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Thanks for sharing your experience! I've been HIV since 1987 and it wasn't until about 2 years ago that I experienced my first sensations of pain and burning. But unlike other HIV patients, I don't have PN. I have L3, L4, and L5 radiculapathy symetrical pain down the thigh and calves. My HIV doc and Primary Care Physicians all say that it most likely is being caused by being a long term survivor and the long list of Medications I have been on and are still taking. My problem is that I'd like to find a support group for folks that have HIV AND chronic Pain . . . I'd like to discuss my case with some University that might be engaged in research on folks that are long-term survivors and experiencing pain not associated with PN. I can't find anything really useful online except abstracts from medical journals on what I might have. I've tried Gabapentin - which made me completely crazy, Topomax - which lowered my white blood counts to zero, and now trying various doseages of Lyrica. Thank God For Lyrica as it's given me back my life - at least 70% of the pain is not noticeable. However, that's not good enough for me. I'm not a candidate for surgery because MRIs show a perfect spine. An EMG study shows most likely what the problem is . . . damaged nerves related to the L4/L5. But there is nothing anyone can do, except help control the pain - if possible. So where do chronic pain sufferers go to get help beyond their PCP or Specialist, when these Doctors have no idea who's doing work in the field of pain management as it relates to HIV and the medications that has caused such damage?
Amen brother, I have lived 23 years with HIV and have went through hell! I am Legally blind because of CMV Retinitis of course HIV related My hands get so Numb I want to scream my head off not to mention the leg cramps that make me Jump out of bed during a sound sleep! I am taking the generic for Neurontin In February of this year I had a total hip-replacement caused by Avascular Neucrosis,my Doc said just another HIV related disease, sometimes I want to blow my brains out but I just pray for a quick sudden death Stay strong all of my Brothers and Sisters in CHRIST
My heart goes out to everyone who is suffering and sharing their stories on this site. I too have had bouts of PN, but have been blessed with recovery. I especially feel much sorrow for those posting here who are in denial of GOD and his son JESUS CHRIST, without him, my life with AIDS would be unbearable and I would have no hope here on earth or in the afterlife. GOD is not only real, he is good, and faithful to those who accept his son as their lord and savior. Don't be fooled by the things of this world to think that there is an alternate answer.
I sat here reading this article and realize I have taken every medication mentioned by all of you except Tramadol. I will ask my HIV specialist if she can prescribe it for me. Hopefully it won't interfere with all the other 16 meds I take each day and might help. The pain in my lower legs and feet is unbearable. My life seems to have stopped completely. I can't do much of anything except watch time slip by and lament that I am not part of it. I had hoped that Lyrica would be the magic pill. It did nothing. I stopped it after 3 months. I also like some of the others just recently saw a Pain Management Specialist. Again I came away with nothing except now I am on hydrocodone 4 times a day. I also have an illness called Polycythemia-Vera. A non-cancerous form of Lukemia. I produce too many red blood cells and have to be phlabotomized at times.(they believe it caused me to have a stroke and a heart attack) Inorder for me to shower I have to take 3 hydrocodone and a Xanex otherwise I get a reaction on my upper body of the nerve endings firing off. It feels like I am covered with 100's of red-ants stinging me. When that happens the PN takes a back seat. HIV has made my whole life a train wreck. The PN is a constant extreme pain that spikes unbearably at times. I have been HIV Positive for 10 years and on meds from day one. The first few years I had no side affects. Then the train wreck startd and never ended. It seemed every year something else would happen. I too have had major surgery, a double Femeral bypass in both my legs and that caused alot of nerve damage on top of the PN. Damn, I could go on for hours but I don't want to create a pity party for myself. I wish all of you less pain and I hope you get some relief. Take Care.................. Al Hebert
I HAVE HIV AND PN. I AM USSUALLY SICK TO MY STOMACH MOST MORINGS AND SOMETIMES ALL DAY AND NIGHT. I WORKED WITH HIV FOR YEARS . WHEN I HAD A BAD STABBING PAIN IN MY LEFT FOOT AND ANKLE I THOUGHT IT WOULD GO AWAY. I WAS AT THE PAIN DR WIHIN DAYS. I HAD TO STOP WORKING. LOST MY HOME OF 14 YEARS. I HAVEBEEN ON NARCOTICS WHICH I THANK GOD FOR DAILY. AFTER 5 YEARS OF VICODIN AND OCY. I WAS PUT ON METHADONE. I STILL WALK WITH A LIMP. I USE A CANE. I STILL HAVE PAIN BUT THE METHADONE WORKS FOR ME. TAKE CARE EVERYONE. KERRY
Hi Laura: Thanks for sharing. I had no idea of the your PN and I can totally relate. I will be blogging about it soon. For me the neuropathy has gotten much worst in the last 2 years I'm having trouble simply walking down the street. Much love, David
I had full blown aids with KS all over the outside and inside (lungs, throat and lymph nodes) back in 2001. Boy that was fun. Anyway, I was told my PN was caused by the virus, the meds and the chemo all combined. The only way I could describe the pain was to say it was like putting my feet in a deep fryer 24/7. While I was fighting all of this in the hospital, they would inject me with Dilaudid. OMG!!! That stuff not only stopped the pain but it made me feel great too. Although it's a very powerful narcotic, it worked great at the time. upon leaving the hospital countless times and eventually for good, I tired everything from Oxycontin(never again) to Neurontin which did alleviate the pain somewhat. Mostly, I smoked POT. Yes, Marijuana was my best friend through all of this. Remember, I was on chemo so I needed to eat and boost my nutrition. My albumin was barely at 1 and I recieved countless blood transfusions because my red blood count would drop as low as 4 all while having no t cells at all. Bottom line folks, now I take Kaletra and Truvada. I am undetectable with the newest test: less than 20 viral load and my T cells are at 885. I don't take any pain meds and I stopped smoking pot in June 2010 due to cost. I just can't afford it, but i do miss it. I guess what I'm trying to say is hang in there everyone, it could possibly get better. They once told me it never would.
Scott
I was in my fourth year of college when my feet started getting this incredible itching inside that wouldn't stop. Later, it turned into such excruciating pain, that I couldn't sleep. I discovered one of my drugs contained AZT in low amount, so I got off it, but the PN was still there. I went to get the full tests for PN, and that's what it was. I thought, jeez I have survived HIV/AIDS, and I am in the groove with my life, then this. I spent days crying and asking God why, why this now? No answer!! I contemplated suicide, but I decided to find out what I could do. The answer was nothing. I live on a cancer patients dose of Fentanyl, Percocet, and Neurontin. I use Lidoderm patches, and I am doing fairly well. I can't walk long distances or travel, but I graduated with my AA degree, and I am working on my B.S. in Computer Networking. I plan on graduating come hell or high water. I had to learn what I could and couldn't do. I have to keep stress to a minimum, and I have to drive with cruise control when I can. I don't have the life I had, but I do have a life, and I am happy to wake up each morning. I walk as far as I can everyday to keep my muscle tone. I hope for a cure, but it doesn't seem like there is going to one soon. I have to say that after having this, not much bothers me. The drugs keep me in a cloud, but the pain is manageable. I sweat easily which bothers me the most. My advice is to get a good pain manager, keep stress low, and realize that your old life is over, grieve over it, and move on with your new life. Life is very short, and enjoy the good times. I haven't given up hope for a cure or remedy for PN.
March 2, 2011