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

Diagnosed with fibromyalgia, chronic fatigue syndrome, lyme disease, myofascial pain dysfunction, lupus, or another spectrum disorder but still have unexplainable symptoms? Most people with Ehlers-Danlos Syndrome are first misdiagnosed as having one of these conditions. 80% of people with EDS go undiagnosed for their lifetime. Please go to www.ednf.org to download information to take to all your doctors, schools, gyms, etc. whether you have EDS or not.

[Always check with your doctor - my posts should be considered my informed personal opinion which does not necessarily reflect the official position of the EDNF or any other organization or person concerned with Ehlers-Danlos Syndrome.]

Category:

People & Blogs

Tags:

• fibromyalgia
• CFS
• MPD
• lyme
• lupus
• EDS
• ehlers
• danlos
• EDNF
• yomags
• collagen
• hypermobile
• double
• jointed

[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...

[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.

[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.]

[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

[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