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The Misery of Postherpetic 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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arcuri24 | @arcuri24 | Jun 8 3:41pm
In reply to @dogrobertson "I am now almost 70. I have phn for 9 years now. It is miserable. It..." + (show)
Profile picture for dogrobertson @dogrobertson

I am now almost 70. I have phn for 9 years now. It is miserable. It does fade occasionally but most often it feels like yourvskin is being tightened up in a vice.
I have to wear linnen or cotton clothes and cannot tolerate anythingcartificial on my skin around the area where the shingleds occurred.
I sympathise so much. The only slight relief i get when it tightens is lanocaine patches.
Been to pain management clinic without succes and the strong painkillers make you into a zombie.
Can anyone help?

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@dogrobertson
Pain is a struggle and unfortunately some pain management clinics are clueless. I am suffering from nerve pain caused by a dermatologist who administered a needle for shave biopsy that caused some damage. Pain mgmt docs at Columbia Presbyterian wrote a script for rigorous physical therapy which I did for 8 weeks at 90 minutes per session. It was of no help and it kept my nerves in an aggravated state. Now my neurologist has told me to stop the PT. He did offer me gabapentin but I will not take it--being a zombie which is the term you and my dentist who tried it also used, is not for me. My neurologist did prescribe lidocaine Rx patch but I have yet to receive them thanks to bureaucratic red tape. My friend has phn due to shingles and her scalp feels like it is on fire all the time. I am hoping that my pain will heal. My neurologist said prognosis is "good" but every day seems like a struggle. I also have celiac disease so I cannot order out food which means my poor shin does not get lots of rest as I have to stand by my stove and cook gluten-free meals. Celiac is probably also delaying my healing and I have neuropathy as result of it. I am leaning into this support group as my brother criticized me for being too focused on my pain. I live alone but do have my dog for company. I did not need the biopsy either as the lesion was benign. Before this I was in fine health with hardly any pains

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sarajmeyer | @sarajmeyer | Sep 13 8:38pm
In reply to @bush6d "I’m Mike username Bush6d. I had shingles in June and it’s now coming up on Thanksgiving...." + (show)
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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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How are you doing? I have had debilitating PHN PAIN SINCE
Dec 2024. Many times I just wanted to give up. Still in constant pain but bearable.am going to talk to uofm Dr. Fri how administrated botox. Anyone else use botox for pain relief?

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