Ehlers-Danlos Syndrome (EDS) Community

Meet, discuss & support other patients or families living with Ehlers-Danlos Syndrome (EDS). Contribute to topics, or just share what's on your mind.

Start a discussion now (you must be signed in)

Conversations tagged Bones, joints, muscles

TaniaLT
moderator

Hydrotherapy for EDS

I've has the first two of a series of Hydrotherapy treatments - gentle exercises in a lovely warm pool, with a one-2-one therapist who is in the pool too.
I've been amazed how long I can stay upright and do the exercises for and the water isn't too hot that I sweat. There is much less pain doing things when in the pool.
I have increased pain at the moment, but I think this is just from using muscles I don't usually. It hasn't made my usual pain worse and the point of it is to strengthen muscles which I can't normally do because I can't stand up long enough and because they hurt.
It's actually such a thrill to be able to do something physical and enjoy it. Has anyone else had Hydro?

Graciela
moderator

Not on a long time. Water made so much force over me, that it was worse than trying to do it out on “land”.
Of course I have to be thankful for my electric wheel-chair, at home I have to walk and the Doc. Asked for 10 minutes straight from my room to the dining room in our flat. The cats think I am out of my mind, but he rather wants me walking here and keeping the muscles, than doing any exercise or therapy.
Away from home, just with wheels, like it or not.
Am happy for you Tania

TaniaLT
moderator

Sadly there are only six sessions, but it may give me confidence to try the local pool, though not on my own.
Next week I finally have my autonomic assessment and an assessment for pre-rehab. Everything at once after such a long wait!
Glad to see you here Graciela! Thanks for your note too. I got an electric chair too for outside! And sometimes round the house if I'm not feeling good.

Graciela
moderator

Well Tania, I’m a goose, so I just get more practice on falling with a bit of charm and hurting the less possible. Although now I know the “unbreakable” girl, has grown and now the woman does brake from time to tiem

Hypermobility and Diet

I recently spent 4 weeks in Thailand, during which I found I had literally no need to take any medication. The transformation was astounding, you would never have known there was anything wrong with me. At home if I skip my meds for even 2 nights I am severely limited physically.

My physio thinks along with the sunshine, something in my diet must have triggered the change. I am about to start the laborious process of restricting various food groups to find out which food (or lack there-of) is responsible.

To help me on my way, does anyone have any foods that either ease or aggravate Joint Hypermobility?

I felt much better when I stopped eating gluten. I have a incomplete coliacia and EDS. And I heard from several person with EDS that it helped a lot, especially for the stomach pain, the fatigue but also for the pain. So related to that you usually eat much less gluten in Thailand.

TaniaLT
moderator

I recently saw a diet for Mast Cell that had restrictions for all the foods that I am sensitive to such as vinegar, tomatoes etc. Many people with EDS have Mast Cell too. I don;thave this diagnosis, though have never been tested for it. I'll try to find it and add it to the community x

There are many great pieces of advice in this article. I notice a change when I eliminate processed sugar from my diet. Certain foods can cause excess inflammation in the body, and those of us with EDS know that inflammation hurts. Another thing I've noticed, especially since I moved farther North in my country, is that cold weather can make me hurt worse than too much activity. On clear and warm days, I sometimes forget to take my pain medications. This isn't even a possibility on cold and rainy days.
My family finds it funny that at 33 years old, I can tell what the weather is like outside, even when I have no way of having seen it yet.

Constant Pain + Stoicism

I have both EDS type 3 (H) and Asperger's Syndrome.
Asperger's is often misunderstood, but that is not the topic of this post.

What I would like to draw attention to is the fact that Asperger's syndrome often causes highly stoic reactions to pain.
Only in the absolute worst pain do I complain.

This has done little to help people understand my pain, weakness and fatigue from EDS, as I appear fine most of the time. They don't understand that the pain was there all along, and that if they were in this much pain, they would probably be close to bedridden.
It is maddening!

Just looking for a little support. I don't know that anyone will have a solution.

TaniaLT
moderator

My son has Asperger's and EDS & POTS and he too only complains when it is really bad. This is frustrating for me as he will say nothing, then storm in, fling himself on my bed and complain, when I could have helped him hours before.
He is only 14.
I have just asked for him to be referred to a paediatric pain management course at the same hospital I am going to have treatment. No one told me about this until I made a point of asking.
Thank you for saying this as you have validated my fears with my son and I will make sure to ask him more often rather than wait for him to tell me.
And just to say, if I was your mother, I really would want to hear that you were hurting so I could help make you feel better. I am sure your wife wants to hear and doesn't want you to be in pain - if my husband was in pain I would want to know.
I know myself that the longer you delay paid meds, the less effective they are. Don't be stoic, sweetheart, let people know so they can understand what you are going through. When you have AS it's hard to talk about how you feel sometimes, I realise. But you said in your bio you're married to the love of your life - as an old married lady, I can tell you that communication is key to a long marriage, so confide in her if you can and you may find you end up even closer. x

