I am curious to know other’s stories of post viral neuropathy.

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.

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.

Cindy,
What was the outcome/Success of your situation? My Wife has been told she has post viral neuritis and after two CAT Scans, MRI's, Lumbar Puncture, Skin Biopsy and over 75 blood tests, they can't pin point the diagnosis. She has been seen at Dartmouth and Brighams Womens Hospital. We are lost....
Curt

Good afternoon @curtj, Welcome to Connect. We are a community of patients, parents, providers, and caretakers, not medically trained but very experienced in what has happened in our bodies and what steps we have taken to move on from the diagnosed illness or condition. It appears that you are exploring information for your wife as written by another member, @cindy62 who had opened a discussion in October 2019. It is likely that @cindy62 is not active at this time. If you would like to find information neuropathy information go directly to:

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You will find a post on the right-hand side of the heading. It will say Oldest......followed by Newest. So for the latest posts tap Newest. You will also find more than 100 different Discussions in the Neuropathy group listed when you click on Discussions. It might be best to go through them and see if any other discussions connect with your question.

What exactly is causing your wife the most serious symptom that is concerning you? I realize the dismay you must feel at not even getting a diagnosis. I think you might find help on Connect by using the search tool at the top right directly to the left of your photo. Type your keyword in the box and press the magnifying glass. Take a look.

I will be waiting for you to fill me in a bit more and then while you are searching the discussions, I can see just who might be lurking in the wings with a very similar journey and a happy outcome.

May you and your wife be free of suffering and the causes of suffering.
Chris

Thank you Chris!
For the last four months, she has suffered with a very intense, burning pain that started in her neck. It became systemic as it traveled to her mouth, throat and tongue with burning, tingling sensatons that were unbearable. It traveled throughout her body to her chest, arms etc. She practically lived on ice packs for three months. This all started in early March after a trip to Florida and she caught a bad respiratory cold. She was tested for covid (negative) and for the antibody to see if it was present. (also negative) She is ultra sensitive to medicine and had been on Gabapetin (had a reaction to it)at a low dose of 600 mg/day. They wanted to increase it but she was having more pain. She was on Tramidol and has since come off as well as Lyrica. Lyrica is only 25 mg/day down from 50 mg. She reduced it per her pain Doctor two days ago and now is in extreme pain but are told that the dose was too low to have side effects. She did have a three plus week of reprieve that ended two days ago. She has so many tests and no real diagnosis or prognosis for what she will be dealing with. Her heart rate and BP is high and this afternoon made a trip to Urgent care as a result. She had two episodes of Sinus Tachycardia while at Urgent Care. All they said is get her to a hospital if it happens again. (She has been treated for Ectopic Atrial Tachycardia) Short of getting on a plane and heading out to Rochester, we are at a loss for what to do next...

curtj, without any real medical training I'd like to share my own experience. I tried gabapentin four separate times and got sick each time. My doctor suggested Lyrica and I took only ONE pill. Within a few hours I was so sick that my husband had to take me to the ER. I told the doctor there that I had only taken one Lyrica pill. He said (and I quote), "Well you took ONE!"...I also have Atrial Fib, similar to her Tachycardia.
I say all that to say that she should probably not take either medicine. I think that they are in the same family. Correct me if I am wrong on that. The only thing I can tolerate is hydrocodone, 5 mg, three times a day. A side note: I don't tolerate many drugs anyway, but that seems to give me almost no side effects other than constipation which can be alleviated by Senna tabs or a glass of prune juice. I even have recently had auditory hallucinations several times with the lowest possible dose of amitriptyline. I hope she can avoid these meds that make her sick. Our bodies are all different and usually doctors prescribe the most commonly used medicine. Maybe she, like me, is uncommon!

Thank you

Hello @curtj, I would like to add my welcome to Connect along with @artscaping and other members. It sounds like your wife's doctors have not been able to come up with a diagnosis or treatment plan. Have you thought about seeking help from Mayo Clinic where medical experts work in multidisciplinary teams across different specialties? If you would like to seek help from Mayo Clinic, you contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hi @curtj it would be great for your wife to have a diagnosis. There are ways to diagnose peripheral neuropathy, one being by a nerve conduction test and another through a skin punch biopsy. They are the two main ways (there are two others that I have heard of, one bing genetic testing and the other through cornea confocal microscopy). If she has the skin punch biopsy I believe they can tell you whether it is small fiber peripheral neuropathy, which quite a few people here have been diagnosed with. If that is her diagnosis, then your wife is faced with very few options as far as a cure but many things to try for pain reduction.

Apparently gabapentin and lyrica do not work for her. Other things which people have tried are other drugs, such as Tramadol. There are also supplements which might help, among which are a quality B complex supplement, or Acetyl L Carnitine coupled with R Lipoic Acid. She could also try Agmatine, which my wife, who has PN in her feet, had great luck with for several months until it caused her to develop hives. Quite a few people are using Cannabis or marijuana in some form, legal or otherwise, to help their pain. Some are using an OTC drug called kratom for their pain, which can be procured on the internet. There are a number of topicals people use, although in your wife's case I am not sure whether they would be practical to use if she is afflicted inside of her mouth. If you want the names of some of these let me know.

I feel very badly for you two, I know exactly what you are going through because my wife deal with this on an ongoing basis, and it is a maddening situation. There are many people here who are willing to try their best to pass on any information which might be useful to yo and want to help. Please stay in touch with us. All my best to you both, Hank

Thanks Hank
She did have a skin biopsy and it came back negative for small fiber neuropathy. She was on Tramadol but that did not help. Thanks for the input, we appreciate it!
Curt