Photos


Click on any photo to enlarge. Also, it is important to note
that it damages our joints when we hyper-extend them. 

It is advised by most doctors to avoid doing any of the 

"party tricks" shown below. I have posted my photos 

for reference purposes
only. All photos are copyrighted. 
Easy bruising.
Hypermobile joints.

Floating patella (knee-cap).
Plastic "Oval-8" splints.
Hypermobile hands.
Hypermobile thumbs.
Typical bruising on legs.
Hypermobile toes.
Whoa!
Flat big toes.
Raised big toes.
Pre-Op gall bladder surgery 2009.

Post-Op gall bladder surgery - no tape and gauze - glue instead - genius!
Got NV to make May EDS Month in 2010.
Typical day in pain.
Silver Ring Splints.
Silver Ring Splints.
Meeting the amazing Dr. Brad Tinkle in 2010 at EDNF Conference.
Got OH to make May EDS Month in 2011.
Got NV to make May EDS Month in 2011.
I'm a goofball!
Excruciating pain in flank area (colored).
Doctors can't find a cause or treatment yet.
Bruising from Trigger Point Injections in flank.
Trail Spinal Cord Stimulator (SCS) in 2011. Made flank pain worse.
Stim cords were inserted and fed up into my spinal column.

23 comments:

Anonymous said...

Great reference pics.
Fellow EDSer
Born with bi-lateral hip dysplasia . . . Extremely hypermobile, bruising . . . All the typical eds symptoms and pain.
Getting older things are now progressing rapidly.
Keep the faith and keep the smile!

Anonymous said...

I am a nurse and i had a new client with this syndrome i knew nothing about your pictures were very helpful thanks

Anonymous said...

Hi, when I saw the "flank" area that you had colored on yourself, I thought wow, that's where I use to feel a ton of pain. I had a ton of dry needling to the area too that would yield temporary results. What so far seems to have calmed it down was prolotherapy. Since you already receive prolo, if you haven't already, maybe stabilizing your lumbar reason will calm these musles that are so tight on you there. Worth a try! I also get my thoracic, chest wall and neck done. Trying to be patient because my goal is painfree.

Anonymous said...

I meant lumbar region. It's morning, but sleeping pills hasn't worn off yet...ha! ha! I wish you all the best! I personally believe that the quadratus lumbor and possible other muscles are overworking in that flank area because of lax ligaments and if you can stabilize the area, it should calm down....I'm not a doc, just a patient who also was told I have eds.

jenn chandler said...

Hi,
I too have EDS and have been suffering all my life fromit, although i was only recently diagnosed. I have broken bones, bruised legs pain so bad that at one point i thought death would be better then living. I am happy to say that that is not an option, i love life and only wish not to be in pain everyday. I loved your storey and i am currently documenting my own storey. i wish you all the love and luck in the world. Love Jennifer

Anonymous said...

Hello, I've got EDS. Friends don't understand that I'm in pain every minute of every day. I mean, I wish that the doctors telling me that I should take ibuprofen for my pain could live in my shoes for a week. I literally celebrate ifI spend more than 2 days without pain! I was so excited when I first found out that I would finally have shoulder surgery, after 11 years of increasingly painful subluxations. Alas, the shortened ligament stretched out again. 1 ankle, both knees, both hips, both shoulders and both sides of my jaw have subluxed multiple times. I've never broken a bone in my body. it's hard to explain to people that although I don't have a cast or a traumatic event to explain the pain, then I must just make the shit up. most of my shoulder subluxations have happened while rolling over in bed, during sex, and changing light bulbs. I'm flexible as Hell, but if I over due anything, I'm in for muscle spasms and severe fatigue. But no one sees the pain so I'm just "lazy."

Anonymous said...

oh, and I'm bipolar (I)...

Thomas Bell said...

Hello I'm a 48 yr old male. who was just diagnosed with eds after suffering most of my life in pain. that everybody thought I was makin up just to get pain medication. basically called a drug addict . when I was in so much pain that i would go to the ER .I would be laughed at an pointed at by the doctors like I was some kinda low life .was made to feel like the lowest form of scum . just wanted to end it all came so close so many times . have had so many surgeries that was blamed on a blood disorder . an can believed they even put in my medical records self inflicted . yes because they were not intelligent enough to figured this out. I was ridiculed an made to feel like some kind of drug addict poster child.i would not recommend treatment for this medical condition .

