Flexible Joints

[Symptomatic]

It's known which genes are involved in causing the various types of EDS, so it can be tested for that way to some extent. The gene I've been looking into so far has a lot of SNPs where 0-5% of the population has the less common genotypes. So it seems like there's little room for error on that gene, and any abnormalities might be a pretty good indicator of a likely problem.

What gene are you looking at?

 

[Valentijn]

What gene are you looking at?

COL3A1 and TNXB

 

[Allyson]

According to Dr. Rowe approx. 2/3 of adolescents with ME/CFS have demonstrable hypermobility. He believes it is a risk factor for (peripheral) sensitisation which may modulate the effect of other parts of the ME/CFS pathophysiological jigsaw puzzle. I've developed my own theory to cater for (and centre on) this principal as I'm fairly convinced the link is significant

Yes it seems you are right - the joint hypermoblility IS significant John - It is mentioned as being a common symptom in the 2012 International consensus doc. There is a score you can do to eliminate subjectivity - the Beighton Score and also the Brighton Criteria are used to measure it.

CHeers
Ally

 

[Allyson]

Although I don't have EDS, I have had knee dislocations and my elbows over-flex. The later have been spotted by 3 hospital consultants. I have severe pain in all of my joints.

Hi TCP,


you say you don t have EDS but have you been properly tested for it? Over-flexing elbows and knee dislocations make it sound highly likely......Many doctors - even geneticists - know next-to -nothing about EDS and say "you could not have it because it is rare" - so it has become widely under-diagnosed and it becomes a viscious circle.

There is a symptom check list here if you want to look into it further -
http://forum.notcrazy.net/index.php?topic=9571.0

Then you would need to find a KNOWLEDGABLE specialist -....funny it sounds like ME /cfs ....so many docs told me I did not have it - or did not diagnose it - til I researched it myself on the internet and got the Dx confirmed by 2 specialists in the area. There are lots of DS facebook page where you can as for specialists near you but if you are in Britain Prof Rodney Grahame at UCL London is top of the field it seems.

Cheers

Ally

 

[Allyson]

yeah I'm pretty stiff too VeganMonkey! Shocking ATM I used to be much more flexible as a child/adolescent but the older I'm getting the worse it is. I used to be able to bend back backwards...havent tried in a while lol

It is funny when you guys post pics like that then say you are stiff!! I cannot even touch my ankels and have always been really stiff and inflexible - I suppose that is why the scales and Criteria were established for subjective measurement - if you are hypermobile since birth then the bendiness seems totally normal to you .....so it is hard to assess.


Ally

 

[Allyson]

Although I don't have EDS, I have had knee dislocations and my elbows over-flex. The later have been spotted by 3 hospital consultants. I have severe pain in all of my joints.

Also I note you say you have POTS too TCP - that is very common in EDS and some think EDS may be a cause of it.....


Ally