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!

Hello @lgerkin. I'd like to invite some members who posted about paresthetica on Connect in the past, @paind, @jigglejaws94. If I read your post correctly, the cause of your notalgia paresthetica is currently unknown?

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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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I was recently diagnosed by my dermatologist with notalgia paresthetica, with an itch on the left side of my spine in the central thoracic region of my back. The dermatologist suggested consulting a chiropractor. The chiropractor had never heard of the condition but agreed to try to work on it. He worked on it for about 6 weeks, but provided no relief and said he didn't want to keep taking my money if I had experienced no relief yet. He said he had tried all of his bag of tricks and had nothing more to offer. He did have me get an x-ray of my back, which showed some mild scoliosis, but he was not sure if it was related. My reading has shown that there is no specific known cause, but it is believed to be a result of pressure on a nerve in the spine. There are topical agents that may offer some relief of itching or pain. I don't have pain at this point, only itching. The literature says it is a chronic and potentially degenerative condition that is not easy to treat. It requires a collaborative effort by dermatologists, osteopaths, radiologists, neurologists, and other physicians to attempt to find a solution to deal with the causes and possible solutions. There may be no solution, but various proposals offer some temporary relief for pain or itching. Good luck!

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@ereyn

I was recently diagnosed by my dermatologist with notalgia paresthetica, with an itch on the left side of my spine in the central thoracic region of my back. The dermatologist suggested consulting a chiropractor. The chiropractor had never heard of the condition but agreed to try to work on it. He worked on it for about 6 weeks, but provided no relief and said he didn't want to keep taking my money if I had experienced no relief yet. He said he had tried all of his bag of tricks and had nothing more to offer. He did have me get an x-ray of my back, which showed some mild scoliosis, but he was not sure if it was related. My reading has shown that there is no specific known cause, but it is believed to be a result of pressure on a nerve in the spine. There are topical agents that may offer some relief of itching or pain. I don't have pain at this point, only itching. The literature says it is a chronic and potentially degenerative condition that is not easy to treat. It requires a collaborative effort by dermatologists, osteopaths, radiologists, neurologists, and other physicians to attempt to find a solution to deal with the causes and possible solutions. There may be no solution, but various proposals offer some temporary relief for pain or itching. Good luck!

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@ereyn Welcome to Mayo Clinic Connect. You were recently diagnosed with notalgia paresthetica and you have yet to find relief.

Notalgia paresthetica is a type of neuropathy. Members like @artscaping @healthhopefreedom @johnbishop @jeffrapp @smbryce1 are currently discussing neuropathic itch. I have linked an example below.
– What do you do for Neuropathy itch? https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/

You may want to scroll through the past comments to look for suggestions.

May I ask if you have considered looking into seeing a provider that specializes in neuropathic itch?

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@ereyn

I was recently diagnosed by my dermatologist with notalgia paresthetica, with an itch on the left side of my spine in the central thoracic region of my back. The dermatologist suggested consulting a chiropractor. The chiropractor had never heard of the condition but agreed to try to work on it. He worked on it for about 6 weeks, but provided no relief and said he didn't want to keep taking my money if I had experienced no relief yet. He said he had tried all of his bag of tricks and had nothing more to offer. He did have me get an x-ray of my back, which showed some mild scoliosis, but he was not sure if it was related. My reading has shown that there is no specific known cause, but it is believed to be a result of pressure on a nerve in the spine. There are topical agents that may offer some relief of itching or pain. I don't have pain at this point, only itching. The literature says it is a chronic and potentially degenerative condition that is not easy to treat. It requires a collaborative effort by dermatologists, osteopaths, radiologists, neurologists, and other physicians to attempt to find a solution to deal with the causes and possible solutions. There may be no solution, but various proposals offer some temporary relief for pain or itching. Good luck!

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Hello @ereyn, I would like to add my welcome to Connect along with @erikas and other members. I do have an itch feeling on my back that is usually along my spine just below the shoulder blades but I have never thought it to be related to my neuropathy. I have no pain with the itching which I think others have described theirs as intense painful itching. @artscaping may have experience with this type of itching in the discussion listed by Erika – What do you do for Neuropathy itch? I can usually find some relief from my itching the old fashioned way with a long handled back scratcher. The following article from April 2020 mentions some different treatments, including osteopathic spinal manipulation.

– What to know about notalgia paresthetica: https://www.medicalnewstoday.com/articles/notalgia-paresthetica

There is also another discussion by @jenniferhunter that you might find helpful – Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@ereyn

I was recently diagnosed by my dermatologist with notalgia paresthetica, with an itch on the left side of my spine in the central thoracic region of my back. The dermatologist suggested consulting a chiropractor. The chiropractor had never heard of the condition but agreed to try to work on it. He worked on it for about 6 weeks, but provided no relief and said he didn't want to keep taking my money if I had experienced no relief yet. He said he had tried all of his bag of tricks and had nothing more to offer. He did have me get an x-ray of my back, which showed some mild scoliosis, but he was not sure if it was related. My reading has shown that there is no specific known cause, but it is believed to be a result of pressure on a nerve in the spine. There are topical agents that may offer some relief of itching or pain. I don't have pain at this point, only itching. The literature says it is a chronic and potentially degenerative condition that is not easy to treat. It requires a collaborative effort by dermatologists, osteopaths, radiologists, neurologists, and other physicians to attempt to find a solution to deal with the causes and possible solutions. There may be no solution, but various proposals offer some temporary relief for pain or itching. Good luck!

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@ereyn Below I have linked a journal article from 2013. The chart that discussed treatments is informative and easy to read. You may want to take a look.

– Notalgia paresthetica: the unreachable itch https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3663387/

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Thanks for the responses! I worked with a chiropractor for the last three months and it has helped somewhat. He gave specific exercises for me to try, which have improved my posture and strengthened my back/arm/shoulder muscles. I notice the pain/itch more when I spend too much time with my head forward (phone, computer). FYI, prior to the chiropractor, I tried physical therapy and acupuncture, neither of which helped. Topical lotions have not helped either. I originally thought it was due to nerve impingement, but I had an MRI and CT, and there was none. For me, it's all about posture and exercise. I also got a standing desk, since it also flares up if I sit too long.

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