Ehlers-Danlos

No, but did do some research many years on it - when I thought my son might have it.


He had flexible joints and was also quite weak.

No, he didn't. Not that we knew. We just noticed his elbows bent backwards...and knees. Not as bad as I've seen...though.

He also had weak muscles.

After he was diagnosed with Celiac and dropped the gluten, it all went away.


Of course, the Dr's said it had nothing to do with his muscle weakness...or flexible joints... but I disagree.
He was a teenager when he was finally diagnosed.

Something else that I just remembered - he had developed a slight scoliosis as well...he no longer has that.
I did take him to Physio and made sure he did the exercises every day - this was close to the time he was diagnosed.

Hi Dave, I was diagnosed with EDS as a child. Tons of severe joint pain- and pretty much constant subluxations & dislocations. Most every joint was a problem at one time ( or a lot of times) . Very flexible / hypermobile joints from birth. Neck & headaches- TMJ... Stretch marks that happened when I grew, not from weight change... stretchy skin...probably more, but it's all blended together with the Lyme now...

Back then ( and maybe still now, I just chose a different direction) the treatment for a joint that became so loose it wouldn't stay in was to imobilize - ended up being even worse for me as my muscles are basically what keeps my joints in. Picture a human pile of jello- that was me!

I'd be on crutches for a knee cap that kept slipping off & I'd wind up dislocating a shoulder using the crutches. Or popping a hip out on the side opposite the bum knee... it was quite endless. It was like this endless rotation of joints popping out & becoming totally unstable for varying lengths of time. And it HURT .

I went through some really bad years - at one point (age 11) both shoulders had been fully dislocated for 2 years. I had rotator cuff surgery ( front & back ) on the right shoulder & it was dislocated again 3 days later ( on the car ride home from the hospital).

The docs wanted to fuse both shoulders & told me to get used to not using my arms ( which was kinda funny - as they weren't very useful dislocated eaither...haha)

I finally put my foot down and got my dad to back me up - we were lucky enough to find a doc who said we could fix my shoulders with TONS of physical therapy. Also a lot of lifestyle changes. It took a long time- and a lot of hard work( and pain, of course) but I did succeed in getting my shoulders back in.

They ( like most of my other joints) still sublux & dislocate sometimes. But not like they were before!

Once I figured out the physical therapy thing, I've never gone back to the old long term immobilization route. I will rest a joint after a dislocation, but I never let it go long before I'm exercising it.

I do regular p/t exercises at home everyday. If a particular joint gets really bad I'll go get professional p/t for awhile. Swimming is one of the things that's helped the most( not that I'm able to do it now with the Lyme...)

Having EDS was one of the reasons it took so long for me to get diagnosed with Lyme though. I kept asking for a Lyme test & saying - hey! I have ALL those symptoms! Please test me! And the docs kept saying - you have EDS....

To be honest, even a lot of my dizziness and balance/gait issues could be blamed on EDS. But I finally was so sick it was obvious that something else was going on...

It's really amazing how many Lyme symptoms & EDS symptoms overlap. Even though I have a lifetime of medical records backing up my EDS diagnosis, sometimes I wonder- has it just been Lyme & co all along? Probably not.... but maybe?

So anyway, that's my long rambling EDS story- actually that's the short version....

Do you also have Lyme & EDS?

Hi everyone,
I’m so sorry for the late response, I’ve been feeling pretty crappy lately. I’m so, so sorry you’ve been going through this since you were a child! How many times would you say you’ve dislocated/subluxated your joints? Which joints? I understand how much a dislocation can hurt, it HURTS!!! WOW!! You had surgery- I’m assuming a Bankart repair and it dislocated a few days later…ugh that sucks. What kind of PT fixed your shoulders?? It’d like to know, what kind of lifestyle changes. Congratulations on successfully fixing your shoulders!! You can swim even if your joints have dislocated? I’m afraid to swim with my shoulder. I know Lyme and EDS symptoms can mask each other but I’m not sure if I have EDS.

I honestly never had any joint or any full-body issues until about 3-4 years ago. I was an avid athlete growing up all the way until college and was a very avid weight lifter since freshman year of college. I was diagnosed with Lyme in 2015, I have a post with my igenex results if you’re interested I can find it. However, I’m not seeing the results I want to with treatment. I have some stretchy skin, not SUPER stretchy but stretchy. I am not hyperflexible, but I have some finger flexibility. I have dislocated my right shoulder unfortunately 4 times in college, since then it has never dislocated again. I have not dislocated or subluxated any other joint. I have high arched feet which sucks and I’ve had chronic foot pain for 4 years even with custom orthotics (I also have Bartonella, maybe that’s contributing to it??). I have bilateral shoulder tendinosis, which is chronic tendonitis, bicep tenosynovitis, a partial tear in my supraspinatus on my right shoulder, bursitis and blunting of the labrum in both shoulders. I had surgery on my left shoulder (bicep repair) from years of overuse in the gym and weight lifting.

I have a lot of Lyme symptoms but somet of them I guess can overlap with EDS? I see Dr. Jemsek, he mentioned you have a higher chance of tendinosis with EDS, but I don’t know if I truly have EDS. I saw a Rheumatologist a month ago who does treat patients with EDS, he said I don’t have it but may need to look into Cutis Laxa? I don’t bruise easily and I don’t have thin skin. Not sure what to do next, I just want to get better!

I’m sorry this post is all over the place, my mind is fried after a long few days at work. I’ve done physical therapy without much results, I am now doing pilates to hopefully see if that will help. My left shoulder has not gotten better since surgery 4 years ago, but I have full strength in both shoulders, they’re just chronically inflamed. I am considering stem cell therapy in a few months.

What do you all think???

Hi Girlie,
been seeing his PA since October, I've had two appointments.

No improvements yet. Treating Babs and Borrelia, next is Bart.

darn it Lyme brain!! I've seen him since august

I don't have any head symptoms I don't think? What symptoms are you referring to?

Sometimes I get that, but not usually. I don't even know if it's lyme! Question- who here HAS chronic tendinitis, meaning it's tendinosis- a chronic form of tendinitis? I have it in both my shoulders...not sure if that's lyme or something else.

Girlie...darn, I'm really sorry to hear that!! What tendon issues do you have now? Maybe I can help? Where is the tendon pain? What have you tried?

I have chronic tendinitis, which I hate more than anything, in both shoulders. Thoughts on the cause? Impingement? Lyme? Possible EDS? I don't know if it'll ever heal, makes me sad and angry.

Hey Girlie- I'm glad you have no pain in comparison to what you used to have in your tendons. I understand, I don't take notes anymore, I used to but not anymore because it just got too much.

I have a lot of other active symptoms. Not sure if it they're lyme or EDS or something else. Fatigue, peripheral neuropathy, memory loss, short term memory, some weakness in my hands when shaking hands sometimes, shoulder pain in both shoulders non-stop, foot pain in my right foot, lower back pain sometimes, gut issues, depression, anxiety, sleep issues. These symptoms overlap with so any other disorders. I don't know if my issues are all from infections. I have not seen anyone here who has bilateral tendinosis in any of their joints.