Anyone else with Ehlers Danlos Syndrome (EDS) or hyper mobility syndrome? (To go with their Lupus that is!)

I'm finding writing about everything quite cathartic, especially now I've found somewhere with so many similar people!

I was just wondering, does anyone else get insane joint involvement? My joints are ridiculous - you know those old fashioned dolls that had elastic holding their limbs into the sockets? I'm like one of those when the elastic has decayed and my limbs wobble and pop out all over the place.

I was diagnosed with EDS hyper mobility/classic type before SLE by some musculoskeletal specialists, they wanted to operate on my shoulder that spends more time out of the socket than in, but after loads of scans they decided they actually had a bigger chance of making it worse, so left it be and abandoned me to fate! (Thanks musculoskeletal dudes!).. I was getting physio but it was cancelled never to be rearranged due to staff shortages...

I guess my elastic is decaying more and more - now even my ribs wobble and make my chest muscles go into horrendous spasms if I laugh too much - brings a new meaning to 'crying laughing'! And it makes me laugh even more because I look like an extra from Alien (with the alien emerging from my chest!)... And I can tell you, dislocating your elbow is probably the best way to make people puke at a party ;)

My main problems with it at the moment are my wrists and ankles - they're so wobbly they just come apart - can anyone recommend any decent braces/supports? And does anyone know if you can get pretty coloured/patterned wrist braces? That nude colour is vile.

14 Replies

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  • Hi blueberry,

    Is Hypermobility called EDS as i wondered what people were talking about when writing EDS. I have Hypermobility with Lupus /Sjogrens and raynauds. Lou

  • You can just have HMS (hyper mobility syndrome) or EDS which has other complications with it and there are three types - skin (super stretchy) vascular (veins tend to rupture) and hyper mobility.

    en.wikipedia.org/wiki/Ehler... <-- there's an extensive list of the associated symptoms. A lot of them cross over with Lupus symptoms though.

    Such as dizziness and neuro problems, susceptibility to chest infections and POTS - all of which I get but who knows whether it's the Lupus or the EDS?!?

  • Customise your braces I have! Might be worth trying to dye a pair to?? I do have some black ones fron the OT also, I call them my rock chick ones as the look quite bikerish I think ;-)) good luck! X x

  • I was looking at some black ones and thinking 'they're not tooooo bad' lol biker chic! :D Thanks Heather x

  • Hey there (again): I'd say grrrreat to hear more from you, but......wish we didn't have this stuff going on. anyhow, your great sense of humour sure helps me cope. So here is my version of this stuff:

    Yes, I'm hypermobile too. As is most of my family on both sides. My version is pretty wobbly, but maybe not as extreme as yours! Stuff pops out if I reach too far eg shoulders, but mostly I just way overbend in literally all my joints. When i was growing up before hypermobility diagnosis (in my 40s, finally, by a clued up physio after a spine denervation op) this tendency meant I was great at yoga: ha ha. And helped my career in gardening cause I could bend over to do almost any job: ha ha. Of course this meant all my joints were being worked much too hard....and until last year my SLE diagnosis was still forgotten etc

    So far my spine, shoulders, ankles and feet joints are my main probs. Bilateral facet joint devervations to top and bottom of spine have helped numb the joint pain there + plaquenil helps that soft tissue pain. The feet are my biggest prob: talk about multidisciplinary treatment: bespoke langer orthotics stabilise the joints (full foot with arch support and metatarsal domes argh: can only get them in trainers...an extra size big: thank goodness lots of great styles on the market) but after gradually giving up most activities, walking on the flat was all I had left....for past few years have had to stay off my feet as much as poss. My simultaneous raynauds & erythromelalgia is worst in my feet & hands too.

    Lifestyle management has been my way of surviving this all these years: the Alexander technique, a carefully tailored 30 min exercise regime i put together with help of my great osteopath (combining yoga, Pilates etc), lying down every afternoon for at least an hour which gives me a chance to basically meditate + an extra hour of sleep so that helps a lot with the SLE fatigue too all the sorta stuff forced early retirement gives me time to do....and of course plaquenil really has helped (years of NSAIDs and heavy pain killers kinda maybe helped a tiny bit but mostly by making me so groggy I almost forgot I was in pain....and they did awful stuff to my upper GI...). You're right: gotta be vvvvvvvvv careful doing any sort of exercise as it can so easily make stuff worse....over the years my grrrrreat therapist has helped me a lot to learn how to basically go gently in all ways (emotional & physical)....to pretty much avoid extremes in my life....but not let doing this make everything totally blah boring....

    Well, have gone on enough...does any of this help you even a bit? I spent years wearing ugly nude coloured neck collars disguised with scarves....then would you believe discovered there are thinner coloured collars made for horse riders, so when my neck wasn't too bad I could wear them.....not too easy to disguise braces on hands....my sister disguises her ankle braces by always wearing high top trainers....like I said: hooray for all the grrrrreat trainers on the market right now!!!!!!! I was dreading having to resort to those huge black orthopaedic shoes.....

