281?1253674568
Ehlers-Danlos Syndrome User Group
Newly diagnosed with HMS after 13years!but whats EDS?
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
153 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Newly diagnosed with HMS after 13years!but whats EDS?

Hi there,

Just before Christmas i was diagnosed with hypermobility syndrome, and after 13 years of looking for answers i finally have a label!! Anyway i'm just abit confused what the difference is between HMS and EDS??? My main pain is in my hips/lower back/bum shoulders/neck knees and ankles but mainly in my hips. I am on Gabapentin and co-codamols at the moment but have been on morphine patches amoung many more. At the moment they seem to be taking the edge off without too many side effects, but as you know if you are a sufferer from HMS it's always constant pain!  If you have any comments it would be great to hear from you!! Thanks so much, Jane_pain x
8 Comments
Blank
620923_tn?1393294254

Hi and welcome to the EDS Group.

EDS and HMS are similar in that both have some joint hypermobility involved....however not all EDS types include hypermobile joints...but it is a connective tissue disorder and can affect the person in many different ways.There is a condition called Join Hypermoility that is set apart from EDS a little more then HMS is.....

There are a few videos by a Dr that also has EDS and she does a great job explaining the 2...

From others that took gabapentin it may work at first , but tends to wear off, so do not be surprised if this happens...since we r all different u may have a different experience with the med.

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

The Hypermobility Syndrome is said to exist when symptoms are produced, a state of affairs that may affect only a minority of hypermobile people. It is probably more correct to refer to Hypermobility Syndromes (in the plural) as a family of related genetically-based conditions which differ not only in the particular protein affected, but also in the degree of difference of formation. Thus at one end of the spectrum are the diseases with the potentially serious complications such as Marfans Syndrome or Ehlers-Danlos Syndrome Vascular Type (formally EDS IV). At the other end are what is now called on good evidence Benign Joint Hypermobility Syndrome (BJHS) and Ehlers-Danlos Hypermobile Type (formerly EDS III), which may be one and the same. These may cause troublesome and persistent problems, but do not affect the vital organs and thus do not pose a serious threat to life.
Blank
1427565_tn?1327433809
Hi thankyou for your in depth response!

I'm trying my best to understand all these differnt types of HMS but i must admit it is all quite confusing. I think i just have joint hypermobility as this is where my main pain is, in my joints (worsed are mainly hips, back/neck, knees). I do have other general problems such as i always feel tired, stumble, headaches, my hips use to dislocate alot etc etc, but i tend to only mention my "main" pain in my hips/back/neck rather than all the other (not as bad) pain that comes with it! (Because everything pretty much aches and hurts daily i don't want to moan or mention about everything else haha.)

I will definately look into it more and ask my doctor some questions about how i know what type i have etc, so thankyou!

I am also talking about starting a family in the near future but i am so so scared! Have you any information on this that might help at all, or could you point me in the right direction perhaps? It will mean coming off my tablets altogether for about two years basically, and the birth part, well i can't even think what it will do to my hips!

Thank you so much again, any info is good info as i am new to this syndrome! x
Blank
620923_tn?1393294254

  Do check ur levels of vitamin D, B12, magnesium and potassium...these can help how u feel and heal depending on what is going on in ur life.....so do keep an eye on these.

Well, I would suggest u go get a full check up to see just what all u have...HMS< JHS< or EDS...as that one can affect us in so many different ways depending on the type u r dx'd with.

See a rheumatoid Dr, they usually send u to a geneticist and go from there....

I have EDS and had a child, I had no idea I had it or Chiari at the time...and it was not easy....I was in so much pain....but  if u go to a Dr now and find out just what u have u may be able to have a family....keep in mind, u may...just may pass this along to ur child....so talk to the Dr to find out what type u have , look at family history as it will also help u understand where urs comes from.

  Hope this helps

  "selma"
Blank
1427565_tn?1327433809
How do i check the vitamin d levels etc, is it a blood test? My GP/Doctor diagnosed me and from what i have read and from how i feel it can't be anything else. As i have been waiting for this for about 13years for a reason why i am in so much pain i'm scared of stepping foot in the doctor's again- just incase they turn around and say "oh sorry made a mistake!" then all my securities will be shattered and i will be in that dark place again with no answers or hope!! I know i have HMS from what i have researched, and also my brother, mum and other family members all have problems with back, shoulders, knees etc however my brother isn't in as much pain, hes able to work etc...so it's definetly in my family that's for sure. However i am still scared about going to my doctors and asking more questions...

When you were pregnant did you have to stop all medication etc, and did you have a natural birth?(if you dont mind me asking, sorry.)

Thanks for replying to me! xx
Blank
620923_tn?1393294254


  I did have a natural birth...was not on meds at the time as I was not DX'd but went to many Drs and was feeling the same as u, but not going does not help u feel better or find out what it is...and yes, u need ur Dr to do a blood test to check ur Vit D levels as well as ur B12 and magnesium and potassium....

It may be u need to find a different Dr, one u r more comfortable with....

I do not mind ne questions... : )
Blank
1427565_tn?1327433809
Yeh i know i do agree, i'm just enjoying having a label and im scared of loosing it haha (even though i know it's what i have!!) But i agree i will book in the doctor's and get my vit etc levels checked thanks for that! Anything else you think i should mention as a newly diagnosed person haha, i'm going to write my questions down before i go so i remember eveything (it takes three or more weeks to see my doctor!)

This is the first doctor i feel the most comfortable with, i have had so many bad experiences with doctors not believing me etc, but i wont say i trust him as i have had too many bad experiences! Are u in the UK by the way? Just sometimes meds and terms, names etc can sometimes be different.

Thanks :)
Blank
1168938_tn?1327157832
Professor Bird and Professor Graham say Hypermobility Syndrome and EDS 3 are one and the same disorder.
Blank
1427565_tn?1327433809
Yes i know but then some people say its totally different i dont know! Maybe depending on where you live in the world it may change?! I live in the northwest England Blackpool so maybe it's different in say America!? My main pain is in my joints but i do bruise really easy have suffered from depression, most of my muscles ache daily, i get head aches (and thats just a quick example) I feel like my grandma and im only 25 ha ha! Are you on the other forum as well you two? It a charity called HMSA just google it there is alot of info on there to....xx
Blank
Recent Activity
620923_tn?1393294254
Blank
selmaS commented on Spotjeff's status
Apr 15
620923_tn?1393294254
Blank
soccero, and selmaS commented on soccero's status
Apr 15
979826_tn?1389039958
Blank
soccero :( Comment
Apr 14
MedHelp Health Answers