Ehlers Danlos Syndrome (EDS): Any other riders have it?

[diKecnadnuS]

I’m curious if any other riders have EDS? How do you deal when it is acting up? My joints have felt pretty decent lately, but I’ve noticed my physical coordination is so out of whack. The tell tale “clumsiness” is really bad right now… I keep accidentally dropping things and falling or stumbling. I’m covered in bruises right now. Of course, because of the worse than usual clumsiness, I can feel feel a big difference in both my riding and cycling right now, and not for the better.

Just curious if there are other EDSers (or other collagen disorders) out there that ride.

[medical_mike]

Not much to add…

Except keep up on your strengthening program.

Having had both shoulders tightened, that is really the only thing that makes a significant difference in my activity and how I feel is that.

If you don’t have one, a rehab professionals should be able to set you up on a basic strengthening program for you joints.

REgards,
Medical Mike
equestrian medical researcher
www.equicision.com

[system]

EDS I have it

In fact in my family we have two dirfferent types of EDS. Sorry spelling is not something I am good at. I have been riding for over ten years with it. I do both english and western riding.

[thoroughlydaft]

I have EDS III

Hello,
I was recently diagnosed with EDS III. I’ve always had joint pain, but it is much worse right now due to a post viral autoimmune reaction that has caused POTS, gastroparesis, chronic fatigue, and fibromyalgia. I was more prone to all of these things because of the EDS. Because of this recent flare up, riding is very difficult right now. I hoping that finding the right combination of meds will make riding easier again. I am a dressage rider, and my large WB is a fairly physically demanding horse to ride. I work out on an elliptical machine, which does seem to help with the pain. I would love any advice on how ways to make riding with EDS easier!

[diKecnadnuS]

WOW!!! I’m blown away at how many others have it. I was diagnosed after having my left shoulder tightened (multiple direction instability), and my ortho was the one who initially suspected it. I’m very much on the fence about having my right shoulder done - half the time I’m thrilled with the outcome of the left, the other half the time I think that surgery was the biggest mistake of my life.

I’ve tried the high doses of vitamin c with noticeable results, and that’s something others might want to try if you haven’t yet. make sure to talk to your doctor first. the thing that’s really killing me right now is the lack of coordination I’ve had lately - I’m wondering if the cold is playing a roll in it.

[tarynls]

I also had my shoulder tightened up - the ortho tightened all 3 tendons with bone anchors to hold them in their newly shortened state

My ortho does suspect EDS based on the amount of mobility I have in other joints (wrists and thumbs were the only other joints he flexed although I’ve had other docs tell me I have hypermobile ankles as well).

How does one go about getting a diagnosis?

[Bicoastal]

Me too

I have a mild degree of EDS. Others in my family are legally disabled. I am not riding presently and trying to find someone or something to resolve my back pain.

My worst laxity is through my SI, which contributes to the back problems (3 ruptured discs). I have been told riding is extremely concussive to the lower lumbar vertabrae and straddling a wide, moving animal is the exact opposite of what is beneficial to my SI. Though motion like sitting a walking horse is good for folks with chronic pain according to another doctor. There is a lot of confusing/contradictory info out there, isn’t there?

From my experience and that of my family members: find doctors that really understand EDS and are keeping up with stem cell news; keep fit!, and easy on the pain meds.

The lack of balance is quite funny, isn’t it? I have to laugh and be thankful when I keep my feet under me!! :lol:

[vali]

How do you know or get a diagnosis? I have the hypermobility, fibro, mild scoliosis, migraines, and occasionally have periods of clumsiness, although normally I am fairly coordinated. I don’t have the skin laxity (except certain areas post-baby), and I heal well from cuts with not much scarring. I suspect from clinical symptoms that I also have mild mitral valve prolapse. This is very weird, I just pulled up a chart with pictures of the types of joint hypermobility, and it shows exactly what my joints do, especially the hypermobile elbows.

