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EDSMay is Ehlers-Danlos Syndrome Awareness Month. What is that, you may ask?

If you’re a longtime reader of my blog, you’ll know that I have Ehlers-Danlos Syndrome.

You can read my posts from previous years (20092011, 2012) for details on what EDS is and how it has affected my life.  In short, Ehlers-Danlos Syndrome is a connective tissue disorder. My body makes collagen that is messed up on a fundamental level. Collagen is everywhere–skin, internal organs, tendons, ligaments–so bad collagen = bad lots of other stuff.

What is EDS like for me? I live every day in pain. Every joint hurts. I just don’t notice it so much anymore, but if you stopped me on any given day and asked “Sarah, does your X joint hurt?” I would undoubtedly say yes after thinking for a moment. I can feel every joint at every moment of every day, some more than others. I get fewer dislocations than I used to but rib, wrist, and knee dislocations are still common for me. I have to be careful with how I sit, move, and interact with other objects and people. I bruise easily and my skin tears easily, and subsequently it takes me forever and a day to heal. My digestion is pretty jacked up. I have quite a few allergies and chemical sensitivities, one of those weird side effects of EDS.

There is no cure for EDS.  All I can do is manage the symptoms.

As I wrote last year, I am still off of all pain medications. YAY! Want to know which pain medications? Almost all of them. I tried dozens and was on several for a very long time and at very high doses. And the meds made me, well, not me. I’m so glad to be off of them.

Recently a doctor tried to give me oxycontin for a bunch of dislocated ribs and when I turned it down he got this look on his face like I’d just turned down a few million dollars. I explained why: that it had been so hard for me to get off of these medications and I never wanted to walk down that road again. He rolled his eyes. Such is the common reaction I get in the medical community. Exhibit EDS symptoms without an official diagnosis and they think you’re either mental or that you are a drug-seeking fiend. Have the same symptoms with an EDS diagnosis and turn drugs down and they think you’re an idiot.

I have to be very selective with doctors and other medical practitioners, finding people who either are familiar with treating EDS patients or are willing to learn. Case in point: I drive over 90 minutes to get to my dentist, the only person in the SF area I’ve found who knows what she’s doing (EDS also has lots of dental, jaw, and soft tissue symptoms). The good news is I have a great primary care doctor, dentist, gynecologist, and chiropractor. Still looking for a new massage therapist after my last one changed careers to rehabilitate abused horses (but how can I be mad at him for that?).

In the interest of keeping positive, here are some positive things about having EDS:

  1. Through posting on my blog and on local and international EDS support networks, I have communicated with hundreds of other people with this disorder.  Sometimes they support me and sometimes I support them. They’re a second family, of sorts–a family that inherently understands what my life is like without ever having met me.
  2. I can do fun/scary party tricks with my joints that freak the living hell out of people, especially people under the influence of something. It’s my ace in the hole for the “Wait, wait…watch this” game.
  3. My skin is simply amazing. Take that, skin creams and face lifts!

As with past posts I want to make clear I’m not asking for pity in any way. I’m asking for understanding and awareness. If you see people, especially children, in your life who dislocate joints, have chronic pain, digestion issues, heart problems, or who bruise or cut easily–ask the doctor about EDS. Since I went public with my diagnosis in 2009, I’ve had 9 librarians and 11 other readers come to me and say they or a family member have now been diagnosed with EDS after asking their doctors (and going through the usually months-long process of referrals, tests, geneticist consults, etc.).  And that’s why I talk about it–so fewer people have to wait until their mid-twenties or later to get a diagnosis.

To learn more about Ehlers-Danlos Syndrome, check out the Ehlers-Danlos National Foundation , Ehlers-Danlos Network, and a resource list built by fellow librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources. Or, you know, you could always just ask me :D

“My name is Sarah and I still have Ehlers-Danlos Syndrome”

  1. Lori Reed Says:

    Thank you Sarah for posting about this and coming out of the (sometimes hidden) disability closet so to speak. It’s really important for us to share our stories with others so that others know they are not alone in working in libraries while having a disability.

