Hypermobility & Ehlers Danlos syndrome

penfactor
penfactor Member Posts: 416
edited 3. Jan 2012, 20:42 in Living with Arthritis archive
Hi everyone
I have EDS type 3 which means I have hypermobility in all my joints & the many problems this causes. This is something you are born with. One of these is early onset arthritis. My knees & hips have been most badly affected and I had a THR on my right hip 2 years ago. I just wondered if any one else here has been diagnosed with this condition as would be nice to chat.
P.S Hello to all my old muckers on here - I'm so sorry I haven't been here for a while but I have had a family crisis which has meant putting my own probs in back seat for a while XX

Comments

  • valval
    valval Member Posts: 15,897
    edited 30. Nov -1, 00:00
    hi great to see you back you know they will be along hope family probs are sorted and you can put your self first for a while
    t7408.gif

    know it does not go with anything but brightens up forum val
    val
  • bertyboy
    bertyboy Member Posts: 2,052
    edited 30. Nov -1, 00:00
    Hello and welcome back can remember seeing your name about at times , i have oa so cant help with your issue but i am sure there are others that might x
    I know i am a lady ,all life is a journey xx MAY xx
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    hi Pennie,

    haven't got the condition but really nice to see you. hows it been going and leaving a ((( ))) and a cuppa. Cris xx
  • julie47
    julie47 Member Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi nice to see you posting again.
    I haven't heard of your condition ,sorry, so I can't help you
    I justwanted to welcome you back :grin:

    juliepf x
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Dear Pennie :smile:

    It is good to see you posting, it has been a long time, but I am sorry to learn more about your health problems. I am also sorry to read that things have been very difficult and upsetting for you and hope that life is treating you more gently now.

    As to EDS I do not recall mention of this, on here, but I may be wrong. I googled forums for H&EDS and there are some but you have more than likely seen them for yourself. I wish I could be of more help to you, Pennie.
    I see from FB that you keep yourself busy. Best way to be if one can. :smile:

    Love and gentle hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hello again Pennie :smile:

    There is also EDS UK and the HSA which both have a forum but I do not suppose for a moment that this is news to you.

    Look after yourself,

    Love
    Elna x(())
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • lindalegs
    lindalegs Member Posts: 5,408
    edited 30. Nov -1, 00:00
    Pennie Hi there c0106.gif

    I have a very dear friend who has this condition severely, unfortunately due to the problems it causes she's unable to come on line and chat to you :sad:

    I'm sure that if you have any questions you'd like to ask her I can always ring and act as a go between. She is just the sweetest, kindest person even with the pain and trials of the disease and I know she'll help if she can.

    If you do have anything you'd like to know it might be best if you PM me.

    I hope your family problems are sorted out now and it's good to see you again.

    Luv,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • penfactor
    penfactor Member Posts: 416
    edited 30. Nov -1, 00:00
    Hi valval, bertyboy, cris, julie, elna & lindalegs
    Thank you all so much for your replies. Yes, I never realised that my hypermobility was a strong indicator of having EDS as in the olden days it was regarded as just being "double-jointed" & when I developed Osgood-Schlatters growing up I reckon the ortho should've really looked into that more. o to now at the grand old age age of 52 to discover I have a "syndrome" is a bit of a shock! However it does really help knowing the actual cause of my osteo arthur, chronic migraines, stomach probs etc etc.
    Elna - bless you, hon for looking it up for me XXX & yes I have found immense support on the HMSA site & the many EDS groups on FB.
    Linda - I have the type 3 which is nowhere near as devastating as some of the other kinds. Does your friend have the vascular kind or POTS?
    The main difference for assisting osteo with joint replacements is that we are still stuck with the stretchy ligaments so any replacements can easily sublux or dislocate & I may be recommended to have my right knee done soon which is extremely scary for me as a few of you know I had such problems with my THR.
    Its lovely to see you are all still here though I know I am mates on FB with many of you. XXX
  • lindalegs
    lindalegs Member Posts: 5,408
    edited 30. Nov -1, 00:00
    I'll PM you Pennie. :grin:

    Luv,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • cherrybim
    cherrybim Member Posts: 334
    edited 30. Nov -1, 00:00
    Hello Pennie,

    I'm sorry to hear that things haven't been good for you and hope all improves soon, if not quicker!

    I have hypermobile joints, top whack on the Brighton & Beighton scales. It's a great bonus when a young gymnast and ballerina and quite "helpful" when one's 67, lol) My Rheumy says I've more than likely got ED 'cos of all the other indications but I declined to be tested for it, didn't really see the point, just another label to add to the RA etc.

