Boomerang Posted August 9, 2014 Report Share Posted August 9, 2014 How much pain does POTS cause? I have been in a lot of pain for years. This week has been especially bad. My doctor just seems to shrug the pain aspect of it aside. My joints and muscles just kill. I'm mildly hyperflexible so I wonder about EDS but I don't think I'm flexible enough. I have a referral to a rheumatologist but my experience with Rheums has been very poor. I was told I had atypical fibromyalgia and to ignore it. How can fibro be atypical when it is a diagnosis of exclusion? Quote Link to comment Share on other sites More sharing options...
corina Posted August 9, 2014 Report Share Posted August 9, 2014 EDS isn't just about being hyperflexible, not that I'm an expert on the subject by any means, it's just that I've been told that many times. Reading the EDS forum may give you some answers. Also there are some very experienced EDS patients at our forums who may be able to help answer ypur question. With POTS I think coathangerain is quite typical. Welcome to DINET! Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 9, 2014 Author Report Share Posted August 9, 2014 Thank you. I don't want EDS but it would be nice to have an explanation for this pain after all these years and get into pain management. Nothing I can do touches the pain. Quote Link to comment Share on other sites More sharing options...
Goschi Posted August 9, 2014 Report Share Posted August 9, 2014 Hi Boomerang, welcome!Pain is absolutely common in Pots - as f.e. coathanger pain, pain in legs and arms when they are dependent, pain in limbs f.e. because of small fiber neuropathy.So, you definitely don't need to have EDS to get pain - "simple" dysautonomia is unfortunately sufficient to produce regular pain... Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 9, 2014 Author Report Share Posted August 9, 2014 Does this pain usually cause difficulty walking or can it? Thanks for your response. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted August 9, 2014 Report Share Posted August 9, 2014 Hi Boomerang,Sorry your doctors just told you to ignore the pain. If you could do that, you would not be seeing them, right?Pain in EDS can be widespread and extensive. It can cause joint pain, muscle pain, and nerve pain and secondary arthritis. It can cause problems with walking and getting around. Many people who were diagnosed with Fibromyalagia were later found to have EDS, myself and my mother included. You do not have to be extremely flexible to be diagnosed, the flexibility varies between patients and between types of EDS.More about pain in EDS: http://www.inthefaceofpain.com/content/uploads/2011/12/factsheet_EDS.pdfYou said that Fibromyalgia is a diagnosis of exclusion. Has your doctor ruled out other causes of your pain? Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 10, 2014 Author Report Share Posted August 10, 2014 I think they've ruled out any rheumatological issues because all my bloodwork comes back negative. I think neurological reasons have been ruled out except maybe neuropathy or something wrong with my spine. No one other than physical therapists have seen the hypermobility. So I guess EDS is a possibility. There isn't much left that I know of. But the pain doesn't seem to be like fibro. A lot of it is localized in my hips which are hypermobile. Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 11, 2014 Report Share Posted August 11, 2014 Sounds like you have plenty to look into. I do not suspect EDS, but pain has become a very big part of what I experience. I do not have pain in my joints. I do ave back pain, pain in my legs, arms, and stomach. I believe this is neuropathic pain. I have never ending mind boggling chest pain that I am yet to have managed. Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 11, 2014 Author Report Share Posted August 11, 2014 I'm sorry you're in pain. I hope they can find a solution. Quote Link to comment Share on other sites More sharing options...
gjensen Posted August 11, 2014 Report Share Posted August 11, 2014 Boomerang, I hope that you get your answers. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 11, 2014 Report Share Posted August 11, 2014 (edited) Hi BoomerangWelcome to the forum. My son is in daily pain and does not get relief from pain medications. My son is under the care of a cardiologist. He strongly suspects my son's pain is neuropathy related. My son has POTS and an underlying medical condition that has been caused by past strep and mycoplasma infections. These infections did not get cleared up and caused antineuroal antibodies to build up in his body. These antibodies can cause neuropathy problems. Normally this is a problem that only happens in children. However, from what research I have read, it looks as if this problem can go into adulthood with specific infection. Molecular Mimicry is know to cause these problems. My son antineural antibodies were found through a specific test. Here are some articles that might help answer some questions. Hope you feel better soon.http://www.japi.org/march_2010/Article_05.pdfhttp://www.actaneurologica.be/acta/download/2009-2/04-Finsterer.pdf Edited August 11, 2014 by looneymom Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 12, 2014 Author Report Share Posted August 12, 2014 Okay. Thanks for the information everyone and the warm welcomes. I see my rheumatologist tomorrow and will mention EDS and neuropathy. This pain really stinks. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted August 12, 2014 Report Share Posted August 12, 2014 Hey I just wanted to say that when I first developed pots pain was constant all day everyday. I changed my diet completely one year ago and cut out the 6 most common food allergens and all fast, processed and GMO food and the brain fog is gone and my pain has improved 85-90 percent and most days I do not have pain at all. It is worth a try it would take about 3 months before you start noticing a great change. Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 12, 2014 Author Report Share Posted August 12, 2014 I saw the rheumatologist today and he is certain I have EDS. I see a geneticist next to find out which type. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted August 13, 2014 Report Share Posted August 13, 2014 Hi Boomerang. I am glad you are finding the cause of your pain. The website www.ednf.org has a lot of resources for people with EDS including a a very active forum (http://www.ednf.org/message-boards). They just had a conference in Houston with some useful and interesting lectures on a variety of topics related to EDS, including pain management. http://www.ednf.org/conferenceIf you go over to the right and click on the conference years you will see a list of topics. I know 2012 has some pain management resources.I hope you can work with your doctors to find ways to manage your pain. Best wishes to you! Quote Link to comment Share on other sites More sharing options...
Boomerang Posted August 15, 2014 Author Report Share Posted August 15, 2014 Thank you so much!!! Quote Link to comment Share on other sites More sharing options...
TCP Posted August 16, 2014 Report Share Posted August 16, 2014 I've had ME for years and then dysautonomia with POTS came on 7 years ago. As I looked into POTS, I noted stories about people with EDS and I discounted it as I don't have repeat dislocations or stretchy skin. I then looked at the Beighton Scale and managed to do 3 of the five exercises on the chart. It's not about to what degree you have it to be diagnosed. I also have dodgy joints and pain/clicking/squelching. I also found out that having EDS predisposes people to not just POTS but ME/CFS, too. I used to dislocate my knee when I was younger. I've had the muscle/joint pain with ME for 30 years and since the POTS flared up the EDS symptoms have worsened too, including muscle stiffness. I also get small fibre neuropathy with it which brings daylong burning and prickling. I'm awaiting a proper diagnosis of EDS and POTS. Fibromylagia can only really be ruled in if the majority of trigger points show positive results. I hope you get thoroughly checked out. Quote Link to comment Share on other sites More sharing options...
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