    The one thing I wish people would know about these types of disabilities is while we may look and act like a physically healthy person, the insides of our bodies are not – we hurt, we ache, and we get fatigued more easily than most people realize. So when you see us park in handicap parking – don’t assume that we are faking it or using grandma’s placard. And while we work as hard as any of our coworkers sometimes we have to slow down and take care of ourselves.

    Thanks for continuing to be an inspiration!

  2. Christine Says:

    Hi, I’m a librarian and I have EDS. Well, sort of.

    I was finally diagnosed properly in October 2011 at 27 years old after struggling since toddler-hood in trying to communicate my pain. Now, I don’t have full blown EDS Type III, but a variation call Hypermobility Joint Syndrome. Since medical professionals can’t decide genetically if it is EDS or not, I’m treated as if I have EDS Type III. Everything is pretty much the same as Type III, but not as severe. It’s the same constant pain, fatigue, crazy immune system, and dental issues. However, I’m more prone to sublax then dislocate and only have minor skin tearing issues. I also don’t have the proper genetic history to support full EDS. Neither of my parents are effected, but “family joint” problems run on my mother’s side.

    When I finally started telling people in early 2012, one on them was a fellow librarian. She just looked at me wide-eyed and said “The Librarian in Black has EDS!”. I had to laugh just due to the fact that no one I had talked to knew what it was, but of course a librarian did right away. Once I was aware though, I went back and read your 2009 and 2011 posts. Now I look forward to your yearly post on awareness. They remind me that I’m not alone.

    Thank you reminding me.

  3. Madere Says:

    Hi, Sarah, I am a big fan of your blog. I wanted to let you know about a new support group for EDS powered by the Ben’s Friends Rare Diseases Network:

    http://www.ehlersdanlossyndromesupport.org/

    We also have a community for chiari malformation:

    http://www.chiarisupport.org/

    You are welcome to visit either or both and link to your blog through our websites. Best wishes!

  4. ElasticBandEDS Says:

    For all EDSers out there:

    http://www.youtube.com/watch?v=FXLlMtdzKxM This is a song written for EDS Awareness Month. It’s called The Cure by Kitty Richardson (age 12). I wonder if it rings as true for you as it does for me?

    xxx :-)

  5. Natalie White Says:

    Hi guys! My name is Natalie white I’m also I suffer off Ehlers Danlos syndrome but I’m a type 7a. Im writing to let you all know if you didn’t know already that we have sport groups all over face book! Your more than welcome to join us we would love to add more zebras to the family :).

  6. Kitty Says:

    Hi Sarah,
    Your story is my story too. Stay strong!
    <3

  7. Mysti Reutlinger Says:

    Hi Sarah,

    I want to thank you for your post from 2009 (and subsequent posts) about EDS. I have EDS (I know this, though have no formal diagnosis… yet). In April, I opted to leave my very demanding, stable position as a restaurant manager due to pain and a highly inconsistent schedule that allowed me not enough sleep. The combination was unbearable and I became someone I did not like; one very angry woman at work and at home. No bueno!

    I’ll get back on track here with my comment. :) I have explained, until blue in the face, what I have felt to my husband. He finally did some internet searching last night and came across your blog from 2009 and he began to realize that the pain I’ve described, the joints out of place, and why I disappear off to bed alone without thinking twice takes place in our home. He doesn’t understand chronic pain (which has been the norm for me since I was pregnant with our youngest son in 2008) or the exhaustion that comes from living life in pain. Your description of the disease and how you coped helped him to realize I wasn’t some hypochondriac.

    So thank you, again, and YOU ROCK!

  8. Chris Says:

    I had never heard of this disease until a few weeks ago when a family friend was diagnosed. Like you said, it was a long process to come to that conclusion. I am really happy to have more exposure of it, since it seems like something people should be aware of so they can be diagnosed more easily. Keep on speaking out!

