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The Misery of Post Herpetic Neuralgia

Posted by fmmartinez58 @fmmartinez58, Feb 2, 2023

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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lauraherbert | @lauraherbert | Sep 16, 2025
In reply to @lraitt "Wow! What kind of surgery? I've never heard of that." + (show)
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Wow! What kind of surgery? I've never heard of that.

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Please tell me the surgery
I will do anything

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janpw | @janpw | Oct 1, 2025
In reply to @googalina "Bella, you are a great daughter to care for your mom like this. My daughter is..." + (show)
Profile picture for googalina @googalina

Bella, you are a great daughter to care for your mom like this. My daughter is caring for me too and trying to give me hope. I am on month 8. Nothing has worked and I fear pain management will want me to wear a fentanyl patch, which at this pt I might. Have they tried the Butrans Patch with your mom? Some PHN patients get relief with that. I did not but your mom might. It's not a full opioid so you don't have to consider addiction etc . I am receiving acupuncture and they are determined to heal me. I hope that's the case but more importantly they keep me positive. I found an entire team that helps me. Drs aren't going to do that. Keep doing what you are doing and remind her it's not forever. I know there are people that go past a year and I can't imagine but take it day by day. Have you seen pain management, neurologists yet? Acupuncture , lidocaine patches, check to see if anyone in your area performs the advanced capscion patches, they burn but give relief for 3 months they tell me. My primary care Dr is denying I have PHN, mostly because she didn't catch the shingles when she could have, so I don't waste time with that. Be there with her for appointments if you can, bring a meal and sit together, let her cry and hold her tight. In the end I believe that will bring her healing that other people can't provide. Let me know how you both do. Would love to know if you both found relief. Take Care

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@googalina I have had post herpetic shingles’s pain for many years on my abdomen. A really easy cure for me is to place a fine Cotten handkerchief over the pain area and it stops the pain immediately. Lace underwear really irritates the area also.Fine Cotten works wonders.
Good luck.
JANPW

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bush6d | @bush6d | Oct 17, 2025

I’m Mike username Bush6d. I had shingles in June and it’s now coming up on Thanksgiving. I have the post herpetic neuralgia from my backbone left around my side and front to my sternum. I’m prescribed Hydrocodone/Acetaminophen 5-325 TB and pregabalin 75 mg by pain management Doctor.
I hopefully am slowly getting better as the severe pain in my stomach is shifting towards my back. My big problem seems to be the lateral muscle on the left back. It cramps and locks but eases up with the drugs which I take twice a day. So I’m thinking it’s moving towards the back. However I still have the occasional lighting bolt along the side forward of the lat. the area in front below the ribcage left of the sternum seems to be the pain control area always on fire.
My big relief usually comes, a few hours after taking the pills and applying over the counter Biofreeze roll on external over the area especially in the cramped last and on the burn left of the sternum seems.
At night in bed sometimes I get back to sleep by rolling onto the cramp putting pressure on the area.
I’m 80 years old and have myasthenia gravis treated by generic Imuran and mestinon daily for 27 years now. I’m not going to kill myself as life is too much fun. But this pain definitely is putting a hitch in the action.
I would be grateful if anyone out there with this neuralgia has any suggestions to alleviate it.

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motalor | @motalor | Apr 3 3:08pm

@susanlurding - can you give an update since the DREZ surgery?

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loriesco | @loriesco | Apr 5 1:59pm

try increasing your iron (I like bysclycinate iron) and adding B12 (I do injections). The nerve sheaths need attention and they are probably "on fire" and causing the pain. I was able to reduce my neuropathies by treating the nerve sheaths with those supplements. After I successfully did that - I found the research and resources to back it up. Your nerves need to still be healed.

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wendylbegitu | @wendylbegitu | Apr 11 5:07am
In reply to @chrisgarre8 "I have a suggestion: I also have PHN from a severe shingles attack. Mine isn't as..." + (show)
Profile picture for chrisgarre8 @chrisgarre8

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!!

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@chrisgarre8 the only thing that helped with PHN pain after two hospital stays was glucopuncture. Worked like a charm for pain. Got me off horrible drugs immediately.

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kathleenintexas | @kathleenintexas | Apr 17 4:55am
In reply to @susanlurding "I am 78 years old and have fought to end my TGN (herpetic trigeminal neuralgia) for..." + (show)
Profile picture for susanlurding @susanlurding

I am 78 years old and have fought to end my TGN (herpetic trigeminal neuralgia) for 3 years.I cannot tell you all the treatments and pills I have tried to end this horrendous pain ! Finally. I was told of a procedure that ends the pain. I saw a neuro surgeon , Dr. Neamat, Chief of neuroscience surgery dept at University of Louisville.He told me of an operation which discontinued the pain. The initials of this procedure are DREZ, I can't begin to write the full explanation of these letters much less pronounce them. It is an invasive operation requiring a procedure into the brain.
I had reached my end (almost literal) to ,get rid of my pain, and an invasive procedure was at the end of my list but I could not live any longer with this pain. So it was not a hard decision I made to get more info and have the operation. I was in the hospital 4 days, and I'm now in rehab, writing you from my room. Because the operation must cut some neck muscle on the back base of the head, it takes a little physical therapy to work on the muscles. compensating til the old ones repair. it. was an easy decision for me to make to have the operation, even with this slight setback.
I had the operation 10 days ago and woke up from it pain free. The joy I had brushing my teeth, washing my face, eating food and having my taste and smell return ...all pain free. If you are interested in this, contact Neurology Dept at University of Louisville, Dr.Neamat. you can find address online, my best to you. Susan Lurding

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@susanlurding
So happy for you, Susan, that you finally found relief. I also have post herpetic trigeminal neuralgia, but in the opthalmic branch of the trigeminal nerve, so the pain is in the scalp and my forehead and eyelid. Gabapentin helps tremendously, but I still have discomfort and intense itching. It's been over a year now and I keep hoping one day it will subside, but I read it can last a lifetime. I read a frightening article about gabapentin increasing the chance of dementia, based on a study of much younger patients than I, but it has me very concerned. With the support of my PCP I cut the dosage of gabapentin. I have more discomfort with the lower dosage, but it is tolerable and I am hoping it will decrease the dementia risk. I have a friend my age (75) with it, so am very familiar with the disease and I don't want it!

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