know which I can't stand more but the sit pain is horrible and the pain and itching is driving me crazy. So happy you posted what is going on with you, I thought I was losing it. I have had shingles 3 years ago and feel that could be causing the issue plus I have multiple injuries to my spine. Thank you so much!!!

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3 replies
repairgirl | @repairgirl | Nov 10, 2022
In reply to @johnbishop "They do sell ones that come with straps to hold them on but they are not..." + (show)
@johnbishop

They do sell ones that come with straps to hold them on but they are not attached.
https://www.amazon.com/FlexiKold-Standard-Half-Straps-Packs/dp/B09HSPMKC1/ref=sr_1_6

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Wow I was talking about some sort of cold packs for my back, Thank you so much!

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 10, 2022
In reply to @repairgirl "Hi lgerkin, I am so happy that I ran across your post. I have been having..." + (show)
@repairgirl

Hi lgerkin, I am so happy that I ran across your post. I have been having problems for over 3 years. My oncologist recommended me to see a dermatologist. I suffer from severe itching and pain on my ride side by my shoulder. I just came down with a "lesion" of some sorts and my PCP told me to see a dermatologist. Turns out all the pain and itching is caused by this condition which I never heard of before. I do suffer also with the sit bone pain for 3 years too but was to embarrassed to tell anyone. After reading your comment it all makes sense to me now. The doctor wants me to start Gabapentin which I know I had a bad reaction to also. I will try it again but don't think it will help. Did you find anything that works? I don't know which I can't stand more but the sit pain is horrible and the pain and itching is driving me crazy. So happy you posted what is going on with you, I thought I was losing it. I have had shingles 3 years ago and feel that could be causing the issue plus I have multiple injuries to my spine. Thank you so much!!!

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Hello @repairgirl, Welcome to Connect. I see that you have already connected with @lgerkin. I thought you might also like to take a look at the following discussions which may provide some help:

-- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/
-- Tail bone pain: What can I do?: https://connect.mayoclinic.org/discussion/tail-bone-pain/

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repairgirl | @repairgirl | Nov 11, 2022

Hi John, Thank you for the links. I also have realized that if I am cold, which I do not like,lol, that the severe itch is not as bad. I do have itching and pain through out my body but my back seems to be the worse. I am going to look into the ice pack back device that someone put a link up for on Amazon.

Thanks again
repairgirl

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lgerkin | @lgerkin | Nov 12, 2022
In reply to @repairgirl "Hi lgerkin, I am so happy that I ran across your post. I have been having..." + (show)
@repairgirl

Hi lgerkin, I am so happy that I ran across your post. I have been having problems for over 3 years. My oncologist recommended me to see a dermatologist. I suffer from severe itching and pain on my ride side by my shoulder. I just came down with a "lesion" of some sorts and my PCP told me to see a dermatologist. Turns out all the pain and itching is caused by this condition which I never heard of before. I do suffer also with the sit bone pain for 3 years too but was to embarrassed to tell anyone. After reading your comment it all makes sense to me now. The doctor wants me to start Gabapentin which I know I had a bad reaction to also. I will try it again but don't think it will help. Did you find anything that works? I don't know which I can't stand more but the sit pain is horrible and the pain and itching is driving me crazy. So happy you posted what is going on with you, I thought I was losing it. I have had shingles 3 years ago and feel that could be causing the issue plus I have multiple injuries to my spine. Thank you so much!!!

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Hi repairgirl - I'm sorry to hear you're going through this. I know how frustrating and depressing it is to not get the help you need. For my back pain and itching, I eventually found a chiropractor who helped (some of my ribs were out of alignment) and another physical therapist after that who had more experience and showed me exercises that helped to strengthen my shoulder and back muscles. I also learned what positions to avoid. For my sit bone pain, I was eventually diagnosed with high hamstring tendinopathy. I had went for a long bike ride in the spring of 2020 and that was the catalyst. I developed (and still have) scar tissue on my sit bone. I've tried several things - pelvic floor therapy, soft tissue therapy (Graston technique), prolotherapy and radial shockwave therapy. None of them has alleviated the pain, but I have learned what makes it worse (too much sitting, so I have a standing desk) and what helps (strengthening exercises for the glutes). I use a cushion when I'm sitting. It's not ideal but I exercise regularly and that helps my mood. I may try radial shockwave therapy again now that I know that I need to really limit my sitting in order for it to heal. The scar tissue can't heal properly if there's not enough blood flow. The doctor I went to for the initial diagnosis and the prolotherapy was very kind, and although the prolotherapy didn't help, he did encourage me to keep trying other potential treatments and that's what I'm doing. BTW, all the treatments I tried HAVE helped some others. I happen to have a very pronounced sit bone, not a lot of cushion in that area, and that has made it harder to heal as well.

REPLY
lgerkin | @lgerkin | Nov 12, 2022
In reply to @repairgirl "Hi lgerkin, I am so happy that I ran across your post. I have been having..." + (show)
@repairgirl

Hi lgerkin, I am so happy that I ran across your post. I have been having problems for over 3 years. My oncologist recommended me to see a dermatologist. I suffer from severe itching and pain on my ride side by my shoulder. I just came down with a "lesion" of some sorts and my PCP told me to see a dermatologist. Turns out all the pain and itching is caused by this condition which I never heard of before. I do suffer also with the sit bone pain for 3 years too but was to embarrassed to tell anyone. After reading your comment it all makes sense to me now. The doctor wants me to start Gabapentin which I know I had a bad reaction to also. I will try it again but don't think it will help. Did you find anything that works? I don't know which I can't stand more but the sit pain is horrible and the pain and itching is driving me crazy. So happy you posted what is going on with you, I thought I was losing it. I have had shingles 3 years ago and feel that could be causing the issue plus I have multiple injuries to my spine. Thank you so much!!!

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Hi - one more thing I wanted to add was that I take Flexeril and that helps. I don't like the sedation effects, so I only ever take one pill in the evening. I've lowered the dose to 1/2 pill and it still helps a little. I'm definitely not a fan of Gabapentin.

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