Introduction(and my experience in short), as well as a question or two

Hi, my name is Steve, I'm 29 years old, live in Illinois, and was diagnosed with EDS-Hypermobility through the doctors observations. I do have symptoms of the classical type, mainly the skin involvement, as it does tear fairly easily and has quite a bit of elasticity to it.

My diagnosis is fairly new, and it was only within the last 7 or 8 years where my symptoms started to show. In fact, I had absolutely no problems with my joints, my skin, pain, or other complications during my childhood(edited in). All I know of was that I was extremely flexible, certain joints did have partial dislocations(with no pain), and I considered that I was normal, because everyone else didn't seem to think otherwise.

Now here I sit in the last few years, and it seems my life is snowballing downhill with medical complications, pain, pain, and more pain. I have torn labrums in both shoulders and both hips. I have a constantly partially dislocated wrist. I now deal with chronic pain due to joint dislocations and subluxations. I've had two ankle surgeries, one with complication on wound healing. I constantly get impact injuries such as stress fractures if I try to run(in fact, I've had stress fractures spiraling down from shins, up into my femurs-luckily the doctors caught it before they got into my hips). Constant nerve impairment in my elbows and wrists(my ulnar nerve has subluxation problems at the elbow). I do have intolerance to heat and cold, as well as some digestive problems(although not entirely sure if it's related to EDS). I'm sure there are other minor problems as well that I didn't list, but these are pretty much ones that destroy the quality of life I once had.

Now the most recent problems is experience dizziness, near fainting, rapid heart rate and pre hypertension. However, these symptoms come and go, nothing really triggers this problem. I've had a table tilt test done, however, it showed nothing. Ultra sounds on my heart, only show minor tricupsid regurgitation, so in general my heart is healthy. Is there any ideas on what can be causing this, especially since tests keep coming back normal?

Has anyone experienced going to the Mayoclinic for treatment? My cardiologist and PCP, both are trying to set up my appointments to see a battery of doctors there. I'm eager for this, but at the same time, my insurance may hold me back from going.

Stay safe and thank you for reading my wall of text,

- Steve

Edited August 16, 2012 at 7:59 pm

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Steve,
Sorry to here all the EDS stuff especially since you are so young. As regards your most recent experience with rapid heart rate, near fainting etc.,including intolerance of heat and cold. I had similar symptoms, also nothing seeming to trigger it and it was finally diagnosed as Thyroid problem . Mine was fluctuating up and down. (too much, too little). First specialist told me this was not possible... Second Thyroid Surgeon (Internationally known), said it certainly was possible. Eventually, was diag. with Hashimoto's and had partial thyroidectomy. Also, have sister's and mother with thyroid irregularities. Has anyone in your family been diagnosed with a thyroid problem???
This may not be your issue BUT, I would recommend that as part of your medical quest, you see a good Endocrinologist.
Don't settle for your GP just doing a TSH blood test. Make sure they Do a Free T3 and Free T4 as well as all other blood tests involved in a complete work-up of your thyroid, even if only to rule it out.
I also have EDS-hypermobility and sure know what it's like dealing with its pain & mysteries. Hope you have good support system.
Thanks for sharing your story. Hope you get some answers.
R

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Hi Steve,
Welcome and thanks for sharing :) I too have EDS-Hypermobility but also have heart problems. I have palpitations, dizziness, light headedness, etc. which stems from having Preventricular contractions (PVCs), Preatrial contractions (PACs), tachycardia, and regurgitation in 3 of my valves, along with some small holes. Apparently there seems to be something wrong with my electrical pacemaker thing (which causes tachy and the PVCS/PACs) and I even had an ablation to try and fix these problems but it didn't work. I'm not exactly sure why I have these heart problems as I don't seem to have VEDS so it may just be a coincidence that I have EDS and heart issues? Possibly it could be the same with you? But, I agree that you should look into the thyroid because my family has had thyroid issues and I know it can cause all kinds of weird symptoms (I almost feel its unfortunate that this was not the cause of mine :( .....). Good luck and hopefully you will find out soon! Please give us an update when you do :)

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I went to the Mayo Clinic in Jacksonville, FL and had a very lukewarm experience. Was diagnosed with "generalized ligament laxity" and given a perscription for PT. It took me going home, googling what that meant, and connecting the dots from Joint Hypermobility Syndrome to EDS. But I don't have an actual EDS diagnosis and didn't get one there. I've read some other posts from folk on this board who didn't have the best experiences there either. If you're in the midwest, I think there is a well known EDS specialist Dr. Brad Tinkle.

