Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Ehlers-Danlos Syndrome

Jan 02, 2016 12:55 PM

I do January. There are several of us here.

Jan 02, 2016 1:42 PM

Which type are you? I'm type 1&2 (classic).

Jan 02, 2016 4:24 PM

OK , I don't know what that is? Can y'all expound on the topic? Love, Terri

Jan 02, 2016 6:16 PM

I have EDS 3 aka Hypermobility type.

Terri, our bodies make faulty collagen. EDS can affect any part of the body with collagen and our bodies are 80% collagen. In the last two years alone I have torn my rotator cuff shutting a car door (the door has a spring in it, so it shuts on it's own), dislocated my right knee putting Cinnamon rolls in the oven, dislocated my right ankle walking down the hallway, dislocated my right shoulder by sleeping, and just recently tore my meniscus (cartilage in my knee) when the cor door swung shut on it.

I have problems eating. Did you know if you eat less than 1200 calories a day for 20 more than years you can weigh over 300 lbs.

My eye sight has been 20/550 since I was in grade school. Even with glasses they can only get my vision to 20/30 in my left eye.

Medications can metabolize differently in someone with EDS. Numbing meds either don't work, take twice as much before it works, wears off faster, or even last hours longer than it should.

endf.org is an excellent resource.

Jan 02, 2016 6:22 PM

Wow!!!!! Honey I had no idea what it even was... I am sooooooooo sorry y'all have to go through this. I wasa critical care nurse , I never had a patient diagnosed with that. Thank you for sharing

Jan 02, 2016 10:33 PM

I have EDS type 1&2, which is slightly different. I suffer from daily dislocations and sublextations...which I've had multiple surgeries for. But, I also suffer from a chiari malformation and craniocervical instability. I also have POTS. All related to having EDS. I have had to have 2 brain surgeries in 2 years for my 17mm Chiari and hydrocephalus. I also need a surgery for my craniocervical instability, which is life-altering. They'll break my entire neck and fuse from C1 to T2 and pin my spine to my skull. To date, I've had 23 surgeries and 18 full dislocations on my right knee, 4 on my left and multiple dislocations on my hips, shoulders and ankles. I dislocate toes and fingers multiple times a day and sublex joints just by rolling over in bed.

In addition to the dislocations, my type has super stretchy, thin skin. I don't heal properly, bruise easily and it takes MONTHS for a simple prick on me to heal. People with EDS are at high risk for mitral valve prolapse, lens dislocations in our eyes and bleeding. EDNF is a good website, but I also tell people to Wiki it because it explains in grave detail and covers all the symptoms. :-)

Jan 02, 2016 10:39 PM

We also suffer chronic and dibaltating gastrointestinal issues. Which is why calories can be metabolized differently in us. In my case, I only weigh 100 lbs....it goes both ways. I have to eat over 3,000 calories a day to just maintain a 100 lb body. I suffer from severe IBS, a pancreatic divisum, biliary papillary stenosis, and delayed gastric emptying. I had 5 stents in my bile ducts in 2010. I've had my gallbladder removed and was put on Creon years ago.

Jan 02, 2016 10:48 PM

It literally affects every single organ in our bodies. Are bodies break down and age faster. At 32, it's estimated I have the joints of a 75 year old woman. I'm currently in pain management and require an entire team of specialists. It affects all EDS patients differently, so while one EDS patient might be mildly affected...the next my be severely dibalitated and disabled. In my case, the progression was fast and I'm unable to work outside my home. I require wheelchair assistance for long distance walks and braces to keep all my joints into place. I also suffer from severe neuropathy from brain surgeries...so walking on my feet is like someone lit them on fire.

It's awful. It really is. This isn't a "rare" condition...about 1 in every 5,000 for all EDS types (my type is a bit more rare than type 3, which is the most common form--about 1 in 20,000 for my type.) This condition just lacks awareness and funding because there's a huge lack of education in the medical field concerning EDS. It's hard to get diagnosed, and many people go YEARS without being diagnosed. It has come out more in the media here lately, as there's been several children ripped from homes for "abuse", when actually they suffer from EDS. It's actually a very fascinating condition. Lol.

Jan 02, 2016 11:40 PM

Oooo my goodness, like I said earlier, I don't recall ever seeing a patient in the critical care unit.. Wow. You are amazing!!! Welcome to our community!!! I look forward to getting to know you! Love and Blessings, Terri

Jan 03, 2016 12:04 AM

Wow I just looked up EDS and learned a lot! I'm so sorry if you are going through that! I hope you can all stay strong and continue to include your input on these posts! I enjoy learning about you all to get my mind off my CRPS!

