Ehlers Danlos OR joint Hypermobility Syndrome

[helsbells]

I have been meaning to discuss this for a while. I wanted to because I have seen a thread talk about this before and a lot of people will google it and assume its not a problem. I am diagnosed with Ehlers Danlos III, anybody who thinks they are "double jointed" or have a lot of trouble with dislocations, joint stability. My brain is pretty bad so I will do my best. I didn't know I was "hypermobile" until an osteopath said my back was curved at the top (kyphosis?) and overly arched at the base making it weak (ie when I lie flat with my knees raised the base still doesn't go flat to the floor) and that I had got away with it because I was hypermobile in my hips - I actually think left side disclocates. then a few years later and quite by chance I got diagnosed. The explanation it is an inherited condition where you are born with faulty collagen (so have too much elastin i think?) The trouble is if you google it it seems primarily a joint problem and although I knew i had some increased suppleness (although it actually isn't being supple at all but about having no collagen support) if I had googled and seen some of those crazy postures people people could get in would have counted myself out. Well apparently I do have it, the point being collagen is required through out our bodies not just in our joint. In the collagen sheath that surrounds our blood vessels - ergo less support on rising leading to venous pooling, increased likelihood of pots, there is a much higher incidence of people with this suffering from phobias and panic attacks and is being increasing found in gastric problems and people with fatigue. I am quite flat footed with a degree of foot pain also. I wonder if there are other people here with the diagnosis or if if anyone wants to know more feel free to ask. hope this is helpful, aps if it makes no sense:Retro smile:

 

[helsbells]

Sorry I can see that EDS has been discussed before but I think my rather muffled point is I wouldn't have myself an obvious candidate for having it. I still think I have "ME" but think of this as a genetic susceptibilty towards developing certain problems.

 

[_Kim_]

Sorry I can see that EDS has been discussed before but I think my rather muffled point is I wouldn't have myself an obvious candidate for having it. I still think I have "ME" but think of this as a genetic susceptibility towards developing certain problems.

Hi helsbells, thanks for bringing this up again. I'm curious to know if those with hypermobility are more genetically susceptible to developing ME/CFS. We included several questions related to this on the XMRV+ survey to try and find out.

Hypermobility and EDS have been of clinical interest for me for many years. Years ago, I started noticing that my clients with joint laxity seemed to have a higher incidence of other problems like Mitral valve prolapse, pelvic organ prolapse, diverticulosis, problems with swallowing, and TMJ instability/pain.

The interesting thing to me is that of the hundreds of clients I've worked with who have Hypermobility Syndrome (and often one or more of those co-conditions) - none of them (to my knowledge) have or had ME/CFS. Most are in good health and are very active. In fact, this groups tells me that regular exercise, including some light weight training, is probably the thing that helps the most (other than my treatment ).

A few years ago, I searched the literature to see if others had reported the connection between these conditions and didn't find much, but I did save a few articles. There may be newer stuff out there - these were saved in 2007.
[SIZE=-1]
Here's a one page Medscape article: [/SIZE]
Joint hypermobility syndrome: the most frequent cause of pain in rheumatological practice?

A review article:
The genetic basis of the joint hypermobility syndromes [SIZE=-1]

From the APA, 1998 -
Association Between Joint Hypermobility Syndrome and Panic Disorder
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In summary, we observed a strong association between panic disorder and agoraphobia and joint hypermobility syndrome...Whether joint hypermobility

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[SIZE=-1]syndrome is in any way associated with neurotransmitter dysfunction, autonomic dysregulation, or a physical genetic locus remains to be elucidated.[/SIZE]

This was published in 2001. I wonder how much the UK rheumies' attitudes have changed since then :
British consultant rheumatologists' perceptions about the hypermobility syndrome: a national survey