    I don't heal at all well after ops and I have to be soooo very careful not to go over the top with the physio's exercise regime after hip and knee replacements. Got severely told off when I demonstrated how much movement I'd got after the ops, oops!

    It really is a nuisance I know. I receive attendance allowance, one of the factors being that in going to the loo at least twice/thrice nightly, I need someone to help me, "just in case" as my Doctor says. I don't like the feeling of helplessness but I'd rather be safe than sorry, lol

    Things have been a bit troublesome for the last month. Stu, my OH has just had a dynamic hip screw removed, together with all the ancilliary nuts and bolts and a new set of meccano inserted plus a THR! He's doing well, bless but it's meant that our lovely DIL has had to watch over me! Talk about the parent becoming the child :roll:

    Here's a bonus with hypermobile joints :lol: Can't kneel on the TKR but I can still put my hands flat on the floor, almost up to the elbows. Good result eh?

    Don't know if this suggestion might help you, should it be that you go on to have another THR or indeed a TKR. Buy a really iron strong corset, that stops anyone going beyond the prescribed exercises or the 90 degree rule!

    I wish you all the best and hope you fare well.

    Cherry x
  • penfactor
    penfactor Member Posts: 416
    edited 30. Nov -1, 00:00
    Hi Cherry!
    Thank you for your lovely post! I can see straight away we both understand each other! Re the dancing the Schlatters disease stopped me from progressing with my interest in that & after the bones stopped their funny business and I was left with ugly lumps on both knees I became so self conscious about them it took ages for me to find a new interest that was easier for me physically than normal bods which was yoga! Obviously, I really shouldn't have hyperextended so much as I did but I didn't know that then!
    My show-off tricks at classes & parties were being able to turn my feet to face backwards, putting legs behind head, twisting so head looked backwards (very popular when The Exorcist came out!) and yes putting arms flat on floor without bending my legs!
    Thank you so much for your advice re the next replacement op - physios usually don't approve of supports do they but in my experience it has been physios who understand more about our condition than surgeons so hopefully will be happy to help me.
    Its great to meet you here & I wonder if you also are on the HMSA forum?
    Pennie XX
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Aw dear Pennie

    I am so pleased that you and Cherry have been able to chat and hope that you can be of support for each other in the future.

    It is so good that you posted Pennie.

    Lots of love
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • frogmorton
    frogmorton Member Posts: 26,675
    edited 30. Nov -1, 00:00
    Hey ho Pennie

    hope l count as an old mucker!!

    Good to see you posting again and hope you willstay with us x;)

    Love

    Toni xx
    Love

    Toni xxx
  • cherrybim
    cherrybim Member Posts: 334
    edited 30. Nov -1, 00:00
    Hi Pennie,

    Yep, bless you.....we really do understand one another :lol:

    You've taken me back years with the description of your 'contortions' I know it so well! My favourite was turning my arms inside out whilst standing bolt upright in front of the teacher whilst being reprimanded for some minor transgression. My classmates, knowing and indeed encouraging me to demonstrate my 'funny bits' would shout out "Oh Miss she's broken her arms!" I could only put on that show twice as Miss soon found out in the staffroom that I was the PE teacher's pet :lol:

    I know it sounds very perverse but I would rather have hypermobility with RA & OA than not. I feel that 'normal people' with these complaints are really locked in to their pain and consequent immobility, bones and joints turned to stone as it were, whereas we with our bendy rubber joints certainly have all the pain but we can bend down to pick up a pin that's fallen on the floor :grin:

    Do you recall the film "Death becomes her" with Goldie Hawn? I laughed my socks off at that 'cos I've got a "swan neck" (cervical, not fingers) Reckon I could do a 360 degree turn myself :lol: I'm quite adept at restoring a sublaxed shoulder. Two weeks ago the Orthopod said he didn't think an op would help. A case of put up and shut up then, lol Oh well, you can't win 'em all can you 8)

    We must keep in touch, if only to regale our funny stories of this peculiar complaint.

    Many thanks to Elna for her lovely thoughts.