  9. Clarice Melendez Says:

    What kinds of problems have you had with your hips/pelvis? I’ve been to 2 doctors and worked with 3 physical therapists, and nobody can agree on what is going on. I felt my hip dislocate while doing a warm up for an exercise video 2 months ago. Since then it’s gotten progressively worse to the point that I can’t work a full day anymore.One physical therapist – who specializes in the female pelvis – said that everything was out of place to the point that she had a hard time finding bones. She told me books would say it’s impossible for everything to be so out of place. My orthoped and another physical therapist (one of my regulars) both think that it’s my femur coming out of the socket and the rest is general instability. My therapist emailed me earlier with a theory that everybody’s coming up with a different theory because things keep shifting. She’s frustrated and thinks nobody is considering my history. She asked me to keep a detailed journal of pain/meds/activity/etc so we can look for patterns.I’ve had MRIs and x-rays and they can’t find anything (naturally, I’ve never had anything show up, at least until a 2nd review). Nobody can agree on a treatment (the orthoped wants me on crutches, 2 therapists think I need to be walking), but 3/5 of them have told me that if they don’t figure out a way to make it better I’ve got weeks-months until I’ll be in a wheelchair.I just don’t know what to do. What questions do I need to be asking? Any tips in deciding on treatments/who to listen to?

  10. Suzie Says:

    Hi Sarah,
    So I just found out from one of my Tweeps that the Librarian in Black has EDS! This was following a lengthy blog post of my own about how hard it has been getting used to the way my body is deteriorating. I was finally diagnosed with Joint Hypermobility Syndrome a few months, but the Rheumy thinks I probably have full blown EDS Type III. I am a new graduate, and have been struggling to find employment willing to take me, my wheelchair, and my flaring joints.

    Just want to say how fantastic it is to meet another librarian with the same disability!

  11. ellie d. Says:

    Me too. Librarian and I have type 3. It was a long road to figure it out. Your posts helped me to put it together and get a diagnosis, actually.

    Such an epiphany to figure out the reason for my joint pain, constant injuries, poor healing, scar tissue (keloids on the outside, myofascial stuff inside), digestive issues (including a colon blockage that put me in the hospital), hernia, and bruising.

    Taken individually, just one of those ‘well some people . . . ” but in sum, it didn’t add up why a healthy young woman with a healthy lifestyle would have all of this crap going on.

    Especially the pain. I think I thought it was my fault – not doing enough, doing too much, my weight, whatever, but then I started to look around and didn’t see other people in PT forever for various injuries without ever getting better. Even people who are also 20 lbs above ideal.

    I too have beautiful skin. I’m 42 and my skin is as fabulous today as it was at 22, albeit with a few character lines.

    Anyhow, thank you for sharing, I suspect it’s helped more people than you’ll ever know. I’m sorry you have to endure this.

  12. Lex Mathis Says:

    @Clarice Melendez – I’ve learned that the best person to treat you is an EDS specialist when it comes to serious issues PERIOD! Not a physical therapist – and not an orthopedic surgeon. I know of 2 but not know where you live here’s one: http://drbradtinkle.com/ and the Cedars Sinai center in LA has multiple specialists. Untrained PT’s can do way more harm than good. Once they get u back in shape you will likely need things like wrist braces, special push up bars. . .compression garments and unfortunately, you will have a LIMITED ranged of motion for your hips. You can strengthen the surrounding muscles with someone who is experience with the disorder but some exercises are just off limits – namely yoga ;( – My advice would be see your specialist – Listen to them and them alone, learn your limitations and go from there ;)

  13. Kirsty Says:

    Hello,
    Wow, I’ve never really felt like I could relate to anyone but I honestly feel like I do. I’m only 18, but I spend my life in chronic pain, with me unfortunatley I can#t function without pain killers so I respect you for that much. In honesty I started to look around because I’m scared, there’s no cure for EDS, I know I’m going to live a life in pain and for me thats the worst part. But I just wanted to say thank you, for sharing how you are because it reminds me that at least I’m not alone…. best wishes…Kirsty

