Hypermobility and TOS
 

I was wondering if anyone had ever seen any info regarding people who are Hypermobile...(super loose joints) and its role in TOS.
I am currently in the midst of a debate between the PT, Orthopedist, Vascular and Neuro.....as to what is causing my TOS like symtoms.
It all started with a shoulder injury and the injury has never healed, my shoulder capsule is very loose thus causing the muscles around to compensate and tighten (even on the opposite side) to a point where I am having hand, forearm nerve pain.
I found this old post on another forum but cannot find the orig poster...so I thought maybe others would have seen something similar.
Thanks for any help with this....:confused:

This is the post I found on Sybermoms.com by Webwriter.

I have a chronic condition which is currently incurable with today's technology. It's called Thorasic Outlet Syndrome. In nature, it is very like Carpal Tunnel Syndrome, except that it affects the Thorasic Nerve instead of the Carpal Nerve. For anyone experienced with Carpal Tunnel, the easiest explanation is that I have it all the way up my arm, into my spine.

It's cause is the reason it's inoperable. I have extreme "tendon laxity," which is a fancy way to say I am double jointed and more flexible than Gumby. In short, my tendons give so much, my joints don't stay in place. This has caused "multi directional instability" in my right shoulder, meaning it flops around at willl, dislocating constantly.

Which irritates the nerve (TOS), cartilige (arthritis) and bursa (bursitis.) The standard cure would be to shorten the tendons, but because of the laxity, they would only lengthen again. Repeated surgery to shorten them again would cause scar tissue build up, defeating the purpose.

I used to have posts on BT about the combination.

here's a pdf I found -
http://rheumatology.oxfordjournals.o...t/37/4/382.pdf

http://rheumatology.oxfordjournals.o...act/34/12/1157

and some books turned up- they might be in libraries-
http://books.google.com/books?id=BpA...gaqzo#PPA23,M1

http://books.google.com/books?id=OQh...XxxzyqSpkbgIRs

http://hypermobility.org/beighton.php

:confused: If they think logically about it they should be able to realize how lax joints/tissues could easily contribute to overuse use syndromes and postural instability.
It was explained simply to me - the muscles have to work much harder to stabilize the bones and joints during use and static postures.

Most likely not the only cause of it - but a factor in the cause of RSI & TOS

Hypermobility
 

Hi LA,

I will have to print out and read the references posted by Jo55, Looks interesting.

I was injured by falling objects at one of those 'discount stores', the ones that stack inventory much too high and carelessly. (They went bankrupt the DAY BEFORE my deposition!!)

Anyway, I looked up when I heard movement and was struck on the forehead which snapped my neck back. I have to say, I believe that I would have broken my neck had I not been so hypermobile. Things did 'go black' for a moment...very scary.

My Rheumatologist told me that people who are hypermobile, tend to be injured more severely than the norm. Hence, the development of my severe, bi-lateral, neurogenic and arterial TOS and numerous secondary conditions such as RSD, Fibro, on & on.

I was told to avoid surgery at all costs as the scar tissue would return with a vengence. Sounds a bit like you. My Rheumy actually wrote a disscertation on the subject of hypermobility which has been published in medical journals. Remarkably, I have not read it..I shall have to find that article.

On a side note, I also have a rather serious case of scoliosis, (Lumbar & Thoracic). I personally believe that is also related to hypermobility. Every physician I have asked had not heard of this, but they considered it a viable possibility...so check your spine!!

There is a VERY serious version of hypermobility, I cannot recall it's name. Sadly, this is considered a fatal condition. I suspect you would have been informed if you suffered from this diagnosis. My Thoracic Surgeon told me he had a patient he had to diagnose with this and all four of her children inherited this horrible condition.

So, yes...I do believe hypermobility contributes to the progression of TOS and other injury related diagnosis. I too will be interested to know if anyone has more information on this topic. In my case, I believe being 'double-jointed' saved me from becoming a quadroplegic, but I will have a future with unrelenting pain, ALL OVER.