Jan 03, 2016 8:29 AM

I wasn't diagnosed until I was a month away from being 43! I'm now just over a month away from being 45. I've tried so many pain meds, and so far none of them have made any difference. Right now I'm taking oxymorphone, and the only thing it does is make me nauseous if I lift my head, otherwise it could be a sugar tablet. I've slept maybe five hours in the last three days because of the pain in my knee. (Jeep got hungry and gasoline wasn't enough.) When I have dental work, it takes half an hour to an hour for the numbing med to kick in, then I am numb for 7-8 hours after. But when they do a steroid shot It still takes half an hour to an hour to numb, but it wears off in under half an hour!

I was 36 when I had a heart attack. The doctor did two angiograms in two days. After the first one, the nurses were taking the sheath out and putting pressure on the artery to close it off, I heard one of them say to the other "you better lighten up, her foot is turning blue!" The next day when he did the second one (he put in two stents that time) the medication wore off when he was half done. He looked astounded when I started silently crying! (I'm not a talker, and when I am in extreme pain I can't even remember how to breath). Two and a half years later, I found out that they had dislocated my pelvic during the first procedure when PT put my pelvic back in place! For two and a half years I couldn't convince anyone I was in excruciating pain. They just assumed that because I was over weight, I was just being lazy.

Jan 03, 2016 1:33 PM

I have EDS III. Glad we're all here; Zebras need zebras!

Jan 04, 2016 9:33 AM

Wow, you all really are fighters! I've have heard of EDS & read other posts, and I really appreciate your expanded explanations in layman's terms. When I read stories like y'all's it make everything I have been/am going through seem mild. (((Hugs))) & prayers to you all! 😷🙏🌼

Jan 05, 2016 1:04 AM

I was diagnosed with a chiari malformation right after I turned 30 after YEARS of being misdiagnosed with migraines. It started getting bad in 2012. My face, hands and feet would go numb, I was slowly losing my fine motor skills, my coordination and I started having black outs. I went in to the ER one time when my face and feet went numb on one side and the neurologist on call told me I was a liar because if it were neurological, it'd be all of one side. So he sent me home. From there, my toes were completely numb all of the time and my ears hurt and rang all the time, my vision was getting bad and my throat hurt all the time. No one could figure it out and nothing seemed wrong to a visible eye...so they just kept saying I had a nasty virus. This went on from 2012 to 2013.

Finally the blackouts got so bad, I Googled my symptoms and it pointed to brain cancer. So I scheduled a brain MRI the next day. They immediately called me back. I had a 17mm Chiari 1 malformation and hydrocephalus. I needed brain surgery immediately.

After surgery, I went through 44 rounds of PT to learn to use my hands again and learn to walk unassisted.

The blackouts didn't stop. I started having heart issues and they put me on a 30 day monitor and found I was in tachycardia 71% of the time, so they referred me to a cardiologist. He diagnosed me with POTS after the testing. My blood pressure sits at 85/45 on a regular basis, but my heartrate sits at 120 regularly. Upon standing, I've dropped to 39/too low to even catch and my heart rate shoots up to 180. The cardiologist put the fact I've had 2 knee surgeries for dislocations and I was diagnosed with chronic petella sublextation back in 2008, the chiari and POTS and he did the brighton test on me. I scored a 8/9. So, he sent me to Chicago for genetic screening and I scored a 9/9. I was diagnosed Sept '14 with type 1&2 Ehlers-Danlos Syndrome. We found out two weeks later that I was expecting a child, and the geneticist wanted a firm diagnosis to make sure I didn't have type 4. I submitted to genetic couseling and it was found that I do in fact have type 1&2.

The last xrays of my knees showed I'm suffering from severe osteoarthritis at the age of 32. Unlike type 3, my type affects me slightly differently. I do dislocate, mostly just located joints like fingers, toes and knees. My biggest issue is poor wound healing, severe digestive issues, heart and brain issues, a craniocervical instability, and lots of pain. I have severe neuropathy in my feet from the brain and neck surgeries and that probably hurts the most. This condition is fairly unknown, so it makes it hard for doctors to treat you. It's not curable and treatment is different for every EDS patient. It's been awful. I have 5 kids to raise and I can't even carry my 7 month olds car seat. I can't work, so it's all been on my husband. Luckily he has a good job, but we're on that line of not poor enough to get help. We have insurance, but the copays are so high, we can't pay them. So, I have to sit and suffer in pain because we can't afford to take care of any more medical bills. I've always worked at my parents business as a waitress from age 15 to 29 and after that I took a job as a bartender, so even if I was approved for disability, I'd only get $300 a month. I've been trying to suffer twice a week to work in a local tavern, short shifts and no stocking...but I cannot work full time. My health issues are far too much to work full time. I'm miserable and I feel stuck. I need to take care of myself for my kids, but I feel like I'm putting such a financial burden on my family. I just want to be normal. I can't go to amusement parks, I can't handle any long distance walking because my joints hurt so bad...I'm stuck. I can't have any fun anymore. I can't even kick back and relax and have a beer because I have an alcohol intolerance and the tachycardia is HORRIBLE afterwards and my muscles feel bruised. Even if it's just one or two. EDS has literally taken every single thing from me. It's not fair.

