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Author Topic: Frusterated  (Read 971 times)

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Offline cassidj

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« on: June 23, 2011, 11:12:52 PM »
I have been going through an ordeal since February.  I have ben poz for about 11 years and am taking Atripla exclusively.  I caught what I thought was the flu in February, with all the symptoms leaving a couple weeks later save for one...pain.  I have widespread, chronic pain that is dull and moves from one part of my body to another but always affecteting the mirrored side, if my right arm hurts so does my left.  I have been tested for everything under the moon, from countless blood tests to several visits to specialists such as nuerologists who have prescribed pain medications that work somewhat but still leave me with dull pain that is sometimes so intense that I cannot leave the couch for a day.  My long time doctor seems to have given up without finding a cause, attributing it to a possible viral infection.  I decided to see another HIV specialist and he is questioning whether it is HIV related or something that I would have experienced without the virus.  I have searched endlessly for similar cases and find so much that matches what I am going through but when tested, I am negative.  I am rather new to this site but am hoping that reaching out here can give me some new suggestions.  Thanks for your time.  -Joe

Offline Jeff G

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  • How am I doing Beren ?
Re: Frusterated
« Reply #1 on: June 24, 2011, 12:05:44 AM »
I have been dealing with chronic pain syndrome for about 16 years . I have no way of knowing what is causing your pain but some of what you shared seems familiar to me .

I also visited many doctors and had countless test and even saw a psychiatrist . I told the psychiatrist if the pain was all in my head then he had permission to remove the head . I finally got a diagnosis that my pain was caused by small nerve neuropathy .

My neurologist told me she has seen many people with HIV suffering from chronic pain that has been ignored or sent to one specialist after another before finding out what the problem is . I did figure out on my own what ever was causing my pain was not going to kill me , it just made life miserable some days . I think this kind of pain is more common amongst us living with HIV than has been reported or discussed . 

Its hard to ignore or live with chronic pain because pain is a warning signal that something is wrong and that's really unsettling as well as painful .

Maybe mention small nerve neuropathy to your doctor and see if the symptoms fit . Good luck .
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