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May is Ehlers-Danlos Syndrome Awareness Month. This is important to me because I have Ehlers-Danlos Syndrome.

Two years ago, I posted about my illness and experiences with Ehlers-Danlos Syndrome.  Today, I hope to raise awareness and to offer some hope for EDS survivors.

Ehlers-Danlos Syndrome is a genetic disorder that affects the body’s production of collagen. Considering that 30% of your body is collagen (factoid of the day), that means that 30% of my body’s systems are a bit wonky: skin, ligaments, tendons, internal organs, etc.

My post last year explains in detail what EDS is and what its effect is on a person. But here’s the short version. EDS causes every collagen cell to be faulty and programmed to be too stretchy. This means that skin, tendons, ligaments, and other collagen-heavy body parts are super-stretchy and flexible.  For example, I can touch the tips of my fingers to the back of my hand.  Joints are very unstable, painful, and dislocate often. Oh the stories I could tell about dislocated wrists, hips, ribs, and knees! Other effects are chronic systemic nerve inflammation and pain, easy scarring, eye and vision problems, digestive system problems, vascular problems, and increased overall sensitivity (food allergies, contact reactions to chemical substances, etc.).  Pretty much anywhere there’s collagen, we’re screwed.  A good way to think about EDS if you’re not familiar with it is that it feels like extreme rheumatoid arthritis in every single joint, with the addition of dislocations and lots of other nasty side effects when you least expect them.

There is no cure for EDS.  There is little hope for a cure.  There are only limited treatments to ameliorate the chronic pain and over-flexibility.

Two years ago my health was quite poor.  I was walking with a cane, on five different medications for pain, and dealing with the mental and memory side effects from these medications. And I hurt…a lot. I didn’t realize how bad it was until I was on the other side of it. Looking at photos of myself from this period, I look horrible. I look like a different person.

This year I am very pleased to offer a ray of light for other EDS patients. I got tired of my limited life and just plain decided I’d had enough. So I fought back. It wasn’t easy, but it worked.

A year ago I underwent a medical process to come off of the opioid painkillers. It’s called an induction and it sucked. Basically, I cut off my medication cold turkey and then went into withdrawal for 48 hours. Yes, that’s as bad as it sounds.  At the point that I was in “moderate withdrawal,” my system was flushed with another medication that fills the same pain receptors in the brain that the opioids did, but that medication is a lot easier to come off of (it took me a few months).  The withdrawal is everything that movies and television make it look like—nausea, flashes of hot and cold, uncontrollable movements, anxiety, difficulty thinking straight. I was convinced that I was dying—everything in my body and brain told me I was going to die, no matter the doctor’s reassurances. It was awful.

But the end result was wonderful. I am now off of all opioids and 2/3 done coming off of the one remaining non-opioid pain medication I am taking. I feel so much better. A few months after coming off of the medication, I found that my pain levels were reduced by about half. My theory is that the hyperalgesia caused by years of use of strong pain medication was creating pain where there was none before, creating more pain receptors ad infinitum.

In addition to the medication changes, I also stopped using the cane after a few months of intense physical therapy and exercise to strengthen the muscles around the joints the cane was supporting. Again, I just decided I’d had enough and did what I had to do to get myself where I wanted to be. Yay no cane!

I still do have joint pain every day, especially in my spine and hands, but my overall chronic pain is not nearly as bad as it was before. I still have limited mobility and have to be very careful about what I do physically. I still dislocate things, though less frequently (I think now that I’m actually feeling all of the pain my body is experiencing, I get the early warning signs that I should stop a potentially dangerous activity).  I can go hiking, walking, exercising, typing, writing, and cooking for much longer periods than I could before.  Despite all of the challenges and modifications I have to make, the important part is that I have a big part of my life back.

