@A myHIVteam Member. I'm afraid that once an area is targeted for inflammation, by say the presence of the virus, it continues even without the presence of the original virus.

Like long covid, the immune system targets the lung tissue due to the presence of the virus. It targets specific proteins in the lung tissue. The inflammation of lung tissue continues, even when the virus is gone.

To stop the inflammation, immunosuppressants are given. Having HIV makes doctors reluctant to impair your immune system further. Does that sound familiar? Have you been put on something like prednisone, or NSAIDS (both anti-inflammatory)?

General anti-inflammatory drugs might be avoided by your doctors now, especially in the long run. There are now highly specific immune suppressants... monoclonal antibody drugs. They target specific proteins in the chain of reactions that produce inflammation.

This might be an option for you, if it hasn't already been considered. Good Luck, buddy 🍀

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A myHIVte...

Exercise does help me with neuro pain but I have to be very carefull to not over do it. I have to walk a lot with my job and have had to learn my limits and then just do desk work. You may want to look into the article of how HIV crosses over the barier in the brain and causes many of these symptoms. This is what happened to me on 1/01/13 and I was paralyzed competely, after 23 days I got upper body function but it took 10 months before I had any lower body function. Finally I learned to walk with braces and crutches utill 8/2018 when surgery on my knees 1 replacement and artho on the other 6 months of PT before and after surgery now can walk okay but have to be careful still. This is not medical advice just my story.

@A myHIVteam Member, I have just read the following advice from one neuropathy sufferer to another:

". . . Marijuana after the public overwhelmingly voted for it although it has been a political football ever since. A few licensed retail stores have opened and I was able to buy the gummy edibles. They work wonders. I am sensitive to them. Each square has 25mg. THC in it. I cut them into thirds and take one third a day. It is like a switch and stops the tingling, the involuntary twitching, and shooting pain without the other effects of being high. If I took an entire square I'd be woozy and wobbly, high as a kite. I recommend you get Marijuana edibles and take only what you need to have it be effective."

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A myHIVte...

Wow @A myHIVteam Member and @A myHIVteam Member. You guys are true survivors! I'm not sure I could handle what you have endured. Then, again, nobody volunteers for months of rehab. Rehab chooses you.

I've seen my partner go through multiple surgeries and joint replacements. He is a real trooper, always pressing forward with optimism. Even now, at 88 yrs, he still gets up and into his day with struggles that would tire the best of us.

That is why I support him as best I can. Neither of us is going to give up.

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A myHIVte...

A myHIVte...

@A myHIVteam Member, thanks for your response. Mine is a CNS-related problem, or "sensory", as @A myHIVteam Member has suggested. Physical and mental activation or excitement exacerbates it.

1 year of Vit B12 as a daily supplement has not helped, though my clinic hoped it would.

I am going to try supplementing Palmitoylethanolamide (PEA) and Alpha Lipoic Acid (ALA), both of which occur naturally in the body. If they help, I will share here in a few months' time.

@A myHIVteam Member, I will look into esketamine. Thank you!

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A myHIVte...

A myHIVte...