Can a person be hypermobile and not have Ehlors Danlos? Maybe a person is just very flexible. Is this possible? I wondering if a person can fit the criteria, but not have EDS.
I have seen many pictures of examples of hands of people with hypermobility, but none of normal (non EDS) hands to compare to.
I hope this doesn't sound like a weird question!
Thanks!!
I have read that there is “benign” hypermobility, meaning it is non-EDS.
I was diagnosed with a chiari malformation back in October. Just realizing that I believe (although I'd rather not believe) I also have EDS too. I fit Dr. Henderson's description in his video to the t! I hope there are no other hidden surpises with this chiari thing!!! Thanks!! Hugs!!
Have you googled the Brighton test and the Beighton test? You can screen yourself. And I agree that if you have Chiari and hypermobility you probably have EDS. I know it doesn’t feel good to keep tacking on new problems, but it will help you in the long run for getting the best treatments. 
Jenn
I watched a video with Dr. Diane Driscoll explaining Classical Ehlors Danlos the and the biten test. And it seems that I fail the test. You are so right. I really rather not tack another one on. But I'm starting to accept that things really do add up. I am so glad I waited and didn't get surgery done by the first neurosurgeon without knowing the whole picture! xxx
I have Chiari and am hyper-mobile - scored an 8 on the brighten score with my neurosurgeon. He said it would be unknown to know if I have EDS (yes he is a chiari specialist). I did have a consult with a rhumatoligist who said I was not that hyper-mobile and the only way I would find out was if I went for testing in Boston. Lastly I took my kids in to a geneticist since they are even more hyper-mobile than I am and was told we had nothing to worry about. So I guess, yes, you can have Chiari and by hyper-mobile and not have EDS. Mine was a 20 mm herniation.
You can have Joint Hypermobility Syndrome too. I believe they might just diagnose kids with this, until they are old enough to be diagnosed with EDS. EDS also involves the skins, organs, blood vessles, and more. My daughter has EDS, and is hypermobile...but she also has an odd skin texture, complaints about joint pain, bulging disks in her lumbar spine (she is 5 year old) and complaints of stomach ache often....all can be related to EDS.
Many with EDS dislocate easily (or sublux), have issues with blood pressure and heart rate (POTS), have poor wound healing, trademark scars (called cigarette scars), have stretchy or "doughy" skin, have thin skin where you can see the blood vessles, have prolapsed organs (uterus, bladder, bowel), have varicose veins, joint tears and injuries, gastrointestinal issues, large aortic root (and sometimes a mitral valve prolapse), and many more things.
Don't rely on your Neurosurgeon to diagnose you with EDS, even the Chiari experts. And just like you search for a neurosurgeon that is an expert in Chiari, you need to find a geneticist that is an expert in Ehlers-Danlos Syndrome. It is important to have the diagnosis if you do have it before any surgery. EDS'ers have some of the highest rates of complications with surgery, and some of the highest rates of surgery fail. You need to have a cardiologist (also familiar with EDS) follow you and do routine echocardiograms and checkups too.
A good site to reference for questions is ednf.org.
I have had Chiari, tethered cord and have EDS…I am flexible in some joints, but not all. I never really fit the Brighton test. There are many forms of EDS. I have A lot of the symptoms. Enough to fit the criteria. I figure that if u have Chiari and a TSC, you have a good chance of EDS.
GREAT info. And right on!
Giovanna said:
You can have Joint Hypermobility Syndrome too. I believe they might just diagnose kids with this, until they are old enough to be diagnosed with EDS. EDS also involves the skins, organs, blood vessles, and more. My daughter has EDS, and is hypermobile…but she also has an odd skin texture, complaints about joint pain, bulging disks in her lumbar spine (she is 5 year old) and complaints of stomach ache often…all can be related to EDS.
