8
Aug, 13
173
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. Is anyone aware of a doctor, or clinic, or PT or OT who treats EDS in New York City or Long Island? My teenage daughter has EDS and it causes pain in most parts of her body, including her hands. She has been unable to write for 18 months, so that area is a priority for her. I appreciate it.

    Mike - September 26, 2014 at 1:43 pm Reply
  2. My 6 year old son was just diagnosed with type 3 EDS. I am looking for physicians that work with pediatric EDS patients in the San Diego area. Thanks for your help.

    Emmanuel Hunter - October 2, 2014 at 9:41 pm Reply
  3. So glad to see someone talking about a pain. I went to med school at UAB and trained at Mayo Clinic. Had to give up my practice finally due to EDS with multiple complications including spinal disease, migraines with micro infarcts, GI dysmotility, autonomic instability, etc. autoimmune arthritis, and narcolepsy among other problems. I made it 40 years without taking daily pain meds. I have and continue all other modalities you list for pain control. but it gets to the point where not taking pain medication daily is impossible. I know you are referring to kids. If I had had any sympathy or assistance or recognition of disease from anyone when I was younger it would have made living with this so much easier so I applaud you. Currently, most states are experiencing hysteria regarding use of pain medication even in clearly appropriate situations. In west TN where I live, it has become impossible to get appropriate care. Parents who have a child with EDS in pain. please look into your child’s future and know that if you want them to be able to have any relief from severe constant pain. you need to get involved in the fight to keep pain medication available for those without cancer who legitimately need it, can prove they haven’t and won’t abuse it, and follow all the rules. The other meds: antidepressants. anti-epileptics, etc., have serious side effects for many and don’t relieve pain at all for many but because they are not considered habit-forming, they are all that is likely to be offered. People in severe pain don’t get high from opiates, they just have less pain. Please excuse bad typing and grammar as sending this message is a real stretch for me. Thanks all and best!

    Holly - October 14, 2014 at 6:10 pm Reply
    1. Thank you so much for writing this Holly!
      I am currently in medical school and trying to find someone who can make the diagnosis- doctors comment on me being very flexible, but still say chronic pain is idiopathic. Mother has MCD, many generations of connective tissue issues and joint disorders on both sides of family, brother who would have exceeded 9 on B scale, brother with CRPD, nephews with loose joints, etc. Surprised when we learned about EHD in school, and touching thumb to flexors being abnormal. Everything was fine growing up, multi-sport athlete, dancer, artist, but now chronic pain and fatigue make everything harder, some of my favorite things impossible; before pain meds it got to the point that I would lay in bed acutely aware of how much energy breathing took, Dilaudid makes it possible for me to get out of bed, things are still hard, but at least possible now. Felt like the movie Awakenings getting pain meds, I get 2 hrs of moderate relief where I get to feel almost like myself again. Pain changes everything.
      Not all doctors will be good ones, Rheum, Pain specialists, PT, I’ve found ones that were terrible. If anyone reading this is in pain, don’t give up until you find a doctor who listens to you.
      Holly, Everything you said was important for me to see, Thank You.

      KS - January 10, 2015 at 3:51 pm Reply
      1. I too am a Family Medicine physician, disabled with HT-EDS for three years. I can identify with both of you, Holly and KS. I had painful joints that led Peds to rule out Juvenile RA, then I had calcaneal apophasitis in elementary school that sidelined me from gym for months, but thought nothing of it after. Some problems with childhood chronic constipation, then diarrhea dominant IBS but never treated. Very active late into teens, with martial arts (could go beyond a split of 180 degrees to stretch to 225 degrees with ease), wrestled, did weightlifting competition, ran 10 miles a day… No complaints until college when gastritis/GERD started. Then intermittent IBS again. By med school I had migraines. Assumed all stress. Mid 20’s, I quit martial arts because of rt hip pain when kicking high, sometimes resolving with a click afterward. Didn’t know what subluxations were. Quit running due to chronic bursitis/tendonitis of both knees. Fatigue, along with abd and thigh striae developing without weight change during residency. Endo workup for adrenal, thyroid etc neg. Already seeing someone for the migraines. Then I found I was myopic. Last year of residency I felt my lt wrist pop, and afterwards it could easily be subluxed. Eventually had athroscopy which resolved the pain. After residency, I managed for 10 years, with worsening fatigue and chronic ankle, knee, back, shoulder, and pain of the extensors of the arms and lt thumb. Got hard to sit/stand enough to see pts, and by 2011 I worked through lunch and after hours to see them all…leaving most charts incomplete because pain prevented typing long or fast enough. I logged in from home and did my best off/on to finish…often til 2-4am. I saw Rheum, assuming autoimmune but everything she checked was neg. NCV/EMG normal. 2011 I developed temperature dysregulation with heavy sweats. Then tachycardia with palpitations. Never a cavity until one after age 30, just fissures or pits that they always sealed, but then teeth started chipping and cracking. One normal looking tooth broke eating a doughnut! Since not even Rheum considered EDS-HT, I had no idea it was enamel hypoplasia. Humiliating. I had a nice smile, and now I don’t smile. Afraid people will think I didn’t take care of my teeth…quite opposite really. 2012 I took two weeks off for charts/papers, and returned at 3/4 schedule. Still couldn’t keep up. I was depressed, plus anxious over finances, my job, my health etc. In Feb I was sleep deprived going to work, and had a single car accident. My partners rightly insisted I go on leave, and though EDS was the problem, I had no dx except for psych issues for my ins claim. Finally in Dec 2013 I made an appt with Genetics, who immediately made the dx. All the migraines, myopia, fatigue, GI problems, skin issues, teeth, dysautonomia/cards and joint/muscle problems were all parts of one dx, and the mood issues and insomnia were secondary! I was amazed, and relieved that I had a dx. I’m a physician, and had seen many specialists, and I was 39 before someone thought HT-EDS. Because my long term ins had a 2 yr mental illness benefit limit, it took 10 long, unpaid months to convince them that I have HT-EDS and that my mood dxs were only secondary, so no 2 year limit. Then to PROVE beyond the accepted dx and physician statements concluding disability, that I was disabled. Hard to PROVE pain. Flexible doesn’t equal pain. Finally after an occupation specific 6 hr Functional Capacity Test, they took a few months and agreed it indicated I was unable to perform my job. Now I’m looking at extraction of all teeth, with implants, since the enamel dysplasia affects them all. SSec has also approved disability, but I still must hold my breath every 6-12 months until age 67, as the ins regularly reviews my case to see if I still qualify. Like I’ll wonderously resolve! But it’s tough getting care. My PCP isn’t comfortable with EDS, so he only does rxs for migraines etc. Referred to a different Rheum, who agreed with the dx but said she had nothing to offer and follow with Genetics. So, I see Genetics as ins reviews come around. With the controlled rx changes, my providers won’t write for something as simple as PRN Tramadol. I’d have to see pain mgmt. I hurt daily despite maximal NSAIDs and Tylenol, but I’ll deal for now rather than go to an office used to distrusting pts, and drug test monthly for a PRN rx I may not even use daily! It may become necessary, but not worth it yet. In my practice, I considered Marfans several times and was right a couple, but never EDS because I pictured the classical form with the stretchy skin, and no pts reported repeat dislocations etc. Now I look back and wish I had been more knowledgeable… There were surely at least a couple of EDS pts there that came in with fatigue, pain and myriad symptoms. It’s been a humbling experience, and makes me feel for similar patients. But I’d better call that enough since I’ve already stopped and started countless times and my arms are telling me about it! Best wishes to all experiencing anything similar!