It is what it is, as they say.

Good Luck on your quest,
Anne :(

Hypermobility
 

Would love to see the article your rhumy wrote.
So you have TOS but never had surgery...?
I think one of the diseases related to Hypermobility is Erlos Danlos EDS..
there are many varieties some more fatal in that they effect your cardiovascular system...and the arteries structure...thus fatal.
I think I just have the joint mobility version inherited from my dad but due to his larger muscles he has had few injuries.
I had full ankle repair last year. There was no major trauma to the ankle it just slowly ...very slowly tore the ligaments apart due the laxity of the joint.
After they tore bit by bit they never healed properly...I tried everything my other muscles just couldn't hold on.
My ankle never really was the problem or most of the pain...it was all the other muscles that were trying to compensate tightened up around the nerves and would irritate the heck out of my feet and shins. It was so bad at the end I couldn't wear shoes that had tops bc it was sooooo sensitive. Following my surgery I am 80% better....of course they think I need the other ankle done.
So some think this has happened again in my shoulder....the joint is so loose due to a very minor injury. All the PT in the world is not going to hold it all together. The loose joint is causing ...subluxation (very minor forward movement) the muscles around it (shoulder/pec/neck/scap) get tight ....thus the neuro TOS symtoms.
All sounds so logical but no one knows what to do...:(

LAA--good thread. thank you.

I have hypermobility. I've had knee injuries, the first in high school for which I had a successful surgery. My tendons were shortened surgically and I don't think they lengthened much since then. However I was told to avoid overstretching the knee. The other knee was injured in my early 20's but I was able to avoid surgery by waiting it out on crutches and later strengthening the surrounding muscles. I have to work to keep my knee muscles strong to compensate. I know the hypermobility has contributed to more easily getting a LOT of repetitive strain injuries. When my neck was injured I rode a stationery bike a lot and I caused an RSI from that. When keyboarding or doing other repetitive tasks I gotten things like tendonitus... When I exercised aerobically aggressively even in the water I caused RSIs in several body parts. (I am a slow learner and am always pushing to get stronger. Over-pushing is not good for me.)

When I had neck surgery I had a discussion about this w/the very smart neuro-surgeon who informed me that my spine WAS NOT hypermobile; only my extremities. I want you to know that my knees are fine and if I keep all my muscles strong I reduce the likelihood of injuries due to hypermobility. I Love yoga but for me stretching can cause problems unless I am really strong. So I must be very aware of my body and how I use it. My hypermobility is something I can work with when I pay attention. Unfortunately right now with TOS I am not in good shape so I am not able to stretch my upper body as I would like. But I do hope to return to a strengthening program, soon for my lower body and if and when I recover enough from TOS surgery, I really hope to get my upper body strong again. For me hypermobility is just another thing I have to work around. It's not something I lose sleep over.

I would like to read some of the studies above and any add'l ones you find. btw-I spent a lot of time wondering if my shoulder was injured and how it related to the TOS. It just seemed injured but it was all TOS. In the end it matters only what I do about treating and respecting and listening to my body. I was told by my old Feldenkreis practitioner that I could never ever again afford not to pay attention to my body. That teaching has really sunk in now and helps me tremendously. Good luck to you.

When I saw Dr. Brantigan (he chose not to do surgery on me due to his concern with the inflammatory disease process that was going on but couldn't be identified, I had it done by Dr. Annest, and I have had some 10% relief which is welcome to me),

anyways, Dr. B always checks for hypermobility as one of his clinical items.

We discussed it - I do not have it.

So I think it's important clinically to know if you do or don't have it, and how it will respond to a rib removal / scalenectomy, etc.

God bless you all in your healing process.

I am very hypermobile in big and small joints - my fingers and toes even bend too far back. I can plant my hands flat on the floor without much effort at all, no warm-up needed. I can sit with my feet folded on top of my legs, soles pointed up, as easily as the the "normal" way. Everything bends both directions, although certainly not as far backwards as it does frontwards!

