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Aug, 13
85
COMMENTS
Kenneth Goldschneider, MD, FAAP

About the Author Kenneth Goldschneider, MD, FAAP

Kenneth Goldschneider, MD, FAAP, is director of the Pain Management Center and is a leading expert in treating complex chronic pain conditions in infants, children and young adults.

Comments:

  1. My 4 year old son has EDS type 6, he is currently a patient at cchmc, he has undergone 3 surgeries thus far to correct severe scoliosis, he has very low muscle tone also. We have never been seen by Dr. Goldschneider, but I am very interested after reading this!

    Julie Eckstein - August 9, 2013 at 12:07 pm Reply
  2. My son and I both have eds. I teach pilates and it has been a life saver for me. Ive jad 3 doctors tell me its been my saving grace.
    My son has had alot of pt. He is 3 now and we were told he may need more as he gets older.
    So thankful for more awareness.

    annette - August 11, 2013 at 4:10 pm Reply
    1. I believe my son who is dx with eds also has scoliosis. He also suffers from chronic constipation and stomach problems.
      Does your son suffer from these things also?

      Janet - August 13, 2013 at 11:28 pm Reply
      1. My son also has eds. He also suffer from scoliosis. I never thought about scoliosis and eds being related but now that I think about it eds could cause scoliosis since the muscles is to weak to hold the joints and bones in place. My son is now 38 years old and he has a lot of back problems.

        Shaon - February 6, 2014 at 2:02 am Reply
        1. yes scoliosis and kyphosis has to do with eds I was one of the ones to get whats called kyphoscoliosis. which means I have both. degenerative disc disease as well,he forgot to add the sinus and dental problems as well as the pots.

          Josette Redwolf - April 22, 2014 at 2:53 am Reply
        2. I also have EDS and a type of scoliosis but not the regular kind (apparently my spine is twisting instead of curving), and with that came degenerative disc disorder as well.

          Physical therapy, the chiropractor, massage, and yoga are the only things that give me relief, but I have to be very careful with my yoga as there are a lot of moves that will make joint paint worse.

          I also cannot sit on my ankles for long periods of time. I once sprained my ankle sitting cross-legged.

          Yasmin - April 28, 2014 at 11:43 am Reply
        3. hello I am very interested in learning chow I could be tested for eDs my son has EDS I am 35 years old scoliosis runs in my family I have had both shoulders operated on mime really lose jointed my neck hurts all the time my back hurts all the time I am currently living in Illinois I would really like some help I’m getting tested I currently go to a pain clinic for my back and neck could you please give me some information I would really appreciate it if you could help me thank you

          Jason Behn - May 4, 2014 at 9:11 pm Reply
          1. Hi Jason,

            I reached out to Dr. Goldschneider and he recommended you contact Dr. Bradley Tinkle at Advocate Lutheran General Hospital in Chicago. He is an expert in the field.

            Rachel Camper - May 14, 2014 at 9:05 am
    2. i am a 17 year old girl with EDS. who feels hopeless about being independent and reducing pain in the future, especially when i leave for college. i am searching for some form of activity that can help, because through extensive research i have realized that the doctors in my available area cannot help me anymore than i can help myself. i was hoping pilates could help me as well, because i am desperate. could you provide further details as to what pilates you did, and how you modified it to fit EDS and help you? please please reply.

      ak - December 3, 2013 at 7:46 pm Reply
  3. [...] By:Kenneth Goldschneider, MD, FAAP [...]

  4. I’ve got type 3 & I have found that living here in the desert, in a hot dry climate, as lessened my overall pain measurably. I’m a 43 year old female who has lived all over the U.S. but it is here in the Las Vegas valley that I found much relief after moving here a year ago. I still have all kinds of symptoms, I’m far from cured, but I’m now holding a f/t job and exercise daily to boot.

    Angel - August 13, 2013 at 7:05 pm Reply
  5. I have chronic arthritis accociated with my ED. I took pilates(it was called PIYO) last summer and loved it but, I was wondering about the long-term effects on my joints. I was told anything that was heavy impact exercise(such as running) could really cause me to have a lot of rapid damage to my joints. What are your thoughts on this? What have you been told? Thanks so much for any info. you can give!

    Sharla Wood - August 13, 2013 at 7:34 pm Reply
    1. Sharla, I passed along your question to Dr. Goldschneider and he will get back to you shortly with an answer!

      Rachel Camper - August 14, 2013 at 4:14 pm Reply
  6. Me and both my sons have eds and of them complain about pain in the back neck and legs but people think they are just mimicing me.

    Jeremy nord - August 13, 2013 at 8:01 pm Reply
  7. Hi. It would be wonderful if there was this kind of help, management, & support available for adult patients living and dealing with Ehlers Danlos Syndrome & complex chronic pain conditions. Is there any thought, development, &/or programs available &/or coming down the pipeline for adults living & dealing with EDS – especially pain management & pain psychologists? And/or alternative treatments such as: physical therapy, accupuncture, botox available? Currently, their is a lack of care & treatment, medical management, & pain management for adults. Any info &/or feedback would be greatly appreciated. Thanks. Jen

    Jen - August 13, 2013 at 8:34 pm Reply
    1. Jen, I sent your questions and comments to Dr. Goldschneider and he will have a response shortly!

      Rachel Camper - August 14, 2013 at 4:18 pm Reply
      1. Thank you very much. I appreciate your time & response. Jen

        Jen - August 14, 2013 at 7:25 pm Reply
  8. My daughter and I both have EDS. Neither of us has found physio to be any help whatsoever – and none of the physiotherapists we’ve been to know anything about EDS. Our doctors just prescribe more pain meds, and tell us not to do anything that hurts.

    My daughter finds horseback riding (dressage) helps her more than physio, and I find meditation and chiro help me. Being mindful of how we move, and where our limbs are when we move, helps reduce the pain (and dislocations for my daughter).

    Susan - August 13, 2013 at 8:44 pm Reply
  9. I am a triplet, and growing up i was alot more clumbsy than my other two siblings and I had low muscle tone. Ive had knee and hip slips and come to find out i had EDS the hypermobility type. Im almost 18 now, discussing my first surgery. Havent quite found ways to help the pain yet.

