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Ehlers-Danlos Syndrome User Group
generally feeling rotten!
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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generally feeling rotten!

Hi.
have always suffered aches and pain, but only last week, at the grand age of 42 i was diagnosed by the geneticist with EDS. just after a bit more info really, if anyone can help.
Have good days, and of course bad days. my knees slip and hurt. have constant subluxation of one shoulder. and my back has just had it!!!!!!!!!!! i have also a bit of osteoarthritis here and there! i am sure that there are many edsers with the condition worse than i have it.
i was wondering about headaches. i seem to constantly have headaches...and just feel rotten in general - is there a link with eds and this???? also, in some info it says that eds is not degenerative condition.... and that things get worse due to age etc. is this true...? i have flare ups it seems, followed by not such bad times. has anyone with this condition gradually got worse, as i feel that i am. another thing is ribs. when i drive it feels like my ribs are turning under and digging in. im afraid of 'adult' hugs as my ribs feel fragile.
that is the end of my very disjointed (pardon the pun!) questions. i hope to get some answers. thank you. kerry :)
4 Comments
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620923_tn?1393294254

  Hi and welcome to the EDS group.

   .I was 48 when I was dx'd with EDS and it was along with Chiari malformation, cervical spinal stinosis, tethered cord and a few other not so much fun things....

But I can answer ur question on the HA's and EDS, yes, they can be related to eds as eds can cause cerviocranial instability, something else I also have and it is this instability that causes the head to bobble around and cause the HA....

Did ur geneticist tell u which type of EDS u have? 3 ?

I have an issue with my ribs as well,...I feel it on my left but all xrays show  an abnormality on my right,...I have yet to get to a EDS dr as I have to go out of state and I can not drive due to my other conditions....

Look at the videos posted at the top of this forum...the links will take u to many by Dr Driscoll and they r very informative.
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Thank you for your welcome and your answer.
yes, Dx type 3. shall have a look at vids :)
Kerry
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1903798_tn?1333908888
Kerry I am and EDS 3 girl too and also have chiari.  Have you had an MRI for your headaches?  I am on Tramadol and Soma for the EDS pain yet I am always in some sort of discomfort regardless of what I do.  I agree with Selma those videos are great and I have learned so much along the way from Selma and this forum. Hugs and prayers hang in there:)
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4353362_tn?1353268935
Hi.  Early days since diagnosis. I have to wait until January to have a heart scan,  other than that... nothing else in place just yet! referal to pain clinic... but living in England means waiting forever for anything t happen. I shall push to see what else needs doing. thank you for your response :)) x
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