Pots And Pain

[arnoemily]

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.

[sandymbme]

I too suffer from chronic pain that seems to be associated with my POTS. I actually had tremendous relief and good results going through a four week pain rehab program that incorporated physical therapy, education, and group counseling. Unfortunately my health has deteriorated at a shocking rate over the last six months or so, and with my failing health my pain is definitely on the rise again. But I would encourage you to seek out a physical therapy based rehab program. The painkillers can cause a variety of complications over the long term, not the least of which is increasing tolerance leads them to be less effective, requiring higher and higher doses. And practically every doctor I have ever consulted on my POTS (and I have seen some of the foremost experts) agree that exercise is vital in maintaining optimal health with this syndrome. I have to use a fair amount of narcotics myself these days to manage my pain, but I know that I got better results overall with physical therapy and plan to get back on that horse as soon as my body cooperates!

Sandy

[Ashelton80]

I would have to agree with Sandyshell about the rehab and exercise. One other thing that I have recently noticed with my pain levels is food. I am slowyly figuring out what foods my body does and does not like. The typical allergen foods such as wheat (all grains for me) and dairy and two common culprits that will cause me pain all over my body. Sometimes it's achey and sometimes it's shooting and sometimes it's a burning pain, but there are usually triggers. You have to take that food away for at least two or three weeks to get a good idea though.

[Sarah4444]

Hi Emily - I'm afraid I won't be much help at this point, but pain has been a huge problem for me for decades. Alongside, I now realize I had POTS too (that was probably the reason I had to walk around bent at the waist during exams in university one year because I was so dizzy...). Anyhow, most of my pain is in my back, which confused things for me as I was in a bad car accident in the late 80s and injured my back - but over recent years I also developed knee pain after hurting my knees - I wonder if my joints' reluctance to heal properly has to do with the connective tissue disorder I have.

However I also get another "kind" of pain that doesn't always seem related to activity/joint use, and it is in my hips and legs. What is strange though is that even though my POTS has been very severe recently, the pain has been less severe this year than it has been for a very long time - actually that's not accurate - it's still severe, but less frequent. I haven't got any of this sorted out yet - my OI is so bad I am focussed on that, but I suspect it's all related somehow. To make things more complicated, it seems very similar in location and sensation to the bone pain described by people on the mast sites. (Oh yeah, I also had mono?/Epstein Barr in the late 80s)

[emadden514]

Hi Emily,

I'm sorry you are dealing with this. I have had this type of pain since having Mono accompanied by jaundice in 1997. It is worst when my gastroparesis is bad, when I'm over tired, when I have period, eat the wrong thing (like pasta with sauce) etc. The only thing I've been using is lexapro for my visceral pain. I think I need to have the dose upped though. When it is really bad nothing at all relieves it. I'm sorry to say I've learned to deal with it. I am still going through the work up to see why I have POTS. Due to my severe abdominal pain and GI issues, they are checking for autoimmune autonomic ganglionopathy. I'm sorry I don't have a ton to offer. I do wish you luck and some relief though. Take care.

Elizabeth