55 YO newbie with Ehlers-Danlos

[ElayneA]

Thank you for this forum. I'm a 55 yo woman increasingly prone to joint issues over the past several years. Arthritis in my SI joints, feet, hands... rotator cuff tendonitis, biceps tendonitis, tennis elbow, hip pointers. My SI joints apparently pop out of place-- a PT showed me how to pop them back in. Most recently, I had a dislocated thumb for no known reason. I got sent to genetics and was diagnosed with Ehlers-Danlos.

I am a backpacker for fun, and I had been training for my second Appalachian Trail section this April, from just past Springer to Neel Gap, about 8 miles a day for 4 days. I have worked up to 8-10 mile hikes with a 30 lb pack once a week and 3-5 miles with the pack most mornings before work. It makes my joints, especially my SI joints, hurt like crazy-- but I love the rest of it.

Then I got this diagnosis, and the geneticist told me to do 10 min of recumbent bicycling a day while keeping my pelvis from moving and increase to 15 after a month. No hiking. That made zero sense to me. I found SS mentioned on an EDS athletes page, so I read it and did my second session today. I'm kind of embarrassed to say I am only squatting 35 lb x 5 x 3 and same for deadlift, but that's 5 more lb than 2 days ago.

I think I didn't have so much trouble when younger because I was stronger. I think I let my muscle situation slide and now my joints can't stay put because my connective tissue isn't normal. So it seems like lifting has got to be the way to go, not 10 minutes on a bike. Maybe I can actually hike without much pain, if I am stronger.

I am unsure what the best plan is for backpacking. Whether I will likely make the most progress by laying off of it completely until I have gotten stronger? Or just back down on the hiking volume? Or keep hiking as usual? Does it matter? I am not sure if the EDS diagnosis makes a difference with how I should do SS or how I can best integrate hiking into my schedule.

[ElayneA]

I have some follow-up information. I forgot to say that I can pick up and carry much heavier weight than mentioned above, even lift 100 lb boxes to move them. I started lower because in EDS, the connective tissue being abnormal means that the tendons don't act like they would in a normal person. I was trying to find the weight to start with that would cause my muscles to strengthen without inflaming my tendons or getting my joints pulled out of position. I've read research that people with EDS can also improve tendon strength with weight training.

I did stop hiking last week, while waiting to see if anyone here had ideas... and I was fascinated to find that the joint/tendon pain decreased quickly, to the point it didn't overshadow the DOMS from doing squats-- very nearly gone. I haven't felt DOMS in a long time. I know it isn't the goal, but it felt kind of nice in that "hurts so good" way. So I thought hey, I've answered my own question-- I should get stronger first and then hike.

But I advanced 5 lb on the exercises yesterday as scheduled, and starting immediately afterwards, I've got the joint aches as usual. The lifting felt much much easier on just the 3rd session, and I don't have DOMS today, just joint aches. Now that I know that can go almost completely away, which was new info to me (because I was exercising daily), I can tell there is a big difference between just working the muscles vs making my connective tissue freak out.

I have tried PT before but all they ever give me is the same exercises and discharge me, so I know the routine. Since getting diagnosed and reading, I've realized I was doing them too hard. Apparently in EDS, the deep stabilizers don't activate like they are supposed to, so the movers try to move and stabilize. So we are supposed to use minimal isometric force to activate them without firing the larger muscles. I am doing that before I do the weight training sessions, in case there is anything to it.

So now I don't know what to do tomorrow, for my next session-- go up 5 lb as planned, or go up a smaller amount because of the connective tissue. I've ordered fractional weight plates which should arrive by then.

If there's not really a way to build muscle strength without tendon pain, then I will just deal with the pain and proceed. But dang, those few nearly pain free days were nice.

[Will Morris]

Thank you for this forum. I'm a 55 yo woman increasingly prone to joint issues over the past several years. Arthritis in my SI joints, feet, hands... rotator cuff tendonitis, biceps tendonitis, tennis elbow, hip pointers. My SI joints apparently pop out of place-- a PT showed me how to pop them back in. Most recently, I had a dislocated thumb for no known reason. I got sent to genetics and was diagnosed with Ehlers-Danlos.

I am a backpacker for fun, and I had been training for my second Appalachian Trail section this April, from just past Springer to Neel Gap, about 8 miles a day for 4 days. I have worked up to 8-10 mile hikes with a 30 lb pack once a week and 3-5 miles with the pack most mornings before work. It makes my joints, especially my SI joints, hurt like crazy-- but I love the rest of it.

Then I got this diagnosis, and the geneticist told me to do 10 min of recumbent bicycling a day while keeping my pelvis from moving and increase to 15 after a month. No hiking. That made zero sense to me. I found SS mentioned on an EDS athletes page, so I read it and did my second session today. I'm kind of embarrassed to say I am only squatting 35 lb x 5 x 3 and same for deadlift, but that's 5 more lb than 2 days ago.

I think I didn't have so much trouble when younger because I was stronger. I think I let my muscle situation slide and now my joints can't stay put because my connective tissue isn't normal. So it seems like lifting has got to be the way to go, not 10 minutes on a bike. Maybe I can actually hike without much pain, if I am stronger.

I am unsure what the best plan is for backpacking. Whether I will likely make the most progress by laying off of it completely until I have gotten stronger? Or just back down on the hiking volume? Or keep hiking as usual? Does it matter? I am not sure if the EDS diagnosis makes a difference with how I should do SS or how I can best integrate hiking into my schedule.

I have trained probably a dozen people with EDS with barbell training, and I have had good results with all but two of them. The two I did not have much success with were more interested in collecting disability for their condition than they were improving the quality of their life.

There are few modifications to be made for EDS when it comes to safely implementing a barbell training program. These are generally just ensuring mechanical / structural safeties in place, and the use of support gear for joints that demonstrate / display hypermobility to the point where it is difficult to control through the proper range of motion.

Your geneticist is trying to do the right thing, but he / she is woefully underqualified to opine on the efficacy of exercise intervention for EDS.

So, you made a wonderful statement when you stated that you didn't have so many issues when you were younger and stronger. The connective tissue is the same, for the most part, as it was when you were younger, but the decrease in muscle strength will certainly exacerbate the downstream effects .

I don't see any reason to completely eliminate hiking / backpacking. Maybe reduce the dosage for a bit while you are focusing on strength, but if hiking / backpacking brings value to your life, it would be ridiculous to assume that getting rid of it would be of any benefit to you.

[ElayneA]

Thank you so much! I'm glad to know that you have had success with trainees with EDS-- that's very encouraging. I am really looking forward to my AT section in April. I think this training is already working, because I notice regular activities around the house are easier!

[Will Morris]

Thank you so much! I'm glad to know that you have had success with trainees with EDS-- that's very encouraging. I am really looking forward to my AT section in April. I think this training is already working, because I notice regular activities around the house are easier!

That's wonderful news. It may be worth, at least vocalizing here, that your "new" diagnosis is not actually a new diagnosis at all. You have had this condition since the moment you were conceived. Nothing changed in the moment the diagnosis was confirmed other than you have a particular name to call your constellation of symptoms. You are already far more functional than most who have this "diagnosis" because the vast majority I have come across have completely bought into the idea that they are now not able to participate in life's activities.