Thomas Bell said...

hello this Thomas bell again.sorry to take up your time .but was miss quoted in my previouse post. did not say I would not recommend treatment for this condition . what I said was I WOULD NOT RECOMEND TREATMENT IN UPSTATE NY. don't understand why they didn't get it right the first time.

Liv Bente said...

Hi.
I am a 32 years old women from Norway, just happened to see your blog. I´ve got the hypermobile version as well, and I am struggling with finding anyone in my region that knows anything about this disease. The people in healthcare are actually asking ME about EDS when I try to get some help. I saw from your pictures that you have had a gall blather operation. Do you know if it is common to have problem with the gall blather? I have had stones myself, but nothing more. I have never thought about the relation of this with EDS before..

Anonymous said...

Hello just stumbled upon this site. I too have EDS although doctors are a little unsure...I have easy brusing,fragile skin and somewhat loose joints. The doubt though lays in the fact that I have high arches in my feet super wide as well, ( apparently normally with EDS you have flat feet). Also I dont see anyone in my history who may have passed this down to me. I have had 2 birth children whom praise God are not affected by this.

Dani B said...

I see some people, such as yourself, that have such severe symptoms. I believe that is why I have yet to get a concrete diagnosis. Mine are enough to disrupt my daily life, but I can usually still care for my daughter. Because my husband is in the military and I constantly change doctors, it makes it very difficult to get consistent treatment. I have hypermobile joints & basically was told it is hypermobility syndrome, which to me seems to be more like a symptom. I have persistent knee pain without injury, persistent back pain from an injury about 13 years ago. Now I am having vision problems & being told it may be glaucoma, but who knows?!? Thank you for sharing your story & so much of yourself! I wish you the best!
-Dani

Anonymous said...

HI my dear EDS people ! I am Daniela, 31 years old, with 10 years of academic education over the world. I always suffered pain, so much that my nickname was "Dolores" in Spanish. I was born in Latin America, but I live now in Europe where a genetic department diagnosed me with EDS few months ago. 1) it was good to know that my pain was real
2) no solutions make me feel lost.
I asked for a handicap parking and the doctor saw me like i saw lying.
We all have so much pain and no body understands.
My heart has also a congenital problem, my fingers hurt even with the splints, i can walk, but not too long, and i cannot have any social life, I am looking for a wheelchair, but I have nobody to push me ! :(
today i am in bed with chicken pox
i am looking for a dog to make me company, TV is my best friend.
Besitos

Nat, UK said...

Hi,

I am 28, and I can remember being so proud of my 'awesome' thumbs... I used to pop them out and giggle when other kids gasped in horror. Then they'd ask me to do it again.

I was 14 when my knee fell out. It took half an hour for the doc to believe me, and they drained three litres of fluid from under my kneecap. All I did was lift my left leg to kick a ball, and my right knee simply fell apart. I put it back in myself. That was the start.

I look at you, and our physiques are almost identical. I'm so glad you are getting the help for it! I am still trying to convince my doctor that EDS is a possibility, let alone get help. I know that I may be wrong, but the more I read about this awful illness, the more my life makes sense.

As far as my doctor is concerned, I have Fibromyalgia and very severe ME. According to her, lots of people can pop their thumbs out and bend all their fingers backwards...‼

Years of agony, years of doubt and fear, tramadol doesn't work, and last time my hip came out the hospital didn't even put it back in. Just sent me home on morphine. It took four days to reduce.

The pro's are clueless, and I just want anyone who suspects they have this to get help while they can, to keep trying different doctors, because I'm now unable to travel and I wouldn't even wish this on the vilest of criminals.

Meanwhile my kids have to watch as I fall apart in front of their eyes. I just hope with all my heart that they never have to come to me with a dislocated joint of their own.

I cope by crafting. It is now my life. I built up my skills and gave myself a reason to feel good about myself. Once I get ring splints, I'll be a one woman crafting machine! Hell to the yeah!

Be strong people, and find some meaning for yourself!

Have a beautiful life and smile at our wonderful planet that we are so lucky to have!