        Michael - April 15, 2015 at 9:57 pm Reply
        1. I have Ehler Danlos Syndrome,Hypermobility,Fibromyalgia, Dysautonomia,Aortic valve leak. arthritis, I have had 5 Cervical Fusions. This has been going on for about 10 years. the pain is terrible, I live in North West Alabama,and need help. I need a Doctor to help. Please recommend a Doctor that can help me!

          Thresa - July 27, 2015 at 12:36 am Reply
        2. I am a physical therapist with EDS. I was diagnosed with RA 3 yrs ago and put on a myriad of medications for RA. The side effects were horrible- I stopped taking them. I really think that all my symptoms come from my EDS. Funny is I was originally diagnosed by a PT at a continuing education course- not by a doctor. I live in rural NJ and finding a physician who is knowledgeable about this disorder is like finding a needle in a haystack.

          As I read your reply I was shouting “YES”- I too have difficulty completing all my notes- on computer- due to the difficulty typing. I am currently seeing a pain mgmt doc- more for the diagnosis of RA which I still have. It seems that they don’t want to treat the EDS.

          From another medical practitioner- thank you for your story.

          Sarah - July 27, 2015 at 12:58 pm Reply
      2. For all you older adults I would highly recommend you find a good physical therapist instead of all the pain meds. I am almost forty and have already had my hip put back into place due to EDS. Guys pain meds are on a temporary solution, you need to find a safer more long term solution. PT is that solution, but here is the thing make sure the person knows about EDS because he they don’t they can do more harm then good. My kids have EDS, and since the doing PT for all us it has helped a lot with the point. Yes there are days where you will still need an anti-inflammatory such as Motrin, but you won’t be hurting you body with unnecessary drugs that are eating away at your liver and stuff. So please not only parents of children with EDS but also adults look into PT. From one EDS suffer to another it really does work.

        Holly - May 9, 2015 at 10:19 am Reply
        1. I would never judge. Everyone is very different. I dislocated 5-10x’s a day, had my 1st surgery at 17 & a glenoid osteotomy (shoulder socket reconstruction) at 18 at Mass General. If not for pain meds & surgery, I’d have been useless.

          People with EDS are wonderful at flexible sports like gymnastics & dance, it almost seems like we need to discourage some of this to stop repetitive dislocations & joint damage. PT prolonged my surgery & stopped dislocations in 2 of the directions, but could not replace where I had worn away my socket.

          My Mom has had SEVERE RA for years & the new limits on pain meds infuriate me. They say she is dependent on them. She is if you count moving sitting, walking & toileting independently as a luxury. Ironic no one feels diabetics are dependent on daily insulin. People need to change the way of thinking. People in chronic pain need & deserve useful relief.

          sandra - June 7, 2015 at 10:40 pm Reply
          1. here here!

            Mitch - July 2, 2015 at 8:00 pm
          2. Here here again, and AMEN! Down with pain med paranoia!

            Donna Baardsen - July 16, 2015 at 11:28 am
          3. I agree with that also, but until doctors are willing to admit that EDS really does hurt and its a SERIOUS disorder that needs to be taken serious. And that its okay to perscirbe narcotics for chronic pain.