    Cherry x
  • penfactor
    penfactor Member Posts: 416
    edited 30. Nov -1, 00:00
    Toni of cause you are a mucker but not at all old!
    Cherry- haha - yes, grossing people out is our forte!! I DO remember Death Becomes Her - a very black comedy with two amazing actresses and all the twisting scenes did remind of me of one day when I walking my three year old son downstairs & my knee popped out & my lower leg was stuck off at a weird angle. It bloomin' hurt but I was very cool as I didn't want to frighten my boy. I sat down (no real choice in that matter!) and asked him to take mummy's ankle & pull hard on it - bingo, my knee went back into place but I have to say that each time this has happened to various joints they've never been quite the same since.
    I do see what you mean about it possibly helping with stiffness from OA/RA but then I am masseurs nightmare apparently as I have the most rock like shoulders. I also know what you mean about having another label & how this doesn't really help but I honestly feel, in my own case at least, that my osteo problems stem from the HMS.
    Another thing I think is that it wouldn't really have helped knowing about the risks earlier as our joints go where where they want when we are merely walking let alone doing ballet or yoga.
    Yes, be great to keep in touch here & you never know, another "bendy" might come along & join our convo!
    love Pennie X
  • Helenspence
    Helenspence Member Posts: 7
    edited 30. Nov -1, 00:00
    Dear all,

    I am relatively new to this forum but noticed this thread as I have been diagnosed EDS/HM in addtion to congenital hip problems and now knee problems.
    It is interesting that if, like me, you were born 1968 or earlier, there was very little understanding of these conditions and to be honest, there still isn't.
    Although at times I have found the extra flexibility useful, it really does not help unstable joints become more stable and led to me having many unsucessful operations as a child.
    There's a very good biog of a lady with hypermobility called something like "Bending without breaking" that I found very helpful.
    I am now treated at RNOH Stanmore, where I find that they are aware of the condition and do take it into acocunt, which I think wouldn't be the case in a more general hospital. I did go to a HM clinical at UCLH but found this very hard to get to so stopped - there wasn't really a great deal they could do for me.

    Helen
  • penfactor
    penfactor Member Posts: 416
    edited 30. Nov -1, 00:00
    Hello Helen!
    Welcome first of all to the forum and I am sure you will hopefully find lots of support & make some new friends here.
    Yes, you are absolutely right on the difficulties of getting diagnosed especially if you are a bit older. One of the main problems is that hypermobility in itself is not rare esp if it may only be in a few joints & many people can go through life without it becoming a major problem.
    I do know of the blog you mention - it is by a lady named Isobel Knight & she has also recently published a book on the subject of how it has affected her life.
    As you say, once problems set in there really is no cure only finding new ways of coping.
    Thank you for posting & saying hi - its good to meet you here :)
    Pennie
  • madwestie
    madwestie Member Posts: 383
    edited 30. Nov -1, 00:00
    Penfactor I have ra and was diagnosed about 5/6 years ago and then last month I had to see a haematologist and he told me I had eds which does explain a lot when I was young I used to have lots of pains in my legs which were put down to growing pains!
    I then got oa in my neck aged 25 and got told to go away and put up with as I was too young for anti inflamatories.

    When the consultant checked me for eds he said that the ra had made some of my joints stiff but he could see where they had been hyper mobile
    He also said I have a problem with the collagen under my skin which is why my bruises spread and take ages to heal.

    Tracey
  • penfactor
    penfactor Member Posts: 416
    edited 30. Nov -1, 00:00
    Hi Tracey
    Yes, it certainly does seem that so many rheummys & ortho consultants do not take us seriously as so many people on the HMSA forum say the same thing.
    Pennie
  • Helenspence
    Helenspence Member Posts: 7
    edited 30. Nov -1, 00:00
    [Yes, you are absolutely right on the difficulties of getting diagnosed especially if you are a bit older. One of the main problems is that hypermobility in itself is not rare esp if it may only be in a few joints & many people can go through life without it becoming a major problem.

    Interestingly, I only got a diagnosis becuase my sister and her children lived in Sweden for a while and they were diagnosed, leading back to me. It explained a lot about why 90% of my childhood hip surgeries were unsucessful. I now see surgeons at the Royal National Orthopaedic who seem good at taking this into account - I think for people like me, specialist hospitals are bestm even if you have to travel.

    I am getting a rised shoe next week and hope this might buy me a bit of time before my second knee replacement.
  • penfactor
    penfactor Member Posts: 416
    edited 30. Nov -1, 00:00
    Hi there! Just thought I would post this link to the HMSA/Erler-Danlos website. Mods, I hope this is OK - it is a charity like this is and it is for people with this condition of which early onset arthritis is one of the many problems related. http://www.hypermobility.org/index.php
    Thank you
    Pennie X