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HIV/AIDS, Neuropathy, Painkillers (My Personal Hell)

January 21, 2011

This article was cross-posted from "A Girl Like Me," a program of The Well Project.

Well, where do I start!? I guess pain ... physical and mental. One of the situations that we face with HIV/AIDS is pain ... from neuropathy, aging, etc., etc. I myself was on pain medication -- exactly, Oxycodone. Well, 8 years ago when one of the doctors I saw prescribed it to me, he never told me how addictive it was!!! I wish I knew then what I know now!! I have suffered sometimes more with this little pill than with the HIV/AIDS virus ... that, by the way, I started with half a pill (5 mgs) and ended up with maybe taking 80 mgs a day! This is over an 8-year period as I said. You see, this pill comes in different forms. Names I know: Morphine, roxycodone, oxycodone, oxycontin, codeine, tramal, percodan, etc., etc.

WHY did this doc put me on a medication that seems like heroin but in pills??? That's highly addictive?? I get so angry with the hell I have been through. Thank god I have not ended like many of the people I know and always had the strength and WILL to not take as many as I know some people that started just like me. I mean, they are taking up to 20 pills or more a day! Of course, this medication causes dependency, which means if you don't take it every day, you go through withdrawl like from heroin. :( Not everyone can do what I have done and stop cold turkey, on my own; I have gone through like 100 flus and feel odd and weird. My brain is still in the process of healing itself from this narcotic. Don't get me wrong, I know some people have so much pain from different things and it's something that they need because the pain is too much! And then in a case like that, they have to take this strong narcotic. I just wish that doc would have told me more about what he was giving me! And maybe started me off with pain meds that DO NOT have opioids, alternative treatment, etc., etc. That's why I urge everyone: always keep yourself educated and when the doctor prescribes you anything ask questions and not only that, research! research! research!!

Here is a little info on OPIOIDS: Anyway, a lot of people with HIV/AIDS have, at some point, depression and anxiety ... so not only does this medication take away your pain but it makes you NUMB emotionally. At the start it's good, you're ok ... you may even throw up but it takes away the pain ... but then you find yourself in this HELL ... because what you started taking is not enough and you have to take a little more and more or you get what is called DOPE SICK. Imagine that ... I was never a drug addict and because my brain wanted more I am DOPE SICK now??? It's just amazing how this thing got me. But I beat it. I'd rather live taking ibuprofen and getting massage therapy than go back on those things!

You know what is IRONIC? That this medication is for pain and if you don't take it, it gives you more pain! Imagine that. So basically, my brain is telling my body take more. So where would I be 10 years from now??? Like many of my friends that were doing well with HIV/AIDS, and now they are dead because they overdosed. I had the need to let everyone know about this. I don't know the names of pain medications they may use in other countries in the world, but if you have PAIN ... ask what are the components and if it is addictive.

Well all I can say is I am free from this DEMON for today ... I take it one day at a time :D ... .and again I am not saying if you are at a point you can't walk or your quality of life is bad and you need this to walk, function, etc., etc. ... but not my case! I needed it to function but more because I was addicted and had a dependency that a doctor never explained to me ... or said be careful with this narcotic ... Look how many people are dying from prescription medications! Well NOT me. If HIV/AIDS has not killed me in 20 years ... these pain killers sure will not! I chose to LIVE!



Note: The Well Project advises any changes (stopping or starting) in medication to be discussed with a health care provider.

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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

Reader Comments:

Comment by: Ross (Palm Springs, CA) Thu., Mar. 14, 2013 at 9:27 pm UTC
It was great to read everyones experiences. I too have had PN for over 15 years. I believe it started with my first drug combination of Zerit, AZT and 3TC. Both Zerit ant AZT have been proven to predispose one to PN. Within 18 months I could not walk without a cane. Although my medications have been changed several times, I have never had a detectable viral load nor T'Cells below 350. But my PN has just progressed to the point that it is all the way to my knees, and in my hands and fingers too. I wake 4-5 times each night with cramps so hard that my partner has to follow me around the house as I try to walk out the cramp and try to massage me as I go. It's amazing how much pain you can learn to tolerate without tears. I refuse to cry anymore, it upsets my partner, my Pets and doesn't do a thing for my pain. I too first tried medical marijuana, but rapidly became a "stoner", that's one drug that I cannot control. I take time release MS Contin and 30mg Oxycontin at night when I get the "Zoomies", that's what my "Registered Domestic Partner" "He is My Husband, darn the world", calls my nighttime "zooming" around the house trying to outrun my pain and cramps. I have tried IV Gamma Globulin weekly at $10,000 per bottle for a year (there went my retirement), weekly nerve blocks, acupuncture, meditation, the list goes on. The best I can do is watch how much narcotics I take, I too have gone cold turkey 3 times, but now have a great doctor who understands that when I get to what I call the "stupid level", it's time to grit my teeth, cut down on my activities, which are only going to the gym and short walks in the neighborhood, and titrate my dose back down and start the cycle over again. I do have to say the moving to Palm Springs for the Heat has helped my pain, but no place is perfect. We have cold winter nights (30"s is cold for me), but the hot summers make up for it. My experience: I do the best with what you can, and don't let anyone interfere.
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Comment by: Trampas G. (Vermont) Thu., Sep. 6, 2012 at 5:59 pm UTC
Excellent article--a must read for everyone!
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Comment by: Jake (Cleveland Oh) Fri., Feb. 18, 2011 at 2:32 am UTC
Marijuana was my saving grace. I am bipolar and have always had an addictive personality. When I started having pain issues I refused the pain killers, for obvious reasons, and instead used marijuana. It is highly effective and I have no side effects with the exception of gaining 5 pounds and enjoying Doctor Who reruns. Considering I am a ceramic artist who works with his hands for hours on end, I would say that is pretty astounding.
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Comment by: Travis S (Olympia Wa ) Fri., Feb. 11, 2011 at 2:19 am UTC
I am so great full for your input I háve been in so much pain but fearful of addiction. I went through detox myself at thirty but the pain is great and 1500 milligrams of tylonal doesnt even come close. Any suggestions?

