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Fibromyalgia Misdiagnosis is Common For Ehlers-Danlos Patients

May 29, 2016 9:33 AM

Long story short, I have Ehlers-Danlos Syndrome ("EDS") Type 3 (with classic features as well), but had previously been misdiagnosed with Fibromyalgia. Sadly, this situation is extremely common, so I urge *everyone* that has been given a Fibromyalgia diagnosis to look into EDS. It seems to me that Fibro is a catch-all diagnosis for Doctors that can't figure out what the heck is really wrong!

May 29, 2016 4:19 PM

Thanks for the tip. Is there a medication for EDS?

May 29, 2016 5:37 PM

There is no cure for any type of EDS as it's a genetic disorder; specifically of connective tissues. As such, medication focuses on treating the symptoms, and is dependant on the type of EDS one has. I have Hypermobility of all joints to varying degrees, which causes early degenerative changes (arthritis, disc herniations etc ), hence pain. These issues are treated with Pain meds of various modalities, anti-inflammatories, Physical Therapy, and Surgical Intervention. I would guess that stem cell therapy could be useful, eventually, if anyone cared enough to do research; EDS is considered rare only because it is grossly underdiagnosed and misdiagnosed.

May 30, 2016 1:50 PM

Gumydamnit, I have to thank you for that information. I have found more often than not with people I know or have known personally, fibromyalgia was diagnosed because the doctors couldn't find anything else. I think that there is validity to the disease but the symptoms are so much like other diseases. I was diagnosed myself and also have a laundry list of other autoimmune issues. I just wish there was a way that doctors could be absolutely certain when they diagnose patients with fibro that they actually have it.

May 30, 2016 2:15 PM

You're right, Alwayzinpain, there is definite legitimacy to Fibro, & I hope no one feels I'm dismissing it. I do have exquisitely tender points all over my body, but it doesn't fit the Fibro pattern. It's for this reason that I was surprised and angry when my former Pain Doc gave me the Fibro diagnosis without even telling me (especially since trigger point injections didn't work! ). I'm fortunate to have a medical background to facilitate discovering what the real problem was. Seek a specialist merely to confirm ones own diagnosis is really sad; how many people fall through the cracks this way? ;-(

May 30, 2016 4:36 PM

I'm also diagnosed with fibro, but I recently found EDS and I've talked to my doctor about it and now I am being referred to a specialist to differentiate between having fibro and EDS. Personally I think that EDS matches more of my symptoms than anything, but I do also show a lot of the fibro symptoms including trigger points, brain fog, etc.

May 30, 2016 5:21 PM

Yeah, I have those symptoms too. If you do have EDS, however, you could also have life threatening problems as well (depending on your type). I'm so glad you're going to be evaluated!

May 30, 2016 6:00 PM

I'm thinking I most likely have the Hypermobility type of EDS, because I am double jointed and I think I showcase only a few skin symptoms, and haven't already had major health problems that would indicate any other type. At this point I'm honestly hopeful I have EDS! I've been experiencing pain for as long as I can remember, and I've been visiting doctors about it since age 10. I'm hopeful to finally get a diagnosis after so many years (I'm currently 18)!

Jun 01, 2016 1:21 PM

Bethanylayne, such a young age to suffer with so much pain. I keep seeping more and more people that are younger and younger dealing with chronic pain issues. I don't understand it and it breaks my heart. I hope you get the answers you need so you can get some treatment and relief from some of that pain. {{Hugs}}💕🙏🏻🌻

Jun 01, 2016 2:26 PM

Thank you so much for the kindness! I've seen a lot of younger people with chronic pain issues too, and I really don't understand how it's happening. I guess pollution and genetics probably have a lot to do with it. I hope you're doing well!!

Jun 01, 2016 2:38 PM

Thank you so much bethanylayne. I'm hanging in there best I can like the rest of us pain warriors. Sending {{{Hugs}}} and prayers for a better day.💕🙏🏻🌻😊

Jun 01, 2016 7:22 PM

Bethanylayne, thank you for sharing this. I have fibro but didn't know there might be a connection to EDS. I know many on here have it but I don't know much else about it. I agree with you that many docs throw out fibro either when they're tired of looking or too lazy to look. Thank you again, with hugs & prayers! 🙂💕🙏🌼

Jun 02, 2016 12:04 AM

Agreed. I started having pain at 22 years old, had no idea it would become chronic then. I don't know anyone else personally who has had this level of pain in my generation. I am becoming more comfortable with sharing and being open about it and not pretending to be fine. This group is very valuable! Thank you!

Jun 03, 2016 6:03 PM

I have also been dx with Fibromyalgia and have a genetic appointment on Tuesday for EDS dx... I have heard that Fibro dx will be taken away and some say they have both....

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