Children with Ehlers-Danlos or Hypermobility Disorder struggle to put into words how they are feeling. This morning at our Saturday Jointpainrelief group a couple of the mothers talked about phrases their children used. Here is a few-
- “My bones feel like cement.”
- “My muscles feel heavy.”
- “I am sick of feeling so tired.”
These children experienced disadvantage at school because-
They might find it difficult to hold a pencil and write. This might lead to the conclusion that they are “slow learners”. They can’t keep up with class work and might be judged as lazy by teachers.
Discomfort makes it very difficult for them to sit still in class. They are often in trouble for fidgeting.
Many, but not all, children with this condition may lack co-ordination. This means that they are the last to be picked in team sports.
I heard of one case this morning where the child became so humiliated by her experiences at school that she became depressed and suicidal from a young age.
School can be a tough environment. Teachers under increasing pressure to get results can be frustrated by children who appear to be unco-operative.
Better information for teachers could lead to earlier diagnosis and physiotherapy for the child. It also could lead to a more understanding classroom environment.
I would love to collect all the phrases kids use to talk about the experience of Ehlers-Danlos. It is possible that parents may be searching with these very phrases to better understand what is happening to their child. Our list might help them find answers and help a bit earlier.
If your child has been diagnosed with Ehlers-Danlos or Hypermobility disorder please send me the words they use to describe how they feel – we will publish this list on our website.
Firstly, thank you for all your hard work and support over the years.
Please feel free to join us in building a helpful website. You can contribute from either a professional or personal perspective. Your insights will be highly valued.
You’ve got a great idea!
I’d like to recommend resources where you can find more parents so you can survey a wider range of people around the world.
http://www.ednf.org (Ehlers-Danlos National Foundation in Los Angeles, California, USA)
http://www.chiariconnectioninternational.com (Chiari Connection International [CCI], based in the US. Since 13% of Chiarians have Ehlers-Danlos, you’ll find a lot of parents of Chiarians who also are dealing with EDS. CCI has an online parent support subgroup through Yahoo Groups.)
There’s a Canadian EDS group called CEDA also accessible through Yahoo.
I wish you all the best on your project.
I have eds, and im now 17, they only way ive been able to describe it some times is:
“It feels like my bones are bending and going to break”
“Feeling Like My Fingers Need To Click (knees, Toes, Wrists etc)”
And Feeling Very Weak, Like Just Piking Up A Cup Would Feel Like My Arm Was About To ~Break At Some Points
I Hope I Helped
This is great information for me. My son has Autism, mostly non verbal but is in extreme pain. One thing he does “say” is “my brain hurts”. He has recently been diagnosed with Classical EDS after years of trying to find an answer to why he is in such severe pain. With his Autism, the doctors did not believe me and though I just didn’t understand my son. Finally a diagnose. He just points to just about every join in his body at different times and says “hurts” as well as having EXTREME fatigue.
Both of my kids have HMS and are dev delay with one having autism. My daughter says that she’s tired alot, her muscles burn, her body hurts. I also have HMS and used phrases like my leg feels like it’s about to fall off, it feels like it’s not sitting right.
Hi Amy, Thanks for adding to our phrases list. It is so valuable to see how each person describes their experience. There will be others who will read your words and feel better because they will realise they are not alone. I appreciate you taking the time to get in touch. Best wishes to you and your family. Regards Julia
Our adopted child from foster care has EDS (mild) and described the pain as: “My whole body hurts!” “It feels like little needles all here (indicates area).”
We had great difficulty with the local public school in a suburb of Burlington County, NJ and pulled him out for his own safety. The staff was generally understanding, but the children were allowed to taunt him for being different and push him over all the time.
Since Billy looks and can usually act normal, during a pain day, he was scene as “generally disruptive” and “refusing to do his work” and causing issues by “being a pest.” It took 4 months to get the 504 to all the teachers, and it was too late for his self-esteem. The teacher’s were surprised because “he looks normal – not like some disabled kid.”
We were told that while in the public school he rolled around on the floor in pain, and we were asked “what is his problem?” When asked if he was sent to the nurse, we were told “this is behavioral…are you first time parents?” Even though his diagnosis was confirmed by a Major Children’s Hospital and he goes for both PT and OT privately through a distinctive local children’s rehab hospital, we were told he was “being a big baby” by an administrator. When children pushed him down on the playground (he falls easily do to flat feet and lax ankles), we were told “he’ll be fine, he’ll just get used to it. This is your first child, isn’t?”
Three x-rays later (due to bullying) and Sure Steps for his ankles (all done privately becaue the public school said he didn’t qualify for an IEP), kids still try to push him and he now does not fall and have more pain follow. Guess he didn’t have to get used to it, huh?