            Gina - July 25, 2015 at 12:57 am
      3. I am a 45 year old woman that has been dealing with EDS, type 2 since I was a teenager of 4 years. I have many of the sypmtoms that have been posted by others and I too have had to adjust my life style to just be able to stay in an up right position.
        My dotors keep canging every 18 months and I have to start all over each time by exlaning what EDS is whatit is doing to me. I took the anti-depressants and the muscule relaxers for a while and that helped very little. So I finally found a doctor that will listen to me and not rely on a book of blanketed facts.. She prescribed some narcotics that I was asked to sign a contract for. It took a few months to tweek and peek the dose, but I finally was able to function properly as a mother, nana, wife and secretary.
        Now, after several successful years of pain management, I got yet another new doctor. He met with me for a half hour appointment and he came up with a plan to get me off the pain meds and send me on another rollercoaster ride of test and tons of specialist. Not all of these doctors are well versed with EDS and they are stabbing in the dark and treating this like it’s something that will go away if I just tell a psycho doctor all my aches and pains and he can decide if it’s all in my head or not. My mother passed away 18 months ago with the diagnosis of EDS being the COD.
        It would be nice if I could just feel like my doctor and I are on the same page with my treatment plan and not feel like he is forcing me to redo all these specialist appointmets with the same out come as 5 years ago. There is NO cure for EDs, but just like EDS is at different levels for people so should the treatment. And they should not jump on every band wagon that comes around like the one that is currently going around.Regardless if the treatment works, get the patient off the pain meds. The real treatment is still in it’s infantile stages and doctors really don’t know much about it. What scares me is when doctors don’t listen to the patient and rely on some words and statistics in a book to make their educated guess.

        Gina - July 25, 2015 at 12:29 am Reply
    2. Thanks for contributing this, Holly. I can certainly empathize as enduring both the fell reality of pain endurance in America and especially in West Tennessee, where I also reside. The inability to find individual or even community support is harrowing and exacerbates the lived misery of the pain. I could share my particular story, but anyone reading this can already guess the outline. Know that you’ve a fan with little patience for platitudes and lots for people in pain.

      Jason - April 21, 2015 at 1:04 am Reply
    3. Yes, Holly, thanks for contributing. I totally agree with you regarding pain treatment. As a woman of 59 with vascular EDS (hypermobility,RA/OA SLE,etc. as well) I know all too well that the psychobabble/Hindu/mind over matter/seizure meds band aids being pushed on people with severe chronic pain cause more suffering and DO NOT work. Don’t allow anyone to tell you otherwise due to pain medication paranoia. For that is exactly what it is. Insist on proper pain treatment, and don’t allow your body to be subjected to mumbo-jumbo that merely prolongs and exacerbates suffering.

      Donna Baardsen - July 16, 2015 at 11:25 am Reply
  4. I have EDS type 3 I’m 14 and looking for answers right now I’m going through a series of test to find them, and be honest is there an answer? Will I actuality get help or am I just wasting my time?

    Haley Buchanan - October 28, 2014 at 12:59 pm Reply
    1. Fortunately, at 14 you have a diagnoses. I’m 57, and recently I found a rheumatologist who confirmed I have EDS-hypermobility. I knew I had it 4yrs ago after a friend of mine did research and found we but had it. I still research and do as much as I can to help myself and bring awareness as many are mis-diagnosed. Since your young you can do as much as you can to protect yourself from injuries,ie. avoiding high impacts sports, strenuous work and activities. See a rheumatologist and cardiologist to get a echo-cardiogram to see if you have mitra-valve prolapse and periodiacly have your arota checked. Finally do a lot of research because many doctors no little or nothing about EDS. That’s my best advice. If your on Facebook, join a EDS or Zebra group there sometimes called. God Bless you.

      Toni

      Toni Ivory - November 25, 2014 at 4:33 pm Reply
  5. Do you know any PHysical Therapists, Pain management doctors, etc. that specialize in EDS in adolescents in the south Florida area (West Palm Beach, Palm Beach Gardens,etc)?
    Thank you!

    Alissa - November 6, 2014 at 5:49 pm Reply
    1. Hi Alissa,

      I reached out to Dr. Goldschneider, and he regrets that he does not have any contacts in south Florida for the specialties you mention. However, he did mention that you might want to try contacting a genetics clinic in your area for a recommendation.

      Rachel Camper - November 11, 2014 at 11:41 am Reply
  6. I’m an adult who fits all of the criteria for EDS vascular type. I’m currently being worked up for RA and vasculitis, but none of the tests come back abnormal. I’m in the Cincy/NKU area and wondering who I should see for this disorder. My family doctor doesn’t really know much about it. My condition keeps getting worse and this seems to be something many docs are not familiar with.

    Nicole K - November 12, 2014 at 9:14 pm Reply
    1. Hi Nicole,

      I reached out to Dr. Goldschneider and he recommended that you contact someone in our Connective Tissues Clinic in genetics to see how they might be able to assist you. They can be reached at 513-636-4760 or skeletaldysplasiacenter@cchmc.org. More information can be found on our website: http://www.cincinnatichildrens.org/service/c/connective-tissue/patient-referrals/

      Rachel Camper - November 14, 2014 at 8:21 am Reply
  7. I’m so happy to see this site! I am 52 now. When I was 39, I was diagnosed with a heel spur. After heel spur surgery, the pain from the incision was so intense, I pulled out the stitches. The podiatrist sent me to a neurologist who dx’d idiopathic neuropathy. I didn’t believe him. I’ve been on a 12 year quest to find out what this is.
    I took a CRP class from a lady whose Mom had EDS. She saw that I was in pain, asked my symptoms and told me about EDS.
    How does one go about getting a diagnosis? I had never heard of EDS and I have been in the medical field for 20 years. I have an appointment with a Geneticist 4 hours from me in April.
    I would like to get help before April. I have trouble discerning all the ‘types’. I have severe joint and skeletal pain with spasms and chronic diarrhea. Thanks for any information and THANK YOU for this site!!!

    Weeza - November 17, 2014 at 11:21 pm Reply
    1. I was told I have Ehlers but my eye doctor wants to make sure I have it. Can someone tell me how they test you for this. I have an appointment with my rheumatoligist next month but I want to know how they go about testing you.