I can relate to your pain problems with EDS, as well as your stoicism regarding the pain. I didn't even know that EDS was a condition until I was 28. I am 33 now. It's no secret that many people that have EDS have less of a visible reaction to pain. We just get so used to always being in some level of pain, that it's only the most intense pains that really show, and that is only some of the time.
I'm very glad that you have relatives that know about the syndrome. It's unfortunate that they know from experience, but that's probably a good thing for you. I can't think of many things that would keep siblings as close to one another as this.
The past few years have been very, very long for me. But this last 6 months have been better than those years in many ways. I suppose retirement was a big part of it, but it has shown me that I don't have to be in severe pain all of my life, and that I can control it to an extent. Even though my joints have gotten more and more loose as I've aged, I've also learned more about joint protection, and about my personal limits. It took a long while for that to sink in, as I expect it would for anyone. But I'm sure that in time, if you can discipline yourself, you may experience something similar.
Just be sure to remind yourself, as often as you can, of all of the things that you have going for you in life. I know it can be hard sometimes, but it's worth it. I'm sure there are many people in this world that care about you, and that want the best for you. Sometimes we just have to remind ourselves of that.

Contact search

Hello,
I am looking for contacts for SEDIII patients, living in Switzerland, to exchange experiences, information and medical journey.
Outside of associations
Thank you to who would like to help me and those who have already done it, for listening and giving me advice.
Thank you in advance.

Notice: This text content has been translated automatically by a third-party service.

It's still me: Ariane P. French version, or Arianna, Italian version ! :)

lol...proof that I am not forgetting you !!! but I am a little disappointed for you because I thought I had found another Swiss for you :) Happy New Year 2014

C'est pas grave, merci pour ta sollicitude. De toute façon j'ai fait mon petit bout de chemin jusqu'ici toute seule....je peux continuer encore un petit bout! :-) Du moins , j'espère. ;-)
Sereine année à toi.

TaniaLT
moderator

EDS & Asperger's/Autism

I just took my recently-diagnosed EDS son, Giorgio, to see a specialist paediatrician, Dr Nelly Ninis, at St Mary's Hospital in London yesterday.
She told me that they were seeing an increasing number of young patients that have both EDS and Autism Spectrum Disorders. This was also mentioned to me a while ago by Lara at EDS-UK.
Dr Ninis, who has a particular interest in EDS & POTS is thinking there may be some sort of connection, maybe genetic.
Does anyone have any other anecdotal evidence of this?

yes, I have autism and EDS and been told similar... that EDS would reduce the integrity of the MEMBRANE that is the blood brain barrier... so those with this impairment might be more brain effected by things like undigested foods and viruses directly crossing into the brain, especially if also immune deficient ... AND I was told that COLLAGEN has a direct relationship to immune system modulation and regulation... that it is not just connective tissue, that it plays an active role at a cellular level, directly impacting immune function... so those with autism, EDS and immune deficiencies, the three may well be related for them... and yes, I also have degenerative spinal stenosis... dx'd in 2012, aged 48. I now have peripheral neuropathy effecting both legs... seeing a neurologist this Jan about it. All the best to you.

TaniaLT
moderator

I suppose if you think about it holistically, it is no surprise that when you have one vulnerability such as a collagen disorder, it has an implication for every organ and function of the body simply because almost everything in our body is reliant on collagen!

I have aspergers as well as EDS,though whether thats coincidence or genetics I don't know

martacampabadal
moderator

Exercise in children with joint hypermobility syndrome and knee pain

An excellent piece of new research published on 'Exercise in children with joint hypermobility and knee pain' is now available to read here.

A positive progression in understanding what types of exercise can be beneficial for children with joint Hypermobility.

Click here to read the research:
https://www.rareconnect.org/en/community/e...

Mother of Two needs help!

Hi Everyone

I am 24 and I am in the early stages of learning more about my EDS

Like most of you my EDS started from birth.

I have suffered endless dislocations of every joint in my body. I have had two useless knee surgeries that have only made thing worse.

I am currently experiencing more joint pain then usual which really sucks. No pain medication seems to be working.

As of right now I am seeking medication attention to figure out what type of EDS I have.

My have other medical conditions which has never been related to my joint issue but now I feel like there is a link.

I am a mother of two (one is 5 years old and the other is almost 2 years old)

I need tips on how to take care of my kids, my home and myself. I am 24 years old and I feel like I am 80!

The people in my life get frustrated because I can't do what I should be able to do and I don't think anyone takes me seriously....

My question is,,,, can things get better or is it something that over time gets worse?

Sorta feel lost, confused and alone cause no one else seems to understand and I haven't met anyone else like myself... Help?

Thank guys :)

I hate nothing more then not knowing and I would spend endless hours researching. It was almost like every time I would have a serious injury the pain would fuel my power to know why. Also its my goal to change things for my daughter hopefully she will be getting braces for her ankles to prevent from her rolling them all the time. Just wish the health care in Canada wouldnt take their sweet time lol

Graciela
moderator

So glad your daughter gets the braces, hope that can help her to stop hurting and rolling all the time; because she is much too young to have old people troubles. In the other hand, as the great mother you are, if you see she feels better you also will feel better and even your pain might be reduced, as emotions also take part on the way you feel.

Keep us informed, please

Hope the braces help your daughter;mine do help me a fair bit,though I'm still waiting for ones that bend.My advice,if you can, is to get two sets;in summer they need changing a lot,especially the elastane parts,hope this helps