[vali]

Well, it’s official, I have a diagnosis of EDS, from both an orthopedic doctor and a rheumatologist. The first doctor looked at me, did the flexion tests, then said, “you do know you are a textbook case, don’t you?” I was diagnosed with type III, although I had some symptoms consistent with Type II as well. I was an 8 plus out of 9 on the Beighton scale, plus I have GI irregularities consistent with EDS, plus the Reynaud’s. In addition, I had an MRI of my back, and I have an active disc bulge with annular tear and some other areas of deterioration. Did I mention my shoulder still bothers me from the labrum tear last year? The most immediate issue is my back, and I’m going in for an epidural injection next week. Suggestions are welcome. Has anyone tried Savella? I’ve tried gapapentin and lyrica, without much success, so savella is probably next on the list. One of my daughters is quite hypermobile, and the two doctors gave me different advice on what she should or shouldn’t do. Both said sports like gymnastics or martial arts were a bad idea, but the sport medicine/orthopedic doc said he wouldn’t rule out skiing or riding, both of which she loves. My younger daughter is only five, so too young to tell, but she’s already had some weird bony abnormalities and dislocated her elbow.

It’s a lot to process, and I’m taking a couple of weeks off from work. I’m trying out acupuncture and biofeedback, in addition to the epidural. It’s depressing. My mare is feeling a bit neglected, but luckily she’s finally reached the point where she is a good egg and does fine when I don’t ride her for a few days, and she is getting turned out with our pony. I can’t do much more than walk without my back going into spasms, so I think this pretty much sinks the spring event season.

[Bicoastal]

Vali- ouch, that sucks

It is scary and frustrating. Knowledge is power, so the diagnosis is good in that way. It helps you find appropriate doctors, communicate effectively about your issues, and clarify things for your family.

Of the meds you listed, what does the rheumatologist suggest? Some anti-depressants are being used for chronic pain at double the anti-depressant level. It can take a lot of trial and error to see what helps, and it may be a combination. Cymbalta is an anti-depressant also being used for chronic pain, though that is not an official application.

I have tried epidural injections. See how it goes for you. Everyone is different. (didn’t help me, but hey, nothing is so don’t be discouraged that epidurals won’t help you ;))

I am sorry your Spring season won’t happen. That doesn’t mean Fall can’t :D. What area are you in? Volunteering a half-day may help your spirits and keep your brain eventing if your body can’t.

For me it is all too easy to let pain squash me under my rock where I have no need or desire to come out. But that is mal-adaptive coping that only increases depression. Do what you need to do to cope with the news now, but EDS is manageable and your riding days are not over.

[PalominoMorgan]

Sorry/Congrats on your diagnosis. I’m almost ready to be seen by Dr. Francomano in Baltimore. Just waiting for the hospital to send over my echocardiogram results and then I’ll have an appointment time for 2-3 months from now I assume. I’m only guessing whether I’ll be Type 1 or 3 now. I’m really not thinking I’ll be negative for EDS anymore.

In honor of my upcoming appoinment, my right shoulder has been partially dislocating nightly and my left hip is going out almost daily. My wrists and left knee are putting on a show and my left thumb is cracking several times a day. I think my body is trying to throw a (suspected) EDS flare on top of a (confirmed) fibro flare. I am not amused.

What I have found that helps so far is my infrared pad, Mobic, amitriptyline, epsom salt baths when the tremors get too annoying, and mandatory rest when the fibro flares (like 3 weeks at a time.) The horses are in TN and I haven’t ridden in a year so that is sort of a moot point right now for me. Didn’t have the energy to care for them, let alone ride. My body tells me the idea of it is bad, let alone acting on it.

[Trying]

OH yes, ED is the reason it took 3 years to find an orthopedist to do a total hip replacement and now have had 3. I have Type II and, since it is genetic (northern european stock, blue eyes, and bluish whites of eyes and huge hyperextension of elbows and joints that always slipped out). Found it when my son bled like a pig whenever he bumped into something. Being a male, testosterone countered the affects at puberty but he does have a prolapsed mitral valve. Other son is fine but a carrier. I must stay strong and find that the barn work and cycling is the best. My spine is a mess and have no disks but the chiro spreads the vertabrae and the muscle and tendon are holding. I was still walking all bent and with a cane until I found him. Riding is awesome!! Sit up and hold diaphram in and up and push down with heals. Best therapy ever!!! and
1400CA +2000D3, ALIVE vits. and Hyaluronex (squirt for horse and one for me!!)

GOOGLE it as there is a national organisation that has a lot of information.

[donnairenephoto]

Meeee! Diagnosed with hEDS in Aug 2022. I had to quit riding many years ago due to my issues but am looking to get back into it now. Will keep you all posted on how it goes!