    Kasie Farley - August 13, 2013 at 9:50 pm Reply
  10. I just become disabled as a dentist, after almost 30 years, due to EDS. I look fit and healthy, no one seemed to believe my level of excruciating pain. My doctors, and even my Mom, used to say it was because I was athletic, or did ballet, or run track. My dislocations, I learned quickly, to put then back in place. Due to the overhelming pain.

    I always knew there was something wrong. I learned to be very controlled in my moves, with continuous isometrics, to hold my joints together. Just to have people ask “why I seemed so uptight?”. I also learned to avoid my elbows and knees to rotate past normal. I did not want that “freak” spotlight.

    When I started to have knee bleeds, I got pitty stares, from friends and doctors, that had no idea about my condition, and sent me to a hematologist-oncologist. Now, I can not work, on my chosen profession. Something go wrong with me, almost monthly, major events, rupture muscles, tendons, pain everywhere. But I suffffer quietly, because this is my whole life training, on trying to fit in, not stand out, not complain.

    Anybody out there gets it???

    Dr Silvia Boyd - August 13, 2013 at 10:10 pm Reply
  11. I’m so glad to see acknowledgement of EDS related pain in children! Perhaps by beginning pain management in childhood we can decrease the amount of chronic pain in adulthood. Most importantly, we can make childhood better for those with EDS. My dad, brother, my two daughters (ages 17 & 11) and I all have Classical EDS. I wish we lived closer to Dr. Goldschneider!

    Joy - August 13, 2013 at 11:07 pm Reply
  12. Can those outside the US (I live in Australia) attend the online Q&A? I’ve tried putting myself down but its saying my email address is invalid.

    vanessa - August 13, 2013 at 11:07 pm Reply
    1. Yes, Vanessa, absolutely! Anyone, living anywhere, can join the online Q&A. Is the email address you used here the one you used to register? We’ll make sure you get in.

      Kate Setter - August 14, 2013 at 8:14 am Reply
      1. Dearest Dr Silvia,
        I want you to know you are heard and NOT alone! I used to have a professional life in my own former days too but now my body will not let me return to work. Loss must be faced head on no matter what it is. Loss of a career is more than losing a job. I nearly died when I first became ill, my trigger event was a nursing home discharging improperly treated sewage from their system down into our back yard where I tried to clear the drains so my children would have a dry yard. No one even expected this pollution to be there until I became too ill to walk, heading for the Dr to find my dog bleeding from both ends from it. It affected my liver and there was no dr who gave me hope of recovery. My three young ones asked ‘Daddy is Mommy going to die too like our dog?’
        But after extreme determination I forced my body to do a bit more each day in spite of the pain. I went for body therapies, learned how to meditate, learned how to use therapeutic essential oils since I could not take anything die to my liver. Roofing helped the most but its deep work, expensive and a long process. I know stress has a huge part in this too. My support system vanished. My sister married a sociopath so when she divorced him we had death threats as my husband’s police unit investigated him, so she continues to project her anger at our life rather than see reality and her actions.
        I found ways to focus my mental energies, to find something I could be so passionate about my pain did not matter. I did my best to project a healthy me not a painful me for most people will not get it. They run away. I had to find my support in hidden places or keep facing loss. I still have so many challenges and its sad we cannot be honored for our reality around most people. Even medical professionals.
        As our three kids we finishing high school we heard a Priest speak of the little people around the world who only wanted a home. Our kids asked us if we could give a child a home. Now 11 years later we have three adopted children I would walk on glass to care for. Our extended family has disowned us, a year ago my two sisters even tried to file false charges that could have put us away, all due to her paranoia. For over two years our daughter who came to us from Korea as a high special needs baby at 6months, suddenly developed extreme pain in her belly. When she arrived as an infant none of her special needs ended up an issue at all. It was jumping from a swinger, a violent nosebleed then recurrent pain events. She miss over half her school since no one could diagnose her,, curled in the fetal position for weeks at a time. We took her to so many departments, were scolded often when they nearly told her she was not in pain but wanted attention. Each department had their own view not seeing the trauma being caused by not really listening to a child, allowing her pain to rule her life when emotional support and validation would have meant so much. Even if they did not know what it was, to send us out with nothing over and over was so hard on her when she only wanted to be a student. Just like you onlymwishmto be a dentist.
        I taught her to meditate, to stretch, used the oils to lessen her pain, gave her massages, let her grieve hard, encouraged her to listen to her body even when a doctor said it was all in her mind. Trips to ER to break the pain, I had to fight to get them to let her rest just an hour once it was down to a 0 or it was back by the time we drove home. Finally I gave up here and planned a trip to Cleveland Clinic. We had to wait for months, then they mischeduled and we had to wait longer. I decided to take her to my PT for myofascial work, but the therapist asked who treated her EDS?
        I had her call the Pediatrician, get an apt with the Genetics department and finally we had a diagnosis! Now going back to many of the same doctors, they looked at her pain in a very different way. There are no drugs sadly for her pain, only strong PT. She is a very bright girl and loves to dance. I will not let her do competitive dance though she would be great for it would push her body too hard for too long. She loves her friends but being so ill for so long no one kept on touch. My sisters stopped letting their kids be pen pals, so she lost her cousins. This school year we encouraged doing drama. She can sing so she has a role dancing and singing. Because she had such a great time at practice the last few days she likely over did it. Today she is in great pain but also might have the virus going around. She struggles to be home in great fear of loss. She is so worried of being kicked out if she misses practice hearing the rules to other kids who miss practice. I am working with her on how outside messages affect her body, the mind body connection. Stress. To let go today and allow her bodynto tell her what she needs. To vent, then I encourage her to stretch, I push fluids, then put her music on for her bio feedback which is another huge tool she uses.
        I know you are in a very hard place right now and let yourself feel. Feel angry, feel sad. It is a loss. But if you work through what brought you to this point, you may uncover more than just EDS being the issue. If you can don just one thing more each day, just look at small goals, what you can do if you can’t physically do.
        Even if its supporting someone online, you did something worthwhile. Sometimes we need to learn to be human beings, not doings.
        I hope my words are ones of hope for I too am not in a great place but I look at what I can do. I do have pain, I did lose all my family, I do not have anyone I can call for support after being so consumed with our ill child so long, even all the moms in moms club no longer keep in touch. I was a giver. Now that I need, they do not know how to just be in touch. But our children are thriving! My husband and I are do, dedicated to giving our children a life of hope. But a life facing reality even when its not pretty, not simple and full of loss. They matter and they know it. So if you find your own passion you will find your way to heal. It does not cure the disease but it does give you a reason to LIVE! I never ever thought I would be the mother of six, ages 29 to 5, that I would travel the world, have one of the poorest people smile at the child I carried offering us a gift, patting my husband on the back in appreciation of adopting one of their children to be ours.
        Many blessings, but on a day you are ready. I feel your pain.
        Marie

