arnoemily Posted November 19, 2010 Report Share Posted November 19, 2010 My name is Emily and I am posting for the first time, however, I have been a regular reader. First of all, I am sorry for anyone out there who has to deal with any type of dysautonomia. It is one crappy lifestyle. I was diagnosed with POTS at Mayo last October, but I have been sick for four years. I have the post-infection type of POTS. About 18 months ago I got Mono, on top of already having POTS. As you can imagine, it was a horrible case of Mono (it is not the infection that gave me POTS). Around that time I started experiencing pain all over my body, but especially in my legs, flank area and rib cage area. I mostly blamed the mono and assumed it would go away. I started taking Norco and that seemed to be the only relief I could get. Here I am 18 months later and I am taking an insane amount of Norco just to make it through each day. More to make it through the night - nights are the worst time for me. I have seen pain specialists who gave me medications that made my POTS symptoms worse. Because I can not find a local doctor who even knows what POTS is, it is hard to trust the meds they give me and Norco seems to be the only thing that relieves my pain.My question is, are any of you in this kind of pain? I am talking an average of 8 out of 10 all day and that is with the pain meds, can't imagine what I would do without the pain meds. It feels very flu-like and includes nightly fevers. Anyone out there that has this everyday pain, please let me know what you have done to live a normal life because I certainly am not. Thank you for your time. Quote Link to comment Share on other sites More sharing options...
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