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The Misery of Post Herpetic Neuralgia
I ama 64-year-old female who lost her body to post herpetic neuralgia (after the shingles), at the age of 59. Chronic pain, 24/7. Every day is a struggle. I also have additional nerve damage in the dermatomes. Areas on my body are on fire. I cannot wear clothes in those areas, and I can only sleep on one side. I have tried multiple drugs, procedures, acupuncture, etc. I have been at it for 5 years. I would love to find if there is some miracle out there that I haven't found. Most pain management doctors think I am crazy, because I am in crazy pain. Most of them do not even know what it is. Not rare, but not very common. I really have tried so much. I have to hold on to hope.
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Hello @fmmartinez58 and welcome to Mayo Connect. I am so sorry to hear of your post herpetic neuralgia after having Shingles. I have had something similar after having Shingles, however, the pain has not been a problem for some months now. My Shingles were also in the lower back and side. I recall walking doubled-over for many weeks before getting some relief with Gabapentin.
Mayo Clinic has a pain rehabilitation center that might be helpful to you. Here is a link that describes this multi-disciplinary clinic, https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691. I would like to invite another Mayo mentor, Rachel, @rwinney to discuss the help she found after attending this clinic.
After reading the link about the pain rehabilitation center, do you think that this is something you might consider?
I have a suggestion: I also have PHN from a severe shingles attack. Mine isn't as bad as yours. I do still feel some pain and discomfort after a year. It also affects the bladder condition I have, which is Intersystitial Cystitis (bladder pain syndrome). And we get attacks because our immune system is not up to par, studies say. And that makes sense. I have found that most of the drug options and other pain treatment options do not work for me. I look for natural methods to treat. And since you cannot eliminate a virus, you do something to make it better. It makes sense to boost the immune system so that it can fight the virus. Here is what I have found that helps me. I use L-lysine to help the immune system. It is an amino acid that is for that purpose. You can get it at Walmart and is not expensive. You can take 3 a day. I also found Red Marine Algae to be helpful. Both help ease the pain. Of course, you don't want anything to interfere with medications. Hope this helps!!
Hi i also have a severe case of phn and i suffer back pain, miserable skin pain and sometimes belly pain. I’m 9 weeks in and the pain has not subsided. Was taking 3200mg of gabapentin and tried to ease off but I’m in great pain. Not sure the higher dose will make a difference. So worried this will be for life.i read most pain subsides after a year due to my severity of shingles not so sure
I am searching for help for my mom’s year long battle with constant pain after shingles. She has been to several doctors and on all the meds…nothing gives her any relief. She has gotten a total of 4 injections from a pain doctor and acupuncture. She is so depressed that this is going to be forever. I feel so bad for her & not sure where to turn to next . Any suggestions?
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1 ReactionI feel for her.
I once worked with a doctor who had post herpatic neuralgia as they call it, for over a year.
She couldn’t even wear a bra, it hurt so bad.
Hope your mom gets some relief soon.
I have PHN and started this discussion. PHN is high level pain. Your life is no longer yours. I'm on year 8 and the only thing that comes near to relief is a neurorectomy. I've had one and hope to get another this year. Resources for PHN in the US is zero. Insurance (most) does not cover neurorectomys and it normally takes more than one surgery. There are only four doctors in the entire US that perform the surgery in hopes of relieving pain. I have tried just about everything.
Hi there.... Just wondering what is a neurorectomy please. I have been having Nerve Blockers which have been successful
Hi there
I had Shingles when i was early 40's, the usual area but also in my mouth, ear, eye, and all over my head. One of the university professor's in the USA ( I am in Australia) said that due to all the nerve pain i feel he wouldn't be surprised if it went into my spinal cord and said Neuro Autoimmune would have been the end result. I have Lupus and Fibromyalgia. I have Endep that helps me sleep at night, I also have Nerve Blockers Procedure in hospital from a pain specialist a couple times a year that seem to help. Take Care
In terms I understand; the damaged nerve for which you had a successful block, is cut during surgery and is tucked under a muscle so that it will not grow back. Thus, the pain being caused by the damaged nerve will no longer be