Tell Me a Story: Managing Chronic Pain from Ehlers Danlos Syndrome

Tell Me a Story: Managing Chronic Pain from Ehlers Danlos Syndrome


“Hi I’m Hallie Pollard, I’m twelve years old, and I’m a patient in the” “Pain Management Clinic.” “Hi I’m Katie Bentley and I’m Hallie’s mom.” “Hallie was doing ballet at the Cincinnati Ballet, dancing in the Nutcracker, Cinderella,” “things like that.” “People in my dance class they would say,” “‘Oh wow you’re so flexible! It’s awesome
you can do this and that and this and that.'” “But it hurt my body afterwards.” “We started noticing that she seemed like she was just having little injuries” “a lot, and then all the sudden we notice
that she started having a lot of pain in a” “lot of places.” “I mean, if you didn’t know Hallie you
would think that maybe she was just” “imagining it because there was so many
paint spots on her body. I mean her chest” “hurt,” “legs hurt, and her head hurt. I mean everything hurt. And” “Hallie is not a complainer. She’s not one
to just sit and say this hurts, this hurts,” “this hurts. And then when you would give
her something for it and it wouldn’t go” “away,” “we knew something was wrong. It was real frustrating because, you know, as a parent where do you” “take the kid has pain everywhere?” “I’m Dr. Ken Goldschneider and I’m the Director of the Pain Management Center and we’re” “here in clinic.” “We generally start with how she’s been
doing. And what we’ve been been doing just now is” “talking about her interest in theater and
dance” “because people with hypermobility
syndromes can do very well at dance,” “but it can come at the expense of their joints. And what she’s learned really well” “is to balance how much she does that she
enjoys without going too far in straining” “her joints” “therefore causing more pain. We’re
familiar with Ehlers-Danlos syndrome” “joint hypermobility, which we hear over
and over again that people just don’t” “know what that is.” “And even if they know what it is, they
don’t know what that means.” “Overall goal number one is function. These
kids have to have lives,” “and when I say get a life I mean it in
the most” “positive, wonderful way. Because a lot of
time pain gets in the way.” “I mean it hurts in the first place. It’s
a message that originally means stop,” “protect me, don’t do anything until I’m safe.
But the problem is getting past” “that point where you say, ‘You know what?” “I know I’m safe and I can work through
the pain until it heals up and I can modify” “my lifestyle and be better and not have pain.'” “That’s a big process to go through, but
once gone through that process for this” “holistic process,” “then having a life is the goal.” “The best thing we did was get into that
pain clinic” “and do physical therapy. We just learned
so much. It was a huge” “education on their part.” “I started out by” “being in bed. Then with the help of Pain Clinic and physical therapy and” “headache clinic” “and the other doctors I’ve been seeing,” “I’ve gotten to have my life back.” “And pain is not controlling it anymore.” “I’m controlling it.”

35 comments / Add your comment below

  1. oh my gosh, poor kid. thank god she feels better. Pain is not as life threatening as cancer, but hurts really bad. GO HALLIE! FIGHT THAT PAIN!

  2. It's great that her pain is better. I have the same condition I'm on pain daily I've tried heat tens unit and more my ribs pop out! I go to a chiropractor to pop my joints back and hat helps to a point. I also have a related condition called chiari malformation it's when your beck of your brain slips in to the spinal column I got diagnosesd at 6 only treatment for chiari is surgery brain surgery they first surgery they take part of my skull out to make room for the fluid hat surrounds your brain so it doesn't get built up. Chiari causes debilitating headaches dizzie ness and more . Symtoms returned got full version of the surgery wich they make even more room. Even more major surgery. Then symptoms returned again diagnosed woth ehlers danlos eventually and then realized that when hey did he first surgery they took a shakey foundation cuz my ligaments in my neck is already loose but when they took away some foundation it caused instability in my neck wich means my neck was pressing on my brain stem I was so dizzie I couldn't stand with out a neck brace. Got my neck fused skull to c2 was good other then my joints hurting. Still a lot better but because my upper neck is restricted my lower neck has more stress so I now have chronic neck pain and spasms weekly small headaches monthly huge bad migraines. And I also have postural orthastatic tachycardia syndrome wich means when I stand my blood pressure drops heart rate jumps and I feel like I'm going to pass out most people with my condition do pass out but I never have. I'm 13 and I've had 3 major surgeries 2spinal taps too many MRI and ct scans to count. A procedure when they drill a hole in my skull and put a tube in to measure the level of the fluid surrounding the brain. and a procedure to close a small hole in my heart they put a tube in a major artery in my leg and lead it to my heart and closed to up too many hospital visits and ER visits to count been to 6 hospitals 5 out of 6 I've been inpatient . I'm better now but still struggling woth my neck and joints a lot every step is pain but I work through it and go to PT to strengthen me.