Three hundred and nineteen UK-based consultant rheumatologists, members of the British Society for Rheumatology (a response rate of 76%), responded to a questionnaire concerning their perceptions of the (benign joint) hypermobility syndrome (HMS). The questions were wide-ranging and covered the nature of the condition, its clinic prevalence, criteria for diagnosis, the efficacy of chosen treatments, the impact of the syndrome on affected individuals and the contribution that it makes to the overall burden of rheumatic disease morbidity. Ninety-two per cent of the respondents believed in the HMS as a distinct clinical entity but only 39% accepted it as a distinct pathological entity. Only 42% were prepared to comment on whether the HMS and EhlersDanlos syndrome, hypermobility type (formerly EDS type III) were one and the same entity. There was striking variability in estimated clinic prevalence and no consensus about the diagnostic criteria being used. There was little enthusiasm for treatments currently available. Nearly one-half of the respondents were sceptical about a significant impact of the HMS on people's lives and three-quarters about a significant contribution to the overall burden of rheumatic disease. There was little sign of awareness of findings in recent published studies. It seems unlikely, therefore, that evidence-based medicine is being practised in this area of rheumatology. An unexpected finding was a refreshing enthusiasm for joining regional interest groups on hypermobility (25% of all UK consultants expressed interest).

 

[helsbells]

Hi Kim :Retro smile:

Thanks for the info! Incidentally I was diagnosed by someone who co authored one of those papers and by someone who I believe has had a lot of papers published on the subject. What treatment do you do (sorry if you said - I am on the writing bit now and can't see if I try and do sometihng clever this will disapear)

I have a theory though, as I have said i wouldn't have gone through a rheumy at all - joint pain is not something I class highly on my symptoms. Perhaps if I wasn't fatigued and walked more it would be. It was quite by accident I got diagnosed through a gastro who was finding people with quite serious probs but whith no obvious cause he was finding hypermobility, likewise dysautonomia. It is genetic, 50% chance with one parent with a tendency to go for girls. The other family members who have this do not not have anything like the health problems I have. It is difficult to assess completely as one family members exhibits quite strong aspie traits which I believe come over as fatigue, withrawing but still can go hols, walks distances etc - I struggle to leave my home. I have said my cons tho it cannot account for everything, a ton of immunolical stuff plus my brain fog and cognition is dire (Eg the true thing to say is I could have read what you did but really wouldn't remember but cannot get over how embarassing and self esteem lowering that is even here of all places!!) but weirdly it seems easier for people to take seriously than ME :Retro mad: This is unjust but useful.

He himself said many people can be hypermobile and remain asymptomatic but when it is expressed it can be in far more complex way than people understnad.

 

[srmny]

I was diagnosed with hypermobility by a physiatrist years ago. He also diagnosed me with myofascial pain syndrome. Of course, myofascial pain syndrome became fibromyalgia which became CFS. My mother was also hypermobile as a child and has symptoms of fibromyalgia. Getting older has made me less hypermobile but I still prefer to sit with my legs tucked under me and can always shock a doctor when he asks me to touch my toes and I place my palms flat on the floor behind my feet (I am 57). Both my mom and I have joint disease as well. My CFS doctor, and my pain doctor, have both told me never to show a doctor that I can touch the floor with my palms. Apparently, most MDs think that it is a sign of being healthy? I do have severe pain in my neck and arms which began with 3 car accidents and whiplash/head injuries. I also have problems with dysautonomia - basically can't stand in line syndrome.

 

[helsbells]

Was that because of panic attacks/phobias etc, he sounds quite enlightened esp if this was a long time ago - in Uk (not sure where you are) I have been seen by rheumys for other reasons who have not diagnosed it and I believe they are the main route here. i actually can't touch my toes at all, my back is in such bad shape and I'm so tall but my mum who is 83 still puts her palms to the floor but it doesn't look good - I mean it doesn't look supple or limber just like someone with a hinge at the base of her spine
I still hyper flex - we are not supposed to but they are just habbits for me too, also sit with with legs under me to the point I get dead leg LOL All those car accidents - did you ever look into whether you had a chiari?