      Patti - December 15, 2014 at 8:56 pm Reply
    2. Hi weeza
      Can you not just be specific and ask/tell your doctor that you want to be referred to a hypermobility specialist because my doctors were ridiculous for years I suspected hypermobility as a cause to my many symptoms but they never followed it through
      Until a rheumatologist and myself specifically asked for this refferal. Geneticists might take too long. hypermobility diagnosis you can know by the Beighton test. The specialists in this field will pick it up in minutes. Be sure to take your medical history makes diagnosis a lot quicker and easier. I was unwell for my appointment but my medical history spoke volumes. Be sure to demand /pay for this don’t let them fob you off. (The gp).
      It’s best to be straight and tell them exactly what you want. Don’t take no for an answer as you have lived with this for long enough.

      Son son - January 12, 2015 at 2:27 pm Reply
  8. I am so happy to see that EDS is becoming more recognized. I am 46 and was just diagnosed this past summer. I have spent my whole life in pain and tired. I was always so flexible (especially my fingers and knee joints). My childhood was plagued by daily stomach issues and essential tremors. By the time I was in 7th grade the fatigue, spontaneous bursting of vessels in my fingers, Raynaud’s, pain, and Syncopy had set in. I had suffered from Plantar fasciitis all through my younger years and cried in pain every time I put on ice skates. My parents called it growing pains and all the doctors deemed me nuts. I never knew what a normal day was like and probably never will. When I went in for out-patient surgery three years ago to rid of fibroids the result was a right collapsed lung, muscle atrophy, and pain that wouldn’t quit. It wasn’t until then that the doctors suspected something was off. Even now very few people are sensitive to my daily torture, because I look healthy (except for days when I’m wiped-out). I was an avid runner and biker. I loved being active, but by the time I hit 30 I was wearing thin. No one has any idea what this is all about unless you’re living it.

    Sam - November 20, 2014 at 10:26 am Reply
  9. living with Ehlers Danlos Syndrome is a life changing event with a lot of ups and downs but u have to learn to take advantage of those good days

    Trevor Scott - December 9, 2014 at 1:27 am Reply
  10. […] Pain Experience […]

    Pain Basics | Shoe String Schooling - December 10, 2014 at 2:36 pm
  11. EDS Hypermobile and ChiarI / Cerebellar Tonsular Ectopia

    Hi,
    I’m 40 and have had EDS 3 Hypermobile dx for about 13 years, though I am inly soon going to see a rheumatologist that really understand all the complications of it.

    Several MRI’S have mentioned that I have incidental Cerebellar Tonsular Ectopia 2.5 mm.
    (This means the bottom part of my bra / cerebellum hangs out of my sckill & down in my spinal column).

    The MRIs there is notation that “there is no crowding”, meaning my signal chord to brain aren’t compressing each other?

    As these images wee taken on my back, gravity was pulling my brain to the back of my skull rather than my toes…..

    Question, in someone with hyper extend collagen (Ehrlos-Danlos Hypermobility ),

    How likely is it that My Cerebellar Tonsils WOULD/could drop farther into my spinal column if I were standing? Because of EDS-H, thus causing crowding/chiari?

    I have major neurological issues, Dismotility, disautonomia, periphrr6al Neuralgia, pain can be are a symptom of EDS….

    But is whatever hold your brain in your soul subject to the same stretching as the skin or ligaments?

    Could this type of thing be effecting more people with eds and above symptoms, but falling throghb the cracks because it is a positional form of chiari?

    Is there a test to see if my “brain hands low” when standing?

    Imajenn - December 30, 2014 at 5:41 am Reply
    1. Imajenn,

      From our own experience, some patients pursue further evaluation and opt for surgical management. Of those, some seem to do better and others notice no change in their symptoms. The problem with the Chiari malformation is that the symptoms of autonomic dysfunction are highly similar, if not identical, to the autonomic symptoms that EDS patients without Chiari experience. Our opinion, therefore, is to pursue every nonsurgical management option first, with good attention paid to the treatment of autonomic symptoms. In some locations, neurosurgeons prefer to evaluate patients with “upright MRI” scanners. In the state of Ohio and many areas close to Cincinnati, radiologists have removed these machines, as their quality was not considered adequate. Thus, our experience with this technique is limited.

      Derek Neilson, MD - January 6, 2015 at 8:48 am Reply
  12. Soooo…now I have had 4 orthopaedists, 2 neurologists and a rheumatologist “suggest” to me that I might be an EDS-Hypermobility. I’ve always been considered rather “loosey-goosey,” but this came to a head a few years ago when I began to need a series of hand surgeries for bones that were, in some cases, too long, joints that would slightly dislocate and trap a nerve, tendons jumping all over, etc. The worst part wasn’t the surgery…it was finding out that I have CYP2D6/3A4 issues, meaning I do not metabolize any oral pain meds. Add to that an allergy to the adhesives used in the pain patches, and the silastic used in pain pumps and this leaves me with a need for IM/IV pain meds ONLY when the blocks wear off. NOW comes the big whammie!! Even though my primary care physician and whichever surgeon I might be dealing with write letters for me to carry, when those blocks wear off and I am in need of IM/IV pain meds, when I go to the ER – the only way I can get the meds I need – I am told I am a drug-seeker, drug addict, that my doctors should get a bottle of drugs and make themselves available to me 24/7 for pain relief, that’s it is “Not their job” to take care of me, etc. Yes, I have a pain management specialist, but they do not keep these drugs in their offices, and even so, after hours, I would have to go to the ER, right? Fortunately, the only time I need pain medication is following injury or surgery, BUT…when I need it, I DO need it, and I frankly take far less than a normal surgery patient who would be taking whatever every 4-6 hours until their first post-op visit. MY only problem is in the manner of delivery. What exactly am I supposed to do?