Heather Dymond said...

Hi
I Also Finally After Years N ThousandsOf DollarsIn Doctor Bills Was Diagnosed W EDS In 2009 Yes Is Hard No One Believes Ur In pain n That It Is Getting Worse As I AgeIt CausEd My Spine To HaveExtreme Curvature ThatThey Finally Put A Double Herring Rod On My Entire Spine When I Was 15, BC Of Two 45 Degree Curves I Have All The Same Problems As You But MyEntire Back Neck N Shoulders Hurt Constantly And They Are Always Very Stiff And Tight I Also Have Days Where I Feel ID Rather Be Dead Then Deal With The Pain And Meds They Do Give Me Isn't Strong Enough But I Can Say Since I Was Diagnosed It Has Been Easier Getting The HelP I Need I LI've In Baltimore MD And Have Some Of The Leading Specialist For EDS At John Hopkins And I HaveBeen Trying To Get Ssdi For 3 YRs Now Just Waiting To Go To Court Now BC Have Been Denied Three Times They Say BC Of My Age And Education But None Of That Matters Any More I Have Short Turm Memory Issues Can't Concentrate And Feel Like IM 80 & IM Only 32 If It Wasn't For.My Husband Staying By My Side Thru This I Would Of Prolly Killed My SelfLong Ago But Now I Am Constantly SmilingThanks To My Only 16 Month Baby Boy Who Keeps Me From That One Of My Tubes Are Clogged And TOok Ten YRs To Have Him But A Perfect Baby But Won't Know Till He's Older If He Has It Have A Pinned Nerve In Neck That Comes N Goes N Was Also Told That I Have Fybromygia And Arthritis And When They Give Me The Trigger Points In Back It Balloons Out I Have Done So Many Yrs Of Physical TherapyThat's Just A Waste Of TimeAnd Insurance Won'tCover It No More.n When My Husband Changed Jobs I Have A pre° Existing Issues That They Won't Cover Me My.Legs Hurt All The Time Just Throbbing In Pain No One Understands It And HeaT Makes The.Pain Worse IM.just Glad There Is Others To Relate And Thank U So Much For.Making People Aware.

Heather Dymond said...

Please If Anyone Has Any Ways I Can Help Stay Out Of Pain Please Let.Me know

Gina said...

My grandmother, mother, and I all had gall bladder issues. Mine actually quit working. ( all 3 have ehllors danlos)

Juan Cortes said...

Hi, I am Juan. I am 38 years old. Great Pictures. I was diagnosed with EDS type 3 almost a year ago. I went to the doctor because my knees really hurts and I felt that my legs loose strength, so I got scared. It was a funny visit to the doctor because he saw my skin, my face, my ears, even how I take the pencil, and he deducted that I have EDS! The doctor is treating me with Folic acid and the pain has improved at lot and I don't feel the lack of strength in my legs anymore. I learnt that at least in my country (Chile) about 40% of the population has some kind of EDS! So, we are not alone.

Bobbi said...

Hi,
I have never posted ( or read ) a blog, but knew when my 8 year old son was diagnosed with EDS 1 month ago that I had to reach out to understand better what this is all about. I knew when he was a toddler that something was odd. He is my 3rd child and things were different. The way he felt while holding him on my hip, very bendy and flexible etc, falling a lot, bruising easily. As he grew I brought these concerns to the pediatrician and was "fluffed" off. His feet were so flat that he was practically walking on his ankle bones. I by passed the pediatrician and took him to a pediatric orthopedist that diagnosed him with hypermobility and fit him with UCVL's ( orthotics on steroids). I kept researching on my own knowing that something wasn't quite right. EDS kept coming up when I would search his symptoms but no one would listen. As he grew he would complain when we went to amusement parks, on hikes , places that required a lot of walking etc. The short of it is, I switched to a pediatrician that listened and referred us to a specialist which asked me if I had ever heard of "EDS"? Holding back the tears, I knew we were getting somewhere. She referred us to a geneticist and with a physical exam, he was diagnosed. She examined me as well ( I am 43) and determined that I also have it and that the gene is usually passed from the mother. I have a 19year old daughter that now needs to be examined as she has complained for years of joint paint and after her tests ( RA and lymes) came back negative I just didn't know where to go from there.( She is also very flexible). My 10 year old son does not show any signs but I will probably have him examined as well. I have to say I am nervous for my 8year old and what lies ahead for him. The doctor tells me though that catching it early is a good thing. I am putting my joint paint on the back burner as we all do as parents because our kids come first. I just thought it was the whole " getting older" thing. We were both diagnosed with type 3, he moderate and myself mild. Any advice would be great! :)

Anonymous said...

