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Real members of myHIVteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myHIVteam Member asked a question 💭
New Brunswick, NJ

I’ve only been positive for a little over 2 years and I can already tell the difference in my health. I have pain in my legs,tingling in my head,Anal warts,eschougus issues etc etc .i kinda feel like HIV indirectly is killing me. HIV causes so much inflammation I know im getting older but im so sick of this disease anyone else feel like i do?

November 3, 2025
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Answer Summary

Members opened up about whether HIV itself or the medications cause their declining health, with many sharing experiences of leg pain,... Read more

Members opened up about whether HIV itself or the medications cause their declining health, with many sharing experiences of leg pain, neuropathy, esophageal issues, and frustration over doctors who dismiss or minimize these side effects. Several members offered practical strategies including B12 and folate supplements, magnesium, switching medication regimens when side effects become unbearable, and finding doctors willing to discuss alternatives, while long-term survivors emphasized that modern meds like Biktarvy have fewer side effects than earlier brutal regimens that kept them alive. A recurring theme was the difficulty of separating natural aging from medication side effects and HIV-related inflammation, met with encouragement to advocate fiercely for oneself, focus on what brings joy each day, and remember that taking meds consistently remains the foundation of survival even when the journey feels overwhelming.

A myHIVteam Member

Brad, the key is taking your med(s) every day as dosing requires. I take Biktarvy and I’m done for the day. I am 71 and been HIV+ since at least 2000. For me, the experience has been mindblowingly real, because I stopped taking Atripla and was med free(holiday) for almost 10 yrs. I wound up in hospital for 7 days with PCJ and almost died. Afterwards, Biktarvy has made me now U = U since 2021. I learned my lesson. This disease is unforgiving. It does not discriminate. I am type 2 diabetic, but I am genetically predisposed, so I cannot point fingers. Mild neuropathy but nothing unmanageable. I work part time, still. My mindset is I know what to do and I stick to it. Diet, exercise and a strong will should be guidelines for anyone. There are so many things Drs.won’t talk about when it comes to med side effects, etc. Big Pharna consequences I would think.
Take care of yourself and be well.

November 4, 2025
A myHIVteam Member

It's also pretty easy to lay all blame for what is otherwise natural aging on the worst that we have.

November 4, 2025
A myHIVteam Member

I also think because it's invisible, we are given less compassion and sympathy than other diagnosis. We don't look sick, most of us, so to them I believe they think the pain is in our heads. A mental manifestation of how we deal with the diagnosis.

Most of our med care is discussions about medical adherence, talks about how good we are doing about our viral load suppression or how 'bad' we are. Our labs are monitored and tracked nationwide without our permission or knowledge and most of us are left in the dark about all of that also.

November 4, 2025
A myHIVteam Member

HIV and the monitoring and medications that come along with it can also help you make some positive changes in your life that you may not have made otherwise. After you go through the period where you feel hopeless and like you have nothing to live for. You definitely have something to live for, YOU! This is the one life that you have been given. It is your most priceless gift, and you should value it above all else. Whatever you have to do to come to that realization, hop to it! Find your own happiness, whatever it is. Don't worry about anything else until you do. The purpose of life is to be happy. All else flows from that well of energy, Brad.

November 4, 2025
A myHIVteam Member

Indeed @A myHIVteam Member once we have one big disease, it is pretty easy to attribute every woe following to that one. Was I lucky to get infected so late in life? Maybe. So many of the conditions of aging had already started before. And so much of what I read here sounds more like the things I was used to before my infection.

November 12, 2025

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