Is there a difference between hypermobility syndrome and ehler danlos syndrome?

[missteal]

I have had a formal diagnosis of hypermobility syndrome but have recently been told by some people that this is the same as EDS hypermobility type and by some that it's different. I do know that I have lots of gastric problems due to my HMS and I bruise very easily. Is there a difference between the two conditions? I know joint hypermobility is different as thats basically just being double jointed but it seems as though EDS -hypermobility type and HMS are either very similar or the same....can anyone enlighten me? thanks in advance x

[ClassicalGirl Administrator]

Hi missteal,

I'm probably not the best person to answer your question as a) I have classical EDS rather than the hypermobile EDS type and b) I am not medically trained, but I will have a go!

As I understand it, it is possible to have joint hypermobility without necessarily having EDS, but according to the NHS website in most cases where a patient has joint hypermobility, they also have the hypermobile type of EDS.

See nhs.uk/conditions/Joint-hyp...

However, joint hypermobility can also be associated with other disorders such as Marfan Syndrome, as suggested on Hypermobility Syndrome Association website.

See hypermobility.org/hypermobi...

I think the problem with the hypermobile EDS type is that currently doctors do not know what the genetic defect is that causes it. As such they diagnose it on the basis of symptoms rather than a genetic test.

Joint hypermobility is diagnosed according to the Beighton criteria, ie the doctor will ask you to bend some of your joints and the 'bendiness' (for want of a better word) of your joints will show whether you are hypermobile.

Easy bruising and gastric problems are common symptoms of EDS, but not necessarily HMS, so it sounds like you might have EDS.

For more information you could have a look at the EDS UK website:

ehlers-danlos.org/

I hope this helps, but perhaps you could speak to your doctor again and s/he might be able to clarify further.

Classical Girl

[missteal]

Thank you so much for your reply. I have been told by my physio that my gastric problems are due to my HMS so it does sound to me like it's a bit of a grey area as there is a difference between joint hypermobility and hypermobility syndrome. I'm thinking HMS and HEDS are the same thing and joint hypermobility is just the joints. I've been trying to get re-referred to my reuatologist as I haven't seen him since just after I had my son 5 years ago.

I was diagnosed with the beighton score when I was 15 by a reumatologist but that was it, just got diagnosed and not told anything about the condition. It's only now that it's really affecting my life that the drs seem to be listening to me.

Thanks again for your reply, K x

[trekster22 in reply to missteal]

You can have IBS, gastroparesis and other stomach or bowel problems relating to your EDS. As collagen is in almost every bodily system including the bowels you can find multiple organs can be affected by EDS.

Pleased you feel listened to, im trying to get another appointment at Stanmore hospital which is one specialist rehabilitation program for EDS/HMS.

[maryday9 in reply to trekster22]

Hi Can you tell me where Stanmore hospital is and what exactly is this rehabilitation program ,i have been told my daughters EDS will only get worse over the years .rehabilitation means to cure treatment ,healing ,remedy . for which ive been told there is no cure no remedy no healing this condition .

[trekster22 in reply to maryday9]

There is no cure for EDS but the rehabilitation program can help you manage your EDS. It involves tips on pacing, exercise, sitting positions and stretches. Stanmore is in middlesex.

rnoh.nhs.uk/home/contact-us

[Springsong]

Hi, Hypermobility Syndrome & EDS hypermobility type are very much alike to one another in their symptoms so they are often classed as being the same. Typically the one difference I have been told is that people with EDS hypermobility type are less susceptable to anaesthetics (you can receive the maximum dosage yet still feel what is happening) whilst people with HMS aren't necessarily. Other than that there is little to no difference (both experience painful joints, both bruise easily, both prone to injuries such as sprains/ruptured ligaments).

[Hidden]

My understanding is that 'widespread joint hypermobility' is diagnosed with the beighton score and indicates bendyness but nothing else. Hypermobility syndrome, is the same as EDS 3, and is diagnosed with the Brighton criteria, which includes looking at the beighton score.

I'm a physio and I have EDS 3 / HMS so I hope I've got it right.

[trekster22]

Personally I feel as they cant find the genes for either EDS3 or HMS they are basically the same disabilities. They have the same symptoms and many of the professionals in the field believe they are one and the same.

You can have a mixture of more than 1 type of EDS. I have type 3 and symptoms of types 5 or 6 (I had club feet as a child).

[missdizzy2015]

I was in a course with some EDS doctors some years ago and they told that the difference was this:

Hypermobility joints = very common, a lot of people have it without other spesific problems or pain.

Hypermobility joints syndrome = generalized hypermobility in joints with cronic pain

EDS Hypermobility type = generalized hypermobility in joints with cronic pain AND trouble with skin signs, stretch marks, scars, difficult healing, and some trouble with internal organs.

[maryday9 in reply to missdizzy2015]

Hi My 19 year old daughter was diagnosed with EDS type 3 two years ago however she has had irritable bowl syndrome amd easily tearing skin all her life .it turns out it is all part of EDS she also has chronic fatigue muscle and joint pain .

Sometimes i think the symtoms take over all our lives she has more bad days than good spending a lot of time resting .

being diagnosed meant she can get a mobility vehicle and have a little bit of independance .

[maryday9]

Hi Hypermobile is merely that it means you are a bendy person EDs carries its own issues ,pain in muscles without much strain muscles that dont repair easily ,skin that tears ,issues with stomach/gastric and bowls ovarian cysts ,chronicfatigue . the list goes on at her age she should be able to go dancing for hours if she has time out with friend she cant move for days

[Bjazzy]

Just let you know, I have hyper mobility, and autoimmune (Rheumatoid arthritis) I'm 64 and doing fine. My mom had hyper mobility too and so do my kids, we don't seem to have any other issues.

[Bjazzy]

There is some overlap, but there are several typrs. Not everyone with hyper mobility has the other symptoms.