  14. SherriGirl Says:

    Hi Sarah, Go Cougs! Thank you for speaking up and going public with your EDS, you’re very brave, positive and honest..it meant a lot to me to find your story and see the common threads from you and other’s who share in this journey of pain. There really isn’t enough information out there for such a debilitating condition. So, when people like you share their stories it does connect us. I plan to start a blog about this with time. I have suffered alone for too long, we can and should bring more attention to this issue. My life feels somewhat over..I am almost bedridden at age 44. I have four girls and worry about them and their health and if I will be around to care for them through their lives and their children. I had know idea this was going to happen, I had so many issues that the medical doctors have missed. My 4th daughter almost lost her life due to a placental abruption. After she was born my gall-bladder went bad along with my appendix and uterus. I told the docs to take out the rest of anything else that can rupture. The ‘war ‘ wounds from EDS on my body began from day one, the forceps used in delivery tore my newborn skin and left a huge scar on my scalp. As a young child I knew something was wrong, even though I could not communicate with adults and dr.’s. ‘Growing pains’ were dismissed. Muscle aches and pains were written off as the ‘flu’, skin issues were from me being to ‘rough’ and active. My mother couldn’t even comb my hair without screams of pain, I would run when she came with a brush or comb, it hurt. I have stretch marks from ‘growing too fast’ although my other friends didn’t seem to have any. I was not like other kids, I would often sprain ankles, knees, fingers – holding a pencil in school was pure agony – every day. I had countless stitches from ‘minor’ accidents and the scars did not heal, they are visible and paper thin. I couldn’t run like the other kids as my lungs are apparently deformed due to my tiny rib cage. My right hip dislocates when I walk and finally, I had to have hip surgery last year to repair damage. Every day I wake up is a marathon. Pain is with me 24/7. I can feel things you aren’t supposed to be aware of; nerves, tendons, muscles. I wake up and my muscles are tense and tight, like they are still supporting me because my ligaments and tendons have failed. Hugs hurt. My muscles are weak, tired and sensitive. I’ve been researching for a long time. I cried reading your story as it felt like you are a twin sister or someone familiar.. you are younger but much further down the road in your diagnosis and management. It took 3 days to email you after reading this. I’ve been in bed for two weeks. The weather change in Washington State in November causes havoc. I’m lucky if I can log on to my laptop once a day. It sucks. I’m tired. But willing to fight, as I can. Blessings to all who are on this road and live with chronic pain and disability. S

  15. Sarah Says:

    Thank you so much for your kind words. Your story also resonates with me. I wish you strength and power as you continue the fight.

  16. I Still Have Ehlers-Danlos Syndrome | EDSAwareness.com Says:

    […] Click here for the original source of this article […]

  17. Gabby Ater Says:

    I am 17 years old and was recently diagnosed with EDS. Coping with not being a “normal” teenager and having with EDS is a challenge for me, This post has truely helped me realize a couple good ways to look at having EDS that I never noticed before and probably never would have noticed otherwise. From now on, if I ever catch myself getting down, I know I can read this blog again and it will help me continue to cope with EDS in a new way,
    Thank you so much for being an inspiration to me.

  18. Sarah Says:

    Wow, Gabby, thank you so so much! Your words are an inspiration to me and I’m sure to others! Let me know if I can ever be of any assistance or support.