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If am sorry you are progressing so fast. It sounds like you are pretty active? I too think you should try a Dr. that specialized in EDS rather than the Mayo clinic. Though I have no first hand experience with the Mayo, I have a friend with a different condition, who did. It was a very expensive, traumatic time of traveling back and forth for them, having surgery away from support of family and friends and the complications had to be handled back at home, where it was never the same for her. She is not better for the experience. I am not saying the Mayo clinic did anything wrong, just it was not better in her case. Good luck.

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Hi, Steve. I know that horrible down the hill feeling, bro.

I've just turned 33. I have EDS classical type, and except for the extra precaution I've gotta had with physical activities, I was fine.

However, since a year ago, it just has keeping worst and worst. First it's the "Pain of the day" thing: when it's not your foot, it's your hand, or your fingers, or your legs... or that horrible sensation of having and ethereal pain that it's just there but you can't point where exactly.

Then, that perennial sensation of being tired and worn out. I try to go to the gym at least three times a week. Last months, I do one lousy repetition, 15 min on the thread mill... and I just feel like my soul wants to leave my body.

And finally, two weeks ago, I just' fainted in my house. Turn out my blood presure just went down the sink. :-(

I know I'm not making you feel any better, but at least now that you're not alone. If you feel like writing back, I'll be more than happy to listen.

Good luck.

(BTW: excuse my weird english: native tongue is spanish. I'm from Costa Rica).

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Steve if you are near Chicago I think Dr. Brad Tinkle might be a good bet for you to see. He just moved to Chicago form Cincinnati
And is medical clinical director of geneology and specializes in EDS and related problems. There is also a Dr. Mark Lavallee who has
EDS Classic type and he has a practice in south Bend ,Indiana not too far from chicago. Both these folks would give you good information and help answer your questions. You can Google them and learn more. I would suggest you get on both their waiting
lists and see how soon you get in. They probably have a cancelation list and you can let them know that you'd like to be called if there is a cancelation. We are very fortunate to have these two Doc's in our area. So I really hop you google them if you think they could help you. I'v heard many good things about both of them, so Good luck to ya.
Robin

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Hi Steve!

I'm 22 and from Illinois as well! I'm going to send you a friend request. Maybe you live close to me...I'm sure you don't, everyone is always from Chicago! hahaha

For going downhill, that's not unusual for people with EDS. I was one of those people. I had always had problems, many different health problems and signs, but they began to get really severe when I was around 18. Unfortunately, it had to get to the point where I could hardly walk in order to get a diagnosis. Within 3 years, I went from being a nursing student who had had some health issues, I'd always had pain, I just thought everyone else felt the same. No one looked for something like EDS because 1) They didn't know what it was or were ignorant in general and 2) Because when I was younger, a great many of my problems manifested through GI. So while they were trying to find out what was wrong with my tummy, they were ignoring the bigger picture. Today, like I said, I'm 22, I graduated from college, I wasn't able to become a nurse or go to medical school like I planned. I happen to have a very severe case of EDS, plus a lot of secondary conditions so now I rely on oxygen, a feeding tube, fluids, a wheelchair, etc. I had tried everything and I didn't give up, I didn't give in, I just didn't have a choice and I'm doing what I can to survive, I think we all are.

Finding out this diagnosis can be pretty overwhelming. We're all so different in how we are affected. Plus, most of us are constantly getting told different things by different doctors, it can be messy. The best way you can be, is to be EDUCATED! You have to be your own advocate. I know that I've run into doctors who just won't treat me, they say I'm too complicated, I've had doctors who just look at me with a puzzling look, and I've had doctors who don't know a thing about EDS and they pretend like they do. And now, I finally have some amazing doctors who have really stepped up to understand EDS and the secondaries. Also, I highly recommend Dr. Tinkle's handbook, you can order it from Amazon. It gives you a system by system break down of EDS, secondary conditions that are common in EDS. I have found that it's helpful to take to consultations, it just kind of gives the doctor a potential lead as to what's going on.

Now, your dizziness, and heart racing and such. That really sounds like Dysautonomia. It's really common in those with EDS. About the tilt table test. That's a hard thing, because some doctors believe that it's not accurate. In my case, my geneticist confidently diagnosed me based on symptoms and history, plus treatment helped....and he was very vocal that he didn't believe in the accuracy of the tilt table test. My best advice would definitely to learn about Dysautonomia, and then try to get a second opinion from a doctor who treats someone else with Dysautonomia or EDS, ask around for people from your city...you never know who you'll find! My geneticist and my primary care doctor diagnosed me, they are wonderful, and I have a great cardiologist too. With any luck, maybe you live near me!

Please feel free to ask me any questions!

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