Many with EDS dislocate easily (or sublux), have issues with blood pressure and heart rate (POTS), have poor wound healing, trademark scars (called cigarette scars), have stretchy or “doughy” skin, have thin skin where you can see the blood vessles, have prolapsed organs (uterus, bladder, bowel), have varicose veins, joint tears and injuries, gastrointestinal issues, large aortic root (and sometimes a mitral valve prolapse), and many more things.
Don’t rely on your Neurosurgeon to diagnose you with EDS, even the Chiari experts. And just like you search for a neurosurgeon that is an expert in Chiari, you need to find a geneticist that is an expert in Ehlers-Danlos Syndrome. It is important to have the diagnosis if you do have it before any surgery. EDS’ers have some of the highest rates of complications with surgery, and some of the highest rates of surgery fail. You need to have a cardiologist (also familiar with EDS) follow you and do routine echocardiograms and checkups too.
A good site to reference for questions is ednf.org.
I was diagnosed with mitral valve prolapse when I was 21. It doesn't bother me as much as it used to. I had a prolapsed bladder, but had a full bladder suspension. And a prolapsed uterus twice. Had it fixed once during my bladder surgery and then when it happened again had a hysterectomy. Also a prolapsed cervix. I have dysautonomia, but the cardiologist didn't say which. My bp drops upon standing, and I've passed out because of it. So I take midodrine to control it and I'm supposed to be on a high salt diet. But I can't swallow solids easily, so struggle with that. And I was drinking poweraid, but it's irritating my stomach lately. I still have tachycardia often. But don't take meds for it. Everything dislocates, but always has, and I never really thought about it until now. And it I have this, I don't want it to interfere with my recovery from my chiari surgery. I have a ton of things I can't or wont eat because of my gastro issues. No glutens, nothing greasy of fried, no red meat, no pork (because I thought they were irritating my stomach years ago...but I just never started eating them again) no food coloring, nor carbonated beverages, no caffeine, certain artificial sweeteners, no spicy foods. And now to top it off...I can't swallow most solid foods! Life is fun these days! yeah! I lot of the stuff fits my medical history! And the Biten test or whatever its called. I guess I'd be considered double jointed. Fingers and thumbs bend backward. And arch backwards even when you don't bend them. Never really noticed before that they're a little different than my kids and husbands. Thanks for the info!
Yes, it really sounds like you have a connective tissue disorder, you have tons of red flags for it. The heart issue sounds like POTS, Post orthostatic tachacardia syndrome (and I'm sure some of that is spelled wrong, I didn't look it up lol), which can commonly occur with EDS. I believe there are some differences between dysautonomia and POTS, but I'm not exactly sure what they are.
Those with EDS or a related connective tissue disorder often have gastro issues, and gastro emptying issues. MCAS (Mast Cell Activation Disorder) often seems to occur within the EDS population, which can lead to further food allergies and gastro issues.
I strongly suggest you find a geneticist familiar with EDS. With that history, you need to carefully select your surgeon for your Chiari surgery too. Often when people have both Chiari and EDS, they have what is called an abnormal clivio-axial angle. Just think of it this way....if you have EDS, your bodies connective tissue that holds your joints in place is loose and not doing it's job correctly. The place where your neck and head meet is one large joint. Your head pivots and turns on your odontoid, which is the finger like protrusion that comes from your 2nd vertebrae. If the connective tissue is too loose, it can cause major issues like Basilar Invagination, Retroflexed odontoid, reduced clivio-axial angle, cranial cervical instability, cranial settling, and anterior brainstem compression. If these things are not taken into consideration when doing decompression, it can often lead to further issues and complications after surgery. Those w.ith EDS seem to reject bovine and synthetic dural patches more, and develop leaks due to the EDS.
Take care! Please let me know if you have any more questions. I'm not an expert, or a doctor...but since my daughter was diagnosed with Chiari and EDS 2 years ago, I've researched as much as possible to try and decide what is best for her.
This is a good website that talks about non EDS hypermobility.
Good website I was just reading: