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What HIV symptoms do you have that you didn’t expect?

myHIVteam asked a question 💭
San Francisco, CA
September 27, 2023
 · 
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Answer Summary

Members opened up about the wide range of unexpected symptoms they've experienced living with HIV, with sleep disturbances, extreme fatigue,... Read more

Members opened up about the wide range of unexpected symptoms they've experienced living with HIV, with sleep disturbances, extreme fatigue, and nerve pain emerging as some of the most common and debilitating challenges. Several members shared practical strategies that have helped them cope, including exercise routines (especially swimming), testosterone supplementation for hot flashes, medications like Lyrica or gabapentin for neuropathy, staying hydrated for joint pain, and catching shingles outbreaks early with acyclovir on hand. A recurring theme was the emotional toll of living with HIV, from the loneliness and dating struggles to the anxiety of distinguishing which symptoms stem from the virus, the medications, or simply aging, all while celebrating the unexpected gift of longevity that many never thought they would experience.

A myHIVteam Member

Living with HIV for 43 years the only thing I’ve ever had was thrush even though my T cell count was down to 75 for a few years. My doctors called me their miracle patient because they just couldn’t figure out why I never was hospitalized for more severe illnesses. Now at 60 I’ve been undetectable for 15 years and feel great.

October 9, 2023
A myHIVteam Member

Diagnosed positive in 2000 and peripheral neuropathy in my feet began in 2013. Chronic stage one kidney disease followed. That didn't stop me from going full time RVing in 2019. Here it is 2024 and I am wintering in South Carolina near Savannah, Georgia. I will continue to travel as long as this 68 year old body will allow.

February 9, 2024
A myHIVteam Member

Paulm3 my doctor says supplements are a waste of money you pee 90% out cause your body doesn’t need it. Eat better foods he said . The only vitamin he says that might be worth taking is vitamin D

June 3, 2024 (edited)
A myHIVteam Member

I have memory loss plus COPD, both fuck with memory. I have no idea what the future holds for me. However I will soldier on and I have a very loving son that will make sure that I am taking care of.

December 7, 2023
A myHIVteam Member

I suffered from ED but this was a result of contracting TB Meningitis 12 yrs after being diagnosed with HIV. The TB messed up nerves in my genitalia and I eventually resorted to a penile implant that has resolved my issue.

October 7, 2023

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