I've had problems with pain for about 10 years now. Just recently learned I might have EDS Hypermobility type and... I don't know what to think.
It's weird being told all of these strange things I can do aren't actually normal (thumb to forearm, various other things considered "party tricks").
I've been pushed around and told my pain isn't real and it's all in my head since I was 13, and to be close to an answer after all these years is... Wow.
It's not confirmed yet (genetics appointment in May) but, reading things about it makes me feel like I'm reading about myself. All the sprains and strains and weird bouts of tendinitis suddenly make sense. The party tricks and joint pain. It all makes sense.
lynxbun, first I want to say Welcome to the family! Second I wanted to say that I can so relate to your experience and understand exactly what you are saying. I was diagnosed with hEDS two years ago at the age of 43. I've been told the pain is all in my head since I was an infant. My shoulders would pop out whenever anyone tried to pick me up by my arms, but they would go right back in, so the doctors told my Mom that it was her imagination.
There are a few others here with EDS who will most likely pop in and give you some help as well. I'm willing to answer any questions you have, that I have the answer to, of course. :)
Welcome Lynxbun! Thank you for joining us. You will find the people here are very genuine and supportive. I can not imagine dealing with what you have dealt with all of your life...even from infancy. You have endurance not frequently found in others. I am glad that you have a name for what you have been suffering from. Isn't it strange that when people do not have a name for something or an understanding of something then they say it doesn't exist or its in the head or imagination of the sufferer? It would be impossible to make this stuff up that we have. I am glad you have found us. You won't hear from those here that it is in your head. Speak freely ! Blessings!
Welcome lynxbun! I am really happy that you finally have a diagnosis! I have also had my disease since birth & at age 41, I got my diagnosis! CREST syndrome disease. Now all the wonder of what I "was pretending" all my life is gone. My family apologized for all their dismissing of my needs.
Lynxbun, welcome welcome welcome! I am happy you found us, all the best people in the world do.( we are a special group of people) So, now what do you need? What do you want to do? What are you expectations now , being convinced finally , that you really have a disease process that affects every single aspect of your life? I ask this not to be nosy or a "downer" but to help. You are going to go through a lot of different stuff to find what helps you and what doesn't. So, use us as a sounding board, ask questions, cry, yell, shout, and laugh with.... All these wonderful warriors are here to help you along. You belong. Much love and blessings, Terri
Wow, thanks for the responses, haha. It's nice to be around others that actually understand what I'm saying.
I was ready to give up this year, honestly. I mean, all the therapies and medications never helped me one bit and I was tired of going from Doctor to Doctor, trying to figure out what was wrong with me. I was almost convinced that what the doctors in the past told me was true and I was making it all up.
The possible EDS diagnosis came about during an appointment with my doctor, because I was complaining about wrist pain and it feeling "loose". That prompted her to ask about the thumb to forearm trick, which actually surprised me because I've been able to do that for as long as I can remember. I've been referred to genetics and physical therapy because I'm hypermobile (thought it was normal for like, ever), and the physical therapist had checked my joints with the beighton score/scale and pretty much further confirmed that I am not normal lol. I scored an 8/9.
Now I'm just waiting for the genetics appointment. I have an appointment with my regular doctor on the 17th of this month, because I finally feel comfortable enough to go through with managing my pain. Regular medicines like ibuprofen, acetaminophen and naproxen don't work for me.
These past two months have been like whoa for me.
I have a question for you all, though. Have you always had problems with pain and joint instability? My chronic pain started at 13 but I remember having horrible "growing pains" in my legs that made it almost impossible for me to walk, before my teen years.
It seems like for me, injuring my foot kinda set off whatever it is I have. I got a bad case of plantar fasciitis/tendinitis in my left foot after stepping wrong at school when I was 12. Fast forward a year later, I'm suddenly having all this arm and back pain with no obvious reason. And fast forward to today, I'm now having problems with loose joints and pain in other areas of my body (knees, ankles, my "good" arm). Slowly but surely falling apart, haha. I'm not even sure it the joints have subluxated because the popping and cracking is my "normal". Never dislocated anything but I had a whole lot of sprains when I was younger.
