My hips are uneven, causing my right leg to be about a half an inch longer than the left, my lumbar spine is pretty much flat and does curve the way it should, and I have severe pronation in my ankles (which, we already knew). She's hopeful though... sinve I have dance and martial arts experience, I'm very aware of my body and was able to do the exercises fairly easily. The hope is to get my pelvis/SI joints (which are a disaster) as stable as possible by making the abs do the work and focusing on moving the legs in stead of the pelvis. I noticed less "clicking" when i did this. she said the my MTT in my toe isn't aligned properly and is most likely from the pronation/rolling of my ankles. My left side is much worse than the right. She's going to think about getting a foot orthosis to help with walking to make things a little more even, and a new tens unit... def going to need it after PT. I have my old one on right now. She's had experience with EDS before and knew what she was doing. I feel very comfortable with her. She wants to get me into the pool to to do some exercises in there. She said its going to be a very long process, but she is hopeful that I could get back to walking more steadily. It was very uplifting.

Yeah! Happy dance (which I do just by wiggling my fingers in the air- real dancing is too much effort)!



Liz

Kerrilynn,

I know how you feel! I finally found a PT who works with EDS patients and it's relief just to have someone look at my body and explain structural reasons why it feels as it does.

For example, my left shoulder is a couple of inches higher than my right shoulder, but my right hip is 1-2 inches higher than my left hip, my SI is a mess, I have curves in my spine that shouldn't be there and flattening where there should be curves, my ankles fold in (I already got fitted for bilateral AFOs and the right one is going to provide LOTS of restriction because I'm practically walking on the inside of my right foot/ankle), etc. It's so weird to see someone else write out something so similar.... only here on BYDLS.

Congrats on hooking in with a knowledgeable PT. That's a great step in treatment.

I feel like I have some hope again. Sure, I may never climb a mountain, but she said it could be possible for me to walk comfortably!!! It's going to be a long process, but I'm hopefull, I could already feel the difference when doing the exercises. It takes A LOT of concetration to keep my hips isolated from my legs... but it worked... there wasn't any clicking.

thisgrey, I know what you mean about your ankles... I practically walk on them myself. If I didn't wear my braces, I would constantly be hurt. They do the job, but I do still roll a little in them. Mine are made by AirCast, and look just like a mini aircast with the hard sides, but has a compression wrap built into it. A strap that goes around the back, and another that starts at the bottom of the foot at the inside arch, wraps over the top of the ankle and around for support.

She also told me that if I need to use my crutches, to use both. That way everything is balanced. I hate using both, because I don't have a free hand. I hate feeling dependent on others. I went from being considered as "feircely independet" to needing to rely on people. I definitely wouldnt be able to live by myself without assistance. Hell, I need help opening a water bottle!!! Ha. Neil, jokes that I'm his full time job. He's fabulous really. I love him.

I'm just glad you're hooked in with someone good. I'm not really sure about my braces, other than I saw someone in the basement at Tufts-NEMC in Boston because that's what the physiatrist in the same building recommended, and I know someone else with EDS who had her AFOs made there.

Yeah, it's really hard... I was also once fiercely independent. And somehow it got easier to depend on my husband, who was very kind and understanding until, well, he decided to leave...and now he's leaving, and I'm realizing I'll need to depend on my parents...at age 27. Hard stuff. But if you are lucky enough to have a partner or roommate or parent or anyone who can help, it's a real blessing. My parents keep saying I'll be able to have my own place, but even aside from the money issue, I just don't know how I could do it. I'm heartbroken at losing who I thought was my true love after 8 years...and getting so comfortable living together for 7... it's impossible to think about finding love again at this point, and I don't want to be beholden to anyone. I don't know.

Sorry for the side tangent there. BTW, you're in RI, right? Where are you going for good PT? I couldn't get good PT when I lived in RI, but this was before I even knew what EDS was...

Yea, Neil has been great... I really am blessed.

I do live in RI, Providence, actually. I go to RI Rehab at the Jewish Community Center on the east side. I'm not Jewish, it's just where the office is. They are really nice and good there. I see the Pain Center at Mass General in Boston. I still don't really know whats going on... the I was there yesterday to get the eval for opioid risk and treatment. The dr said he wanted to see me again and go over my dr's notes. That appt is in sept. No one has given me any clue on what to do in the meantime, with PT 2x a week and OT once a week, I'm going to need something. I'm calling the dr's office in the morning to find out what she wants to do. I'll even try tramadol again, if she's more comfortable with that. If I'm in pain, I won't be able to do the exercises....

Your PT sounds fantastic! I'm glad you found someone who deals with EDS.

I never tried that one...but I was only there for 10 months. I did happen upon a guy randomly who did some sort of craniosacral stuff that would acutely relieve headaches that nothing else would touch, but didn't have any luck w/ exercises.

I'm not part of a pain clinic...yet, I guess. I do rehab medicine/physiatry via Tufts-NEMC and they prescribe my pain meds, well, med, right now I just have oxycodone.

I do have psych meds that might be helping pain a little...namely nortriptyline and ativan... but there are nights I take maximum allowed doses of EVERYTHING and I can't sleep because of pain and I'm awake long enough that even the "small edge" that the meds took away comes back (this happened last night/early this morning around 4:30am, when my bedtime meds had worn off and I was still wide awake -- stress/anxiety, I'm sure -- and I had to take ANOTHER dose of allowable PRNs). Yeah, it was really fun going to my 9:30 OT appt by myself. And then I missed PT because I overslept during my nap and they booked me in a narrow slot with several people afterwards and being 10min late meant no appt.

I know what you mean about the pain and the exercises...

Congratulations on Neil, really. (I feel like a jerk because I'm envious that my DH used to be like that and now he's leaving, but I really am happy for people who have good supports at home. Maybe someday again for me... I don't know. Meh.)