Ehlers-Danlos Syndrome / Hypermobility Syndrome (in humans)

[Jem]

So, I have Hypermobility syndrome, but I have also seen many others on this site who have expressed they too have have it so I'm reaching out to you. I've done a lot of research on the subject but I have a question that I can't find on my own and was hoping that someone may know the answer.

I was reading about Rhabdomyolysis. It is where (in a nut shell) muscle damage / tissue death causes blood toxicity leading to kidney failure. So my question is, are those with hypermobility syndrome at a higher risk of this? And due to the hypermobility and the muscle and tissue tearing that unavoidably happens (micro tearing) does that mean that LONG TERM, we are more prone to kidney issues due to the chronic over taxing of the kidneys having to continuously process the toxic intracellular components of the "dead tissue"? Have any of you been told to "keep an eye" on your kidney function?

 

[Katie M]

My hypermobility is caused by Russell-Silver syndrome rather than Ehlers-Danlos. I've had kidney stones, but I've never been warned explicitly about other potential kidney problems. Now you've got me wondering

 

[Jem]

Katie M If you don't mind me asking...what is it about your condition that causes the hypermobility? For Ehlers-Danlos, it's basically weak connective tissue due to improper collagen production. The tissue itself is weak and over stretchy as it's missing a few "ingredients" to keep it strong. That then can lead to the overuse of muscles to basically take over for the connective tissue that can not properly support the joints....it's the over use of this muscle and weak connective tissue that will lead to chronic micro-tearing and in more serious instances, trauma and/or injury of the connective and soft tissues.

If I understand correctly, Russell-Silver is where the body does not grow properly, but do you also have the weak connective tissue or it is more that your joints just did not form properly leading to instability?
If I'm stepping over the line in asking just tell me "where to go"...

I also had kidney stones before....

 

[Katie M]

I'm not *exactly* sure, but I do have skeletal asymmetry from Russell-Silver. I suspect that led to weakened ligaments. I've been able to dislocate my shoulders and hips at will since I was a kid.

 

[Elphaba09]

My 26-year-old daughter-in-law has Ehlers-Danlos Syndrome, along with other issues. I am not sure what type offhand. She also has Stage 3 kidney disease, although I cannot say for certain if it is caused by her EDS because she has other health issues. She is on the transplant list and at some point will be starting dialysis.

I sent her a text and asked her about it.

 

[Jem]

My 26-year-old daughter-in-law has Ehlers-Danlos Syndrome, along with other issues. I am not sure what type offhand. She also has Stage 3 kidney disease, although I cannot say for certain if it is caused by her EDS because she has other health issues. She is on the transplant list and at some point will be starting dialysis.

I sent her a text and asked her about it.

Oh wow, I wish her all the best...

I must say that I am older than her, and as far as I know don't present with any kidney issues, however, with hypermobility, pain medication is part of my life...nothing strong yet, but I'm just thinking, between the soft tissue damage (if it does affect the kidneys) coupled with pain meds (almost daily) I just want to be careful as to what can come next...
Thank you for responding.

 

[Elphaba09]

Thank you. She and my son have been together since high school. Technically, they are "just" engaged, but I still call her my daughter-in-law.

She said that she has Nephrotic Syndrome accompanied by tumors on her kidneys. She has a high likelihood of getting certain types of cancer because of it. She has taken Cytoxan for it, which made her infertile. The doctors said that they are not completely certain of the cause, but that her EDS likely has, at the very least, exacerbated the condition.

 

[Tik cat's mum]

My daughter has EDS hypermobilty as far as I know she hasn't been told to look out for kidney problems due to the EDS. But does have regular blood checks done to look for problems with her kidneys due to the pain medication she's on. But I definitely get your thinking, it's so hard to find information on this. We found out most of what we know from the Internet and EDS groups online.

 

[Jem]

But I definitely get your thinking, it's so hard to find information on this. We found out most of what we know from the Internet and EDS groups online.

Same here. I wasn't even given a proper diagnosis. I was simply told by the doctor that "You just have very lax ligaments and tendons...but there's nothing we can do about it. Be sure to wear braces if you do any physical activity." At the time I went in primarily due to the pain and joint instability in my knees, I was about 16. It wasn't until I became an adult, studying in the health care field that I figured out what I have has an actual name and sometimes significant consequences. I've even done things thinking it would help, when in actuality it's probably made things worse...so frustrating, as I might have not been as bad as I am now if I knew what the deal was with EDS at a young age, and could have done things differently.

 

[Tik cat's mum]

Same here. I wasn't even given a proper diagnosis. I was simply told by the doctor that "You just have very lax ligaments and tendons...but there's nothing we can do about it. Be sure to wear braces if you do any physical activity." At the time I went in primarily due to the pain and joint instability in my knees, I was about 16. It wasn't until I became an adult, studying in the health care field that I figured out what I have has an actual name and sometimes significant consequences. I've even done things thinking it would help, when in actuality it's probably made things worse...so frustrating, as I might have not been as bad as I am now if I knew what the deal was with EDS at a young age, and could have done things differently.

What you've said sounds so much like my daughter's experience. She was always flexible but in her teens she would just have her knees pop and fall over. She got pregnant young with her first only 16 and was told she had SPD. She had two more children in her 20s and each pregnancy was worse for her. On her third child she was unable to walk hardly at the end. The doctors spent 5 years telling her your pelvis will go back in place. She was sent to physio that made her worse. We now know you need someone who specialises in EDS. Eventually she asked her doctor do you think I might have this, and he said oh my gosh yes everything fits. She was so relieved that she cried because she felt no one would listen and seemed to think that she was making up how unstable her joints were and the pain she was in. Luckily now her rumertolagest now is specialist and has helped her so much dealing with this and referring her to the right physio's but if she had known earlier there's so much she wouldn't of done. I feel your frustration doctors GP's just don't seem to know about EDS. And they are the people that you have to see first.

 

[aliceneko]

I have DI George Syndrome which is the cause of my hypermobility. I was born with the condition, but was only diagnosed when I was 15. I can't do much physical activity at all apart from swimming and walking (even with walking, I can't go very far), and have a disabled pass on public transport and parking. I have autism as well as various mental health conditions which are a result of this too.

 

[Jem]

She was sent to physio that made her worse.

I don't suppose you remember which treatments/exercises she did that made things worse do you? I'm currently trying to research what I can do for my pelvic floor muscles and pelvis and feel kinda stuck as to where I should start. I won't go into details as to what's going on "down there" as I'm sure it would be TMI but knowing what NOT to do would be a great start.

 

[Tik cat's mum]

I don't suppose you remember which treatments/exercises she did that made things worse do you? I'm currently trying to research what I can do for my pelvic floor muscles and pelvis and feel kinda stuck as to where I should start. I won't go into details as to what's going on "down there" as I'm sure it would be TMI but knowing what NOT to do would be a great start.

For my daughter it was mainly her first physio told her to push herself, and had her doing way too much which made her joints more unstable. You have to get the balance of exercise right because even though you have to strengthen your muscles to help keep the joints stable, too much can cause problems listening to your body is huge.My daughter is a huge fan of the pelvic floor excersize they tell all new mums to do after childbirth. The one's you can do anywhere. she prolapsed after her third child it was those that got her back to normal down their. So I'd start there. I really hope you can find a physio who knows about EDS, they work wonders. Hope this helps good luck.