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Replies to this comment:
Comment by: Aidan (Pittsburgh, PA) Wed., May. 4, 2011 at 8:14 pm UTC
Hi Trav, Sorry you are in so much pain. Noticed that you are taking tylenol for your pain, and wanted to mention one thing to you: because tylenol is an over-the-counter medication, it is not necessarily safer than those prescribed by a doctor. Be careful to read and follow the instructions and NEVER exceed the maximum dosage. It can be deadly. Also take care when taking some combination medications such as NyQuill and AlkaSelzer than also contain Tylenol and can tip you over that maximum amount. A pharmacist will be your best source of help. By the way, prescription pain medicines are often safe and effective. Nearly all medicines that have been used over a long period, need to be withdrawn over a period of time. As an example, suddenly stopping certain antidepressants can be deadly. Think of toothpaste. The flouride that strenthens your teeth today, has to be used again tomorrow, and so forth. When you start sticking it up your nose or arm, look out! Seriously, there are many instances that opiate and similar drugs can really make a difference.

Comment by: aaron m aker (Poland, IN) Tue., Feb. 8, 2011 at 3:48 pm UTC
Magnificently said!!!!
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Comment by: Tony C. (Los Angeles, CA) Fri., Feb. 4, 2011 at 2:12 am UTC
Maria--I deeply sympathize with you over the pain you've incurred from the effects of HIV infection, but your experience with meds is not universal. Many might report that their access to pain relief has been major in improving their life quality. I have been poz 30+ years, and endured all the early opportunistic infections as well as side-effects from the Rxs which got us to this point. My bouts with neuropathy felt like I'd been sleeping with a tiger in heat, my legs hurt incessantly. Then, after becoming an SSDI recipient and losing access to personal transportation, I incurred a slipped disk standing in a crowded bus on my very 1st Metro outing. Then it was discovered that due to bone softening, my spine was permanently curved which of itself was a major source of pain. I won't bother to list all the maladies which beset me, except to mention that I also acquired ulcerative colitis, probably caused by constant subconscious expectation of a hideous demise just like I'd watched every single Gay man I knew suffer thru. My MD prescribed Dilauded and Norco. I took Dilauded for 4 years, concluded that my symptoms had somewhat abated so, fearing I'd become tolerant to pain killers and nothing would be be able to assist me in my dying agonies, I asked my MDs to downgrade me. I was given Morphine and Norco which I remain on today. I've attended 12-step meetings to support friends, and know that philosophy well. Though everyone at those gatherings seemed eager for me to "cop" to being an addict, I searched my soul and could not find an honest connection. I may have a physical tolerance for the meds; my mind is quite aloof from them and I frequently forget to take my prescriptions although in pain. My mind remains clear. I obsess more about running out of Serostim than from where my next "fix" will come. I now believe that, like being Gay, left handed, blonde, etc., addiction is a trait some are born with. I hope you continue to prevail in your dual struggle!
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Time to Show My Face and Take the Stigma Away

Maria T. Mejia

Maria T. Mejia

I am a Colombian female who lives in Miami, Florida. I've been positive for 20 years. Although almost all my life I've been in long-term relationships with HIV-negative men, I am happily married to a woman who is wonderful and caring. We have been together almost three years and she is HIV negative. I have no children but we will look into having! I am an activist, a peer educator, a caregiver. I volunteered for the Red Cross in education for the Hispanic HIV community and also the American community. I was a pre- and post-test counselor. I have spoken in many conferences and done a lot of outreach in the community, especially in the schools for prevention and education. It is part of my everyday life to educate everyone I can on this subject. Being HIV positive is nothing to be ashamed about! We are strong women, and we will take away all the stigmas slowly but we have to open up.

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