Ehlers Danlos vs. Fibromyalgia, Chronic Fatigue, Lyme, etc.

[Zurie53225]

One thing to bear in mind, I have EDS as well and was misdiagnosed with FMS, is that is usually goes hand in hand with dysautonomia. Dysautonomia causes small fiber peripheral neuropathy in a lot of cases, mine was finally made by the proper doctor who did a biopsy of my nerves in three different places. Please research the two and contact me if you have questions. I saw many doctors before getting a proper answer.

[YoMags]

excellent comment, Zurie. thanks.

[YoMags]

ask around because eventually someone may know someone you can go to for a diagnosis - awareness is growing...

[jessi1971]

My pain management doctor diagnosed me with myofacial pain syndrome and fybo, he wont send me to a nuerologist or a reumotologist, he just gives me pain meds andsnds me on my way, so I will never know if I have anything elselike this

[Erren1234]

EDS can also cause the following: 1) Chronic nausea (that has no other cause i.e. 'functional' 2) Palpitations 3) Dizziness and blackouts 4) Panic attacks and phobias 5) resistance to local anaesthetics (e.g. @ dentist) 6) Clicking jaw joint with pain or subluxation 7) acid reflux 8) easy bruising 9) unusual scarring 10) varicose veins 11) flat feet 12) long arms; long and thin fingers EDS= abnormal connective tissue=unsupported cells (including nerves)=pain etc etc etc

[YoMags]

I hope you get some definitive answers soon - it's not acceptable for you to be bounced around like this, and miserable trying to get some relief at the same time, too. May you get some relief even sooner. Blessings to you.

[FIBROatFOURTEEN]

i am hypermobile and in the feb of this year was diagnosed with fibromyalgia and then later it somehow was changed to chronic myofascial pain on one letter...

we have not been happy with my diagnosis and are now looking into EDS as we think it might the the reason for my pain etc...

thanks for posting this video xx

[ecftube]

Wrote a very comprehensive Lyme brochure with the help of 2 Lyme specialists. Will email to anyone.

Elaine in VA

[ministoked]

i was diagnosed at 13 with EDS and the fatique and joint pain was my biggie i has eds and arthritis

im 14 now

[Enya727]

Yet another great video from Mags. Thanks Mags. I was diagnosed with EDS in Nov. 2007. My biggest problem now is getting the doctors moving on treatment. They are supposed to be getting me started with physical and occupational therapy. But here I sit 4 months later, still in pain. They tried me on neurontin but I can't take it. I also so have fibromyalgia and hypothyroidism. My doctors believe that in many cases they coincide.

[Halobitt]

I've had a lot of "unexplained pain," which the doc thought might be fibro, but a rheumatologist thought it was just a clear case of "joint hypermobility." This didn't explain the sore skin though, sounds like it could be related to EDS.

A lot of these things seem to be closely related.

[JadyDavisTV]

wow, I have lyme and I've never heard of EDS. Thanks for sharing :) JD

[ReineDeLaSeine14]

Thanks for this video. I was misdiagnosed as having ALL those conditions until i found out i had EDS after seeing a geneticist. Some docs still believe i don't have it. Thank you for raising awareness...and i'm glad and lucky to be one of the 20% who has been diagnosed with it.

[youngmoodyfan]

I was almost misdiagnosed with OI because I had blue sclera! But I was incredibly blessed to be diagnosed at age 18 months, growing up in a family aware of the problem, my parents always taking the necessary precautions to prevent dislocations and other injuries or minimize the damage once they occured. I realize now what a blessing that is, when 80% are never diagnosed at all.

[cass600]

Go to endf's website whether you're a patient or physician. They'll help you find a proper geneticist in you area.

[cass600]

AS a med student with EDS, I'm fighting the fight from within the system. Many doctors are frightfully unaware of the varied and severe consequences of poorly-managed (or flat out misdiagnosed) EDS. Despite my spot in the inner circle, I'm still met with rolled eyes.

EDS patients can do a lot more than whine. Our quality of life can be greatly improved by proper care. But a proper diagnosis come first.

[YoMags]

My mother (labeled "an hysteric coddling a perfectly healthy child") helped me thru years of emotional and physical torture from countless doctors. My muscles kept my joints (painfully) in place into my 20s. Eventually I began to dislocate and an Osteopath began prolotherapy. 10 years later (at age 35) I heard the words "Ehlers-Danlos Syndrome."

[Just an example of the chance that you can receive proper treatment even w/o diagnosis.]

[Elfins]

Keep fighting the good fight, awareness is everything when ignorance is abound :( As you may know my dd is severely affected by Eds and myself has the lovely title of FMS and Osteoarthritis, yet was extremly hypermobile when younger. Time and time again this incideous condition is mis-diagnosed and the more of us that speak out the better.... Well done :)

[Englander72]

Hi Mags. I'd not heard of EDS before - proof that your videos raise awareness :) I'm pretty certain that what is now labelled 'chronic fatigue syndrome' is actually a group of illnesses, some known, some unknown, all lumped together under one name.

Best wishes,

Jon

[kaazoom]

Thank you for making theses videos about Ehlers Danlos syndrome. It sound's like yet another little known illness that is difficult to get a diagnosis for. Using Youtube to bring attention to these conditions, and providing a meeting point for other suffers of disability is so important.