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cindy62 (@cindy62)

Post viral neuropathy

Neuropathy | Last Active: Aug 26, 2020 | Replies (43)

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@kimitammy

Hi to anyone who may be able to shed light on treatment of postherpetic neuralgia (PHN).
I was diagnosed with severe shingles the end of January 2019 from my breast bone all the way around to my spine. It then turned into cronic postherpetic neuralgia.
I've been on most all medications that are supposed to be helpful in repairing the damaged nerves. To no avail.
I've experienced severe side effects from all of them & unable to use or get a benefit as a result.
There also have been no pain medications that have been helpful. Therefore I take none.
I finally, after 9 months had an appointment with a cardiologist that feels he will be able to give me injections that will deaden the nerves on a permanent basis.
The reason I saw the cardiologist was that I had four episodes of what I believed may be heart-related issues when in fact they were spasms from severe costochondritis through my chest region. I have sense had a contrast dye cat scan on my heart and on Monday will have a contrast dye MRI on my spine. I'm being told that they may be able to see fluid within my spine that may be helpful in determining how to address the PHN on a permanent basis as well as rule out other causes and get me out of this severe pain. It has been entirely debilitating to me for 10 months. I am in pain every minute of every day in the entire right side of my back and under my right breast. I am desperate to hear if anyone has found a means of relief from this.
I also was diagnosed with polycythemia vera in June and feel that we may possibly finally have a grasp on that. As a result of these illnesses I have no energy in or ability to exercise due to the pain that it creates from even the most mild forms. As a result I have put on approximately 30 lbs which of course makes the overall worse by the lethargy that it has created.
Please help if anyone has any insight to a cure.

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Replies to "Hi to anyone who may be able to shed light on treatment of postherpetic neuralgia (PHN)...."

Hi @kimitammy, Welcome to Connect. It can sometimes be overwhelming dealing with the pain which makes everything else secondary. I can relate to the fatigue and lethargy when I'm not feeling well. I'm hoping some other members with PHN will be able to share what has helped them. Here are a few sites that may provide information on treatments for PHN.

Medical News Today: Postherpetic neuralgia: Treatment, symptoms, and causes
https://www.medicalnewstoday.com/articles/160253.php

New Guideline Evaluates Treatments for Postherpetic Neuralgia
https://www.aan.com/PressRoom/Home/PressRelease/231

You mentioned you were also diagnosed in June with polycythemia vera and the doctors may finally have a grasp on it. Have you started a treatment? Just wondering if that may be part of symptoms of a lack of energy and the lethargy.