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I sure don't want to bring anybody down. I also want you to know that I laugh at myself many times a day for how pathetic I have become since I got ShIngles and subsequently PHN. Yes I said pathetic. Just stating the facts as I smile as I am writing. My journey with PHN as been very tough. I assure you it will get better. But cycles back regularly and is always a little bet worse then it was the time before most of the time. Here is my story.
I just officially retired, we bought a really serious fixer upper in the middle of nowhere, I moved out there to it before my family and week after working really long days demoing the structures. I started having the craziest symptoms.
Sever back pain, headache, dizziness, electric shocks, night sweats, nausea. I was completely isolated and was unable to stand up. I tried to drive but the nerve strike were throwing me across multiple lanes. I was 6 hurt from my doctor and family. I stopped at an Urgent care, they tested me for kidney stones, took a few X-rays. No conclusions, no treatment. I made it to my family, was I so much pain they told me to go the ER. I went and they did the same as the Urgent care facility the day before. No diagnosis. The day was in convulsions and would fall to the floor with stabbing incapacitating pain. I would fall to the floor making agonizing noises and the stand back up in a few seconds and laugh at the doctor and say see what the hell I am going through and then back on the flooring severe pain. The next day I was worst and went back and exhibited the same symptoms, Back, side pain, headache, electric shocks, dizziness, nausea nw for fours day., On the fifth day I went to the ER again because no I have not eaten for days ad could pass a movement. They a CT scan of my stomachs gave me three magnesium drinks and made me stay until I had a movement. Sent me home thinking thats solved the problem. The next day after having all the same symptoms. I noticed burning on my left side. After a few hours I had a complete belt of Blisters on my left side torso, belly button to spine. Went to the ER and they said "Oh you got shingles" Here Have some Antiviral meds and go see you PCP". It took me two weeks to get in to my PCP. I was still having convulsion of pain and my Doctor was really mad I was not expedited into his office. He told me I had the worst case he ever heard of. He put me on Gabapintin max dosage. I lost 30lbs in six days. Spent the next two years half drunk of the Gabapintin as I continued with my renovation project. My wife drove me everywhere.
I am now on Lyrica and I just threw my antidepressants in the trash. I spend a lot of time on the couch. Some days I start a project end up leaving all my tools and materials where I started for days. I have had to throw away material because I left them in the weather and they ended up useless.
Today I have had PHN for 4 years.
3 Steroids injections
2 Intercostal Nerve Blocks
1 7% Capsacian Wrap
Nothing works!!!!! I mean nothing. The best treatment is in a recliner with a pillow over the shingles scar area. I am happy in my chair.
What to avoid (Yes I say avoid)
What sets of a pain cycle:
Showering (I can't have water splash on my side or I will scream)
Change of pressure (A door closing)
Hot or cool beverages or plate of food set in front of me or moved past behind me.
Slight brushes accross my scar area
Gently touching any part of my body
Best treatments is TV, Playing with my little dog, and hanging out in a windless, dry, cool spot with my pillow over my side. Reading provides a distraction.
Four years now and I tell you it has made me laugh, cry, and want to die on many occasions. Fortunately I was always addicted to pain for 20 years service in the Special Operations. This is tough, it is life changing, it is more than I could ever bear. I have suffered. I have found and lost myself and my relationship with my wife time and time again. I am so fortunate t have my wife. We finished our project and living comfortably.
I could not imagine going through this alone. I spent hours in maths sitting in a chair. Having the strength to stand up and move slowly for a few minute and back in the chair for a few hours. Not talking just staring at the floor. Absolutely the complete opposite of my Hypernactivie self and wife.
This is my story, I applaud those that have moved on from PHN. I would never recommend this to a foe.
I tell you to submit and surrender to the pain with a smile on your face. I pray we all get better and wish the best to you who suffer. We mayn't be able to stand with each other, but we can just smile and share the love for understanding of what chronic pain does to each of us for whatever human conditions we suffer with.
I love you my kindreds spirits and we will get better.
Read the book of JOB and see his experience with chronic pain.
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