        Marie Ausdenmoore RN, BSN, LMT, HTCP - November 5, 2013 at 11:29 am Reply
  13. I believe my son had scoliosis. My husband does. He and his sister have also been dx with eds. The eds is actually most limiting in their chronic constipation and stomach problems. Has your son also suffered from the gastro problems?

    Janet riddett - August 13, 2013 at 11:25 pm Reply
  14. I have several problems with this article. a. it says pain and where it may be, but nothing about differing levels of pain – within the same person, and the many variations it has in different EDS people. So it doesn’t even answer it’s title. I was hoping for a description of how we FEEL, and I got how we ARE – from a clinical viewpoint. b. it’s aimed at parents with young children, yet seems to be somehow directed at adults too – which is problematic for adults because c. the list of ‘ways to relieve pain’ is completely useless to an adult who did not receive the needed care as a child and as a consequence is now in far more pain and is far more disabled than a child surrounded by a knowledgeable best treatment model in the US. Some of us are in countries far away where they are telling their specialists how to treat them they know so little. Where you say you have EDS and they pull at your skin and if it isn’t like a Shar Pei you must be mistaken. Thus the suggested treatment is almost insulting to my reality, and makes me feel guilty for requiring far more medication than suggested despite now practicing most of the suggestions, which I had to find out for myself. It is hard enough for seriously affected adults to access medication that works without info like this for ignorant dr’s to read and think you need to go swimming more often and take Tylenol and Prozac. Thank goodness my GP is knowledgeable and realistic.

    MissR - August 14, 2013 at 12:03 am Reply
    1. I didn’t know what EDS was until my doctor told me he thought I had it. A hand specialist had made a note in my records that he thought I had hypermobility syndrome, when I tried to research that it got me nowhere. However those 2 words started my path to Dr. Tinkle and a diagnoses for me and my son. Suddenly I wasn’t a crybaby whining about pain when all ‘tests’ were normal. For me it was too late to avoid activities that were bad for me, but my son has benefited from my pain. He was young enough to learn EDS ways of doing things, he learned how to modify his actions so they didn’t cause injuries. He has made his joints more stable by making the muscles around them stronger. He plays varsity football, wrestling and swimming and has no more injuries then the normal kids on his team. The most important thing with EDS is preventing injuries, you have to relearn how to move. You may look and fell odd, but being able to walk around the grocery store and make it to the end of your list with everything in place and not hurting is a great feeling.

      Latishia - August 16, 2013 at 1:37 pm Reply
  15. What a relief it is to hear another doctor agree that fibro is a SYPTOM of EDS, not a seperate issue! I believe our nerves react more quickly,”turning up the volume” of pain. My doctor prescribes Volairen Gel, Ropineral and Clonazapam. I take half a .5mg tablet of Clonazapam for the muscle chenching, and half a tablet of Ropineral for the tingling that comes with my fibro. The gel helps with all 3 syptoms.

    Lexi - August 14, 2013 at 12:41 am Reply
  16. Adorei a matéria, meu filho hoje com 16 anos é portador da tipo II hoje chamada de clássica, mas trata-se de mutação nova, pois ocorreram fatos e doenças secundárias a síndrome, sua maior caracteristica é a pele( muito elástica em todo seu corpo,mais aveludada e sensível) e hipermobilidade é mais leve mais tem também,dores desde que era apenas um bebe e eu passava por louca quando o leva-va ao PS, passei a não leva-lo mais por causa das dores quando elas intensificavam eu o enfiava em um banho quente ate acalma-lo( essas dores eram acompanhadas geralmente de estalidos altos em suas juntas dava para ouvir de longe dele o barulho que suas juntas faziam na hora das dores intensas), depois de parar de amamenta-lo começaram quadros infecciosos de repetição, a EDS só foi descoberta aos 4 anos na maior capital do meu país SP após esgotar todas possibilidades e tentativas de descobrir o que acontecia com ele onde resido no interior de SP, quando diagnósticado encaminhado a alguns especialistas principalmente o cardio o qual diagnosticou o PVM o qual ficou estabilizado por anos até que evoluiu para PVM com insuficiencia e repercussão, PVT com insuficiencia mais sem repercussão, mais extras sistoles ventricular(a evolução do quadro cardiaco começou aos 11 anos, necessitando de medicação), as infecções continuaram vindo o diagnóstico IDP Imunodeficiência Primária com o nome de hipogamaglobulinemia aos 5 anos (usuário de imuglobulina humana e antibióticoterapia sempre que necessário e as vezes por longos periodos), alterações consideradas leves mais que tem que ser controladas também no rim esquerdo, epilepsia e enxaqueca (controlada com remédios), as dores foram controladas em muito com um ano de acunpultura semanal com aplicação em torno de 45 agulhas por vez(diagnóstico reumato como sindrome de amplificação dolorosa tudo doia), fisioterapia continua a muitos anos mais uma fisioterapia aplicada da maneira correta ao que ele tem faz ate os dias de hoje e é muito importante para ele, hoje tem dores sim tem principalmente joelhos costas problemas posturais (leve escoliose e uma hipercifose), mais só toma remédios em caso de dores muito fortes(naproxeno, analgésico mais comum nunca funcionou e muitas vezes ate esses mais fortes não aliviam os sintomas em caso de dores muito fortes), ele não tem a mesma energia das pessoas de sua idade, diagnósticado também na parte gastrica com refluxo gastro esofágico com esofagite, e a dois anos apareceu a psoriase também a qual ta de dificil controle pela sua pele ser mais fragil, e principalmente devido a IDP pois o remedio que controlaria a psoriase abaixaria mais sua imunidade a qual ele não tem e toma reposisão, hoje trata com 15 tipos de especilaistas e terapeutas faz uso continuo de varias medicações… gostaria muito de saber se vocês conhecem algum caso parecido com o que ocorreu ao meu filho o que coloquei aqui é um resumo do que passamos ao longo desses anos… obrigado Michele