    Susan - December 30, 2014 at 11:46 pm Reply
  13. My six year old daughter has been diagnosed with (a rule-out really) Probable Ehlers-Danlos Type I/II vs. III. Are there any specialists in the Nashville TN area that you are familiar with?

    Tamara - January 9, 2015 at 3:13 pm Reply
    1. The genetics dept at Vanderbilt Children’s Hospital in Nashville sees both kids and adults. I was diagnosed with type 2 EDS by them (at age 38). I recommend them highly.

      Jilly - January 15, 2015 at 5:51 am Reply
      1. I have recently been told by several Orthopedics, neurologist, urologist and colorectal surgeon that I should be tested for ED. I am in the Nashville area. Any resources you may have are greatly appreciated.

        Brandy - March 29, 2015 at 8:06 am Reply
  14. Hey Holly,
    I checked into everything natural and i started on Genacol. This has a lot of colagen in it which helps lubercate the joints so they don’t crack as much. I got this at a health food store and i take 3 tablets on a empty stomach before i go to bed. The reason for this is colagen builds at night in your joints. Try it, its safe since its all natural. Hope it helps.

    Patti Hannon - January 12, 2015 at 9:36 am Reply
  15. I’m 23 and hypermobility EDS (I scored a 9 on the Beighton scale). I also have had a sports injury in my lower back for over 3 years now. Many failed treatments later (including physical therapy, massage therapy, prolotherapy, and many other types of injections), my back has made no improvement at all. My latest physician, whom I have been seeing for over a year now, diagnosed the issue as an illiolumbar ligament sprain. It sounds like the injury may be linked to my EDS but I am not sure. Would it be worth seeing an EDS specialist for this? Are there EDS specialists that are highly experienced with sports injuries? I live in Austin, and I have heard there are some good EDS specialists in this area. However, I don’t know what kind of doctor/physician I should be looking for.

    Anthony - January 13, 2015 at 11:25 pm Reply
    1. Check out EDS Texas on Facebook. They have a list of drs recommended by other patients in texas. I’m in houston area, so don’t know any Austin drs but know of others who have made recommendations for the area. Good luck

      Melanie - July 3, 2015 at 4:09 pm Reply
  16. My daughter had a fall in high school gym class, she hit her elbow but tests showed that it wasn’t broken, the pain did not go away and in fact intensified, her pain shot down from her elbow and into her hand causing spasms and numbness and pain there. Her pain increased and started to shoot from her elbow to her shoulder and then across her shoulder to her neck. We have seen nerve specialist, bone specialists, muscles specialists, we have tried physiotherapy, acupuncture. The only diagnosis we have is that she has regional chronic pain syndrome, and EDS. She is in constant pain and now, 5 years down the road has begun to have her shoulder, knee, and even shoulder blade dislocate. We finally got a referral to the Mayo Clinic hoping that we would finally get a diagnosis and treatment help. After waiting for eight months for the appointment and travelling there (we live in Canada) and spending two weeks running test after test (we have no medical coverage in the states) they came up empty . They wanted her to remain there for three more weeks to learn techniques to live with her chronic pain. Im sorry this is so long and drawn out but thought maybe someone here would have a similar experience and be able to help us out. As a parent i would gladly take the pain for her if i could, its heart breaking watching this time that should be the best time of her life become a constant pain filled existence.

    Jim Peterson - January 14, 2015 at 1:52 am Reply
    1. Look into myofasical release for your daughter. I am hypermobile and have chronic myofascial pain (diagnosed by a physiatrist more than 10 years go). That physiatrist got me started using a Theracane with a book on self-treatment for myofascial trigger points, author is Clair Davies if I’m remembering correctly and it’s most recent edition is available as a Kindle edition for around $10 (USD). That would be my first suspicion of what’s going on with your daughter, she probably activated some formerly latent trigger points when she fell, and then subsequently activated a bunch more with her adapting her movement to try to compensate for the injury. I don’t actually find the Theracane all that useful most of the time, what is more useful are firm balls of various sizes (I have tennis balls in men’s tube socks all over my home & car so I can grab one when needed, and a couple other smaller and larger balls for dealing with more specific issues). Foam rollers can also be useful for larger muscle groups, might help in her upper back & shoulder but if the elbow was the original injury point look into treating the myofascial trigger points in that region and then follow the path that the pain initially spread in. A TENS Unit may also offer some relief, I was just finally proscribed one of those this year then soon thereafter I saw some lower end ones that were for sale at a department store. I’m in my late 30s and have been in pain since I hit puberty but it hasn’t held me back. My friends with chronic depression are MUCH more debilitated than I am, as long as I keep my focus on the things I *can* do instead of letting myself fall into the negative spiral. For psychological components self-help, I highly recommend the works of Dr. Martin Seligman (Learned Optimisim, Authentic Happiness, and some other books) and Dr. Brene Brown (I frequently just have the audio version of her book Daring Greatly playing in the background half paying attention to it when I’m having a rough day).

      Best wishes to your family. It’s so important to find ways to experience daily contentment and moments of joy. Seek those, and hold to them in the challenging times. They’re a great life preserver.

      Ahmie - March 17, 2015 at 10:06 pm Reply
  17. my 19 year old was diagnosed by a sports medicine doctor with connective tissue disorder. She is now having more issues with pain and chronic fatigue. It there a specialist in ED in Columbus, OH?? I see conflicting recommendations between a rheumetalogist and geneticist.

