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I have pain in many areas and I finally decided to go to the doctor but I waited until I found a new one. She was just as disinterested as the previous doctor. She ordered an x ray of my shoulder, hip and lumbar spine (I had to ask her to please add the thoracic as there is pain there too). The spine x-rays were taken lying down supine. Now I’m wondering if that is the best choice with joint hypermobility? Standing introduces the impact of gravity on the joints and would better display any dysfunction?? She actually called the same day to tell me they were all normal. Now that’s a surprise for such personal attention! But what in heaven’s name is causing all this pain? My shoulder feels like a muscle tear or something it’s so bad and my hip feels like it’s dislocated. My back hurts and feels numb sometimes. How could it all be normal? My muscles feel so different than they did even two years ago. My calves are cramping more and more frequently too. I have a pain in my eye when I’m trying to scan and read things on TV about six feet away, only the left. If it’s all just myofascial or calcific tendonitis then massage would help and sometimes it just feels worse. I’m only 48 and I feel 75. Just opening and closing the car door is difficult. It’s not bad enough to stop working (I don’t think) but all I can do is work and rest. Self-care is a full time job.
I have pain in many areas and I finally decided to go to the doctor but I waited until I found a new one. She was just as disinterested as the previous doctor. She ordered an x ray of my shoulder, hip and lumbar spine (I had to ask her to please add the thoracic as there is pain there too). The spine x-rays were taken lying down supine. Now I’m wondering if that is the best choice with joint hypermobility? Standing introduces the impact of gravity on the joints and would better display any dysfunction?? She actually called the same day to tell me they were all normal. Now that’s a surprise for such personal attention! But what in heaven’s name is causing all this pain? My shoulder feels like a muscle tear or something it’s so bad and my hip feels like it’s dislocated. My back hurts and feels numb sometimes. How could it all be normal? My muscles feel so different than they did even two years ago. My calves are cramping more and more frequently too. I have a pain in my eye when I’m trying to scan and read things on TV about six feet away, only the left. If it’s all just myofascial or calcific tendonitis then massage would help and sometimes it just feels worse. I’m only 48 and I feel 75. Just opening and closing the car door is difficult. It’s not bad enough to stop working (I don’t think) but all I can do is work and rest. Self-care is a full time job.
Hi Anne, I think you have every right to question your doctor on this. YES — vertical x-rays and MRI’s are usually preferred for just the reasons you cited. If your doctor saw no problems, my guess is an MRI (vertical) would be next. Would you be sure to get a copy of your RAW DATA? It’s shocking what radiologists will sometimes call “normal”, and your doctor may depend on those reports 100% (which is a sin, in my book, but I digress). There is a reason for all of your pain. They just haven’t found it yet. Will you stay close by as we gear up for clinical trials? I believe I know what is “getting” us. On my video about hypermobile EDS, I describe a technique I used to pop my hip back into place. I hope it helps!! Big hug, Diana
I can’t WAIT to check out that technique.
I just tried to find the right video, but I did not see it.
Do you have the exact title or the page? I think you have 4 pages of videos.
I’ll look again too. Thanks for the support.I found it but it wasn’t under the list of videos but in the boxes of additional videos that pop up after you watch one. hmmm
I think it worked! and hope it will alleviate the back eventually.
If you figure out the shoulder, I’d be excited as that hurts even worse.
If I figure something out I’ll let you know. My other shoulder was helped by projecting my elbow forward (as if pointing with it) and pressing against something as I relaxed the shoulder. It’s not working for this shoulder and I’m thinking it may be a tear.Ah well…
I can’t WAIT to check out that technique.
I just tried to find the right video, but I did not see it.
Do you have the exact title or the page? I think you have 4 pages of videos.
I’ll look again too. Thanks for the support.Hi Anne, So you found it? You lie down on the floor, knees bent, feet flat on the floor. Swing your knees outward and relax. Then put a rubber ball (about volleyball size)in between your knees as you pull them together and squeeze the ball until you feel the POP! I need to do that a few times a day for a while, but haven’t needed to do it for about 3 years now… Weird, huh? Shoulders. gads. I, too, have a tear in my rotator cuff with fibrosis (found out today). I can get by for a while, but late in the day, I put on one of those posture braces that hold my shoulders up and back a bit. It buys me a little more time. I hope it helps! I tried a few before finding one I liked… 🙂
I can’t WAIT to check out that technique.
I just tried to find the right video, but I did not see it.
Do you have the exact title or the page? I think you have 4 pages of videos.
I’ll look again too. Thanks for the support.Hi Anne, So you found it? You lie down on the floor, knees bent, feet flat on the floor. Swing your knees outward and relax. Then put a rubber ball (about volleyball size)in between your knees as you pull them together and squeeze the ball until you feel the POP! I need to do that a few times a day for a while, but haven’t needed to do it for about 3 years now… Weird, huh? Shoulders. gads. I, too, have a tear in my rotator cuff with fibrosis (found out today). I can get by for a while, but late in the day, I put on one of those posture braces that hold my shoulders up and back a bit. It buys me a little more time. I hope it helps! I tried a few before finding one I liked… 🙂
I think it did help and feels like it’s tracking better which is huge. I think the nerves need to heal as it’s been out for a long time. Years ago I had a posture bra and I can see if I can find it again. I tried to pop my shoulder back into place with a similar move squeezing the elbows together and it felt good and popped a little but it didn’t help really. ah well..
Chiropractors aren’t detecting these things which is disappointing. It is what they do after all.I think it did help and feels like it’s tracking better which is huge. I think the nerves need to heal as it’s been out for a long time. Years ago I had a posture bra and I can see if I can find it again. I tried to pop my shoulder back into place with a similar move squeezing the elbows together and it felt good and popped a little but it didn’t help really. ah well..
Chiropractors aren’t detecting these things which is disappointing. It is what they do after all.Hang in, Anne. I really think that once you get started on some treatments, the hypermobility will become less of an issue. I speak from personal experience!! I have every brace known to man, and I used to have to wear them all, mostly simultaneously — from finger splints, a cervical collar(OMG, I couldn’t turn my head or even my EYES), the posture brace, a knee brace, wrist braces, ankle braces, blah, blah, blah. Yea, I was REALLY SEXY looking when I went to bed. HA. Funny how I almost NEVER reach for a finger splint now (when I do, it’s usually because it’s cool looking!), I wear a soft collar only at night time, and wear my posture brace late in the day (I have a torn rotator cuff which likely isn’t helping matters). My HUGE question for all of us (I don’t yet have the answer) — am I less flexible now? I can’t touch my forearm with my thumb any more. That used to be easy. My hip doesn’t pop out any more (and, dang-tootin’, you can be sure it is not from exercise!)… I’ve noticed a few other things. COOL!! I’m staying on the regimen, tweaking it a bit, but I’m DYING to see if I still have left ventricular diastolic dysfunction (that is an objective indicator of tissue remodeling). If not, HOT DIGGETY!!! We’re getting somewhere!!! My test for LVDD is in April. All fingers and toes crossed for everyone with these invisible illnesses. I think that tissue remodeling is a huge part of our problem — but no one’s ever tried to reverse it before (I don’t believe). Back to being a guinea pig… 🙂
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