 

[taytortots77]

Pending

I've been hyper mobile for years now and I always thought it was just another thing that made me stand out. Recently though, I've been having migraines, continuous "growing pains", and relentless back and shoulder pains. When I sit or stand quickly my eyes go black for a couple of seconds and I've always had serious trouble sleeping. It alway takes me an hour and a half to two hours to fall asleep and even then I wake up about five times in the night. I have pointed ears, but I never really saw them as anything other than an enigma. When I happened across Ehlers-Danlos Syndrome while researching a school paper on hypermobility, the symptoms eerily resembled what I was (and still am) experiencing. I'm extremely impatient and I always have to be moving or else I feel like I'm drained of energy. I was considering having an examination, but I'm still not entirely sure. Are there any real dangers to Ehlers-Danlos Syndrome?

 

[Calathea]

I have a first cousin (our mothers are sisters) with Ehlers Danlos and Reflex Sympathetic Dystrophy. She is very severely disabled - unable to stand, needs 24 hour care, in constant extreme pain, constantly in and out of hospital - and I believe it's knocked a few decades off her life expectancy. She's managed to accomplish, and continues to accomplish, an amazing amount despite this. At one point I was told that she also has ME, but to be honest, either it's a misdiagnosis or she has ME to a very small extent, because she spent years travelling all over the world to lecture at pain conferences and compete in table-tennis at the Paralympic level, while studying for a degree and setting up two international pain organisations, and I think the fatigue and PEM from any substantial degree of ME would prevent that sort of thing. There's also been some question about her half-brother (mother's side) having ME, but I never got the full story on that, and I'm no longer in touch with her family. I don't think he ever had to give up work that I know of.

 

[Sushi]

Are there any real dangers to Ehlers-Danlos Syndrome?

There are some real dangers with certain types of EDs, but most of us don't have those types. With hypermobility, you are likely to get some pain, some spinal disc problems, stretched ligaments and tendons, sometimes mitral valve prolapse and leg vein valve prolapses. Some of this can be managed by strengthening core muscles, but it sounds like you have orthostatic intolerance also and that is harder to deal with.

I also have EDs and OI. Unfortunately most doctors are not likely to recognize it and you can learn more and check your symptoms by reading on the many Ehlers-Danlos sites.

If you want to contact me on chat, feel free.

Best wishes,
Sushi

 

[Esther12]

@ taytortots77: To me, it sounds like it might be worth getting yourself checked out. If you do have it, then a diagnosis might help you to find ways of improving some of your (perhaps) related symptoms. Good luck.

 

[Whit]

My sister has Ehlers Danlos supposedly though not too severely. She had to stop Ballet (her dream) because she kept getting injured. My father and I are both overly flexible though it's never been diagnosed. I have always had foot (arch) problems because my feet are overly flexible and my arch collapses.

My sister also has a lot of other health problems that are similar to mild CFS like she gets sick all the time, gets headaches, doesn't sleep well, is tired all the time. But she's very active, doesn't get post exercise fatigue, and it is likely at least partially stress or depression related in her case. Not mine though there's no mental link in my case no matter how hard I try to find one ;-)

 

[sandgroper]

It took ages for me to get diagnosed. I have had severe ME and it was getting worse and the symptoms of dysautonomia were progressing. So I went to a rheumatologist and as a consequence got sent to a cardiologist. The drs mainly being worried about hte vascular type and seemingly unaware of all the potential problems of the hypermobility type. It took years to recover from pointless testing and then get another referral a rheumatologist who has an interes in EDS. He was able to dx it but was completely clueless about ME. I thought the dx would make it easier to get the dy dx but alas it was not to be. Now I have a HR monitor and have been back to the origianl rheumie and he has agreed that I have POTS and we are looking at treating that. WHich was the whole point of getting dx. The pain side I have dealth with for years with combination of physio and chiro. Its the POTS and the ME that makes living difficult. I am mostly housebound and laying flat.