    Karen - January 14, 2015 at 7:05 pm Reply
    1. Hi Karen,

      I reached out to our doctors and they said that they are not aware of any specialists in Columbus; however, they would be happy to evaluate her here if you’re able to make the trip to Cincinnati. Connective Tissue Clinic: 513-636-4760 or skeletaldysplasiacenter@cchmc.org

      Rachel Camper - January 15, 2015 at 2:37 pm Reply
  18. One of my 4 eds kids is in chronic pain from constant rib dislocations and other things . She is seeing a p.t, psychiatrist and POTS doc. She wants to smoke pot for anxiety and pain but feels judged for it and hesitant to talk to docs. We do not allow it in our home. She has now found a group of friends she can do it with rather than pursuing a green card. She is 19. Any thoughts?

    Sara - January 16, 2015 at 1:40 pm Reply
  19. I believe my daughter has EDS since she was 10. She became very clumsly. She has always been very hyper and active. She is very active in sports and has no muscle tone. SHe is 12 now and has partially dislocated her knee caps 2 times. Spent a year physical therapy. THE PT noticed her fallen arches. I just found a picture of someone bending their fingers all the way back she does this often. Recently she is gaining quite a bit of weight. It just seems odd for a girl as hyper and active as her. Does this sound like EDS. P.S her teeth are really yellow and whiting is not working.

    Tracey - January 30, 2015 at 7:32 pm Reply
  20. Jim: Please read the links:
    http://www.tcapp.org and http://www.inspire.com/groups/ehlers-danlos-national-foundation
    As Dr. Goldschneider says, the EDS world has changed *completely* since 1990. And, new knowledge has been learned even since this article was written 18 months ago. Most big-name places have not kept up with current knowledge, tend not to understand how EDS changes basic anatomy, and tend to recommend insufficient approaches to pain, including “coping” and PT. Please read how you can help your daughter from people who live with EDS pain daily for years. Thanks to Dr. G and team for great work at CCH with EDS!

    As EDSer - February 1, 2015 at 7:13 pm Reply
  21. Could anyone recommend an EDS savvy physical therapist in Massachusetts? I live in Western Mass but am willing to travel to Boston, or really anywhere in Mass/CT/ southern VT/NH, even NY, as i have had very little luck finding pt out here.

    Thank you!

    molly - February 6, 2015 at 11:05 pm Reply
  22. Does anyone know of a Dr or group of Dr’s in the Oakland Tennessee area? I have Ehlers Danlos&severe chronic fatigue&severe chronic pain,ADD,&a few other things. I recently moved here and have had my ability to function taken from me as I can’t find good doctors that communicate or even treat me as more than a chart number. I want my life back I have years of proof showing I have been tested and tried on many things and why certain things worked so much better but now I go to a doctor and they won’t do anything till one of the other symptoms is treated first but won’t recommend who to go see and it doesn’t seem to matter to them that I can know longer function well on my own. So frustrated now

    Dianne Sullivan - February 13, 2015 at 7:50 pm Reply
  23. I have been in some fibromyalgia support groups where pain is one of the main topics of conversation. When I joined the EDS group to learn more about it, I was very surprised that the members talk about severe pain just as much, if not more, than the fibro patients. It’s a big deal and can be debilitating.

    Traci - February 15, 2015 at 1:07 am Reply
  24. I have EDS and so do my children. Does anyone know of a good PT in the Nashville area? They have been diagnosed.

    Gloria - February 22, 2015 at 10:47 pm Reply
  25. My six year old son has similar symptoms of EDS. Could you please recommend a specialist for EDS in Southern California specifically in Ventura County or San Fernando Valley?

    Thank you.

    Lisa - February 22, 2015 at 11:50 pm Reply
    1. At one point in time, there were EDS experienced geneticists at Cedar Sinai Hospital in Southern California.

      Kelly - July 3, 2015 at 12:50 am Reply
  26. My 33 year old daughter was diagnosed with EDS in 2013. She currently sees a massage therapist 3 times a week to cope with pain in her shoulders, back, and hips. We are currently traveling to Beavercreek, OH, by way of Knoxville, TN, Lexington, KY, and Cinncinnati, OH., to see a doctor. Is there a physical therapist/massage therapist in any of those areas that specializes in EDS?

    Sherry - March 14, 2015 at 1:46 am Reply
  27. Hi there! i was wondering if anyone could help point me in the right direction? I live in the central Ohio area. Trying to figure all of this EDS thing out. I suspect I have EDS, I have all of the outward signs but would like to know for sure if it is truly what I have.

    Jennette - March 17, 2015 at 8:36 pm Reply
    1. Hi Jenette,

      Please feel free to reach out to our Connective Tissue Clinic (513-636-4760 or skeletaldysplasiacenter@cchmc.org) to see how they may be able to answer your questions or point you in the right direction.