    Michele dos Santos - August 14, 2013 at 9:28 am Reply
  17. My fourteen year old daughter has been diagnosed with Benign Hypermobility Syndrome. In researching it, I keep ending up finding Ehlers Danlos. Is this the same thing? We have an appointment with her Rheumatolgist in October and I will ask more about it. I have not been able to find any centers or doctors that specialize in it here in Houston. I did sign up for the video event on the 20th, but was wondering if anyone knows of pediatric doctors in Houston that specialize in EDS, have found one that does not see patients under 17. I am wondering if we need to make a trip to Cincinnati so I do not have to take her to another doctor that discounts her pain like the orthopedist we saw today. Frustrated and looking for answers…

    Stephanie - August 16, 2013 at 4:35 pm Reply
  18. I have EDS type 3 and I am NOT helped by PT of any kind! PT of any kind just makes me way worse and the pain and fatigue afterwards ruins several days. I’m also NOT helped by psychologists at all.

    Resting, pacing, bracing and heavy duty painkillers are the only things that helps me at all! And by heavy duty painkillers, I mean morphine and the likes.

    I’d never in my life take anti-depressants or anti-seizure medicines for my pain as those medicines have so many really nasty side effects and can be worse to come off than any opiate!

    Jen - August 16, 2013 at 7:34 pm Reply
  19. Hello Doctor my 12 yr old daughter has been suffering from this cruel deceptive syndrome EDS hypermobility type 3 for over 2 yrs & the worst being this year…she was diagnosed in dec 2012 & has missed a huge amount of school this year and her competitive days of sport are over,her pain is incredible and ranges from ligament or tendon pain starting from the neck to knees ,ankles where some days crutches are needed to rib pain which compromises her breathing to feeling nausea ,with orthostatic intolerence and this could all be symptoms in one day at times…this is gut wrenching to watch …what pain medication would help as we are slowly taking her off florineff (salt steroid) as we feel this has not helped to much with her OI …over counter meds do not work at all ..we would love to stop the terrible cycle of booming and busting but so difficult with a young girl.there is so much more I would like to ask and would love to have the opportunity to talk with you …regards Valerie …syd aus

    Valerie Macri - August 29, 2013 at 7:41 pm Reply
  20. My husband, myself and 3 of the 4 kids in our household have been diagnosed with eds with hypermobility (we suspect the 4th has it as well). We are a blended family (2 were mine, 2 were his, but we all live together full time now).

    We all have a LOT of troubles that have been explained and it is a relief to me to know what has caused so many of my issues (including uterine and bladder prolapse) over the years.

    Right now I’m having trouble getting the school to work with us given the general information Columbus children’s gave us when we got the diagnosis. We are going to Cincinnati Childrens to see Dr. Neilson in October and have a dr’s note from a PCP asking that they be excused from ‘joint loading’ activities, but they want something from Children’s that says, line by line from their curriculum, what they can and can’t do. I’m afraid they are going to get hurt in the meantime. They get sprains, strains and dislocations as well as generalized widespread pain and headaches. I’ve given them the letters from Columbus children’s with their diagnosis (which doesn’t give their specific issues listed, only a diagnosis and the common issues associated with eds/h), the EDS educators guide from the associations website and the original doctors note. Is there anything else I can do to prevent them from forcing the kids to participate in activities that will hurt them?

    Donna - September 4, 2013 at 2:41 pm Reply
  21. Hey! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Anyways, I’m definitely delighted I found it and I’ll be book-marking and checking back often!

    Christoper - September 23, 2013 at 9:28 am Reply
  22. Hello, all the time i used to check web site posts here early in the dawn, as i enjoy to gain knowledge of more and more.

    Colette - September 30, 2013 at 11:30 pm Reply
  23. Hey all, I got hyper mobile eds, pretty much every joint you can think of comes out of place (collar bone, hips, femar, ribs, you name it) I’m 25 now and the pain aspect of it has grown over the years. Listen to your kids! My parents never believed me as a kid and I honestly grew up thinking it was normal. There is no awareness either, most people think your making some random thing up, hard when
    your parents, your work, your wife all think your exaggerating the pain and constant dislocations.

    Dane - October 3, 2013 at 5:04 am Reply
  24. My son, 17, was diagnosed with EDS Type IV. At this moment, he stands about 6’5 and weighs in at 125 lbs. He is in pain constantly in his chest and in his back. He also suffers from Kyphosis and Scoliosis. Physical Therapy was not a total loss but, not good for him either. We live in East Texas and there is not much information out here. I would like to be able to help him manage his pain…any ideas?

    Pam - October 4, 2013 at 12:45 pm Reply
  25. Hi my daughter is 18, we live in Mexico, and has just been “accidentally” diagnose with Manfar or Ehlers Danlos, by a Cardiologists who just by seeing her told us to check it. Unfortunately we don´t have any hospital or laboratory who performs the necessary studies. Do you have this so we know if she actually has this? thank you

    claudia wallace - November 1, 2013 at 4:08 pm Reply
  26. Dr. Goldschneider,
    My daughter is 21 and has EDS type 3. she has many many complications – has had a terrible year. But right now she is in terrible pain in her hips. She is on powerful medications that really just touch it – take the edge off but the pain is relentless. She is a very positive person but is losing hope and no one understands EDS pain or has any answers for her. We are in despair.
    We are in Denver but we’re desperate. I don’t know where you are, but we’d travel just to see someone who gets it. Megan has no life right now and needs this pain relieved somehow.

