sandymbme Posted April 20, 2011 Report Share Posted April 20, 2011 So I had my usual annual visit with Dr. Grubb, and came armed with a laundry list of questions. Not the least of which was, "I know you diagnosed me with Joint Hypermobility Disorder last year, but do you think I may have Ehlers-Danlos as well?" to which he replied, "Sandy, that is Ehlers-Danlos, Type III to be specific. We just don't call it that anymore." Doh! This is why I should pay more attention, clearly! At least it certainly explains both where my POTS came from, why I am in so much pain these days, and why I keep injuring various joints. My right ankle never gets UN-sprained anymore. Unfortunately, my failure to grasp this means that the physical therapy I had been doing for the last several weeks was doing all sorts of things which horrified the good Doctor! Sigh. So I get to ask my primary care doc for a referral for a local pain specialist and rheumatologist. Yipee. I have to say though, as much as this was always the answer I was most afraid of, now that it finally happened, I find my stress actually getting much less. Like I just don't have anything else to be afraid of. So I will count my blessings, and try to live life to the fullest I can for as long as I can.Sandy Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 20, 2011 Report Share Posted April 20, 2011 Glad he was able to provide some answers for you. Welcome to the wonderful BENDY world of EDS-HM or JHS.. whichever you prefer to be called. There is a book that "nowwhat" has recommended on here before called "joint hypermobility, fibromyalgia and chronic pain." I bought it based on her recommendation and have been devouring it. It explains so many parts of my life, past and present, that I never connected with my joint issues until reading that book. Got it in a soft-cover version off google. Gut issues, menstrual problems, migraines, hormone issues, pain problems.... all seem to be connected with the joints. Did he have any suggestions for all your GI problems and weight loss you've been experiencing? Quote Link to comment Share on other sites More sharing options...
sandymbme Posted April 23, 2011 Author Report Share Posted April 23, 2011 He actually did have a great suggestion for trying to gain some weight back. He suggested I have a heaping teaspoon of peanut butter once an hour. He said it won't really fill me up, but will add nearly a full days worth of calories to my normal intake. He also recommended a book, "Joint Hypermobility Handbook" by Brad Tinkle MD, PhD. I have it already, but I have to tell you, reading the book is kind of giving me the willies! It is so right on target, describes my symptoms exactly. Which I find kind of terrifying. On the up side of things I think this is the "missing link" between my issues, the missing puzzle peace. Now everything fits. But it also means that my pain is not going to go away, and my repeated injuries (my right ankle seems to be permanently sprained) will only continue and increase. So that is kind of hard to swallow. I had really hoped that once all of my problems were properly diagnosed, that there would be some clear treatment plan that would set me back to rights. The fact that isn't going to happen, is kind of hard to swallow. But at least I have answers now. And even answers I don't like are better than no answers at all.Sandy Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 23, 2011 Report Share Posted April 23, 2011 Sandy-I totally empathize with the ankle issue. My doc prescribed this one -http://www.amazon.com/ASO-Ankle-Stabilizing-Orthosis-Medium/product-reviews/B000TGUN7A/ref=cm_cr_pr_btm_link_3?ie=UTF8&showViewpoints=0&pageNumber=3&sortBy=bySubmissionDateDescendingI had to go to an orthodist for dispensing - I guess to make sure the size was right. I have spoken with many EDSers who recommend this brace. I wore it for about 3 months and miracles of miracles it worked.noreen Quote Link to comment Share on other sites More sharing options...
sandymbme Posted April 24, 2011 Author Report Share Posted April 24, 2011 Thanks Noreen! I have a bunch of follow ups scheduled, we'll see how it all pans out. A couple of my joints are particularly bad, my right ankle and right wrist being chief among them. Finding lots of good advice in the book, but still finding it hard reading. In a bizarre way, the fact that it describes me so perfectly, down to the many, repeated injuries I sustained playing soccer when I was little robs me of any deniability. And there is still that small part of me that wants it all to be a big misunderstanding, and it is just so clearly accurate. Sigh! I think I am impossible to please. For years I wanted a diagnosis that made sense, and now that I have one (however complicated!) I wish it was wrong!Sandy Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 24, 2011 Report Share Posted April 24, 2011 Know just how you feel. The ideal doctor appt would go like this:Patient: I have been experiencing X,Y,Z.MD: I understand completely - you have (insert word here).Patient: Really? So many medical professionals kept telling me it was all in my head.MD: No. Your issues are very real and must have profoundly impacted every aspect of your life.Patient: Thank you so much for understanding, doctor. What do we do now?MD: Just let me get out my magic wand and you will be as good as new! Quote Link to comment Share on other sites More sharing options...
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