Riders with EDS

[DespicableM3H]

My sister is in the process of getting a diagnosis, apparently if she has it than I probably have it. Both my shoulders dislocate and I have problems with my knees/back. I can do a few of the crazy things accociated with type 3. I am not entirely convinced she isn’t just crazy (that is a very long story that I don’t need to get into). My questions… How did you handle being diagnosed? Did you need to change anything about what you do? I currently work for an event rider/trainer and am worried if I actually have it I will need to find new work.

Thanks!

[Wayside]

I have it.

The best advice I can give you if you might have it, but are not currently having any pain and/or joint problems, is to make sure that you’re moving as correctly as possible. Muscle is important to maintain, because the more of it I lose, the floppier I get, and the more my joints slop about, but I have to be careful about staying within that “normal” range of motion as much as possible.

Physical therapy can help. They were great about pointing out a bunch of things I normally do to compensate for problems in one area that were actually causing me pain in a different body part.

[PalominoMorgan]

Me too. Riding is actually very good for my lower back and core.

[Knubbsy]

What Wayside said.

You’ll find that a lot of doctors do not differentiate between EDS-3 and (Joint) Hypermobility Syndrome since they present similarly and have similar diagnostic testing.

Because my pain is primarily in my lower joints I do have issues with walking (my left hip in particular likes to pop out even though structurally it’s normal) so we are currently playing around with medications to keep me comfortable or at least functional since my job requires lots of walking and stairs. I do find that I am more comfortable on narrower horses and a narrow twist.

Keep up with core strength, make sure you’re not compensating in your hips and quads (guilty) and use Kinesteology tape or braces if you find that helps. My rheumatologist really emphasizes keeping active to try to build muscle and to keep the joints moving.

[PalominoMorgan]

I will also add that meloxicam was a life changer in terms of joint pain.

[MustangSavvy]

I have EDS 3 and POTS.

You need to see either a geneticist or rheumatologist to be diagnosed. Typically rheumatology with diagnosed joint hypermobility syndrome and a geneticist with diagnose Ehler’s danlos type 3. There are not a ton of doctors who are familiar with EDS.

I have dealt with issues since I was a little kid, but only recently diagnosed. Riding is difficult for me, but I do think it helps keep me stronger.

[right_horse_at_the_right_time]

No, you do not need to be diagnosed by one of the above. Yes, depending, it would be a good idea to see a specialist.

There are many familiar with EDS; there are fewer experts.

Modified activity will depend on your own circumstances. Know your own limitations and strengths and ride accordingly.

[Gr.Prix_Dreamer]

I have EDS and a host of other medical conditions, Hyper POTS, MCTD, DDD, gastroparesis, colonic inertia and dysautonomia.

I was diagnosed by Dr. Brad Tinkle who is the leading doctor in his field. My daughter was also diagnosed, we both ride.

I think it’s really important to go to physical therapy as we tend to move and bend in ways that are not correct which is out of habit but can really damage joint. Learning how to bend properly, lift properly has really helped my daughter to have much less pain. Her core is still pretty weak and we are working on that but it has not stopped either one of us from riding.

Good luck!

[vali]

I missed this thread earlier, but both my daughter and I have EDS. We were diagnosed at Stanford. We both event, so it is possible, but you may have to modify some aspects of your life. One thing that’s important to remember is that some people experience relatively few complications, others many, so even if one family member has problems that doesn’t mean you will. It’s worth getting an echocardiogram, my heart is fine but my daughter has an aortic enlargement that they are monitoring annually to make sure it doesn’t progress. A good physical therapist and one who uses Pilates equipment can be really helpful, I can’t stress enough how important core strength is. Riding is pretty therapeutic for me, but you need to be careful about barn work and not overdoing heavy lifting. Listen to your body and don’t push it past its limits. There’s a Facebook group on nutritional supplements for people with EDS that has been pretty helpful for me - it’s a closed group but you can apply to join the group. The founder of the group does not sell or market supplements but has EDS herself and has worked with doctors on a mix of supplements that can be helpful. I think it’s called EDS and Polysaccharides.

One other thing is to remember to stay hydrated, especially in the heat, and for many it’s helpful to supplement salt since we tend to have low blood pressure. My daughter recently fainted at the end of a riding lesson because she was dehydrated. Now she always has an drink with electrolytes if she is riding in the heat.

[grandprixer]

Just thought I would add in that I just got diagnosed as well. Only thing I do different is wear a shoulder brace and be careful with my hips, which are also very unstable.

[PalominoMorgan]

If you seek out EDS specific support boards or groups please remember that those of us who have found a balance are out DOING stuff… or sleeping. My point is, support boards can be helpful but they aren’t filled with stories of folks who found ways to make it work. Those people are out living life and usually not checking back in with a support group.

[starrunner]

I haven’t been confirmed, but I have had several different physicians state that I fit the parameters. I was a little perturbed that my primary care physician said that there was no reason to know and that what will happen will happen in regards to the frequent dislocations, sprains, and so forth.

However, the more I dig into other issues linked with EDS, the more it fits.

So perhaps I am also in your same board…at the very least, I am another gumby rider!

I was much better off when I competitively swam in college. Now that I am not incredibly fit, I have been struggling with back, knee, and shoulder pain, along with other general health issues. It is what it is, but just keep going as you can!

[OTTEventing]

Joining the club as well. I was diagnosed with EDS3 about 3.5 years ago.

Learning to manage all of my issues (the joint stuff plus a lot of chronic fatigue, nutrient deficiencies, and muscle function) has been a challenge–but I’m doing better now than I ever expected. Basically I went from a point where walking was incredibly painful and I was tired all of the time, to being able to do most things and having good energy 90%+ of the time.

The best advice I have is to find a PT who truly understands your condition and is a problem solver. This is harder than you’d think, but they are out there! I also found a doctor who knows EDS and chronic fatigue well, and that has done wonders for the non-joint problems. Finally, try to stay active in any way you comfortably can. At first all I could reasonably manage was biking or swimming, but it really helped complement the PT and now aside from running I can manage most physical activity. I’m even doing strenuous hikes now! I have subluxed my hip once or twice riding, and definitely find that it’s more likely to happen when I don’t keep up with the PT.

Anyhow, if you have questions let me know. Especially if you need leads on finding the right professionals.