Wow lots of good information here...and all the links have been very helpful.
I think I need to determine if I am Hypermobile, just very flexible or actually test positive for Ethlos Danlos of some form. It does seem like it is all connected in some way...my ankle problems, SI joint, and now shoulder/TOS issues.

and I just thought I was special all these years! LOL I've been "flexible" my whole life, so much so I did gymnastics and dance without effort. Even today in my mid forties I can still bend over and touch my hands behind my feet! When I told the physical therapist that my muscles were really tight and I couldn't stretch all the way she thought I was kidding because most folks my age can't even bend over or reach their knees.
It also makes sense why the dr told me to keep working and moving. Because if I stop it allows the muscle/ligaments to lose their "shape" making the condition worse.
My job unfortunately is sitting all day and by the time I get home I can't stand the pain. But on the weekends I'm out in the barn doing chores, riding my horses, etc and I'm better. As long as I keep moving. When I sit for any length of time it kills me.

Hi HorseMommy,

Your post brings up a good point. There are several degrees of hypermobility (HM). It might be a good idea to ask your Doc for a diagnosis. They can tell easily by asking you to 'assume' certain positions.

In my case, there is NO WAY I could participate in gymnastics or dancing, (esp. with heels of any height). My ankles and knees could never stay straight. I got a concussion the first and only time I tried to ice skate.

I can effortlessly touch the floor with the palms of my hands without bending my knees and I am ten years your senior. Also, I have Mitral Valve Prolapse, as well as another valve with regurgitation. Those situations will require surgery eventually.

I can relate to the Physical Therapists not understanding that I may not be as limber (in minor ways) as is natural for me. My TOS specialists and PT have told me NOT to move or overextend my ligaments, which is almost impossible for me.

With my scoliosis progressing dramatically I cannot stand much and sitting is not fun either, in fact ANY position, even prone, is pain. My Mom's spine eventually collapsed completely, the X-Rays were shocking. Today, I had yet another bone scan and found out I have lost an inch within this last year! Now I am 2 1/2" shorter than I was 20 years ago. UGH!

So, yes, I am 'jealous' that you can work in the barn and ride horses. That is one thing I COULD do, (and well, I might add). I miss it so! I always planned to retire to ranch life. I come from a long line of ranchers!

If you believe you are hypermobile, do check it out, as there are potentially serious 'side effects' of that diagnosis.

Warmly,
Anne

Anne,

I am so sorry about the outcome of your bone density scan. And, I was unaware of your add'l med. problems above and beyond the TOS, spine, Cspine...

But you know what? You probably have one of the BEST attitudes of anyone on the boards I've ever seen. You're never down. You've always got ideas.

Kudos to you.

from http://www.amtamassage.org/journal/olcott2.html
[Double-Jointedness

Call it hypermobility or call it double-jointedness: its effects range from "a curious deviation from the normal" to life threatening. A hypermobile joint is one whose range of motion (ROM) is beyond the 95th percentile for the general population.4 A hypermobile person is one with unusually large ROM in many or all joints. One definition, proposed by Beighton5 and often used in clinical studies, uses a 9-point scale:

• 1 point each side for passive dorsiflexion of the fifth finger beyond 90° with the forearm flat on a table

• 1 point each side for passive apposition of the thumb to the flexor aspect of the forearm

• 1 point each side for hyperextension of the elbow beyond 10°

• 1 point each side for hyperextension of the knee beyond 10°

• 1 point for forward flexion of the trunk so that the hands rest easily on the floor

There is some room for disagreement with this definition (for instance, a subject with loose hip joints but short hamstrings would fail the 5th test), but a high Beighton score does demonstrate that the person is unusually supple. Various investigators have found that between 2 percent and 38 percent of the subject group (college students, athletes, musicians, rheumatic British housewives, etc.) meet some or all of Beighton’s criteria. Hypermobility is seen more often in the young than the old, more often in women than men, and in all ethnic groups.]

Hi everyone, I'm new to this site and having been reading your post. It's so amazing how my life has revolved. Since the 1980's I had been diagnosed with Fibromyalgia or Chronic Fatigue syndrome or various pain syndromes. In 1992 I was diagnosed with bilateral Thoracic outlet syndrome. I had a first rib removed on the worst side with was the left. I didn't have an extra rib. Anyway, the removal of the rib helped some on the blood flow but I continued to get worse on the muscle spasms and the high variaty of symptoms many of you post here. The only way I could slow the progression of the problem was to stop working. As years have gone by I have pushed to find out what was really causing my problems. As I know, many doctors use Fibromyalgia as a waste basket term when they really don't know what's wrong with you. Finally my symptoms progressed to the point of having really bad balance problems and falling, along with drop falls and many other often brain related symptoms. My headaches I dicovered was originating from the back of my head as well. In august of this year I had an MRI of my brain and cervical spine. Finally the answer came. I have a Chiari 1 Malformation. This is where a portion of you brain drops down in your spinal canal. The radiologist missed it in 2005 on other MRI's and this is VERY common to happen. Even the best Dr's, Radiologist, neurologist, neurosurgeons, etc. know nothing or very little on this condition. To make a long explaination short. It can cause so many symptoms a doctor will think you are crazy. The more I have researched this problem, it has come to me that since Chiari makes neck muscle and shoulder muscles spasm due to nerve pressure in the brain, the chiari condition was very likely the cause of my TOS. Some of you may already know that many people with fibromyalgia are often diagnosed with TOS. The real clincher here is in recent years many people with fibromyalgia/chronic fatigue, etc, are being diagnosed with Chiari 1 malformations. Now, the Erlos Danlos comes into play for possibly those of you that have hypermobility. Erlos Danlos can cause Chiari 1 Malformations and I am reading that it also can be a cause for TOS. A tethered spinal cord which is found at the bottom of the spine can also cause Chiari 1 Malformations. (This also sometimes being a cause for spinal deformaties and/or increased lower body problems). Chiari can also be caused by literally having too small of a skull for your brain. There are many reasons this condition can happen. If any of this sounds interesting to you and you would like to follow it up more, do searches on the internet for Chiari 1 Malformation. The symptoms are never all the same in every person. Thus making it harder for Dr's to diagnose. Even if it's seen on an MRI, radiologist or Dr's often dismiss it as an incidental finding. In recent years Chiari specialist have discovered much more about this condition. They and many others are trying to educate others in the medical profession, but it will take time. If you find through more research you symptoms are very simular to Chiari and you have had an MRI of your cervical spine and/or head, you may consider having it looked at by a neuroradiologist that is educated on Chiari. Be aware that many doctors will even dismiss Chiari as a problem. This is because they are from the old school and not up to date on it. I hope this post might help many of you that suffer. There are surgeries that can help this problem and sometimes make all the symptoms go away. If I had known in 1992 that I had Chiari, I would have never had my left first rib removed. There are support groups on the internet for this condition as well and many people there that can be of help with those of you with questions. I am having a decompression brain surgery done soon by a Pediactric Neurosurgeon that is not with one of the specialty clinics but is with a University hospital. He is well educated on this condition. For those of you that's heard "It's all in your head" It may very well be. Dee