Ehlers-Danlos Syndrome Support Group

Being tested for EDS is NOT invasive OR expensive. Perhaps your doctor is referring to the skin biopsy test that is done ONLY if you are suspected of having the vascular type of EDS. All of these things would be covered by insurance to a certain extent, depending on your policy.

During pregnancy your joints will be particularly loose, so do take extra precautions to protect your joints.

Please check out the information found on the Ehlers-Danlos National Foundation's website: www.ednf.org

I was diagnosed (at age 35) by one of the EDS Specialists at Johns Hopkins in Baltimore. He checked me thoroughly from head to toe, then checked my skin in depth and then manipulated all of my joints to see if they either hyperextend or "float" outside of a normal range of motion.

My type - the hypermobile type can only be diagnosed through an EDS expert with hands-on experience. They have not yet identified the genetic marker for the Hypermobile type (the most common form of EDS).

With all types of EDS, joint pain is very common – and it tends to increase when your level of previous activity slacks off. Sometimes muscle toning helps reduce pain because the more toned ones muscles are, the less severe the joint subluxes or dislocates – but toning must be done carefully so as not to hyperextend or overstress the joint – sometimes splinting and/or deep water workouts help with this too. Just some quick ideas: use moist heat, light massage, acupressure, acupuncture, supplements that can help reduce muscle spasm such as magnesium (which also makes the digestive tract "looser" so keep that in mind) and/or inflammation (which should be suggested and monitored by a doctor), soaks in a hot bath, topical pain relievers such as capsaicin, etc.

If you are seeing an Osteopath or Chiropractor make sure you insist that they do your adjustments GENTLY or you could be doing further damange to your joints.

Best wishes to you,
Mags

my chiro is very gentle with me he is the one who discovered my hyper mobility. it was just so normal to me and my family i didnt think anything of it until i went to him for pain relief for back pain (previously diagnosed with sculiosis that came n went) the chiro said i tend to sometimes have spondalthisis as well from time to time. he learned quickly what worked n what didn't or id be back 10 min after leaving the office lol...

the only massage that does anything for me due to how tight my muscles get is deap tissue.


and yes i do believe he was thinking of vascular type test but i doubt thats the type i have if i do at all.

my health coverage well i live in Canada so whats not covered by the province I have two blue cross coverages.


think ive been to that site before when i first heard of ehlors.

looked at the criteria and ya classic sounds like me. vascular sounds like my mom and one type sounds like my cousin(cant remember what one she had clubbed feet n such at birth) ...

maybe i'll print the website off for my doc to read for next time I visit lol.

asfor joints being lose during preganacy yikes i know 10 min max of moving around before i need to sit.

i was diagnosed with hypermobile joints and vascular, but it was by no means invasive, and if you do get the skin biopsy then yes it is expensive. i was diagnosed with hypermobile joints when i was born, when i first came in to the world, i had extra skin, dislocated hips, dislocated shoulder and a dislocated elbow and the doctor at the time thought about eds and did tests and found i had it, i was then further tested for the other kinds.

sadly for me no help is helping me, i do compete in swimming at national levels which seems to help alot, i got my qualifications for disabilitie swimming which helps me alot. i will be trying out for material arts when i get over my recent injury, i know sports that should never be attempted by us people but i saw a guy with eds who does material arts and he will be training me, so its all good. if you guys need someone i am here.

My mom got a dx from a rheumatologist. However, my pain management doctor was also very familiar with the disease and I think would be able to diagnose it as well. Keep trying, because there are docs out there, and it doesn't have to be incredibly expensive.

i got the DX from a G.P. who treats biotoxin illnesses and so sees quite a few of us. He was doing some further research, but I have not heard his results yet. The testing was nothing more than the usual hands on the floor - that sort of things.

Oddly, with my hip popping in and out so much lately, I put on some high heels for the first time in weeks and danced last night. It worked! The hip is good again. Wearing heels helps move my center of balance forward a little bit. Dancing makes me stand up straighter. And everything (shoulders and spine included) fell back into place again. Yayyyy. It's a little tough to explain to folks why I use a cane one day and dance the next, but I'm sure glad to still be confusing!

I went round and round with doctors because (read my profile) I had struggled with symptoms my entire life and now my children were beginning to suffer the way I had and I needed answers! They finally sent me to a genetacist and they still didn't figure out what was wrong until I needed an MRI for my shoulder that continued to dislocate. I had tendonitis, bursitis, and a ganglion cyst. The genetacist called me to come in along with all three of my children and EDS III Hypermobility was diagnosed based on medical history and physical exam. No pain, not expensive. He gave us great advice that we have followed the best we can and it seems to help. Good diet, stay active (low or no impact exercise like swimming, cycling, rowing, etc...), some strength exercise (ball, bands, etc...) and try to prevent injury. The hardest part is dealing with the pain and fatigue not just with myself, but with my three young kids... A lot of love, sympathy, and understanding... Good luck, lylajean

thanks to all. im still on the road to getting a proper diagnosis just moved to a new province so i need to find a doctor i like here first. my family doc back home thinks that my hyperflexibility is somehow related to lupus i did test positive for ANA... dunno going to get a second opinion asap.

as well in recent months ive noticed my daughter who is only just 5 mo old has clicking in her joints and sometimes her back will even crack from normal movement. and im pretty sure she is too young to have an auto immune disease already.

I am sort of in the same boat with the whole diagnosis thing. I'm in limbo right now waiting to see the right doctor to diagnose me.

If anyone knows of any good docs in the central ohio area that would be great!

I've had problems with loose, unstable joints all my life and now it's starting to become extremely painful which is what has finally prompted my doctor to look into EDS. I want to make sure I see the right doctors so I get the proper treatment. I pop my ankles out several times per day and my jaw the same. I also have POTS....its all in my profile. So if anyone has good advice about which type of doctor may be best to diagnose and treat, I would really appreciate it. I see a sports med doc next week about my ankles and a possible ligament tightening surgery, although I would like to try physical therapy first. Anyway...I could ramble all day.

I would love some input from those of you who have more experience in this area! My daughter is also starting to show signs....she has dislocated both elbows numerous times since she was about 6 mos old and she is now 3.

Thanks all!

Never too young to have EDS... As a matter of fact... If one has EDS, they were born with it, but often don't know until the symptoms show and progress. Some children with EDS are born with dislocated hips... A genetacist diagnosed myself and my children... We are all a freak show with our flexability, which can be fun, but the pain in our knees, ankles, hips, shoulders, etc... is definately not fun... You name the symptom of EDS III and I have it, so we are careful with our children so they hopefully don't go through as much as I have...lylajean

what i said she may be too young to have already would be lupus an auto immune disease. not EDS if that's what we have. well im getting a big grin from beside me so i shall go play with her a bit.