Hi. I have read a little about the link between POTS and Ehler Danlos. However, I am wondering if the same link exists between POTS and benign joint hypermobility syndroms that is not necessarily or exactly E-D? I have been told by physiatrist years ago and by P.T. that I have the BJHS. I am 49 and have always been overly flexible (double jointed is what we called it as a kid - able to do 'weird' things with fingers, legs, etc.) Even now at 49 when I go to a P.T. or chiro, contorted with muscle spasms, etc. they say - wow, you are so flexible. But no one has said E-D. I asked the physiatrist about it years ago when being treated for a severe back problem - he said "maybe". Then told me that I was somatically obsessed. Ask one to many questions, and boom - you're "nuts". Anyhow, so I wonder if only E-D is linked or BJHS too? I will be going to Mayo next week and will ask for E-D evaluation, but from what I read I don't have all the symptoms of any one category. Thanks.
Joint hypermobility syndrome in general is associated with POTS/OI. There are other genetic collagen disorders besides EDS as well that can be associated, and some people are simply diagnosed with JHS.
I hope that answers your question.
It might be of interest to you as well that patients with POTS/dysautonomia have been noted in some research to be hyper-aware of minor symptoms and changes in their body state. This may be due to central nervous system sensitization. (The same aspect of our disorders that causes overactive sensitivity to noise/sound, light, pain, touch, etc.) So maybe you WERE "somatically obsessed" ... but as a symptom not a personality flaw? It's easier to see us as "nuts" than to realize the complexity of what is going on with us.
My son is one of those people who are currently in a POTS/OI/JHS diagnostic limbo land. He is going to see a geneticist in late Nov. to find out if he has EDS or "just" JHS. His OI is severe and he has the symptoms of POTS, but not yet formally tested or diagnosed with it.
He is going to a cardiologist again this Thurs.
He also has had CNS sensitization from a very young age. He was said to have Sensory Processing Disorder (again, not formally diagnosed, although an occupational therapist he went to, tested him a bit, and thought he should be diagnosed with SPD) It was the CNS symptoms that caused his doctor back then to suggest taking him to a psychiatrist. He had gone from being under-reactive and insensitive as a toddler, to hyper-sensitive by the time he was 7.
I believe it must have been the CNS tumor he had that caused all of this, though his doctors don't see any physical CNS damage. Yet.
It's frustrating how his doctors blame the tumor for all of his symptoms one minute, and the next, say, no, something else is causing them. They really just don't know.
That's why I like naturopathic doctors. They think in terms of the body as a whole, with interrelated systems, and understand why someone could have, for example, pain in their big toe - from a shoulder injury.
It will be interesting to see if his doctors ever agree on a diagnosis.
mmm, my "specialist" is suggesting I might have ehler-danlos syndrome, of the vascular kind, which is causing my POTs, but how could i have it only of the vascular kind, i am not in the least double jointed and i have nothing wrong with my skin, well, i had a dangerous mole in 2000, and small things, but not like what EHD does
First I should say I have not been checked for ehlos-danlos as yet but have some hypermobile joints and a family member with benign joint hypermobility syndrome.
I too want to have this checked out when I get an appt. at Mayo.
I have done some reading on the subject and noted that the vascular type is one of the hardest to diagnose and is also one of the rarest. It occurs in about 1 out of 250,000 people. You may have already read a lot about it but here is a good summery of symptoms. For sure your doctor is wanting to check this out but it may not apply or may be another form or something similar like benign joint mobility syndrome. Here is a good summery of characteristics of the vascular type.
Parrot Pal. I think there is a lot of emphasize on the positives of being flexible and some doctors do not realize that flexibility comes with negatives as well. I have a hyper mobile spine and can put both hands flat on the floor while standing with no problem. Most doctors see that and think I am wonderfully flexible but I have a lot of
low back pain and problems because of that flexibility.