And yes, it would be great to exercise. I would love to be well enough to do that and realise now I am just considered deondtioned. WIth some treatment I hoep to get back to moving more. Its hard though as all treatments are experimental.

Sand

 

[Esther12]

Good luck sand. I hope things improve for you soon.

 

[Flashster]

Just a quickie - I appear to be in the process of being diagnosed with EDS type III. I've had M.E. for 10 years, but my swallowing problems got so bad last year that I have been on soups since. They now suspect I have EDS.

 

[Katherine]

My sister has Ehlers Danlos supposedly though not too severely. She had to stop Ballet (her dream) because she kept getting injured. My father and I are both overly flexible though it's never been diagnosed. I have always had foot (arch) problems because my feet are overly flexible and my arch collapses.

My sister also has a lot of other health problems that are similar to mild CFS like she gets sick all the time, gets headaches, doesn't sleep well, is tired all the time. But she's very active, doesn't get post exercise fatigue, and it is likely at least partially stress or depression related in her case. Not mine though there's no mental link in my case no matter how hard I try to find one ;-)

Pre-cfs I was very athletic and played a lot of sport throughout my whole life from childhood. I never got any injuries. Certainly none that could be linked to EDS. I was very strong and my flexibility came from my gymnastic training. However, recently, a rheum said I was a little hypermobile (with particular reference to my fingers/wrists). Nobody in my family seems to have any EDS symptoms. Perhaps it is possible that with the onset of cfs, the disease process itself interferes with normal collagen production.

 

[Whit]

I've always been extra flexible and so have my father and sister. I'd like to look further into a possible link between EDS and CFS with me, but I don't know what to do. Anytime you ask a doctor about something like this they say "it's not likely". And at this point, I just want to slap them in the face and yell "whatever it is that I have isn't likely you moron! So we need to look into the unlikely things!!!"

How long do you have to be sick before doctors will realize that those rare illnesses actually happen, that those small percentages represent real people, out there, you know, in the real world. Real people like the one sitting in your office now asking for help.

GRRR

 

[Sushi]

I've always been extra flexible and so have my father and sister. I'd like to look further into a possible link between EDS and CFS with me, but I don't know what to do. Anytime you ask a doctor about something like this they say "it's not likely". And at this point, I just want to slap them in the face and yell "whatever it is that I have isn't likely you moron! So we need to look into the unlikely things!!!"

How long do you have to be sick before doctors will realize that those rare illnesses actually happen, that those small percentages represent real people, out there, you know, in the real world. Real people like the one sitting in your office now asking for help.

GRRR

Most docs are still repeating "When you hear hoof-beats, think horses, not zebras."

I used to belong to a site called "I am a zebra!"

Sushi

 

[Flashster]

IF (and I mean _if_ as I'm not sure myself, maybe in denial) I have EDS then its down to two people who discovered this - my excellent neurologist who has a reputation for not leaving any stone unturned, and the Professor who he referred me to, who, upon examination, seemed fairly convinced its what I have.

However, having also been diagnosed with cramp fasiculation in the last 12 months on top of my ME, I can't help but thing that something is causing the whole lot (i.e. my ME affecting collagen or muscles in some way). Swallowing is the worst thing thats come up and what caused me to investigate further. Ofcourse, we all have heard of people with sever swallowing issues with ME...

 

[Allyson]

My sister has Ehlers Danlos supposedly though not too severely. She had to stop Ballet (her dream) because she kept getting injured. My father and I are both overly flexible though it's never been diagnosed. I have always had foot (arch) problems because my feet are overly flexible and my arch collapses.

My sister also has a lot of other health problems that are similar to mild CFS like she gets sick all the time, gets headaches, doesn't sleep well, is tired all the time. But she's very active, doesn't get post exercise fatigue, and it is likely at least partially stress or depression related in her case. Not mine though there's no mental link in my case no matter how hard I try to find one ;-)

The EDS actually causes a lot of the other issues - not just the flexibility as connective tissue is all through the body so it is multi - systemic

Ally