I am 41 and I have EDS-HM, as well as Fibro, early osteoarthritis, rotator cuff tendinitis and Raynauds. I have had many dislocations, subluxations, fractures and live in constant pain and fatigue. As a child I had horrible growing pains, which apparently is a sign. I also used to lock up my thumbs and let the kids snap them back into place. I am only now getting the proper help. I live in Ontario and thank goodness I was ref to a great Rheum who at least believed me, and did all the right tests. But the best thing she's done is send me the the Arthritis society. They are helping with finger splints, wrist splints, exercises to help strengthen my body in areas we can to help the areas that slip out or break. They also have therapy and help to deal with the pain and to apply for financial help. What a true blessing this has been. So to people suffering like me, check out this resource in your area, if available. Due to our issues we have early arthritis, so you should be able to get a ref. I still suffer, I wake up in great pain, my hands swell due to the raynauds, my toes go blue and I'm in danger of losing my digits if not careful. I suffer bouts of costochondritis (inflammation of the sternum and rib cage) which is agony when it happens and live with heating bags on my chest with ice on my swollen collarbone (tends to slip if I lean over, into the fridge usually), a tip is glucosamine and good quality fish oil for those issues. Doesn't get rid of pain but helps and any help is a blessing. I am now unable to work, the pain and fatigue wiped out my ability to think and work effectively. I also suffer as many of you will from IBS symptoms, like we didn't have enough to deal with. I also have had a hernia for no apparent reason (now I know) in my 20's. Note to the issue of the weird pain in the side and back. We tear, we can have tiny tears that cause great pain for weeks or months until they heal. No one can see it or feel it but us, but it happens. Mostly the abdomen, but anywhere. Also to the person with high arches, I also have very high arches, but upon standing my feet fall and flatten the worst my chiro friend had seen. He fitted me for orthotics at his own expense and they've helped me from breaking my feet so often. So high arches does not mean you don't have EDS. Who knew all the "party tricks" we performed as young children were a huge red flag and someone should have noticed and helped us before we caused irreversible harm. My Love and thoughts to all of you. Let's keep learning and sharing, at least until the medical community catches up to what we all know already, this is real, it's agony, it's chronic, and we need help and understanding.

Anonymous said...

PS, I am the one with the entry above, I also have Bipolar...I wonder why we've been given mental AND such terrible physical pain? It makes life very hard. Maybe it means we're strong? Stronger than the average soul. I've decided to take it as a compliment ;-)

Anonymous said...

Hi, I'm Adina. I am fourteen and have to walk around high school with a cane.I have been a figure skater since kindergarten and have been coached by a former Olympian since I was 11. I started getting so called "growing pains" in my knees around that time. The pain only got worse, and spread through all my joints as I have aged. I used to be able to land double jumps and skate at least three times a week. Now I'm lucky if I can skate once every other week. When I do, I can't jump at all, and the pain is excruciating (imagine all that impact on the joints). I am also a serious flute student, but I can't play for more than ten minutes before all my fingers bend backward and lock, forcing me to stop. It feels like my fingers are being torn off whenever I pick up my flute. Of course, my teacher views this as an excuse even though I am in many selective ensembles, and the band director told me he thinks I'm capable of learning saxophone on top of that. Even my father, who is a doctor himself doesn't believe how much pain I'm in. I really wish that there would be more understanding about this awful disease. I'm sick of being told to deal with it, or that everybody has aches and pains sometimes. This is not normal. I was diagnosed this past year with EDS.

Leigh Randall said...

Where in Ontario are you? I'm in the southern Niagara region & there's no help available... my doctor scoffed at me & said my skin isn't stretchy enough even though it is quite stretchy. I'm on ODSP & it's been hell...