    XO

  • Hey Barnclown :D

    That was super helpful - we're quite similar.

    I've got to the stage now that if I do 20 minutes very gentle pilates I feel like I've been pulled apart in the night and stuck back together - all my muscles are burning, burning burning! I need physio again :( I need to get my doctors to listen!!!!!!

    What is your erythromelalgia like? Is it is as awful as it is to type?! Lol. I get a cramp around the base of my third toe if I flex my toes too much, then all three smaller toes dislocate and twist inwards, basically sending a ripping pain through the sole of my foot...does that sound similar or is that just my dislocating-ness?!

    My neck! I'm lucky I don't need a brace but it crunches like... like if I move it from side to side all you can hear is a very loud CRACK CRACK CRACK!

    Have you ever dislocated both shoulders at once and been stuck? Am I the only one?! :D

    I've gotta admit I often turn my ankles over and pop them due to wearing girly shoes. I'm very feminine and trainers and dresses. Sigh. No. Hehe.

    I'm happy sad we match. :)

  • whoa girl, you do cheer me up!

    i know that crack crack crack CRUNCH neck thing well....

    and yes, the weird double jointed toes cramping thing too

    i'd avoid the trainers only thing as long as i could if i were you: promise i would! the day i had to give all my girly shoes away wasn" the greatest...but, hey i was past 50 by then....enjoy it while you can....but i admit even my version of girlie shoes had to fit a half foot orthotic....it was when the forefoot joints collapsed that i had to go for fullfoot with met domes and that mean trainers only....and i also have to admit: the bigger orthotics and more sensible high ankle shoes do help me avoid the worst ankle & foot trouble (as things got worse the nerve firing and numbness in my toes was agony....i still get it even with the bigger orthotics, but no quite so bad). but i've got a lot of years on you!

    for me the erythromelalgia was the last straw feet-wise. i think they also call it ET, haha. my first rheumy last year diagnosed it when he was checking me out re raynauds. ET is well explained on the raynauds & scleroderma assoc website. it's when bits of you (usually feet & hands) go inflammed and burning red and sorta stay that way (not just he normal red phase that comes with raynauds). my ET got worse and worse during perimenopause...by menopause i had to sleep with feet & hands sticking out of the bedding.

    double shoulder dislocations are a delight i have yet to experience!

    well, i wish none of us had to cope with this stuff! but at least we can swap tips & tales. i gotta add: have been on plaquenil 400mg daily now for almost 1 year, and it really has slightly taken the edge off all my soft tissue and joint pain, and even damped down the ET a bit....i forget, but i think you said you had to stop plaquenil? are you on anything that helps? for sure, the muscle burn i used to get even with my vvvv gentle exercise routine has dropped way down in intensity since i started plaquenil....of course part of me is tempted to wonder when/if plaquenil might start loosing its effectiveness...but i tell myself not to go there...

    take care and keep laughing

    xo

  • ET ...go home! Seriously, that sounds awful! I have Reynauds and that's bad enough!

    I haven't yet had the pleasure of acquainting myself with plaquenil - just steroids, I'm still waiting to see a real life Rheumy :) I can't wait to try it! I've been laid up for three days after one tiny little pilates stint :|

    Neck corsetry sounds exciting!!!

  • oh my WORD that sounds like my hands. My Rheumatologist wants me to consider going onto immunosuppressants. I am reading about them now. I have Ehlers-Danlos (Type III - hypermobility with family with a vascular element - cousin died in infancy) and am also an olympic weightlifter - I went to see the specialist unit at UCHL and they said my lifting was holding my body together and never stop :) when your ligaments and tendons are stretchy, developing strong muscles to pick up some of the load is the best possible thing you can do. It's just tough when you're so floppy to start with (my sister is disabled and suffers chronic pain and a whole world of other associated problems) and I've been very lucky to have always done sport and has a base fitness and strength to prevent injury. I am so bewildered by my hands and wondering what autoimmune disease is the cause - I've slightly elevated ANA's on the last test months ago but since then my hands have become incredibly damaged, swollen (couldn't bend my fingers!) red welts so sore they feel like nettle rash to touch, areas of numbness, and pain. Obviously I am still going into a cold gym and lifting a cold steel bar! so something must be done :) there should be a mind map of associated illnesses with EDS - it's a maze I am constantly baffled by.

  • Hello there the bear

    Hope ok with you if I send you a private message now, rather than replying here on this old thread

    Will do a p.m. now

  • To Blueberry:

    There are loads of very cool gear if you look at body armour (many extreme sports use).

    DonJoy is the brace company I highly recommend but may not be stylish enough. The made to order braces are fantastic. My knee brace has flames. HA!

    A friend of mine with weak neck muscles decided to 'go for it' and uses a neck corset. Very cyperpunk steampunk radical chic. It works for her. A scarf and no one is the wiser. Then off with the scarf and a clubbing she can go. It's all about attitude.