    Debby - November 13, 2013 at 3:07 am Reply
    1. Hi Debby,

      We are located in Cincinnati, Ohio. If your daughter is interested in learning more or contacting us directly, our clinic’s number is 513-636-7768. And here is a link to our web page, with more information: http://www.cincinnatichildrens.org/service/p/pain/default/

      Rachel Camper - November 13, 2013 at 1:24 pm Reply
  27. My daughter is 15 and was diagnosed with EDS hypermobility type 3 years ago. It took us 3 years to finally get a diagnosis. Doctors even told me to stop looking. They said it was all in her head. She started having chronic pain in one location of her head at 9 years old and then came back spasms and joint pain. It has been quit a journey. She aches all over, has joints dislocating, nausea, headaches, vision problems, low blood pressure occasionally. It is very hard to watch my sweet girl suffer everyday. She misses a lot of school. She now goes to school half a day which does seem to give her a little bit of a social life. She does say that is hard too… going to school and hearing about all the fun things the kids do with there friends. She was a dancer up until last year. She wanted to be on the high school dance team but it would just be too much for her. She is very depressed. She feels so alone. She says I don’t understand. I love her so much and want to help her get through this. It is becoming very hard. She is so tired of all the pain. Her doctor has her on Cymbalta which she says helps her but she still continues to suffer. I try to get her to exercise and she will not do it. She has seen counselors in past and says she doesn’t want to talk to them about it. I don’t know what to do next. I am very worried about her. she has suffered for so long. Any advice would be greatly appreciated. Thanks, Becky

    Becky - November 14, 2013 at 11:03 pm Reply
  28. I think the experience of pain with EDS is different from normal arthritis or muscle spasm pain.

    I have found that Feldenkrais helps me with the spasms (I am over 60), but made my son too loose.

    I think it has to be essential to find a PT who understands EDS or they can do real damage. I am fortunate to have found a practice in San Francisco that specializes in joint hypermobility. I have had years of half-measure or worthless or damaging PT. I am actually making progress, rather than slowing the falling apart.

    Pilates in a class left me back to PT for a subluxed shoulder despite being careful. A trained PT who knows hypermobility using pilates to help stabilize joints is a different matter entirely.

    I have hit the point where I am getting all sorts of testing (ultrasound, mainly) for phantom abdominal pain. All negative, for which I am grateful, but I would like to be off the medical merry-go-round. I think it is muscle pain, but PCP has concerns.

    Djunia - November 19, 2013 at 1:32 am Reply
  29. I am 31 and was just diagnosed in October with Hypermobility Syndrome, and in November with Ehlers Danlos Hypermobility. I scared the Rheumatologist with how “bendy” I am. I have been told repeatedly that they (the doctors) had never seen it before. I have been complaining of all over joint pain, hypermobility, and subluxations since before I was 18. My hips have gotten so loose, I am afraid to “be with” my husband, because then I will have to put them back in. Every time I try to talk to a doctor about all of this, I am told that it is all in my head, or that these symptoms just don’t make sense together. I am currently seeing a PT that had never seen a case of EDS. I kind of feel like everything that he is having me do, is just a shot in the dark. He said that he was only able to find 1 article for using PT to treat EDS.

    I have 2 sons, 9 and 6. They are going to be evaluated on Jan. 2nd to see if they have it too. I know for sure that I have passed this on to the 9 yr old. The 6 yr old may have escaped it. I live in a smallish town, and just want the best medical treatment for myself and them, but every time that I talk to a doctor about it, they just give me a weird look, and reach for Google. Any ideas on how to inform them on the condition? Thanks in advance, and sorry for the longish post

    Sarah - December 9, 2013 at 12:09 am Reply
  30. Where are the Ehlers-Danlos specialist so I can have my daughter and son correctly diagnosed? My son ( age 17) has been diagnosed with this illness (through a motility specialist and a hand surgeon). My daughter (age 15) 2.5 years younger is now showing the same symptoms at the same age my son started showing symptoms. We live in Miami Florida. Are there doctors you know of who are in South Florida. What & where is the best program to correctly diagnose and treat take care of my children. They have frequent dislocations, an operation to fix shoulder dislocation that did not work, years of PT, chronic pain in both hands – that require surgery, gastric problems and pain.

    susan admire - December 18, 2013 at 9:45 am Reply
  31. Hi, I have the hypermobile form of EDS and have had shoulder pain for 5 years. Recently had an MRI done and it was discovered that I have an osteochondral lesion in my shoulder. I have been told that only 7 cases have ever been reported of this. My orthopedic doctors are not super familiar with EDS and are suggesting a shoulder surgery to tighten the joint and overlap the collagen. I do feel that something needs to happen because the pain has not gotten better with more than 4 years of PT, a cortisone injection, and prednisone steroids. Any thoughts for treatment/ surgical procedures? This is where medicine gets tricky in that doctors from separate fields often do not communicate and I’m nervous to go ahead with the surgery for I fear that it may not hold, or it could be the wrong type of surgery or treatment option for someone with EDS. The pain is on both sides of the body with the same type of lesion. Any help is appreciated. Thank you!

    Emily - January 11, 2014 at 10:03 pm Reply
  32. I see no one has left a comment here for quite awhile? Is this still an active site?

    There seems to be a these mere with 15 year olds? Perhaps there’s a growth plate ‘ something ‘ associated with that age, or previous to it which sets in motion a ton of these complications. My son is now 15- we are smack in the middle of the ‘He’s faking/It’s all in YOUR head, Mom/ Oh wait, there’s something there!/OH yes, he has EDS/BUT nothing can be done for it, the symptoms are still in his head (or unrelated) entirely stage. SUCH a long, long time getting anyone to listen. We were JUST scolded for going to the ER this past week when he woke up with what I can only call a ‘ crooked face’- one side was literally lower than the other, plus his usual incredibly awful pain under his ribs/upper abdomen had kept him awake all night. It’s been a fun few months. ‘They’ finally diagnosed a connective tissue disorder, the rheum. says EDS Hypermobility- other docs say WHY does the rheum, say EDS, what proof is there? ( Sounds like ‘ HOW DARE SHE? ‘ ). We have no answer for this, just are kind of floating around hoping someone will take care of my son SOON.