  19. Shawn Underwood Says:

    Hello there Sarah,
    My name is Shawn and I grew up with my Mom always telling me that we were special cause we could amaze people with our “double jointedness” as she put it when I was just a kid. Only problem is that she never told me the severity of how serious this syndrome can bee can be.
    A little background about me may be indicated . I was born into a military family at Fort Hood Army Base in Texas on 54/14/1971′ My Grandfather on my Moms side was in the Korean war and WWII. A very decorated officer indeed. My father was in the Vietnam war. Dad delt with Agent Orange quit extencively. As did my Grandpa Maybe to a lesser extent. Dad was stationed in Boston MASS when my older brother David was born. At the time My Mom was working at a plant that used furans and dioxin for mainly waterproofing wooden power poles. but pesticides as well. this was 1968 My mom and dad loved to go to the beach and claim dig. Little did they know what they were doing to their heath by eating that seafood In Mass, and the future ramifications not only for them but for Me and my brother as well. I was born premature and quite underweight. with various birth defects, Same goes for my brother born three years my senior. I wont go into all of the details. However for whatever reason my brother and I were not given the truth about how the exposure that both our parents had to Agent orange, and all the chemicals that my Mom worked with on a dayly basis, I know that my ED is not due to agent orange. the reason I bring it up is that I only had a mild symptoms until I got my Squamous cell carcinoma Diagnosis. and the Cancer treatment I think must have sparked it up big time. This was on 2/12/12 The cancer was found in my left tonsil bed. After radiation I started getting joint pain and edema, and my already less than perfect oral heath started to decline drastically And I developed lymphedema in my neck area that presents with even more swelling. well the cancer recurred with mastisit to lymph system. I had a Neck dissection that removed 33 lymph nodes (31 positive for cancer). Now I have TMJ and my head is so swollen a deformed from the removal of the left jugular and severe stenosis and leakage of the other artery that drain the head of blood along with all the lymph that ended up having to go somewhere . It went into my face and head. Steroids don’t work anymore and I was given 2 weeks to live earlier today. I just today realized that it could be a infection that is causing a lot of the swelling. but my HNO will not even entertain the possibility of this, I think they think that I am going crazy by the look in their eyes. I live in Sacramento Ca…And started looking for a dentist that understands the ins and outs outs of EDS with TMJ. that’s when I found your site. And I noticed that you mentioned a dentist who deals with it.. I think that most of my symptoms are from EDS, and with dental treatment I probably have more than the two weeks quoted me by My cancer team. (What a joke they are). Can you perhaps get back to me? I have a lot of questions I would like to ask you, Sorry for the rambling of this post. Thank youm Shawn U. PS. One good thing that has happened is that my sence of pain is almost none existence. I think because of Spinal Atrophy. I Hope the day finds you feeling not too bad!

  20. Sarah Says:

    Shawn, if you would like to get in touch, email me at librarianinblack@gmail.com. Happy to help :)

  21. Tina Says:

    Hi. I was diagnosed with JHS and EDS type 3.I have severe pain everywhere. Dizziness,IBS, nausea,off balance,panic attacks, severe TMJ, constant anxiety, some docs said I have fibro but rheumatologists says its JHS. I dont have the tender points just pain severe pain everywhere. I have intolerance to heat and cold and I have lost the ability to sweat and cool off my body. No doctor has been able to help me. I Have so much difficulty functioning .even taking a shower is difficult because of dizziness. Does thisJHS cause all of this? Is there treatment somewhere to resolve these issues? MY quality of life has been extremely low since 2007 when all these symptoms started.

  22. Sarah Says:

    Hi Tina! I’m sorry to hear about all of the various symptoms you are experiencing. I had the same issue with some doctors telling me what I had was JHS and others saying it was EDS. A genetic test confirmed EDS for me, so you may want to consider that (though the lack of a positive result on the EDS genetic test doesn’t necessarily mean you don’t have EDS). In your situation I think trying to get a firm diagnosis would be positive. It might be EDS + something else, especially given the anxiety symptoms which are unrelated to EDS but can be associated with chronic pain. I’m not sure where you’re located or what your symptoms are, but if you can get a referral to the Mayo Clinic that might be helpful in determining what’s happening in your body. I wish you luck and send good thoughts your way.

  23. Margaret Says:

    Hi all. My family is extremely flexible. We also have familial lymphedema and week connective tissue and blood sugar disorders. (Other things too, but may not be connected to said topic)

    I have a muscle problem in my upper arm, and last night decided to try to track it down. Ruled out arthritis and gout and such. And learned about Ehlers-Danlos Syndrome. It sounds like the thing. My son is more flexible than I am. Two years ago he started hurting all over. Fibromyalagia and arthritis was ruled out. Turned out that some of it was the flexibility and PT helped. The last 6 months though have been painful in his knee. The PT’s sent him for the e-ray. He has a cyst at the end of his bone. Now we are headed for the real fun part.

    It is good to have a recognition for the complete picture. Ehlers-Danlos Syndrome covers just about every little ache and pain that all of us have. It could be the reason for the hip aches – especially while walking. It walks hand in hand with everything listed above. I don’t want a drug for this diagnosis and for that other diagnosis. I want the diagnosis that is the umbrella for all of me, and go from there.

    I am fortunate, I’m basically 60. My son is not, he is 31 with 3 young children and a 13 year old. It is good to have a name to hand the doctors.

