I am writing about this today because I have an OVERWHELMING number of people coming to my blog that search and read my post about my migraines I know it's pretty scary out there as you start to read about EDS and start to read the blogs, the message boards and think "OMG, do I REALLY have this thing.?" Don't be afraid, attack it with knowledge, power and be ready to educate your physicians because they haven't heard of this disorder since med school! (seriously)!
I thought I needed to add a post in here to tell more about my story of my EDS!
EDS is as different as a fingerprint. I've learned that it affects each one of us differently. I've also learned that there are SO many common traits. I've found so many bizarre, unexplained pains an annoying things in my life are actually caused by my Ehlers Danlos! Now the big thing here, I am a mild case! I can run, ride a bike, swim, function daily. (most of the time). My big thing is my migraines. They are just debilitating! I've had migraines all my life! In the last 10 years, I've lived on a pain scale of 1-10 (my pain scale I might add) of a constant 2 with flux to 8's sometimes 9's. I can function with a solid 3 or 4 with no one knowing any different. I just take some drugs, and just deal with it. If you read more of this blog, you will see that I've done triathlons and just took some of my migraine meds and went on my way.
EDS affects many of my joints, recently I learned the REASON I have my migraines is the lack of muscle control in my neck. I've been doing physical therapy and I've gone from a constant 2, where I was taking pain meds 25 days a month to taking them maybe 2 or 3!!! ( I feel like doing a cartwheel on this)!!!! This is new in the last 3 weeks!
The EDS affects other joints that I used to just ignore. I thought it was old age, or wear and tear. About 10 years ago, I thought I had arthritis in my knees. I played volleyball in High School and sorta in College. I figured I just beat the crap out of them. I had the obligatory scans/ xrays, etc. I would have the normal 'arthritis' pain in the knees, they would ache, especially in weather changes. The orthopedic doctor said "well you have loose joints, but I don't see any arthritis, have a nice day." - UGH.. If he had caught it then???
My hip also "falls out" all the time, I used to think this was kinda cool as a kid. I would take my foot, wedge it under the screen door, and pull my leg out of its socket. I could move my entire leg around. It really would "feel good." Later in life (well like 3 months ago), I learned that this was REALLY bad for me, and I was further breaking down this connective tissue and just killing that socket. That joint socket continues to bother me and it continues to fall out on its own! I've learned through physical therapy that I need to strengthen the muscles around it to hold it in place. Clamshells (painful but effective). I will write about the exercises in a post.
Another area that drives me crazy is my feet! This is one that I can't ignore the pain. The bones on top of my feet fall out of place and crumble on top of each other, I can't put them back and I have to wait until they go back. I can't walk properly, so I walk on the outside of my feet and I look stupid! I can't really complain though, because as I say, I have a mild case of it, and you wouldn't know by looking at me, or by really my daily activities.
My right shoulder also doesn't stay where it belongs. I joined an awesome facebook group about EDS and a woman posted a funny message to her shoulder - and man I feel the same way and it pretty much sums it up "Dear Shoulder, how I wish when I wake up in the morning you would be where I left you the night before. I do hate the search and rescue mission in the morning." I have learned that I have to really CONCENTRATE on my posture. It is not second nature for me (or most with EDS). I am not aware of my body and when I think it's one place it really is NOT! I wrote a little more about my PT and awareness in this post. and This post. I learned that I hang 'end range' on my 'mouse' shoulder ( I bet more than EDS patients do). I am constantly just stressing the joint out! I'm working on it, but MAN it sucks spending HOURS and HOURS on that instead of the hours I need to be spending on my swimming, biking and running!
There are so many other aspects of EDS, not just our joints. Its connective tissue as well. I'm lucky to not have the vascular type, but that doesn't mean I wasn't checked out. I'm actually having another EKG tomorrow to re-check (just to make sure that I have no valve issues). I have to tell every physician that I go see that i have this condition. I bring my Dr. Tinkle book with me as a reference. I don't expect that they know what EDS is, I take the time to explain it and they 'vaguely' recollect it, and then they are typically eager to 'go look it up.' This is exactly what happened with my cardiologist. I actually have had an EKG, stress tests, etc in '07 for family history so I have the baseline. I saw him, told him of the EDS. He looked at me, but I approached it in the "hey you prob haven't heard of this since med school..." he said "hm hold on..." and he looked it up right there. He said, well, even though we have the baseline and the 2nd check, lets look again just to be sure. Then he started talking to me about it again, he was curious! I have been hearing horror stories of Physicians asking EDSers to "do party tricks" this is asinine! That's like asking someone with a compound fractured leg to walk on it so we can see the bone come out, just dumb. Its one thing to see one or two things to check range of motion, but don't give in to some of that! Get involved with the online support groups THEY RULE! (See below for some links).
I went to the dentist the other day for my routine visit. I had called the day before and they actually planned for me, nothing changed really, but they did a full set of xrays to check my bone loss just in case. EDS can cause people to lose their teeth (I mean just fall out). It's nice to know a little ahead of time! I have to say all of this planning is annoying for ME but prevention is really they key!
I plan to do the same thing when I get to the eye doctor later this year. I know I have symptoms in my vision, as I'm 37 years old and my prescription is STILL changing and I have a terrible astigmatism that continues to change.
Next on my list will also be to check the allergies, I have no idea if they're related but my migraines seem to be magnified when the weather changes. I have ZERO post nasal drip, or any other outward sign of allergies, no coughing, sneezing, eyes watering, etc, just the increase migraines intensity when the weather changes. Odd but now that I've connected with other EDSers, they have the same symptoms. It's amazing to connect with people that have the same thing here, especially since we're so RARE! Its so great to know I'm not alone, and to ask people "hey do you have X or Y."
Here is the facebook community for:
Ehlers Danlos Type 3 (hyper-mobility)
Ehlers Danlos Foundation- On the discussion page you can find local community.
If you have questions please "like" my facebook page FatGirl Ironman Journey" - you can find "me" on the left as an admin, send me a message if you would like! This blog isn't about my EDS, but I certainly have EDS! I really do believe that there are LOTS more of my 'mild' EDS versions out there! I'd love to help people preserve their joints; to stop using them in counterproductive ways so they don't end up in lots of pain!
I do not want to write two different blogs, but due to the # of people finding me BECAUSE Of my migraine EDS post, I feel the need to post this! I will try to post these once in a while! Please feel free to contact me via the facebook page listed above!