Eds Maybe?

[sandymbme]

So the last time I saw Dr. Grubb, he said I had joint dismobility disorder, but I find myself wondering whether I have the benign form, or a form of EDS. Specifically, I am worried about the vascular form. When I had my hysterectomy a couple months ago, the ob/gyn surgeon commented on my uterus being extremely fabrile, that she actually had trouble getting it out because it kept falling apart on her. I also had to have a port/cath implanted back in may, because I am such a ridiculously hard stick. I get IV fluids 3x a week to try to stabilize my low BP, and my home health care nurses had a terrible time getting IV's started in me. On the rare occasions they got a good vein, it would blow as soon as they tried to flush it. I have an appointment with Dr. Grubb next month, are there specific questions I should ask about this?

Sandy

[mkoven]

I would check out ednf.org. there are many types of eds. and even if eds affects your vasculature, that doesn't mean you have vascular eds. according to the main eds geneticists, there is no such thing as benign hypermobility. regardless, i would see a geneticist. I see Claire Francomano in Baltimore and she is wonderful. she thinks i have some atypical form of eds that doesn't fit perfectly in given categories. since she is also a researcher, she knows a lot about the blurriness of the categories. good luck!

[sandymbme]

I have actually checked out that website, which is a big part of why I am concerned. I definitely have stretchy, velvety skin. And in the last year or so frequently have excruciating pain in one (or more) of my joints. For example, I woke up today with searing pain in my right hip, I can hardly walk. It hurts to move it, hurts to put weight on it, and hurts even when I am lying down with my weight off of it. I was just in the hospital for 6 days with horrific pain in my spine. They did MRI's of my thoracic and cervical spine, as well as my brain. The only thing they found was some thoracic disc degeneration, which they said was common for someone my age. But the pain was so bad I could not turn my head, and triggered migraines every time my pain meds wore off.

I had a physical therapist once tell me I was the oddest bundle of contradictions she had every seen. She said my joints were either super hypermobile, or had almost zero range of motion. I am more than a little worried after doing some reading up on this. I already have my hands more than full with POTS and Celiac d

Disease, I really don't need anything else!

Sandy

[mkoven]

I know it's lousy to have so many things feel wrong at once. I actually find the eds diagnosis really helpful, as it is the underlying explanation for almost all my issues. In my case eds seems to underlie POTS through the cranial cervical issues as well as stretchy veins. Knock on wood, I am generally doing okay these days. But that's only because I've found good docs and physical therapists to help stabilize joints (including my head/neck) and POTS. I see Dr. Francomano once a year, and she is a godsend. She picked up on all kinds of little things. I also get a yearly echocardiogram to keep an eye on my slightly enlarged aortic root, another eds thingy. So far, it's stable. I'm by no means normal, but now function at about 85%--meaning I can work full-time, do some socializing, get some exercise. (I have to be mindful of my limits, though, which do change from time-to-time.) This was not true before. So if there is any way to see her, it's so worth it. No one really knew before how to classify me-- as I'm flexible, but less flexible than many. But things seem to tear and pop out of place too easily. My pelvis and lower back are the sloppiest, loosest, most painful. But they have also improved with a new doc, new exercises, and a good brace.LAst summer I could barely walk. Now I can walk some distance, with my seat cane in hand.

[Sarah4444]

I agree with mkoven, I am not sure there is a benign joint mobiliy disorder that is related to POTS. There do seem to be some hypermobile people out there without all the troubles we have, but I think that those of us with POTS and hypermobility probably share some kind of connective tissue disorder that is far from benign. I know what you mean about feeling like you already have enought to worry about, but I think it's all connected - in my case, including the mast cell dysfunction. The more of us who see the same doctors with the same symptoms and history, the sooner the doctors will start to figure this out.

[louloutinks]

I went to UCLH in London and dx'd with ehlers danlos, autonomic dysfunction and POTS. The Professor told me that POTS was a very common occurance with EDSers.