      Rachel Camper - March 18, 2015 at 8:50 am Reply
  28. i looked for answers for 10 yrs on what was wrong with my grandson. it started at 7 with popping joints, i mean severely popping. it was blown off by the dr. at 11 he was screaming as he tried to get out of bed, 2 rheum blew him off. i insisted our family dr put him on mobic. that ended up being the only reason he could get out of bed. this yr he is a senior and it has been so bad, he’s missed over 30 days of school the pain is so bad, the dr added gabapentin & tramadol, which don’t seem to do anything. saw another rhem at this point, he said he had hypermobility but i don’t think he knows anything about EDS, so he was no help. then our dr tried cymbalta which was wonderful for the first week, then nothing, so after 5 weeks and side effects i pulled him off it. the high school is trying hard to aid him so he can graduate, like letting him go to the library and have his work brought to him, but he has trouble just getting there. rolling backpack or wheelchair? he freaks out. is there someone in the NW arkansas area, even little rock or tulsa that that is familiar with EDS and could hopefully help him? there has to be something that can help people with this, it’s just finding it is the problem. thank-you

    carol deiterman - March 18, 2015 at 9:16 am Reply
  29. My son has complained with growing pains for as long as I can remember. He is 10 years old. He is double jointed he can bend his fingers all the way, he can make his fingers look like a folding fan. I can do the same. I sit with my legs twisted like a pretzel. My grandmother at 80 was flexible, but suffered with hip, leg joint pain her fingers were distorted with what was believed to be arthritis. My five year old is flexible and recently dislocated her thumb when she slid off her chair.
    My mother has had 2 ruptured achillies, knee surgery, carpal tunnel surgery.
    Do you think He should see a connective tissue doctor? He has had all the tests to rule out childhood arthritis. They were negative.

    Marcia Canfield - March 18, 2015 at 1:57 pm Reply
  30. Holly, I agree pain meds are not a good long term answer, but they sure have made the difference for me. I have been doing PT the whole time too. My current PT has master hands- he is very good at reading- well whatever it is he is reading. It seems a little hand-wavy, but it does help. And yes, our end goal is to not need the pain meds when we are all done, but for now using the pain meds responsibly means being able to do the PT exercises.
    Also- doctors recommended 100% red grape juice and gelatin for my mom with her Mixed Connective Tissue Disorder. I drink the mixture every so often and it seems to help, so does eating Jello which is a little more fun ;)
    All that being said, I seem to have some additional stuff going on medically, so maybe that is the difference between needing the pain meds and not.
    Thank you for your reply Michael- so many of those things are true for me too! Nice to hear someone else with similar symptoms, many times I feel like the doctors I go to think I am making things up. The migraines! I’ve always had them, never been treated. Now that my entire left side is numb/tingly we are looking to rule out hemiplegic migraines. OMG yes to the dental stuff!! I too am embarrassed going to the dentist even though I take care of my teeth I have suddenly had tons of cavities over the last 2 years after not having many (and no it isn’t because I am eating Jello).
    I have seen just about everyone except a geneticist, that never even came up, despite knowing that I have some genetic abnormalities which effect how I metabolize medications… and that my mother, brother, and a long line of predecessors have had similar issues. Thanks for the potential tip.

    KS - May 14, 2015 at 12:23 pm Reply
  31. Can anyone explain the gut connection? I have had constipation since puberty (27 now) despite growing up eating out of the garden. Had pelvic floor dysfunction testing which came back normal (rectocele was only abnormality), but still struggle with constipation despite taking Miralax daily (eghh).
    My mom has also struggled with gut issues- more so diarrhea, she has lactose intolerance. I don’t have any issues with lactose, not gluten intolerant, have done multiple rounds of exclusion diets w no changes.
    Basically- what is the principle behind why IBS seems to coincide with ED? Is the gut “leaky” because of the connective tissue disorder? Peristalsis not as effective?

    KS - May 14, 2015 at 1:02 pm Reply
    1. Hi KS,

      There are many theories as to why the gastrointestinal tract can be dysfunctional. These have included “leaky gut,” histamine effects, specific food intolerance, abnormalities of serotonin signaling, deficient feedback control of peristalsis, etc. At the end of the day, they remain just that—theories. Unfortunately no one has looked at demonstrating and testing the story of how this works from beginning to end. Importantly, we see wide variation between EDS patients as to how their GI tracts behave and how well they respond to therapies. As such, there is no “one-size-fits-all” treatment for the gastrointestinal problems patients with EDS face.

      Derek Neilson, MD - May 22, 2015 at 3:54 pm Reply
  32. I can’t believe massage therapy isn’t on your list of how to help manage EDS!! As a pain management LMT & a person with EDS, it can be the best relief out there. My chiropractor is a life saver. She has helped with my spine subluxations, as well as my hips,shoulders, & ankles that regularly slip out of place. But one of the best management tools has been Prolotherapy. Prolotherapy has decreased my subluxations, stabilized them after the fact, and allowed my to keep working as a manual therapist. I was on my way to looking at wheel chairs (already had canes & walkers & braces for every joint & my spine). I am brace free most of the time, rarely need my cane & it is because of Prolotherapy. I do utilize water exercise & have for 20 years since I had a failed hip & knee surgery in my 20’s. Please consider these modalities in the future. I have worked on & referred many clients with & without EDS with great results. Thank you! Deborah Marasco, LMT

