erikainorlando Posted May 12, 2009 Report Share Posted May 12, 2009 Hi.Just have to ask...I have pain many many days. Aside from the chest pain...I since the beginning of this POTS thing I have had pain in my hands running up my wrist, my leg muscles and hip joints. I also have pain in my butt muscles and lower tail bone. Should I get tested for fibromyalgia? I have less pain when I am rested and haven't stood up or done very much. I think it "all" seems to get better when I lay down. I feel like I have been run over by a bus....sometimes everything in my body hurts along with all the chest discomfort. Any input is appreciated!! Erika Quote Link to comment Share on other sites More sharing options...
Megan Posted May 12, 2009 Report Share Posted May 12, 2009 I get a lot of POTS pain, the feeling like you've been run over by a bus that you describe. I don't have it every day; if I'm having other POTS symptoms, I'm more likely to have the pain. It doesn't go away when I lie down, unfortunately. I've talked to my doctor about the pain and what's normal (for me) and what isn't, so I know when I should be concerned and call for an appointment. I'd suggest that you be sure to mention it to your doctor in case it is more than just POTS pain.Meg Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted May 12, 2009 Report Share Posted May 12, 2009 Hi,I have a myofascial pain syndrome that mostly affects my neck, shoulders, face, and head. I know that many times dysautonomia and fibromyalgia exist together, but there are specific diagnostic criteria for fibromyalgia. If you can afford to see a pain specialist, they might be able to make the right diagnosis and offer you some treatment options like PT, medications, acupuncture, etc. Good luck!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 12, 2009 Report Share Posted May 12, 2009 The worse my POTS symptoms are in general, the worse pain I have. Like Broken Shell, much of my pain is myofacial and I see a PT who specializes in myofacial release and it helps with the worst of it. Basically she releases tight muscles and relaxes the facia, which is a layer of tissue that runs throughout your body just underneath your skin. I haven't pursued a diagnosis of fibromyalgia mostly because there isn't anything more to be done for me if I have that diagnosis. I'm lucky to have a cooperative PCP who will prescribe something if it might help.I am also mostly affected in my head, neck, arms, and thoracic spine. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 13, 2009 Author Report Share Posted May 13, 2009 Thanks guys...I am going to talk to my PCP regarding some further testing...it is not everyday...well...it is not bad bad everyday... Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 13, 2009 Report Share Posted May 13, 2009 i have it all too and live in chronic mulit focal pain. Now have pain in L4 and 5 in lower back budging disk with tears from falling. My legs hurt SOOOOO BAD I WANT TO SCREAM. My meds don't take the pain away. Worse at night in bed and I must remember to look into that virus Jennifer told me about and have the doc check it. i have ouchies all the time. with fibro a little jab from someone feels like a punch. when in doubt, check it out! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 13, 2009 Report Share Posted May 13, 2009 I came down with Ankylosing Spondylitis a month or two out of the blue after I got POTs out of the blue - it can be pretty painful but most days id take the pain over the dizziness, but then when AS flares up i wonder why I hate POTS so much... POTS is a common feature of Fibromalygia (sp?). I believe they investigation the inflammatory activities of TNF alpha, Substance P and Calcitonin gene related peptide in Fibro and in POTS where inflammation is implicated as a cause (through an increase in nitric oxide in the stomach area). Quote Link to comment Share on other sites More sharing options...
Lgamez3 Posted May 15, 2009 Report Share Posted May 15, 2009 I have days that my joints hurt so bad that I can barely sleep. My knees, hips, elbows, and shoulders are the worst. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 16, 2009 Author Report Share Posted May 16, 2009 Did yout doctor say this was related to POTS...? Thanks!! Quote Link to comment Share on other sites More sharing options...
yogini Posted May 16, 2009 Report Share Posted May 16, 2009 I'm not sure that pain is a part of POTS itself, but it is common with other conditions that POTS people often have - you may want to read old posts on EDS, fibromyalgia, Lyme disease - I am sure there are others too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 16, 2009 Report Share Posted May 16, 2009 I think patients with Fibro tend to also have POTS. Whether their POTS is secondary to Fibro seems a little unclear. But some POTS patients dont have Fibro.I thought I had Fibro but i soon found out I had comorbid Ankylosing Spond. My doc said that in woman AS can present similarly to RA or Fibro so perhaps if you were interested in checking that out there is a gene for AS. Just an aside. There is one form of POTS that seems to be being caused by an inflammatory response in the stomach - inflammation is also implicated in CFS and Fibro so there could be a common causal factor in there somewhere. Quote Link to comment Share on other sites More sharing options...
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