So why did I share my illness two years ago? And why do I share what’s happened since then now? Simple. In true librarian fashion, I want to share information. I want to educate people about Ehlers-Danlos Syndrome and I want to hold out a thread of hope for other sufferers of EDS. It can get better. You can adjust your life in a positive way, not always letting the disorder and your limitations rule your world. I’m happy to help, advise, support, and listen if you want me to. Pop me an email at LibrarianInBlack@gmail.com, DM me on Twitter at @TheLiB, or leave a comment below.

To learn more about Ehlers-Danlos Syndrome, check out the Ehlers-Danlos National Foundation , Ehlers-Danlos Network, and the awesome resource list built by the amazing librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources.

“Do you know what Ehlers-Danlos Syndrome is?”

  1. Jamie Says:

    Great post, Sarah! I read your initial post on this topic two years ago, and I’m so glad you are doing and feeling better. Thank you for increasing our awareness!

  2. Cathy H. Says:

    I now know how blessed I and my family have been. My fraternal grandmother was “double jointed”, My brother got a larger dose of this than I, but I also was a little more supple. None of us had the syndrom to your extent. I can only hope that my brother will warn his kids to test for it when they marry. I am glad you are feeling better, and make me wonder if I need to cut back on my own pain meds-non opinoid-for “muscular” headaches (caused by stress and allergies.) I have been trying to be more mindful, but it’s my worst season. You are a very good example to everyone on all meds, check em at regular intervals, bodies do change. I’ll remember you in my prayers.

  3. Kimberly Says:

    With a child who was recently diagnosed with EDS, and after finally figuring out that he inherited EDS from me and I from my mother, I so appreciate reading stories like yours. For years, I assumed that I had inherited a tendency to conjure chronic pain, broken bones, twisted ankles, and feeling generally tired for no good reason. Then I watched as my perfect little boy slowly became more debilitated each year, and figured I must be doing something terribly wrong if there was no medical reason for his illnesses and pains. I feared that I had influenced his psyche with my own psychosomatic pain. Finally, after months–years–of searching and reading stories like yours, I realized that we had Ehlers-Danlos. Now my son is getting excellent care at Stanford’s Lucile Packard Children’s Hospital. He has an entire team of docs who BELIEVE US! And they HELP him! Imagine that! Thanks for sharing your story. Every case is different, so you never know who will read yours and feel comforted, vindicated, and enlightened.

  4. Tria Says:

    *sigh* I’ve tried all of the stuff you listed above as helping you and none of it did much good for me. I wish it had. Lucky.

  5. Connie Harrison Says:

    I recently discovered your blog and enjoyed it because it’s witty and smart. Reading that you have a profound illness makes me admire you all the more. Best wishes for your health.

    Connie

  6. Charlotte Says:

    It’s not the illness, it’s the being ill, and fight! I can recognize. You are brave! To be a librarian and get ill is of course first to find out as much as possible, experience it, fight it, and then spread the information. The last part is the hardest, that’s why I say You are brave.
    It’s a fine and complicated balance between giving out information others can use, and get the openhearted story thrown back at oneself…
    My illness is MS, and there is nowadays meds to mitigate, I’ve tried them, injections, and been even worse from the sideeffects, than from the illness. Was nearly loosing my mind and my clear librarian memory. Your story of pain, heavy painkillers and getting oneself free of them I know!
    When I came back to the world as much as I could travel, one of the first trips was to London and Internet Librarian International 2008, and on the second morning the Shanachie guys was telling about their American traveling tour and with help from Skype gave us The Librarian in Black, Sarah Houghton-Jan…who was waiting for us in the middle of the American night!

  7. Sarah Says:

    @Tria – I completely understand your disappointment. I tried 5 years of every possible treatment, medication, at a high cost of my energy and bank account. The one thing I see as a consistent pattern in EDS survivors is that what works for one person won’t necessarily work for another. The one other thing that happened around the time I started feeling better (coming off of the pain medication) was that I discovered I had a fairly serious dairy and egg allergy. I became vegan (was already vegetarian) and I think the removal of those allergens from my system probably helped too. I think everyone should have food allergy tests…you never know what you’re putting in your body that’s causing it unnecessary angst.