    Incidently- as far as pain in concerned, PT hasn’t been useful so far, although they’ve prescribed PT on the basis of a chest injury, not EDS. We haven’t even asked for pain meds since the first thing most docs do is make sure we know they feel anyone that age talking about pain will be thoroughly vetted for addict status. (I’ve begun offering the contact info of his school guidance office, so medical people may ascertain he is on the football team, honor roll and whatever else organisation which would require clean living!)

    One benefit of our useless visit to the ER was an appointment with a pediatric rheumatologist who does believe in Ehlers Danlos, thank God. I think we were given this because I seriously began crying quietly, when the ER doc started witching at us for ‘ using ‘ the ER for non-emergencies. I told him I had no way of knowing it was not one- someone please tell me the pains and migraines and peeing blood and faintness and vomiting and head to toe hives and crooked face are not eventually fatal, ot things to worry about and I’ll stay home.Maybe- if someone also tells me what to do about any of these, please and stops sending us home.

    We’ve paid 100 bucks ER co-pay 4 times now, for the privelege of being sent home. Heck- I could put up a stand, like a lemonade stand, on the street- charge 100 bucks. It could say on a big sign ” Get sent home, 100 bucks, right here’, then when a customer came, I’d say ‘ Give me 100 dollars’. When they would ( because of course customers would be lining up around the corner ), I’d say ” Ok, now go home’. Same thing. The only difference is I’m mostly begging someone, anyone, to please HELP my son! He has the diagnosis ( I THINK ), sure has the symptoms and always has had them. For all the good that did us. We do have one appointment further in which to ‘ make our case’. It will depend on how much this particular doc ‘ believes in’ EDS, because it’s almost Santa, the Tooth Fairy, Easter Bunny and The Great Pumpkin out here, most do not.
    Sorry so long with this. We’re so, so worried- no one is listening. I just have this image of something terribly serious happening someday, and everyone being ALL surprised, oh gosh, why did no one say anything, or what a tragedy, no one listened to him? I’d rather not have my son be a sad story in the newspaper.

    Antje - February 10, 2014 at 11:08 am Reply
  33. Hi. I am 43 years old and have Classical type EDS with a vascular crossover. As of recent my drs are bouncing me back and forth because they don’t know what to do for me. I suffer extreme pain, dislocations or sublaxations, severe stomach pain, headaches, vision issues, and breathing troubles. I have children as young as two and I am tired of being pushed around and no one taking care of me. I would like to spend more time out of bed than in it. I am to see Dr Tinkle in Illinios whenever they have an opening but who knows when that will be??? Any help or suggestions please? I have all but given up and want to give in.
    Thank you,
    Robin

    ROBIN RICHCREEK - February 13, 2014 at 4:32 pm Reply
    1. Hi Robin,

      You might want to try emailing the Connective Tissues clinic to see if they could help you: skeletaldysplasiacenter@cchmc.org

      Rachel Camper - February 17, 2014 at 3:24 pm Reply
  34. My daughter is 3 years old and has been complaining about back pain for a year now. She has EDS hypermobility, low tone, flat feet, pronated ankles and a weaker side so her right side is elevated. Her PT just gave me inserts to try and see if it helps and we are working on improving her core strength. The pain is the worst when sitting in her car seat or when it wakes her at night. She also has leg pain but complains more about her back. Her X-rays and bone scan came back all clear. Could this just be muscle soreness or joint pain from over extending herself daily or do you think she needs additional testing for something more serious? Is this daily pain just something she is going to have to live with? :( Seeing someone so young hurting all the time is not easy. Any suggestions?

    Angie - March 14, 2014 at 12:48 pm Reply
  35. Hi my daughter who is now 10 was diagnosed with EDS hyper mobile with Vascular when she was 8 and although she is epileptic as well her pain is getting a lot worse all over and her rheumatologist said she has spondolythesis, we did 8 months of Pt and the said she probably won’t get any stronger, her hips dislocate daily as well as her elbows, and jaw we are at a loss with know one in our area to treat her she recently tore tendons and was in a cam boot for 4 weeks but it still hurts, don’t know where to get help for her, she is in pain 90% of everyday and as a mom I feel helpless, we are about to try oils to help but would like to see someone who knows about EDS that will help us

    Jess Hall - March 14, 2014 at 8:34 pm Reply
  36. I’m 18 and I was told 3 years ago I “probably” have EDS but the test is expensive and not reliable(atleast that is what I was told.)

    my mother also “probably” has it. She has fibromyalgia
    heart valve prolapse
    chronic fatigue
    vericose veins
    ect.

    I personally have acute scoliosis
    kyphosis
    flat feet
    “double jointed”
    easily bruise and scar
    spider and visable veins
    tmj
    headaches
    not sure if these are related or not:
    numb feeling in hands or fingers every once in awhile for no known reason.(not checked)
    cysts and lumps all over my chest and spreading over my rib cage. (unchecked)
    pain in my chest ( also unchecked )
    awful sharp stabbing pain in my low abdomen at random times but it is enough to make me double over. ( not period cramps.) ( not checked)

    Neck has recently shifted weirdly, I mean there areonly 2 vertebrae in my neck not sticking out. (about 3 months ago something in my shoulders popped and I could not move my neck or shoulders for 2 days without pain)

    when I was 8 and again at 11 I had to use crutches because I could not straighten my leg at the knee for 2 months or so ( nothing would suggest injury as it happened both time after simply walking) the doctors said I was faking- even though simply stretching it was excruciating. Usually had a twisted ankle atleast once a year(walking-my foot would roll and I would land on my ankle, blacken and be swollen for weeks) My feet chronically hurt till I reached teenage years, when my back began hurting due to scoliosis. Hip pops in and out of the socket easily. My joints are incredably flexible(except in my low back where i am fused by rods)

    After being told I almost certainly have type 3 EDS( U of M) I basically forgot it and went on with life cause I was told that there was no treatment for it. I was also told to not have children.

    A friend of mine (a nurse) said that a friend of hers had it and something broke in her neck because of it (artery I believe?) and she died. Well thanks for telling me that! Not. I’m so confused by want it is and when I talked to doctors in the past they would ask me was EDS is.. And I’m not completely sure myself. “youre thedoctor, you tell me!” I’m a teenager and here I’m getting mixed signals (” don’t have kids.” “Oh you should be okay. “”People with EDS usually die young.” “You can live a normal life”) so so so confused. Any advice?