My moms' side of the family also has long limb-to-torso ratio, my siblings and I have small jaws with large teeth and a high arch or roof. Mom's sister and brother each had aneurysms, and I've learned that one of my brothers and a first cousin also had one. (Only my Uncle's was fatal). I saw a geneticist because of all these traits, and learned I do carry a hereditary connective tissue disorder (but my heart checks out fine, thank goodness), which causes the connective tissue to be too elastic. It's a defect of a certain type of connective tissue, type II I think, which is most prevalent in ligaments, soft tissue, etc. naturally.

Can't count the number of times I've "twisted" my ankles, yet never sprained them. Have never had them looked at though, since we needed blood or bones showing, or a temp over 102 to be seen by a Dr when I was a kid.
I'm sure it played a role in how quickly muscle weakness and atrophy showed up after my injury, and why it is so hard to recover any shoulder girdle stability. I was also predisposed by a long neck (10 vertebrae above the collarbone) and a couple of scalenes that took abnormal routes through the brachial plexus. But it still took a trauma to trigger the TOS, I had no pain, numbness or other sx prior to that.

I think I have the Hypermobility form of Ehlers-Danlos as well, but the US hasn't formally accepted that category, or hadn't when I was tested. The UK is ahead of us in this field, and it's very frustrating waiting for the US to catch up.

why is hypermobility a rheum. condition?
 

Is hypermobility the same or diff from double-jointed and loose ligaments?

I once was sent to a rheumatologist to be checked out, after I had a lot of cervical disk and joint issues (and post surgery), tendonitus (called that) and TOS. The rheum. asked me to raise both arms overhead and when I refused, saying that it would cause a big TOS flare, he decided that I had bursitus in both shoulders and needed a cortisone shot in each one immediately. I refused repeatedly and was finally able to leave his office, promising him that I would return but of course I never did. I didn't realize that a rheumotologist would be a good doctor to help those of us w/TOS and Hypermobility.

This opens up a whole new ball of wax, connecting terms I've been labeled correctly or not: cervical disc and joint disease, tendonitus..., fibromyalsia, RSIs, TOS, and of course hypermobility (that one self diax-but scoring 5/9 on the beighton score). Am I secretly adopted? I am the only one in my family with any of this stuff.

My understanding is that hypermobile people generally have overly elastic connective tissue so that ordinary activities that put "normal" pressure on the joints cause us problems - from hyperextending (actually bending PAST the normal position) to subluxating (having the joint come partially dislocated). The more frequently these happen, the more severe the hypermobility, I believe. And nerve entrapment is fairly common among people who are very hypermobile - some are pretty disabled.

I don't have the website bookmarked anymore, but if you do a google search, there's a good UK site for the Hypermobility Foundation or something similar to that, with a LOT of good information, as well as discussion boards.

I think the rheumy is a Dr of choice because it is a genetic disorder, and similar in ways but also opposite to arthritis, if you can make any sense of what I'm trying to say, LOL!

Both of my girls are the same way unfortunately, the ankles, the hips, the jaw, the fingers, somethings always getting bent too far or is out of place. My youngest seems to be the worst, don't know if this is actually the case or if she just hasn't learned to guard herself at all - seems to happen a lot at school, though she has her fair share of problems at home too! Keep telling her I'm going to put her in full body pads!

If you find the website, it will amaze you how much those with serious hypermobility are dealing with the same problems we are - and they are told by the top research Dr NOT to get shots of any kind, as they are at risk for adverse reactions! This is a UK site, I haven't found anything as informational on a US site. I may try to get a follow-up appt with my geneticist early next year and see if they can tell me any more than they knew in 2004.

beth

i found the link beth.

http://www.hypermobility.org/fitness.php

Hypermobility
 

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.

Limber or Hypermobile?
 

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