    @ Charlotte – I remember that Skype interview! It was something like 2am my time. In telling others about my illness I hope to encourage others to share information about their illnesses and what has worked for them. You’re right — there is the chance someone would throw it back in my face (“oh, we won’t hire her” or “i don’t want to rely on a sick person”) but if people do that they’re idiots and I wouldn’t want to associate with them anyway :) I’m OK being open about this, but it did take many years before I felt comfortable doing so.

    @ Others – Thank you all for your encouragement and your own stories.

  8. Cara Says:

    Hi, just an LIB blog fan here. I recently attended a terrific program on stress for staff in our city. It was presented by Jeremy Hunter, an adjunt professor at the Peter F. Drucker School of Management in Claremont, California, and kidney transplant survivor. Hunter told about how he went through his kidney transplant and subsequent recovery using no pain medications at all. He is an amazing, intelligent and motivating speaker and when I read about your journey with chronic pain, it reminded me of him. He referenced one book as being key to his dealing with pain so I wanted to mention it here. As a disclaimer, I have not read the book, just glanced and some of the sections on stress, but I found it to be, like Hunter, thoughtful, intelligent and more than just your average “self help” guide. The title is “Full Catastrophe Living: using the wisdom of your body and mind to face stress, pain, and illness” by Jon Kabat-Zinn, PhD. Best to all who face daily pain, stress, and illness in finding understanding, comfort and peace!

  9. tia Says:

    Tips I’d like to share:

    Ice it. 10 minutes on. I then put it on snother area that hurts then go back to the original area.

    Pool: if you have access to a pool, spend 20 mins in it just loving around slowly and stretching in it.

    Air conditioning: may take a couple days to make a difference.

    No impact physical activity: yoga (just don’t stretch areas that are already flexible), focus on the strengthening poses and muscle stretches. Pilates, great for core work. If something feels uncomfortable, don’t do it. Rock climbing has been an way to get strong and it doesn’t hurt.

    Chripractor: when I pinch a nerve or something feels not right, a quick visit to a chiropractor helps. I always ice after.

    Birkenstocks: good shoes are essential. Birkenstock clog style have made a world of a difference.

    Sleep: our body repairs itself then. I also found I got in more pain if I didn’t get a good sleep.

    Voltaren: I’m not a drug pusher, and haven’t used Voltaren in months. But its a topical anti-inflammatory cream that really works for about 4 hours after putting some on.

    I hope everone feels better soon. I heard that when it gets really bad its a bump in the road that can last up to a year and to avoid it from happening again you need ro do strength training. I have slowly been getting back into yoga, pilates and rock climving. Doing it at a very slow pace so I don’t over do it. I was also told that the silver lining is that I will have the body of a 30 year old when I’m 70 and its supposedly true for my skin too.

  10. tia Says:

    I apoligize for the spelling. I typed it onmy phone. Loving (in the pool) should be MOVING.

  11. MeriLizzie Says:

    This was shared with me by @roxychan who I know locally and who also knows I have EDS. I’m not on opiates despite constant pain. I’m 35 with limited use of my hands. I’ve devoloped secondary issues to the EDS. I’ve Raynauds so ice/cold is painful for me. I have to use gloves, suggested by my husband, to empty the clothes washer as the wet, and often cold, clothes made my hands worse. I also have stage 3, out of 4, osteoarthritis in my right thumb, and stage 2 in my left thumb. I also have swan-necking of all fingers and bone spurs on the backs of my finger knuckles. I wasn’t diagnosed until I was 33. The Dr’s think that because I’ve used my hands so much they got worse faster. I’ve been sewing and crocheting since I was 7, until my hands got to painful. And until recently had played the violin since third grade. I also worked a lot of repetitive jobs that used my hands. I still work 5 hours a day, 5 days a week, but often am in tears by the time I get off.

