How many have fibro or autoimmune diseases in their family?

Symptoms & Treatments
21

You're welcome. I didn't mention the usual things since I figured if a doctor knows anything at all about EDS he will know to do the Beighton test. Some doctors only do that. If you have 5 of the 9 possible hypermobile joints, they diagnose you with EDS. That is the most known test. After we were diagnosed, my sister was still questioning it some but was pretty sure it was right. She asked another doctor how we knew it was right. He grabbed my thumb and pulled it toward the arm (one of the 9 points) and said 'that's how we know'.

So depending on your doctor, you may need lots of evidence or maybe not. But they don't want to diagnose it for someone that has benign hypermobility. Some people never have pain. They stop being so hypermobile as they age (I think I got more hypermobile and I suspect it is because of mast cell issues).

But if the person is flexible but doesn't dislocate, subluxate, have hernias, skin issues, muscle tears, daily pain, the feeling of rigor mortis upon awaking, dysautonomia, POTS or tachycardia, Raynaud's, fibro, digestive issues, autoimmune problems, etc., there is no reason to label them with EDS even if they have the gene.

As they age it could get worse or it might not. So it's best not to try to predict the future with EDS. Most of us get worse. I've steadily gotten worse throughout my life. All the symptoms I just listed, I have to some degree. :p

Also, the better EDS doctors who have seen other EDS patients, can see a 'look'. The pretty, smooth, soft skin is very common. It's hard to describe the look but I think there's a looseness to our look sometimes (like a ragdoll), especially if we are thin. Then we list off decades of problems like above and we look so young and healthy for our age - tada - EDS!

We joke that if you look half your age and feel twice your age, you may have EDS! That's me. I am 40, look 20 and feel 80.

I definitely agree that it is way underdiagnosed and is likely more common than one in 5000. But we don't want to count benign hypermobility or common childhood hypermobility. Many step us saying they have EDS and make a show of it. It makes it look like a fun syndrome to have. It's awful! It is destroying lives and killing people. It needs proper awareness.

22

If you have it, you need to know so you get the proper tests.

If there are any cardio symptoms like MVP or tachycardia, you need an echo of the heart and remind the technician during the echo that you need a baseline measurement of your aorta. They may want to follow up every year or two to recheck.

You may also need spine, neck and brain tests like MRIs depending on your symptoms to see if you have chiari, tethered cord, external communicating hydrocephalus, CCSVI, MS, irregular veins which may be helped with angioplasty (see prettyill.com for more about that) and you need to avoid surgery if at all possible because healing with faulty collagen is not good.

Many EDSers never heal properly after surgery and are worse than before the surgery.

My sister had surgery for carcinoid cancer. 7 months later, she had a full hernia down her front. She scheduled hernia surgery and before she got it, she got diagnosed with EDS. The surgeon said he wasn't qualified to fix a hernia for an EDSer. So she tried to find another surgeon. It took months until she got her surgery this past May (the tear was in August 2011). So far so good.

The surgeon needs to know about special stitching so it will hold.

23

I forgot diabetes.

24

Thank you so much for all of the info, Deb. My cousin did contact me today and the multitude of symptoms on that side of my family is amazing.

I have most of the symptoms you listed also. I did the Beighton scale on myself and I can't tell on my elbows so it's either a 7 or a 9 if you include that I used to be able to bend straight over and touch the floor. I could do that up until my 30's or so.

I also have more pain that I ever expected to handle. I think I've gotten more hyperomobile also. Some of my joints feel like they're going to fall apart. I subluxate and dislocate a lot. A relative by marriage said no way could I dislocate my shoulder and put it back by myself. Oh yes I can. Everything snaps, cracks, pops and crunches on it's own too.

I've steadily gotten worse too. I saw one doctor who said "you can't have this much osteoarthritis, it doesn't spread" He was looking at my xrays and shaking his head. I have most of these you listed "hernias, skin issues, muscle tears, daily pain, the feeling of rigor mortis upon awaking, dysautonomia, POTS or tachycardia, Raynaud's, fibro, digestive issues, autoimmune problems" except I don't know on Raynauds and my rheumatologist thinks I have POTS and mast cell problems but they're undiagnosed.

My mom still tells people about how I was a "floppy baby" too. It took me a long time to learn to walk, ride a bike, tie my shoes and more. I'm clumsy too and bruise easy. I used to get really tired of being told how clumsy I was as a kid though. I scar easy and heal slowly also.

I wish I were thin but I'm not. They've found a genetic thyroid issue on my mom's side. It doesn't show up in tsh tests though so it was missed for all of us until my rheumatologist (the one whose a DO and internist and worth her weight in gold) did a "full panel" on all 3 of us.

My joints are loose like crazy though and my hands look "weird" to others. I hear ya on the age thing. I used to dislike being told I looked 12 when I was 20 but the older I got the more I liked looking younger until now. People have said tons about my soft pretty skin but I'd give it up for skin that didn't hurt.

I agree that it's destroying lives and killing people. I know pf a guy it almost just killed this week. He was in the hospital and kept telling the doctors that he had EDS but they wouldn't listen. He made it though though.

My cousin seemed open to knowing about EDS and was trying to tell me all she could think of. She told me my Aunt Katherine, her mom and sister to my Dad whose name was Duell" passed of a heart valve problem. She's going to get the records out tomorrow night and look at them. The more we talked, the more she thought of. My Dad was the baby of nine. Only one is left so she was going to call Aunt Ethel Mae too. Thank you again for all of the info and help. Im fading now and need to lie down lol.

Before I forget, thank you for the info below this post too. My cousin said there were tons of hiatal hernias on that side. I had emergency surgery in 1993 or so on a huge infected ovarian cyst. The 12 inch or so scar herniated badly in 4 or 5 places, just a few years later. I seem to get worse after every surgery I have. Thank you so much again.


hugs for everyone

Susan