    deborah marasco - May 30, 2015 at 8:43 am Reply
    1. Deborah! I had to email as soon as I saw your post. I have EDS Type 3 and secondary fibromyalgia due to EDS along with other things, IBS, severe brittle asthma, Apergers Syndrome which is a type on autism at the highly intelligent end of the scale and a few other things but!!! The treatment you spoke of – prolotherapy – I am going to google it now but please, please could you explain to me in your words what it is and how it helps you etc. I a, 28 and on so much medication I break down into tears sometimes, I just wish I could come off it all. I also have good to extremely bad days and I never know when I guess you could call it an ‘attack’ of EDS comes on where I can become bed bound. I have an electric power chair, a manual active wheelchair and crutches. I also too have splints and braces for every major joint in my body provided by me Orthotic specialist – ankles, knees, spine and back – picture I body protector used by horse riders, then imagine it ceding the same height the entire way round so I am basically in a tube I guess of support through metal parts and Velcro etc, shoulders and wrist braces and splints. My elbows have got away with it so far but are the last joints now to give out and start dislocating and hurting – they, like ALL my joints, too hyperextend. It is RIDICULOUS!!! The consultant osteopath who diagnosed me did a series of physical test, examinations, observations of me walking, bending etc took family details and history etc and diagnosed me, I couldn’t understand what he said when he said Ehlers-Danlos Syndrome Definitely with Hypermobility, however without further tests to rule out other tests I may have other forms as well or other symptoms, I asked him if he could explain it to me…I did not expect the next series of sentences; he wrote it down, handed me the piece of paper and then said oh and secondary fibromyalgia, go and look them up on google, don’t bother going to your osteopath again or chiropractors or anything of that sort as it may give you temporary relief short term but they love people with your type of conditions as you will always click and crack naturally anyway but especially when massaged and manipulated, you will be relieved for a day maybe or so then be in pain again in a few days to go back for a weekly or. More often session, they make tons of money out of you and do not actually do anything to benefit you. You will always be in pain, you will learn to live with that and may Al,out certainly be in a. Wheelchair by your early 30’s, contact sport is out of the question, swimming only – at the time I had just been picked out of under 18s woman’s rugby team, British the kwon do champion and black belt in karate. Wow this feels so good to get out my release even though it is killing my arms and elbows, and neck and fingers etc lol but it is WORTH IT, I do hope you see this message, and/or anybody else who can identify or help, please? I’m only 27, I have a disability dog, a wife who is amazing and 1 1/2 older than me who has ADHD and since meeting has developed fibromyalgia due to her mum passing away due to an 8 year fight with terminal breast cancer…it was through Sue, my wife’s mum, that we met, I was on the same ward as her mum for asthma, Sue was there because she could not maintain her oxygen levels so had to be on a respiratory ward. Fate brought us together perhaps, all I know is she is my universe and I am hers but my illnesses and conditions put strain on her not just physically but emotionally and mentally too…she would do anything to see me out of pain and it breaks my heart to see her so sad when she feels helps….basically, I hurt so, so badly I am even on oral morphine as well as the highest pain patches and tablets, please, please could somebody help? I am hoping on this therapy your spoke of – prolotherapy, hydrotherapy and swimming does help me too but not enough to come off of meds. Please forgive my ramblings, it has felt so, so good to get all of this out though, I didn’t realise what I was carrying around in my head with such strong emotions attached. I basically have to rely on others 24/7 now – I cannot drive now as I have also have dissociative seizures and have carers in at least twice a day and two days of the week for 7 and 9 hours long days…I feel my independence has been stripped, I feel stripped….please help me to anybody out there if you can to rebuild myself? Thank you so much for even just reading this. Mitch (Michelle, 28, England UK)

      Mitch - July 2, 2015 at 9:20 pm Reply
  33. Hello!

    Thank you for amazingly helpful article and comments. I am posting on behalf of my close friend who has been dealing with debilitating pain and discomfort from EDS for the past several months. He is barely able to get up and experiences difficulty with most movements. He has hypermobile type EDS and experiences abdomen spasms and shifting in his chest. He describes his abdomen/chest as twisted during the day and trying to untwist at night. We are located in NH and are desperately trying to find resources that may be able to provide help, stability and support.

    Thank you,
    Talya

    Talya - June 6, 2015 at 11:43 am Reply
  34. Hi. I’m 32, and I saw a Physical Therapist last week for elbow and back pain. All of my joints have been hurting for years and no one could figure out why – it made me feel like I was crazy. The Physical Therapist, upon examining my elbow, saw the hyper-extension and immediately checked all my other joints…no surprise to me, they all are extending beyond normal range and I am a 9 on the Beighton Score. EDS covers so many of the symptoms I’ve had for so many years. Mitral Valve Prolapse, Orthostatic BP, fatigue, blacking out, racing heartbeat, TMJ… Where would I go to get an official diagnosis? I know there’s not much that can be done for it, but if I had known this before, I probably would have been able to avoid the injuries I have that may need surgery. I live in South Jersey, about 30 minutes outside of Philadelphia. Does anyone know of a doctor I can see in this area?
    Thanks.

    Gina - June 8, 2015 at 2:14 pm Reply
  35. can someone please email me my 2 year old son has been diagnosed and hospitalized many times in his short life and our doctors are at a loss on what to do for him he has an ulcer on his scalp that has been there for almost two years and it bleeds until he has become anemic here is his story I’m not looking for donations just advice on what to do for him and where to take him out dr contacted Cincinnati and they said they had only seen a handful of cases like him and even in the eds world it’s rare but that doesn’t leave me with anything to do for my baby thank u in advance

    Alexis Hanson - July 3, 2015 at 1:34 am Reply
  36. My husband has EDS and we have a hard time finding a doctor that can help. Are there any PT’s or other doctors in Maryland (or close to Maryland) that you could recommend? He is in a lot of pain and no one seems to be able to help him.

    Krissy L - July 3, 2015 at 8:12 am Reply
  37. I would soooo appreciate if someone could help lead me in the right direction! Ive dealt with this Since I was 12 and ive.just been recently diagnosed and im now 32!!! ALL the Dr ive seen has no idea what to do for me even Emory hospital in Atlanta Georgia which is where i am located!!!
    Thanks

    Rachel - July 11, 2015 at 11:00 am Reply
  38. Krissy,

    I’m a mom of two children with EDS. Contact Dr. Clair Francomano at the Harvey Institute for Adult Genetics located at the Greater Baltimore Medical Center in Baltimore/Towson Maryland. Phone number (443) 849-3131. Also contact PT specialist Jan Dommerholt at Bethesda Physiocare (301) 656-5613.

    I wish you and your husband the best,

    Donna Ward - July 22, 2015 at 11:12 pm Reply

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