We put him in a private school after the comments regarding the 504, and there is MUCH MORE communication and supervision regarding his issues then ever. He still has moments, and we are getting better at having a shy 6 year old discuss pain, but we note it is usually 1 day before a major storm that his pain increases. The Sure Steps have been such a GREAT motivator for him, “Mom, they can’t push me over and hurt me now!”
Hi Michele, Thanks for getting in touch. I will add your contributions to our growing list of descriptive words kids use to talk about their experience with ED and hypermobility. You’ve put in some really useful ideas there about making school more manageable for children with these issues. All the best.
Regards
Julia
We just found out my son has EDS, he’s always said that everthing just hurts. He said sometimes it feels like somones hitting him and other times he says it feels like little needles poking him everywhere. It breaks my heart! He has temper tantrums when he’s mad and doesn’t understand why he hurts so bad afterwards. He’s only 6 and its very hard to explain.
Hi Jeri,
Thanks for joining this online conversation. Already you have probably made several other mothers feel less alone. Connecting up to others can be so liberating for us and for our children.
We have recently started seeing a specialist pain clinic and I am amazed at how that has improved things. It seems easier to get help and support for my daughter now see is older. As the Mum of a child in pain I found very little support. Had to organize it myself -even finding one other family with similar issues was really helpful.
Please know that your experiences are valuable to others and you are not alone. It is heart breaking and you have every reason to feel hopeful about the future. Our understanding of pain and how to work with it is moving at an incredible pace. I feel confident your son will benefit from this research.
All the best. Julia
My daughter explains that EDS to her makes her feel old. She has said that there are some days that she feels she has more pain in her joints than an eighty-year-old. She has tendon transplants in her knees, and she worries that someday she will have to use a wheelchair like I do (also from EDS). She then tries to work against the pain, and tries to ignore when her body tells her to stop, because she does not want to get worse. Usually, however, she gets injured from doing this. It upsets her, and we have had depression issues from this. She has an enlarged aortic root from EDS, but she just tells people that there is just too much love in her heart…
My 3 yr old has EDS Hypermobility
“My legs are tired”
“They just need more rest”
My legs need more food”
“My ankles are making me crazy”
My DS (7) recently drew daggers on his heels, knees and elbows to show me how and where it hurt.
At a birthday party today he stopped playing and came and sat with me because he ‘felt tired’ when I asked where he felt tired he said ‘all over’
He isn’t diagnosed yet but has an appointment with a rheumatologist soon.
Hi Jules,
I really appreciate you sending in the descriptive words. Can you please send me an quick email when you get your diagnosis so I know which type of arthritis the words best describe.
I was very moved by your words. It reminded me of so many moments like that with my own daughter.
To have your child suffering and not being able to take the pain away is so tough. It is a sad, exhausting, frustrating torture for a parent.
I hope through this website and your own hunting that you find others. Being part of a group of people managing similar issues is like fresh air.
Please also remember that your words are a comfort to others. People recognise what you are talking about and it lightens their load just a bit.
I hope all goes well.
Best wishes
Julia
Thank you so much for your support words.
My DS was diagnosed with Ehler Danlos Syndrome Type 3 (Hypermobility) last week.
I read the section on here about how you feel when you get a diagnosis and it was so relevant. I am relieved my concerns were taken seriously and I wasn’t dismissed as a ‘neurotic mother’ but on the other hand I now need to come to terms with both my DS and myself having EDS.
He has a referal to a podiatrist and a physio and I hope we can begin to see some pain reduction for him.
Jules
My 5yo daughter was diagnosed EDS-HM six months ago. She often says that her legs are tired or her ankles are crazy or wobbly. She also says her legs need more food!
It was great to find this page, as we are also having trouble with the school recognising her additional OT requirements – because she looks fine.
Hi Kylie,
Thanks for getting in touch. I will add your words to our descriptive words project. Please feel free to contribute any other bits and pieces along the way. We can’t get together for a cup of tea but we can talk to each other through the website.
I had an email from Michelle O’Sullivan this week. She is an OT specialising in hypermobility conditions and connective tissue dysplasias in Sydney. She has Ehlers Danlos Syndrome and decided to use her OT training and her condition to benefit others. I think there might be some material on her website that you can use when preparing material for schools.
I sigh as I write this because schools can be such hard work when people can’t see the problem. Anyway check out Michelle at hypermobilot.com.au
Again my thanks for getting in touch and please feel free to drop me a line whenever you feel like it. I have a friend with 13 year old twin girls who have EDS – she’s helped me understand some of the challenges. All the best.
Regards
Julia
Thanks Julia – I will check it out and let you know how it goes.