I know every EDS patient is different, but I'm still not 100% if this is what I have or not.
Lynxbun, you could be writing my story for the most part. My problems started with my shoulders as an infant, as I told you already. But I unknowingly progressed from there.
Anytime anyone picked me up by my arms as a baby learning how to walk, Mom said I would scream and start crying. I only stopped crying when I would finally fall asleep. Because the doctor couldn't see anything on an x-ray they told Mom that she was imagining it.
I don't remember much of my childhood for unknown reasons, but the next thing I remember is when I broke my arm just before second grade. My brother, a neighbor girl and I had taken a 2 x 8 board and strung it between the roofs of two junk cars. We had even put the front seat of a car on the ground between the two cars in case someone fell. Of course I was the one to fall. LOL My left wrist hit the little lever on the side of the seat that lets the seat fold forward and I broke it. My wrist that is.
The next thing I remember is three days before the end of second grade my brother and I were riding bicycles and when I pulled into the driveway my rear tire slid out from under me and down I went. It was a bad break, but I somehow managed to avoid surgery. I was told if I had put any weight on it, even a single pound of pressure the bones would have slid past each other and I would have needed surgery. As it was I had a cast for at least six weeks.
For several years after that I would sprain my ankle at least once a month. The year I turned 16 I had pseudo tumor cereba. I almost didn't survive that. It's a swelling on the brain that looks and acts like a brain tumor.
My senior year of high school, I spraind my right knee twice in the first two months of school.
Like you I've always done "party tricks" with my hands and legs. I could not only touch my thumb to the under side of my wrist, but I could pull it backwards and touch the top side of my forearm. Both thumbs. I could twist my thumbs around so that the tips would rest above the knuckle of my index finger. You know the knuckle where your finger joins the hand, that one. I could put my hands flat on the floor not only without bending my knees, but also with my feet crossed and not bend my knees. Like you I thought I was "normal" and other people were just stiff for some reason. I could turn my foot around so I was standing toe to heal without even trying.
I had my first bought with tendinitis as a teenager after a friend stepped on my foot several time in one night.
Then I had it really bad in my right thumb after working in a chicken factory for a year.
I was 36 when I had a heart attack and when they did the angiogram they dislocated my pelvic. It was out for a year and a half before I could convince anyone that something was wrong.
I got my diagnosis of hEDS (Ehlers-Danlos Syndrome hypermobility type or type 3) at the age of 43.
I'm now 45 and I walk with a cane, wear a splint on my right wrist every day, wear a splint on both wrists at night, a brace on my right knee most days, and still have doctors tell me it's all in my head. Doctors where I live in NY don't know about EDS and are not open to learning about it.
Well, it's almost 4 am, I think I'll try to go back to sleep now, I've been typing for about 40 mins. LOL Hopefully my long windedness helps you out some. :-)
It's hard to believe how many times I've been told "you can't have dislocated ..insert body part here... because if you had it would not have gone back on it's own," or even "It's impossible that the angiogram injured your leg in any way." (This was after I could barley walk after the first angiogram) A year and a half later we'd learn that my pelvic was out of place thanks to the nurse that pulled out the sheath after the procedure. She pressed so hard to close off the artery that my foot turned blue, and the other nurse had to force her to let up on the pressure.
A couple of years ago, I reached out to shut the Jeep door. Mind you the doors are spring loaded so they sometimes close on their own. Anyway, I reached out and pulled the door shut and cried when I felt something tear in my shoulder. A local ortho doctor told me I didn't have hEDS and I didn't injure my arm in any way and that I was simply exaggerating the pain I was in. He treated me like a drug seeker even though I hadn't asked for anything for pain. I just wanted to know what was wrong with my shoulder. I have not gone back to that quack since.
My current ortho will at least order x-rays and even MRIs when I need one. My knees started cracking and popping when I walked and climbed stairs, he ordered x-rays and the radiologist report was that there was nothing wrong with my knees. The new ortho took a single look at the x-rays and told me I had severe osteoarthritis, practically bone on bone.
Last November I was getting into the Jeep when that same door that I injured my shoulder on, decided to shut on it's own when I was halfway into the Jeep. I tore my meniscus from it.