    You can always bedazzle. HA!

    Have you considered changing careers and becoming a contortionist? I had to write it. My bad. In a silly mood. Cirque du Soleil calling all with SLE ...

    Better to protect and brace than to fall or injure. You will look fab in anything if you OWN IT.

    Take care. Be beautiful.

  • I can't tell you how many guy's eyes have popped out slightly when describing my 'condition'. I have in the past tried contortionist things, but only in my bedroom, I can do some weird stuff :o hehehe.

    I am loving the slightly steam-punk black braces - I think I'm gonna steam-punk up my 1950's dress-code into a weird new style :D I like the ones with lots of straps and laces :)

  • NB: when I say I was in my bedroom that doesn't imply any horrible rude things :o

  • Blueberry- I am sorry you're having to suffer the pain and disability that are part of Hypermobile Ehler's Danlos disease.( hEDS ). And I can really relate, as I have been diagnosed with: hEDS; Fibromyalgia; several badly ruptured discs; Chronic Fatigue; TMJ; migraine; etc. ( I do not have Lupus. ). My journey with these diseases began when I was really young. However, the symptoms did not really become severe until I was in my early thirties.

    As I have been dealing with the severe and disabling symptoms of these diseases for many years, I have some suggestions. The research on hEDS, fibromyalgia, etc. and treatment by my MDs suggests the following helps many of those with hEDS. For best results having a couple of MDs whose specialities help hEDS, fibromyalgia, etc. on my care team are the following: an excellent pain management MD; a Rheumatologist specializing in Fibromyalgia; and an Orthopedic MD. As well as a physical therapist who help me design an individualized physical therapy program. ( My PT and exercises help: tone muscles; strengthen muscles ; strengthen bones; and benefit overall health. As muscles around joints grow stronger, there are less dislocations.

    These MDs have used multimodal treatments. ( Meaning a number of different treatments, combining those most helpful. ). For myself this has included: NSAIDS; pain medicine; Lyrica and Cymbalta for the FMS; as well as NSAID or cortisone injections when needed. Supplements recommended by my MDs which help are: multivitamin; Magnesium Malate ( for muscle pain; ) and D-ribose for energy. As well as Calcium and D3 supplements.

    All the above helped, yet I was still really struggling because my chronic pain was so intense. Last year I purchased a Quell tens unit ( see quell.com for info. ), and it has significantly reduced the pain. A new discovery which the research reveals not only treats chronic pain but actually treats inflammation on the cellular level is the PEMF device, OSKA ( oskawellness.com ). I have had amazing good results with both devices! ( Research shows Quell significantly reduces chronic pain in 80-85% of those who use it. Studies on the OSKA show it reduces chronic pain and inflammation 70-90% of the time. As well as: heals injuries; increases blood flow, etc. ).

    Since I would like to decrease or stop the NSAIDS, I looked in the research for any supplements that reduce inflammation, as well as prevent Osteoarthritis . ( X-Rays and MRIs show I don't have Osteoarthritis. And I want to prevent it. ). The supplement tested in those studies was compared to generic Celebrex. At the six month point the supplement ( pure form of Chondroitin plus Glucosamine ) equalled the NSAID in pain relief and decreasing disability. Most amazing was that while the NSAID suppressed the inflammation and pain, the supplement combination actually treated and reversed the Osteoarthritis ( proven by before and after X-rays and MRIs. ).

    I wrote the head researcher, as the name of that supplement was not in the studies. She wrote back and said that the equivalent available in the U.S. is called Cosequin DS. So, I am going to take it for six months and see how I benefit.

    The Quell tens unit is fairly new. After wearing it six months almost continuously, my chronic pain is significantly reduced. I sleep better, also. The PEMP device has a ton of very impressive research. It not only manages pain, but also treats the joint inflammation at it's source, your cells. Have only had the OSKA a short while, and it already has greatly reduced inflammation and pain I had from a mal tracking ( partially dislocating ) kneecap, and some overuse.

    So, please gather some information about the above. And discuss it with your MDs. Also lifestyle changes, such a good sleep hygiene; and eating healthy can help. My friends, boyfriend, family and church family have been supportive. Some folks also benefit from a support group. There is one for fibromyalgia that I hope to join this year. And the Internet, especially sites such as teaminspire.com are good for support, as well as learning about new treatments.

    Several expert MDs in hEDS conclude that those of us who have it should avoid joint surgery. That our disease is such that we do not heal well from that, at all. So, when I had a torn medial meniscus ( tear in knee cartilage, ) I chose to do PT and gentle walking. And after some months of that, as well as icing, it did heal.

    Finally,please ask for support when you need it. These are stressful diseases, and thus support and stress management can help a lot. Also knowing the recent research, and becoming your own advocate makes the MDs jobs easier. I hope some of this helps someone else. God bless you.

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