HIV/AIDS, Neuropathy, Painkillers (My personal HELL)

Submitted on Jan 5, 2011 by  MariaHIVMejia

Well, where do I start!? I guess pain...physical and 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 addicitve 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 it'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 not only dependency! Which means if you don't take it everyday, you go through withdrawl like from heroin :(  Not everyone can do what I have done and stop cold turkey! On my own and 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...thats 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 not only this medication take away your pain but it makes you NUMB emotionally. At the start it's good, your 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 etc etc..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 medication 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 :)....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! LOVE AND LIGHT MariaTeresa Note: The Well Project advises any changes (stopping or starting) in medication to be discussed with a health care provider.

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Submitted by pendo

I am now 12yrs with the virus n still REFUSE to take ANY drug. I havent been doing too well lately but I have seen what some drugs have done 2 people back here in Africa. Our major problems are Neuropathy and Lipodostrophy. I'd rather brave on till I drop.

Submitted by MariaHIVMejia

WOW!!! Charlie!!! this is a deep situation! I'am so glad that you realized with time what really was hurting you! I have been happier ever since I haven't touched OPIOIDS :) and I still have pain! but I'am just taking ibuprofen and chiropractor ..only when needed is my thing..good luck and be blessed! Maria

Submitted by pendo

Unfortunately, prescription pill addiction is a major problem in the United States. In Florida 11 people die every week from prescription pill overdose. If we had 11 Manatees washing up on the shore and dying the whole state would be outraged. However, because people often blame the addict or the person who was taking the prescribed pills, these deaths often go unnoticed.

I believe there is also a lack of education regarding addiction for doctors. They are taught very little about addiction during their education and training. There is a lot of blame towards the person who is using; very similar to HIV. And having both HIV and an addiction problem are huge.

I am glad that you have been able to overcome your DEMONS (as you call them). It is a daily battle, a daily struggle especially when you are in pain. I wish you the best.

Submitted by MariaHIVMejia

@ gisele I hope you got all your answers! and yes as I said when you need it and their is no quality of life without the pain meds then their is no option...but the tricky thing with these meds the are basically opioids is that when you don't take them they give you more pain..I am @ almost 1 month opioid free and getting better everyday little by little :) I have endured no sleep, a lot of pain..but I take ibuprofen and the chiropractor...and now I can wake up and not have to take pills just to been a hard road! not easy ..@ Vickie I feel you on that! yes lack of education! or just plain drug dealers! well some of these pain clinics etc etc...mine just didn't care to explain to me what he was giving me 8 years ago gave me huge amounts..basically to kill someone..smh..I just think that anything they prescribe us we must research on it and ask questions! we have that right :) @ pendo as i told you before be careful and research some of the meds that are least likely to give you these side effects..reasearch my tcells came down to 39 and it was time to to your doctor and have them do your tcell and viral load count and remember just hiv alone gives you neuropathy so their is no escaping that! take coenzyme q10 the highest mgs it helps with it :) peace and love my sisters xoxoox

Submitted by celina5000

Peripheral neuropathy has been the bane of my existence with HIV. It first reared its ugly head 10 years ago or so, when I developed ocular shingles. Once, the virus had calmed down, it left me with only one eye, pain in legs and especially my feet, and I constantly now livneuropathy in arms and hands.

It's uncanny that this topic should come up today, because I have a doctor's appointment and I have to talk to him about the effects of methadone that I've taking for months now. What I've noticed is that I have sugar cravings that have me eating copious amounts of chocolate on a daily basis. My teeth are ringing and of complaints of pain and or discomfort are met with "take more"morphine....

I think, in my case, because I've been around for 26 years, long term effects of any drug aren't a priority, and assuring that I am comfortable and painfree are the priorities in my care plan. It's my children who research these drugs for me and explain as best they can the relationship between methadone, which is given to heroin addicts as a means of reducing their addiction to heroin. How does all of this fit with me? Well, thar's my mission at the doctor's for today. I'm glad you brought up the topic. As you say, if it;s absolutely required and there's no other avenue of treatment, then so be it. But it would be a good idea to explore that question, because I'm, beginning to feel the treatment might be worse than the ailment. Thanks for the heads up!

Submitted by pendo

WOW I didnt realise so many people had been through the same hell as me !...I was diagnosed with painful PN 11 years ago due to HIV medication. I was very quickly triated onto Morphine Sulphate, then with Methodone added and at one point diamorphone...At no point was it explained to me what the side affects were or that I would become addicted. As a result of the MST I started vomitting multiple times a day and therefore stoppped eating,. I was in a leading London Hospital for 6 weeks without eating and was discharged with malnutration owing to the nurses showing no interest in my intake of food. I Lost 3 stone in 6 weeks and looked like a Belsen victim. The MST removed all desire and will to live and at one point I almost committed suicide. I was put through countless tests, endsdoscopies etc etc to find out why I was vomiiting and at no point was the morhphine considered. Over a period of time I realised that it was the cuase as I gradually reduced the Morphine and I stopped being sick it took over 2 years came off it.- I have only ever been sick since when ...mmmmmm ...worse for wear--self incflicted !!!
10 years later I an relatively healty, go to the gym 4 times a week, yes I still have some pain from the PN but never touch pain killers for this...Over the years I have realised it was the Morphine that almost killed me, not my ilness and I am still angry that the medical profression are using this blunt instrument without explaining the implictions the their patients...WOuld I take Morphine again ? Yes but only if the pain was unbearable eg Cancer Pain. The PN pain I had was very unpleasant but on balance I would have rather dealt with that than the hell that I was put through on Morphine.
My support and love to everyone else who has had to endure this
Charlie x

Submitted by pendo

Hi there Maria Teresa,
I read your blog and found it very powerful. I hope you don't mind but I have used some of it and referred the readers of the post on my blog back to yours because I think it is important that what you say can be read by as many people as possible.
My blog addresses are and (the last site is also in English)

Submitted by MariaHIVMejia

hello Dave I dont mind at all! you can use anything you feel that can help others! :)

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