    Amae - March 30, 2014 at 3:58 pm Reply
    1. Hi Amae,

      Thanks for contacting us. We often see patients for “second opinions” because of the problem you described in receiving conflicting information. EDS is often misunderstood in the medical community, so it’s important to find a physician that has experience treating the disorder. One of the problems of the internet, medical journals, and discussing with friends is that most information is driven by a human need to “warn others.” As such, everything you hear or read tends to be about bad things that can happen. You rarely hear about the persons with EDS who overcame their struggles and are doing well—but there a lot more of them than you might think. It’s difficult for me to comment more directly on your diagnosis or offer advice without an in-person evaluation. If you would like, we could try to find a knowledgeable colleague close to your home. Or we would be happy to evaluate you here in Cincinnati as well. Best, Dr. Neilson.

      Derek Neilson, MD - April 7, 2014 at 9:21 am Reply
  37. Hello, my name Nicky, and I am 15 years old, almost 16. My 11 year old brother and I both have EDS type 3 hypermobility. my mom has it aswell. We were in a car accident with my mom in 2005 when we lived in Hawaii. We were all diagnosed with myofacial pain disorder. we moved to the Virginia DC area about three years ago, and were diagnosed with EDS when the pain kept getting worse. My pain has not gone away for even a second in 9 years. I have been to physical therapy for my entire life. i was put on a few medications, but the side effects were so bad that i had to get off of them. we are currently going to a group of doctors in DC, but we are havign trouble. they dont believe that i am hurt. i was a competitive cheerleader when i was 7, and by the time i was 8, i couldnt do cheer or gymnastics or PE, or anything. i am an overall happy, active, and social person. the doctors that i see cant seem to see past that. I am constantly in pain and so is my little brother. i am currently being treated for trigger points, but my little brother is to young to get the injections of the dry needling. every doctor that ive been to has told me that this is not common is pediatrics, so they cant help us. they arent willing to treat kids. i don’t live any where close to Cincinnati, but if you could give me references of articles, or pain management options that the doctors might be able to try, that would be amazing. We also cant find a pain medication that is “pediatrics friendly”.i am not faking the pain, and i know that i hurt. i hurt every day and i just want some relief. it would mean the world. thank you Dr. Goldschnider.

    Nicky - March 30, 2014 at 6:34 pm Reply
  38. I’ll right away snatch your rss feed as I can not
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    Marian Hossa Jersey - April 26, 2014 at 4:00 pm Reply
    1. Hi Marian,

      If you type your email address under “Never miss a post” and then hit the > button you will be officially subscribed to our blog updates. Many thanks for your interest!

      - Rachel, social media team

      Rachel Camper - April 29, 2014 at 8:09 am Reply
  39. Nice to see so many familiar comments. I have an 18 year old daughter that has been dealing with so many issues since she was 14 years old. Her illness started with unexplained panic and rapid heart rate with chest pain. She was then started on several medications to hopefully help this. They did not. Then a couple months before she turned 15 she stated passing out. They did the whole cardiac work up and in the midst of this she happened to hit her head hard enought to have an MRI. They found Chiari 1 Mslformation with herniation to 5mm. We saw a specialist for this. “not the problem” She has now been diagnosed with Celiac, Scoliosis, Gastric Dysmotility, POTS, Depression, Anxiety. She has Chronic pain and has been to so many Doctors with most of them dismissing her. The last thing that happened was that she had her cycle for 3 months straight with heavy bleeding. She dropped 3 HGB points. With this she was placed on several different types of BC to try to cotrol the bleeding to include insertion of the Mirena. This fell out 6 weeks later. We have been through so much for the past 4 years. She is so worn out. She was supposed to be graduating but do to this illness she has had to discontinue High School for now. All of this has been hard medically but also her friendships have been lost. She is isolating herself due to pain, her mobility is decreasing. She dislocates her knees just standing sometimes and her hips just laying in bed. She is currently only on diclofen ER 75mg twice daily, for pain due to “fear of addiction”. She has been seeing a counselor since all this started but has at times been so hopeless that she has been suicidal. We are currently doing some aquatherapy but after 20-25 minutes she needs 2 days to just sleep. We need a diagnosis and I believe that Ehlers Danlos is it. Please help.
    We live in an area that NO ONE knows what this is or how to treat it. I cannot continually watch my daughter slip away.
    I have read also that with Chiari and EDS that a surgery is sometimes helpful to relieve some of this Chronic Pain. Please Respond… Feeling Helpless in North Dakota.

    Sheri - April 28, 2014 at 12:17 am Reply
  40. My girlfriend is 16 years old and was diagnosed with EDS type 3 when she was about 14 years of age. At first the pain was only mild and it slowly grew into a daily chronic pain. She is at average a 7 (on a medical pain scale) about everyday. The dislocations, joint pain and actual bone pain all play a huge part on her life. Her medications are the only thing that can make the pain “bearable” and yet the affects only seem to work in a short period of time. A form of successful treatment is needed and reading this article has given me hope towards creating a better future for her and I thank you all for the information you provided.

    Kyle Hurley - May 1, 2014 at 9:42 pm Reply
  41. An orthopedic doctor has recommended genetic testing for EDS for my son. Could you please recommend a genetic doctor at Cincinnati Childrens who may specialize in this area?

    Kathy Bunke - June 11, 2014 at 5:43 am Reply
    1. Our Connective Tissue Clinic has both geneticists and rheumatologists who evaluate children for EDS. Their contact information is skeletaldysplasiacenter@cchmc.org or 513-636-4760. You can also find more information on their website: http://www.cincinnatichildrens.org/service/c/connective-tissue/default/

      - Rachel, social media team

      Rachel Camper - June 11, 2014 at 11:50 am Reply
  42. I know it is still being researched, but there appears to be good evidence thus far (and abundant case studies)that prolotherapy is a very effective method for stabilizing joints and decreasing pain, and is safe and inexpensive relative to most other treatments.