    I’m typing this at 2am while awake from painsomnia, so apologize if a bit rambling. Oh yes, the reason I don’t take opiates? They have no affect on me except to knock me out for a few hours. That’s one of the other wonderful things about EDS. Resistance to pain killers and they wear off to fast. I’ve woken up from surgery too soon and dental work is a nightmare!

    I have a basic description of EDS on my blog also at MeriLizzie.com.

    Thanks!
    Suzanne
    AKA @MeriLizzie

  12. Dina Says:

    Your story is very inspiring to me, considering i have the disease as well. I also have a bleeding disorder along with it. I’ve always been more concerned about the bleeding disorder (VWD) rather than even stressing about EDS…until just recently when I learned just how serious the disease is. I’ve never really been one to worry about living a good life style either, i mean i figured because i have a small build i’m fine to smoke and not watch what i eat, well i realize now just how wrong i am. it’s good to know that there’s so many other people who have EDS though, and there’s so much support for it and awareness now. :)

  13. Mazinoz Says:

    I’m sorry, but I disagree with you. Though hyperalgesia can result from opiod addiction, it is NOT necessarily the case with EDS. Abnormal response to pain is part of EDS itself, not a result of pain killers. This has been documented and is most likely related to the dysautonomia associated with EDS.

    As a 5yr old child I would faint from mild pain, eg: my brother trod on my toe. Again as a teenager I would faint first day of my menstrual cycle due to pain with the added bonus of migraine. As a child the dental anaesthesia would not kick in till I had left the dentist, and this is still the case If the dentist didn’t wait for the numbness to kick in. A colonoscopy was interrupted as I kept waking up from the procedure, and I was not on any opiod painkillers at the time.

    I suggest you got better as a result of strengthening muscle exercises and not because you discontinued opiod painkillers. As well most of the painkillers prescribed are NOT opiod, but can give equivalent pain relief eg: Tramadol, Digesic

  14. Sarah Says:

    I will have disagree with you, and can only speak for my personal experiences. I realize EDS folks have an abnormal response to pain — the nerve involvement is incontrovertible. However, my pain got so, so much worse on the painkillers, and once off of them it was a night and day switch — not a gradual improvement as I would expect to develop through strengthening. I am 100% confident that the painkillers did create hyperalgesia in me. That’s not to say there wasn’t any other nerve involvement, but the painkillers hurt me. I don’t know about other people’s experiences, but that was mine.

    And, like you I have the same experience with anaesthesia at the dentist…in fact, I just had that happen a couple of weeks ago. It took 11 injections and 90 minutes to get me numb. I’ve also woken up during every surgery I’ve had where I was supposed to be knocked out (including two endoscopies–it’s no fun waking up with a giant tube down your throat), despite pre-warning the doctors that I’d need to be monitored closely and likely given more than the normal dosage. *sigh* They don’t listen…

    And just to be clear: I am not against the use of painkillers – I think they can help people. In my case, sadly, they made things worse.

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  16. Rob Says:

    Hey there,

    Love the piece. I would say that it’s never good to say ‘there is little hope for a cure.’ I know that’s it’s probably a ways off but there are a few helpful things that are happening right now, not least of which is the Ehlers Danlos Network trying to get enough money together to research a mouse model for Vascular EDS. It’s not a cure, but it’s a start and the more noise and support that happens, the sooner something will happen.

    The below is a link to trials for a disease called Recessive Dystrophic EB. Basically, this is a disease of collagen type VII, where the skin and fat are not properly attach and any friction causes severe blistering. They tested stem cell therapy on a mouse model and have finished Phase 1 Clinical Trials, inserting bone marrow stem cells which have helped the patients regrow enough collagen to reduce the severity of the disease. While this is not exactly the same to what is occuring in EDS, it’s definitely a step in the right direction.

    http://www.jgsf.org/research-update.html

    Don’t give up hope,
    Rob

  17. Abbie Motility Says:

    Thanks for your version of life with EDS, but unfortunately, for a lot of people, they have multiple systems that are affected by this disease. Your entire body is covered in collagen and EDS effects various forms of specific types of collagen. For some, they are affected by more than just 30% of their body. Their lungs are effected, their joints are affected, their voice box is effected, and some even nearly die from gastroparesis – a horribly painful and incurable disease, which can be caused from Ehlers Danlos Syndrome.