  3. This is my sis account I'm Maura. Because my lower neck is stressed probably within the next 20 yrs another surgery will be needed. I

  4. I have EDS type 3 Sometimes it's horrible and sometimes it's ok-ish I have a "pain threshold" i also have it doubled because both my parents have it
    It took three years to finally get the diagnosis we finally got it from professor Rodney graham I've moved school twice the first time because my teacher said to me " misty i think your picking and choosing what you want to do and getting out of it by saying "my legs hurt" when they don't" and the head didn't believe me about anything My mum decided to homeschool me at the start it was great Also my mum received a letter from the. Headteacher from the council saying VERY HORRIBLE,MEAN STUFF We moved to the country to try out the lifestyle also I did go back to school We didn't like the country so we moved to a small town and I moved to a private school I have also had a broken toe a dislocated hip and my wrist's bones out of place (I am writing this in a cast) I have also sprained my knees and all the ligaments in them
    thanks

  5. Myself and my 17 yr old son have EDS 1,2,4. My pain is chronic, his is up and down. I want so bad for him to do better than I am doing but I just can't find any doctors that know more about EDS than I do ? Thanks for the info

  6. I had joint pain since I was a child but I was only diagnosed with h_EDS (ehlers danlos type 3) this year and i am 38. Three years ago, I missed my first rheumatology appointment because I had Flu, two weeks later I got a letter from the doctor saying he had reviewed my history and diagnosed Psychosomatic Pain. With no physical examination at all. I was not well enough or well supported enough to go back to be seen and to be honest the pain i can suffer is so severe that it can seem totally unreal. I also have Endometriosis so you can imagine. This year I decided I must be seen immediately. With the help of my Husband, I arranged to see a private GP and have a quick referral to another Rheumatologist who would see me. I was easy to diagnose on examination. I cannot sue the original doctor for negligence because so far I have been told there is no treatment for EDS. is that correct? I was also treated by Psychiatry from age 17. And no one knew.

  7. I have elers danlos type 3 and im 12 I deal with pain and seziers and bulling because of the pain I go to Duke monthly and I try to keep my elers a secret.. please notice eme

  8. I have EDS but I can't take prescriptions so I have found the cusack protocol and it WORKS it's amino acids and polysaccharides which help in compensating for the faulty connective tissue

  9. I have hypermobile type Ehlers Danlos Syndrome…. I used to be a competitive dancer…. now I’m in a wheelchair with AFO braces on my ankles simply because I dislocate walking…. while I wouldn’t change my life for anything… I wish I had my life back

  10. Your not alone. I am a 12 year old with EDS. The pain is intense. I am also a patient at Cincinnati Children’s Hospital.

  11. How can she even perform ballet at all? Her case must have been mild. I'm a 29 year old male with hEDS and when I was about 18 or 19 I wanted to pursue a modern dancing style which has origins / roots in ballet. The constant failing and poor balance was part of what made me realize that I had something along the lines of hEDS but afterwards I never wanted to pursue dancing again because I eventually realized that it was hopeless. Even playing the electric guitar or playing video games is extremely frustrating using silver ring splints because I can't keep my fingers rigid while playing the notes. With connective tissue disorders you basically can't pursue the types hobbies that you're enthusiastic about, no matter how passionate you are about them and how much you love them. This girl is lucky.

  12. I have EDS. Yes, its terrible, but it was given to us for a reason. God has given it to us for us to learn and show our peers how to be strong. We as people with EDS need to show people that even if we are in pain, we can still fight on. Thanks so much to all the people out there who have supported and helped EDS patients. And to fellow people with EDS, stay strong! If anyone can, its you!☺

  13. Parents and Physicians : Pain does Not heal with EDS, but proper medication to control it, braces, KT tape and physical therapy can help greatly gain a quality of life. Get educated on different types of pain medications available, differences in enzyme metabolization rates with EDS; learn about the dangers of untreated pain that can become centralized (CNSP), be aware that EDS becomes more painful as someone ages and normally severe intractable pain disease by mid twenties or sooner ;understand that short trials on different morphine-based medicines may be necessary to find the right one to control pain in your child, also do not be afraid of this necessary therapeutic medical intervention. We would never condemn a child for needing insulin for their diabetes, please do not condemn a person with severe pain disease for needing medication to support their quality of life aswell. Also please Listen to your Zebras when they say they are in pain, their tolerances are normally extremely high from never not knowing pain is 'not normal ' so when they reach out for help it's probably even worse than we would guess… Thanks ?

  14. I'm 43 and I can still sit cross legged and put my chest on the floor and I have massive spinal damage and cervical kyphosis. Guess that's not normal? Hang tight kiddo! Much love!

  15. I am so scared, I went to the doctor because of my joints and they are testing me for EDS, and I am in so much pain but I really don’t want to have EDS I just wanna be normal and live a pain free life I am so scared that I will be diagnosed with EDS and I don’t know what to do help meee

  16. I have EDS type three and type two and type one I’m all EDS and also have hyper mobility and club foot and you don’t know how much pain I’ve been through

  17. What are good methods for those of you with EDS? Are they affordable? Do you have recommendations for care providers? Asking for someone in Inglewood.

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