    I bring this up because I am 37 so have been living with EDS (very severe dislocations, and almost died at one point because I couldn’t stop vomiting from the pain) for a very long time. Prolotherapy saved my life, and I hear countless stories from other people who say the same thing, but despite it having better evidence (Level I and II for several EDS associated problems, such as tennis elbow and knee osteoarthritis and hypermobility, and certain types of back pain), the FDA still withholds support since no drug company can patent it and thus haven’t flooded them with biased studies. Similarly, I will see prolotherapy recommended in a number of places for EDS, but some of the really great medical centers will recommend awful things such as corticosteroids, which are not only ineffective, but deteriorate joints in the long run, but will fail to even mention prolotherapy as a possible therapy.

    Of course I am biased. As I said, I almost died before having it, and I was completely and presumably permanently disabled and bedridden. I was in the doctor or ER 5-7 days per week, and my joints would dislocate again just as fast as they could pop them back into place. Now I can walk, stand, sit, and am even exercising again. So of course I believe in this therapy.

    I just don’t understand how places that people come to for information and respect wouldn’t be willing to even list it as an “experimental” procedure when it’s helped so many people with EDS, and when the research fully supports conditions associated with EDS — especially on a site that will support acupuncture, medications that haven’t been shown to be effective for EDS… Don’t get me wrong, I love acupuncture, and I’ve found health psychology helpful, and I’ve been forced to take medications that I don’t want to take (some of the psychotropics like those you mentioned destroyed my body and nearly ruined my pancreas, and then because my metabolism was ruined and I’d put on weight, I experienced even more pain). I don’t think it’s too much to ask for a mention of something that actually helps treat the underlying cause of the pain. I say this as someone who only wishes that someone had given me the information years before I became bedridden and before I had a permanent disability.

    Sheilah Kring - June 14, 2014 at 5:10 pm Reply
  43. My son was diagnosed at CHMC but we live in NC. Very difficult to find providers in this area that understand EDS let alone the pain. No PT understands the proper way to do therapy with an EDS patient. Do have one therapist willing to learn and working with department at CHMC PT to help design a program.

    Question: My son complained recently of a sharp pain in his chest which resolved with a popping feeling/sound the first time. Initially he was very concerned it was his heart but at age 16 after having so many echos and such, we were not thinking that was the issue but the pain reoccurred a day later and I put my hand on his chest and felt a rib elevated compared to the other side. As I applied a slight amount of pressure, I felt a POP. This problem continues and we have found that a rib binder is helping him to move and be more comfortable but he states that it is very painful and I know he knows real pain. This is one week of this problem happening repeatedly. We recently went to a dysautonomia clinic started at Duke and they want him to do an exercise program but it hurts in his chest if he does their program. They said it might be “slipped rib syndrome”?

    We will be visiting the pain clinic in early July but dont know if we should see someone else for the ribs. Please let me know. We will also be seeing Rheumatology to check in as Dr. Lovell made the original dx and is my problem solver. Any other suggestions?

    Kim Lawrence - June 18, 2014 at 9:48 am Reply
  44. I can attest to the severe widespread non fibro pain along with EDS. As a child we were always at the doctor for dislocations constant bruising. Child protective services even thought I was abused. Thankfully a family friend diagnosed and treated my EDS. Now as an adult the only pain relief I find is with long and short acting narcotic pain medication, yoga and walking. I have RA, UC and SLE along with the the EDS. Please get tested for RA and other inflammatory diseases. I can only dislocate hips and shoulders now because of 30 years of untreated arthritis. Please try Yoga. If you do not feel comfortable in group settings rent the DVDs from the library such as Yoga for Arthritis or Yoga Zone for beginners. Both of those series are safe for EDS sufferers. EDS is genetic make sure to stay on top of it with your kids (mine have it) and be careful during childbirth (severe hip dislocations interrupt pregnancy and delivery) thank you Cincinnati children’s for this article and informing both the public and patients! Awareness is everything

    Angel - July 6, 2014 at 3:39 pm Reply
  45. WOW just what I was swarching for. Came here by searching for Ehlers-Danlos Syndrome

    narcotic pain Medication - July 20, 2014 at 3:30 pm Reply
  46. Thank you for all the information. I have a six and 24 year old grand daughters misdiagnosed for yearss until last year at Alabama Orthropedic Group in Mobile. KToday I was trying to become more informed. Unfortunately I am unable to pull up sight at the moment, but a very knowledgeable young lady did an art expo on Elthers Danos. Please search for it. All doctors and people with this awful . JUST FOUND IT lifewitheds.com syndrome need to read and see her art describing EDS.

    patsy - July 27, 2014 at 10:13 am Reply
  47. Hi I am a 29 female. Married and 3 daughters. I live in south africa, eastern cape, port elizabeth. Here in south africa there is less than 1% of medical practitioners who know about eds and heard of eds.My father, brother and I have been told that our symptoms are the same as eds. I was born with very flexible joints and low muscle tone. I only started walking at the age of 5 and rolled around to get where I wanted to be. I started teething at age 3 and have skin problems since birth. I attended a school for physically disabled pupils (1990-2000) called the “Hope convilesant home” in JHB. We then moved to the eastern cape and sadly had to stop PT and OT because of lack of finances and availability. I have read a lot about eds and my situation sounds a lot like type 3. My eldest daughter (aged 7) is living a healthy and normal life with a huge love for netball, my middle daughter (aged 5) isn’t that lucky as she is very limited when it comes to sport and normal day to day activities but that doesn’t stop her from trying, my youngest (aged 1) is the worst off of all 3. She can’t walk yet and struggles to crawl, her teething is very slow and she has a vocabulary of 4 to 6 words, the rest is still baby talk. I’m taking her to the genetics department at 1 of our local hospitals to be screened. But I haven’t got much faith in our doctors as I have had very bad experiences in the past when it comes to eds. I am so tired, full of pain everyday and scared for my kids sake. I would love to know what is wrong with us. I can’t keep a job because of the pain. At this moment all doctors make me a liar and it truely sucks. Who better knows me and my body that me, myself and I??? Please help and guide me to what next is that I should do in my condition whatever I have truely tried. I just would love to get help for me and my family. Thank yo. Marelise

    marelise mentoor - August 10, 2014 at 6:21 pm Reply

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