Heiferly great points about sensitivity. We be inside feeling all this and looking out and that can be quite another thing.
enzymelover, I have experienced recently this hanging everything on the AD diagnoses.
It is like they forget our actual life can also involve things that people without this dx have happen routinely. I have had to fight for a few things of late because one doctor in particular wants to hang the AD causing everything instead of investigating.
I would like to say that my observation of a family member with BJHS. is it can hold it's challenges. Just because it is thought of as "not as severe" as E-D is not to say it can't disrupt one's life, cause pain, and require adaptive apparatus and bracing. It is comparable to Airway Resistance Sleep Disorder vs the designation of Sleep Apnea. They present as one having more severe symptoms but both can cause damage and the treatment is identical.
Yesterday I asked my P.T. during a session, what my seem like a silly question to some, is each segment of the spine considered a joint. He said yes and that each segment of the spine has multiple joints, not all synovial joints though. I asked because I was recently compiling paperwork for my visit to the Mayo next week and realized that I have spent what equals several months or more each year in PT for just about the past 10 years for spine, hips, knees, neck, shoulders, etc. For most of this, the same physiatrist has written the scripts. Your point is very valid to me about the doctors not necessarily looking at the JHS as possibly having larger impact on life than merely extra flexibility here and there. It is rare that a specialist these days takes the whole of everything into consideration. The most recommendation he gave me with regard to the JHS is to not do anymore yoga or extreme stretching postures or exercises. (Can you see my eyes rolling now?). When I return from the Mayo, I am going to see an Ayurvedic practitioner in South Florida for a lifestyle tune-in and tune-up. That type of practitioner is at least interested in the whole of a person, a lot like the medicine men of the Native Americans - lifestyle, impact, days, nights, foods, herbs, habits, climate, work, play, etc.
It gets more difficult for me almost each time I get on medhelp to not be angry at my physicians. I do realize my life is my life and I am responsible for it; however, they are the ones to claim to be the authoritative specialists with the licenses and skills to take care of these issues. But, somewhere along the way, all to many of them have forgotten about the patient, i.e. the human that the joint, or skin, or bones, or organ is attached to.
How many specialists do I have to mention the JHS to that gloss over it like I never said it? Could it be they are so ignorant they have no idea that there could be a health impact? Or is it they don't care because it is not a heart or brain or whatever issue that falls under their specialty? Whatever it is, it is pitiful.
I have to wonder how many people are deemed disabled and could be enabled if their physicians would listen and properly ***** and treat underlying causes of problems instead of just the problems, i.e. factoring JHS into chronic back issues or POTS, etc.
I know it gets frustrating. I have felt the same and recently.
I know that finger hypermobility is a problem for some all the way through school They can't take notes without pain. It is rarely diagnosed right and splints given. They make a huge difference for someone with this problem as they don't allow the joint to flex the wrong way which causes the need for extreme pressure and causes fatigue. For sure having some one who understands it who can give written accomodation and suggestions is paramount. Life is so impacted.
If you don't have the right braces normal tasks can be excruciating. I think a lot of doctors are not taught this. Is it a rheumatologist who would understand it or a physical therapist with a speicality or an orthopedist? There are so many other systems impacted in some of the variations of these syndromes that it behooves anyone with one to have a sheet listing all to remind especially their main practioner what it is about.
I am calling May this week. I will message you some questions I have. Good luck there! Marie
Rheumatologists do diagnose and treat some conditions of connective tissue diseases. I may have to take my son back to a rheumy, depending on what the geneticist finds.
On a test my son did in May 2009, through our nutritionist, he had a positive ANA of 1:1280, speckled pattern, which is very high and suggestive of a connective tissue disease. The rheumy did nothing about it, again because everything was blamed on the tumor. (He did say to come back sometime after the tumor was removed, and he would retest, so maybe it's time).
I suspect in my son's case that he has connective tissue breakdown due to his severe growth hormone deficiency, but, who knows, I have been known to be wrong at times :)
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