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I am curious to know other’s stories of post viral neuropathy.
Neuropathy | Last Active: Aug 8, 2022 | Replies (62)Comment receiving replies
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...
Replies to "Thank you Chris! For the last four months, she has suffered with a very intense, burning..."
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
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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.