  24. Benje Says:

    Hi Sarah, my wife has been clinically diagnosed with Hypermobility Type EDS for a year and finding doctors who understand ha been a nightmare. So far the best we can do is find compassionate Fibro docs and submitting a package to get on the waiting list for Dr. Francomano in Baltimore. The real reason for my comment is to ask about your experiences on pain meds and getting off of them. My wife has been treated with opioids and clonazepam and as you said is not happy with the life they create for her/our family. We recently have tried to taper down the meds and have had to do it ourselves with no area pain clinics even willing to see us on insurance or out of pocket because she isn’t a good nerve block candidate and is already on pain meds from her primary care. Now being forced from one primary care to the next because she is “too complex” or “I don’t now how to treat her” so you “really need a specialist” (thank you, yes, the thought crossed our minds) we feel out of options and decided to conduct the taper ourselves. Obviously this is very dangerous and we have tried to be very careful. She has been able to get stop the opiods but after several days of anxiety and discoverig the Ashton Manual we have become alot more educated on benzodiazepine withdraws as of late. So with the help out some out patient services from a substance abuse psych that is willing to be educated we thought we were at least stable and able to conduct a slower taper for the clonazepam but we have found ourselves back in the middle of her original underlying pain and not sure where to go next. Niether of us want to see her back on opiods, but she basically spends all day in or around bed feeling in pain, with headackes and hopeless. Now that she is clear of opiods we are considering Low Dose Naltrexone if we can get it prescribed but we are grasping at straws. Do you have a particular previous blog entry or any advise for us/her about dealing with the struggle from pain meds to some kind of livable life? I am trying me best to understnad and help but I have no idea what she is feeling and now idea where to go next. Thanks for your time and your blog. Benje

  25. Sarah Says:

    My experience on pain medication was not a good one. At first they were like a miracle, but as I built up a tolerance I developed hyperalgesia and needed more medication to kill the same amount of pain. It was a vicious cycle. I would highly recommend finding specialized help to slowly taper off of the medication–trying to do it yourself is very difficult and can be dangerous, as you say. My success came from my induction–a process where you stop the drugs cold turkey and then take suboxone instead (which fills the same pain receptors, but is much easier to come off of). If she’s still in pain to the point where she’s unable to function, she needs medical attention. Work with whoever will help you but always be her advocate–you both need to do what’s right for her. In terms of being in pain and still trying to live life? Part of it is physical therapy and taking care of my body with diet and exercise. The other part is sheer willpower…realizing “yes I am in pain right now” but realizing that the alternative of being medicated and not myself is not the answer. It’s not an easy struggle. I wish you both the best.

  26. Kayla Chavez Says:

    Sarah, how did you bring up the subject of EDS with your doctor? I’m eighteen and my joints have been getting worse and I have many other symptoms of the hypermobiliy type. I learned about EDS when researching other medical problems I just recently learned about within the past year. I learned that EDS can occur along with those problems. It helps to know that there may at least be an answer to why someone my age would be having arthritic type pain and easily sprained joints along with other problems even if there is nothing more than pain management to help it. So back to the original reason for me writing this post. How did you bring it up with your physician without them thinking you are just a hypocondriac who likes reading about weird syndromes one the internet? I live in a rural area and the doctors rarely see anything more than the common cold and the occasional flu. I mean they told me not to worry about one of my conditions and I ended up getting surgery five months later. How do I get them to take my concerns seriously? I know you probably have many people asking for advice. It would mean a lot if you had anything that could help me. Thanks for writing this blog.

  27. Sarah Says:

    I actually did not bring it up. A rheumatologist said I “probably” had EDS, but he was going to list it as benign hypermobility syndrome because he didn’t want my medical records to put me at risk for future insurance. I said that was stupid. I researched EDS on my own, then asked the rheumatologist for a referral to a geneticist who finally made the actual diagnosis. Ask a rheumatologist to give you a Beighton Score first, and then if you rate high enough as a likely EDS-sufferer, get a referral to a geneticist. That’s my recommendation.

  28. Allison Says:

    Hi,
    I enjoyed just reading your post. We believe we have Marfan’s, but I am on the fence about it being ED.
    I am wondering what type of allergies/reactions you have. I have a bunch.
    I am posting your dinosaur pic to my FB page :-)
    Good luck and I feel your pain, literally.

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