    Your version is limited in what the experiences of a lot of people have with EDS. Most people do not have the luxury of going off of pain medication, since every part of their body is excruciating without the pain medication. I have had EDS my entire life, and the pain has grown to an unacceptable level. I did not start pain medication until I was 33 years old. Needless to say, my pain became entirely manageable and I experienced very little pain after that. Given that your description makes pain medication appear worse for EDSers I had to say something about an entirely different experience with this syndrome.

    EDS should be taken very seriously and people should be allowed to be comfortable in whatever way works for them. Even with aggressive physical therapy, tens therapy and acupuncture, there are other parts of my body which have quit functioning as a result of EDS. I have lost 30 pounds due to Gastroparesis, I have a chronic lung condition that often requires medication and oxygen to help me breathe and also will be forced to have a hysterectomy due to adenomyosis, due to EDS. It can cause extreme pain in an ordinary person and even greater in a person that has this disease.

  18. Sarah Says:

    Abbie, thank you for sharing your story. I am sorry that EDS has affected your life as much as it has. I do know how hard it can be. I wish you nothing but the best. I can only write from my own experiences and share what’s happened to me. Going off of the pain medications was not something my doctors recommended–in fact, they told me not to do it. Off the opioid medication I am in pain every day, but less pain than I was in on the medication. The side effects of the medication, for me, were worse than the original effects of EDS. That would not necessarily be the same for everyone, but I do want to give people hope that you can try alternatives…that you can, through force of will and a lot of hard work, make your life different.

  19. Brittany Says:

    Hi! I just wanted to say how much I appreciate reading about people with EDS. I was diagnosed when I was 18 and I have been extremely lucky because I am not to the point where I have to be on prescribed pain meds yet. Some days it is extremely tempting to, but as long as I am having more good days than bad I will do without. Especially after reading the comments on this blog, it scares me that the meds could be doing more harm than good in the long run. Living with EDS is so frustrating because most of us do not look sick and often my friends accuse me of being lazy when I say how tired I am. It gets so old explaining myself over and over, I know all of us can relate to that! But I just wanted to say thanks again!

  20. Katie Says:

    I have always known that I have EDS, ever since I can remember, because my mom knew that she has it, and so when I began to show symptoms of it, she looked for ad doctor that would listen to her about it. Until I read this article, I had no idea about the pain from EDS- I have only felt pain when I’ve been injured, and my mom is currently in her late 40′s and has never had to have pain meds for EDS. Sometimes I do get tired- I did not know that that was part of EDS!- and I have alway attributed it to my mitral valve regurgitation, as my maternal grandfather recently had surgery to correct that, and we think it is my grandmother who has the gene for the EDS. I am fine, as I Irish Dance, I swim, and I’m pretty much a normal person. It bugs me that people say it is an “illness” or a “disease” (I’m kinda ok with disease, but not really), like it will go away on its own. I’m just saying this all on the off chance that someone just diagnosed with EDS reading thru this is getting really worried about how their life is going to be- to say that everything will be fine, and it may even end up being that, with the right lifestyle, they can enjoy a relatively normal life. Sometimes my shoulder hurts, but that is about it. I’m active, as is my mom, as is my grandmother (even though she has never been diagnosed and is 75 years old), and I enjoy life, although I do wish that the scars on my legs (I have the classical type) could be hidden by makeup, but they are too dark, and even scars that I have had since I was three are still paper thin.

  21. genevieve Says:

    People often told me that I was making up excuses not to take the pain killers, but when I was on them I gradually became worse too. I noticed it every time I tried them – different types too, so refuse to take them. I am so relieved to find that someone else says the same!!! What a relief – I was not as mad as people thought.

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