Jan 05, 2016 1:10 AM

I recently had an interview with TLC to possibly have a show about us. We got all the way to talking with producers, and they felt my medical conditions were "too sad" for people to want to see on primetime. A youtube commentary lady beat us out of a show. I wanted to show how people with invisible illnesses live and what it's like to be in chronic pain, because I don't think the movie "Cake" showcased us very well....it made us all look like drug addicts that are just lazy. The movie REALLY pissed me off. So I started looking for someone to document what it's really like and how much we have to fight from day to day....but TLC said it's too sad for viewers to want to watch. I'm not giving up, I want awareness for invisible illnesses and chronic pain. I get so tired of hearing "you don't look sick....you don't look disabled"--I think education and awareness is a MUST. I'm not giving up. I'm going to keep trying to find someone to document this.

Jan 05, 2016 6:58 AM

Hey fellow zebras! I'm really happy that I've found a herd here! I'm eds -ht. (Hypermobility type ) which basically means that I give new meaning to the term double jointed. So I get the fights with the street, and sidewalk.... snow wants to trip me....yes, I trip on snow....as you can tell, my sense of humor is the only thing keeping me sane! Add in the pain too.... I just love the fact that I have a herd here, and that I'm not alone...... need my herd.....

Jan 05, 2016 7:08 AM

Scaryann, you sound exactly like me! OMG! I don't freeze well, my teeth are atrocious, no matter how much I brush them, part of type 3, pain mess are a joke....thank goodness I found a dentist who understands, and will freeze me again in the middle of what he's doing, I'm tempted to tell him you just take out all my teeth, that's going to happen eventually, so why put off the inevitable? He wants to keep my teeth in my mouth as long as possible. Mind you there are times where I wonder if I'm paying his rent where his practice is.... like I said, my sense of humor. ... it's so nice when someone else gets what I go through.... love you!

Jan 05, 2016 7:42 AM

Lol, 2leftfeetstripes, I don't have EDs but I is a sexy ....giraffe.. ( neck problems,and I am tall so that is all I could come up with on short notice) <~~grinning at mahselff here .... Yep giraffe.. That'll do. Anyways, back to YOU... Welcome to the ...zoo?!?/
Glad you have finally found or caught up with your herd! You do have a rocking sense of humor! I like that! Love and Blessings, Terri

Jan 05, 2016 12:47 PM

Anyone here with type 1&2? You rarely see a classic EDS. I still have the same complications with my joints as type 3....with extra issues, too. I think the intolerance to pain relievers is all types of EDS. It takes enough lidocaine to numb a horse for me to get numb, Epidurals never worked on me, either.

Jul 13, 2017 11:31 PM

Yep. Either hEDS or cEDS. Seeing an actual geneticist who can tell me what kind I have next week instead of a rheumatologist who juts said " you have EDS"
I have daily subluxations and some dislocations, depending on activities and sleeping positions. Most of my joints subluxate but my cervical spine, wrists, shoulders, and elbows are probably the worst. But they all suck.
My skin tears easily and it is EXTREMELY sensitive. It has torn from accidently touching the side of something.
I use KT tape which is athletic-type tape that can help joints stay in place, but it gives me blisters, irritates my skin, itches, and sometimes jut rips my skin off when I remove it. I still use it when things are really bad. It's like the lesser of 2 evils.
I have back pain and it bothers me more than the partial dislocations/subluxations. I put them back in and yes, it hurts, but it's usually not too bad, I just pop it back in and there we go. But my back pain is a burning sensations with cramping and other hard to describe things.
I also have POTS which is a common comorbity. And probably other things, but seeing doctors who specialize is time consuming and expensive...

Jul 14, 2017 7:05 PM

eggs, I can so understand the burning back! I can't tell you how many times I reached back and checked to see if my back felt as hot on the outside as it does on the inside! I sublux my thumbs each and every time I move them. I have made a brace out of copper wire to stabilize my right thumb, but I can't afford the velcro to finish it right now. LOL

I also made myself some ring splints as I can't afford to buy them and my insurance won't even talk about bracing of any kind. So any bracing I do get I have to pay for or make myself. My right shoulder even dislocates if I roll over without waking up enough to remember to "hold it in".

Ready to start relieving your pain?

Join Community