Chapter 48 of Dr. Brad Tinkle's "Joint hypermobility Handbook" briefly addresses a connection with Fibromyalgia and Hypermobility Syndrome, which often involves hip and shoulder dysplasia (also discussed separately in the book).
He mentions a study in which 40% of pediatric patients with Fibro also had hypermobility. Another study showed hypermobility was more common among adult women with Fibro.
So, I would say it's probably not uncommon at all. (I have no other percentages info).
FM attacks tendons as well as muscle, so I would think just about anything is game.
I haven't had dysplasia but one of the first non-neorological symptoms I had was sudden severe pain in left hip where I couldn't lift my leg. Since then, months later, I go through phases where my knee will hyperflex (slightly, thank goodness) without warning. I've been told this is bc of the tendons/FM. There are also days where I can't extend my arms at my side... they must be bent just a little to relieve pain. These things happen every couple of months and are painful enough. I can't imagine actually coming out of socket.
I did have a physical therapist tell me that I had hypermobility in other joints besides the ball and socket joints, so that makes sense that there is hypermobility in other places of the body and that is why I'm having this problem. That would also explain why the knees are sometimes also affected.
There are a couple of doctors who believe some patients with fibromyalgia are actually suffering from the pain that comes with having Joint Hypermobility Syndrome/Ehlers-Danlos Hypermobility Type III. Dr. Bravo, for one.
The pain comes from the muscles having to do the work that the weakened tendons and ligaments can no longer do, do to the "faulty" collagen.
How do I get a doctor who will even investigate this? It seems like if it's something one's doctor has never heard of, it gets dismissed without even so much as being looked at or even acknowledged.
I just read the Wikipedia article. OMG! I have at least a third to half of the symptoms on that first list. One of the huge ones it talks about is Functional Bowel Disorder. My entire tract has problems no matter how hard I try to follow a good regimen. And, I'm always getting lectured that I'm not doing my best. Many people get so much better following the suggestions I say I'm doing and mine sometimes has a good day or two but just doesn't work properly. And I noticed they said chronic fatigue, and the manner I understood that to be was someone who was chronically fatigued and not necessarily CFS. Could this be why I couldn't do the things the other kids could do in PE? And, why so many times I would end up in a lot of pain because of other kids colliding into me (often on purpose)? This could be why I had to beg the teacher to wrap my wrists in elastic bandages because of being required to do those push-ups that I really couldn't do mainly because of my wrists? People in my life at the time always told me they thought that my wrists would get stronger from doing all that. That never came into fruition at all! I had reason to avoid doing some things that I recognized early on would only likely cause me a tremendously painful injury, because I could feel they hyperextensions that scared me away from activities. Especially if such activities involved someone else who I had already decided was going to be too rough and clumsy with me. Could this Ehlers-Danlos Hypermobility really be the explanations for just these things on that list?
The best way to find out if you have EDS Hypermobility is to see a geneticist. They are more knowledgeable than other doctors for what to look for.
The symptoms of the different types of EDS can crossover too, which confuses docs who try to diagnose a specific type (such as vascular EDS vs hypermobility type).
No genetic marker for the hypermobility type has yet been found, but a geneticist is still your best bet for an accurate diagnosis.
Can you list all your symptoms? There are many "oddities" that go along with this collagen disorder, though of course not all of these things are seen in every patient, and many are never mentioned in online articles about EDS. Even difficulty swallowing can be a symptom!
I don't have the weird skin or the extreme hypermobility, like the pictures shown in the Wikipedia article, but I do have a measure of hypermobility. But, I have tight muscles.
The joints seem loose and unstable to me. I do bruise easily (My mother did, too.). I definitely have the kind of chronic fatigue that is not CFS. I am vulnerable to sinus infections and lung infections. I do have low muscle tone and/or weakness. I am being treated for migraine disorder. And, I definitely get a lot of myalgias or the doctor wouldn't have decided that I had FMS (along with process of elimination, of course. Took at least 10 years or more to figure that one out.) I do have Scoliosis. And, I do have functional bowel disorder. I have had carpal tunnel syndrome in the past and a similar tendonitis near the same area. I don't know if I have the uterine issue at the bottom of the list, because I have never been pregnant. And, I was told long ago I had periodontal disease, which to me means early onset.
I have absolutely no idea how to go about finding a geneticist. I doubt Medicare would pay for the testing. I do understand from the article that not a whole lot in my life would even change as far as taking care of myself if I did find out, but it would possibly help to explain some of those things being linked together.
Depending on where you live, you could either have an extremely difficult time finding a knowledgeable doctor, or you could be one of the lucky ones who lives not far from the few docs considered to be EDS "experts".
I would start by gathering any supporting info you can find, and bring it to the attention of your primary care doc. He or she may be willing to refer you to a geneticist based on your symptoms.
I think you are right that your care would not change much, unless your joints become even more unstable. In that event, there are many helpful assistive devices that have been developed for hypermobility sufferers.
In my reading yesterday I learned there may be a connection with fibromyalgia, hypermobility and something called "Morton's Toe" or Morton's foot, where the second toe (next to your big toe) is longer than your big toe. I think it's actually caused by inward pronation of the foot, which causes the big toe to develop differently, to accommodate the offset balance caused by the "weak" ankle. This situation can cause pain all through the body, and many people with hypermobility syndrome and fibro also have Morton's foot. There is a treatment for the pronation, a special type of orthotic I think, which relieves much of the fibro pain and fatigue. Supposedly.
I learn something new every day!
My son appears to have Morton's toe, but it is slight. He does not have much pain, but has very hypermobile joints, and his fatigue is actually orthostatic hypotension.
If you were diagnosed with EDS by a geneticist, it might help with care you would receive for some medical procedures, and with disability benefits if needed.