arnoemily

Hi everyone, I have posted a thought like this before, but how many of you are suffering from chronic pain with your POTS? I am being told that it is due to fibromyalgia but has anyone else been told that they have another reason for the pain. My Nuero Doc at Mayo Rochester says that pain isn't part of POTS, but Dr. Goodman disagreed last year. Can people comment on their pain and the reasons their doctors felt they had pain? Thanks!

Hi again, My name is Emily and I have POTS. I am currently in Rochester for the past week trying to find out why my POTS has not improved at all in the past 4 years, in fact it has gone in the opposite direction. I met with Dr. Sandroni (not the best doctor, btw, very cold, doesn't answer questions and leaves you confused). After switching to Dr. Low, the two doctors agreed that I also had Fibromyalgia and Chronic Fatigue Syndrome. Somehow, I got into the Pain Rehabilitation Program starting next Wednesday but I am feeling very nervous about the program because I don't feel like I have had enough testing to prove that I have these syndromes (besides POTS) and I am going to have to get off of my pain killers which will be very difficult with the amount of pain I am in. I am just terrified of failing this program. Also, I guess terrified of doing the program since it seems so unknown and so sudden. Has anyone completed this program? Was is successful after the 3 weeks? I desperatley need information asap so I can make the most educated decision. I just don't want to make a mistake and fail at this and dissapoint everyone around me. Thanks for any information!!

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.