I too have very silky, velvety stretchy skin, subluxtions of hips, knees and Sacro joint - which was the worse pain I have ever felt in my life.

Can you not arrange an appointment with a good rheumatologist? You need to find out what all these issues are about

[sugartwin]

I agree with everyone else. It's not so much another thing as it is THE thing. When I was racking up diagnoses a couple years ago I felt like I was getting rained on...I wanted to know the name of the cloud that was raining all these diseases and syndromes on me. It turned out to be EDS.

If you do have EDS or another, similar hereditary connective tissue disorder, then that would explain your shifty joints, your autonomic woes and perhaps even your autoimmune issues. More importantly there are baseline measurements that need to be taken: of bone density, of the aorta, etc.

I know of a very good geneticist in the Cleveland area or Dr. Grubb might be able to refer you to diagnosing geneticist. Very few doctors outside of geneticists, at least in this country, are good at recognizing and diagnosing EDS.

[comfortzone]

Agreed - there is nothing whatsover 'benign' about joint hypermobility syndrome - now touted by most in the genetics arena as EDS - HM or the hypermobile type of Ehlers-Danlos Syndrome. One in the same entity.

Even if it's not exactly EDS-HM ~ there's not yet the isolation of the gene to 'blame' our issues upon for this type of EDS...& so there may turn out to be an entire as yet un-named entity that many of us have that are flexible as all get out - but may not meet the criteria as strictly as others -- only this fine fine tooth comb approach to diagnostics through the likes of Dr. Francomano - will maybe in the future one day name yet another old but 'new' heritable disorder of connective tissue.

A skin biopsy can reveal some things - checking collagen types 1 3 and 5. While this can turn up normal - if it's not - then more tests are done - to see if it's something like osteogenesis imperfecta and other HDCT's. There is a blood protein I believe that can reveal perhaps if you have the vascular type of EDS -- some kind of blood test is done...probably info to be found on EDNF.org.

Dr. Brad Tinkle in Cincinnati is fabulous to see... And the books that are amazing are two of his that you can get on Amazon.com - the hypermobility handbook and his first one - issues and management of joint hypermobility syndrome. Then if you want to get into the science of it all the book called Hypermobility, Fibromyalgia and Chronic Pain - by Hakim, Greer and Grahame - is absolutely awesome. Pricey at near 80 dollars I think - but tell so much about Hypermobility and it's effects on the ANS and why etc..

Some of these fine docs will hold a clinic at this summers conference in Baltimore for maybe only the price of the conference for people with great need. I opted to go for the one on one personal appt. as in a regular appt.

There's another guy in South Bend, Ind. who is an orthopod working with sports medicine and musculoskeletal disorders and he has EDS himself and people really like him a lot.

Anyway I was glued to books early on because it was like someone was spelling out my life story on the pages as the book unfolded... every body system is affected by hypermobility syndrome - who'd have thought that? Gastro, endocrine, vascular, hernias, headaches, dysautonomia, bone issues, feet issues, neck issues, all of it because I can bend too much!!! Unbelievable.

Dr. Tinkle and others are trying to get the word out - and even made a phone App - of the Beighton Criteria for generalized joint hypermobility - so doctors remember to check for it!!! I saw so many doctors who never caught it.... one brilliant one that did - but even so she didn't know much but what an online patient info sheet said (that was outdated and not longer really pertinent) BUT if it weren't for her - I'd still be in the dark with dysautonomia, all these joint replacements, the vein issues, the gut issues, the severe arthritis issues...the foot problems, the sleep issues - even anxiety which is a very very common issue found with joint hypermobility - possibly to do with proprioception issues...

Anyway - it is important to learn if you feel the desire to learn & can manage somehow to get to an EDS specialist....it makes a difference ... to know people are researching and dedicating their very lives to helping people with this 'anything but benign' disorder!