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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 8:42pm
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 11:08am
In reply to @googalina "Bella, you are a great daughter to care for your mom like this. My daughter is..." + (show)
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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 3:54pm

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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