Neuropathy
When I was diagnosed with HIV my T cells were in double digits and I weighed 117 lbs. I constantly was getting thrush but that's not all, I started having problems standing up and was losing my ability to walk.i found out that I have neuropathy as a side effect of having HIV. How common is this? I've known others with HIV and they don't have this issue.
Hi
. I saw your previous post and know that you certainly have overcome a lot. Neuropathy is an all too common symptom of HIV or a side effect of some medications. As this article on the topic from our editorial team notes, up to 6 in 10 people with HIV experience peripheral neuropathy: https://h-i-v.net/peripheral-neuropathy. I know a number of our patient leaders have expressed experiencing it, such as Heather Renee in this article: https://h-i-v.net/living/painful-associated-comorbidities. Please know that you are not alone and that this community is here for you. Best, Richard (Team Member) The thing is I have been trying to go about life as I have before these ailments. I'm walking 2 miles to and from work. Work in a very physical production plant. I took tonight off because it started to feel like I was walking on hot coals. Am I hurting myself more by trying to continue to do as have before?
Hi
. That is a lot of physical activity and time on your feet. I can't speak to the long-term effects of the activity with the neuropathy. We are not medical professionals and, for your protection, cannot offer medical advice. I did find this article on strength exercises for balance and gait with HIV related neuropathy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8603110/. I also want to share this page on the topic which has a sections near the bottom on Medical Management and Physiotherapy: https://www.physio-pedia.com/HIV-related_Neuropathy. I also want to note that there are a number of general sites on neuropathy that note that walking can actually be beneficial. Do you have a doctor you trust to ask for further guidance? Hopefully others will chime in with their experience. Hope you can get some relief soon. Best, Richard (Team Member)
Thank you, I have obtained a PCP and am going to see what other therapies are available
that's great! I hope the PCP can help you decide what therapies would be helpful and whether or not this much physical activity is okay, especially when also experiencing neuropathy. Please, if you're comfortable, let us know how it goes at your appointment and what therapies you hear about. -- Warmly, Christine (Team Member)
I had a seizure 3 yrs ago from my B12 being low possibly from HIV possibly from overhydrating due to work changes from Covid. I still have numbness and pain in both feet. Massage definitely helps with it. Its better now than a year ago. One other thing I have noticed is a change in my ability to temp regulate. I get very warm and cold easy. Either way I was also that sick on Bactrim for 9 months. My family made oral meds almost impossible and it made me more sick. I did my research and got on a Carbenuva injection plan and have been undetectable for 20 months after being sick to the point of AIDS. Unfortunately cutting of my family was necessary.
Hi
. So glad to hear that your new treatment has helped you achieve and maintain undetectable status. It is unfortunate that you had to cut your family off, but many here understand the need to let go of toxic relationships. Tahirah wrote about it, including family, here: https://h-i-v.net/living/let-go-toxic-relationships. Has the temperature deregulation improved since you have been on the Carbenuva? This article discusses night sweats: https://h-i-v.net/living/night-sweats. If it has continued, has the doctor had any thoughts? Wishing you the best. Richard (Team Member)
