Hypermobility joint syndrome

Anybody else here who has hypermobility joint syndrome? :)
Is there a certain exercise or routine or something you found that helps you and your hypermobile joints in some way? What's your routine like? What do you do? :)

Also is there a certain type of clothing with brace/support/stabalizer you utilize for workouts? For which part of your body? And does it help?:)
I find I dislocate joints multiple times a week >.> as tiring as it I just work through it but I'm curious as to if there are more efficient methods out there and what everyone else does :>
Thank you to everyone and anyone who replies \^o^/
And those going through hypermobility JS, hang in there! :)

Replies

  • TheChesireCat
    TheChesireCat Posts: 21 Member
    I have a little experience of hypermobile joints (i have a son with special needs) although no where near the extent of your difficulties.

    The best exercise without a doubt is swimming as it supports your weight without strain to your joints. Swimming or aqua aerobics

    However if you are having that level of difficulty (I'm hoping you are in the UK or have good insurance) I would recommend going to your GP and discussing physio ideally hydrotherapy. You are looking to strengthen the muscles to better support the joints and to reverse any ligament damage you will undoubtedly have. It really can make a difference.

    What you need clothing wise will depend on where you are dislocating.Supportive boots has made a massive difference to my son's ankles. There is a guide to choosing shoes here http://apcp.csp.org.uk/publications/parent-leaflet-choosing-footwear-children-updated-2016
    It based on children but the same principles apply
  • RachNRoll
    RachNRoll Posts: 192 Member
    I have the same, even though from your description it seems that you have it more severe than me.
    I do Powerlifting and the condition affects my squats (because I can go all the way down easily and my glutes muscles aren’t that strong yet (I’m still a beginner) it causes irritation in my groins.
    I’m trying to work around my technique in order to make it comfortable, so far I try to stop after hitting parallel and have some more tension in my glutes. I think I’m managing…

    I also read somewhere here from a girl who power lifts as well that she doesn’t stretch some areas, and I noticed that if I only stretch my legs mildly, it goes better.

    I’m no expert, but I could suggest strength training, slowly, in order to toughen up your muscles and make your joins more stable.
    About clothing, I know nothing about it, but I’m curious to others suggestions :)
  • CollieFit
    CollieFit Posts: 1,683 Member
    I'm moderately hypermobile but not to the point of dislocation.

    I second what @RachNRoll said about strength training!!! It really helps keeping my joints in place.

    The best orthopaedic supports I have used are from a company called Bauerfeind. They are not cheap but absolutely awesome. Why not have a look at their product range. http://www.bauerfeind.co.uk/home.html

    I've used the ankle support and the shoulder support.
  • BendySpartan
    BendySpartan Posts: 104 Member
    Hey, I am hypermobile. I tend to sublax a lot more than I dislocate but have regular dislocation as well. The biggest thing for me is listening to my body and not pushing too hard. I do a mix of cardio, strength and Pilates. I do notice that I get worse when I am not exercising. I don't tend to wear any braces etc as they just don't seem to work for me. I also exercise barefoot where I can as it means my toes dislocate less.
    Biggest thing is to be aware of your movements, it is so easy to hyperextend and overstretch. Control is the key for me!
    Have sent you a friend request :-)
  • cafeaulait7
    cafeaulait7 Posts: 2,459 Member
    Man, mine's not nearly so bad. I don't dislocate anything, although my kneecaps come close.

    Strengthening the muscles around joints works best, and my worst joints take well to that when supported, so I'm lucky. I use sports tape most often for support (I'm just used to it, I think), and that's for most joints in all limbs, including my thumbs :grin:

    But they don't all get so dodgy at once, so that's a wrap or two extra at a time, lol. Generally I have to support my wrists and ankles all the time during strenuous or repetitive things. The rest go off when I've done something that used the joint more than normal, or occasionally just randomly.

    There are certain moves I can't do with my knees and one hip, and I have to go easier with the weight on my shoulders than I could lift. I can still progress my weight there (so far), but I just have to go slowly and not lift close to my max at all.

    I have a neck/back problem that's a whole other can of worms, but it gets its workarounds, too ;) Basically, I still train everything for strength, but I do break it up in various ways so different parts can be treated differently when necessary. Something's always acting up, but that's just how it goes! It's never been everything at once, so that's a relief, lol. Good luck :)
  • I have a little experience of hypermobile joints (i have a son with special needs) although no where near the extent of your difficulties.

    The best exercise without a doubt is swimming as it supports your weight without strain to your joints. Swimming or aqua aerobics

    However if you are having that level of difficulty (I'm hoping you are in the UK or have good insurance) I would recommend going to your GP and discussing physio ideally hydrotherapy. You are looking to strengthen the muscles to better support the joints and to reverse any ligament damage you will undoubtedly have. It really can make a difference.

    What you need clothing wise will depend on where you are dislocating.Supportive boots has made a massive difference to my son's ankles. There is a guide to choosing shoes here http://apcp.csp.org.uk/publications/parent-leaflet-choosing-footwear-children-updated-2016
    It based on children but the same principles apply

    Oohh thank you for your reply and all the information :)
    Thank you for the link, I will look into it :) ohh I hadn't considered swimming prior :o that's a genius idea! :D
    I do hope it isn't to rough on your son <3 sending my bestest wishes <3
  • RachNRoll wrote: »
    I have the same, even though from your description it seems that you have it more severe than me.
    I do Powerlifting and the condition affects my squats (because I can go all the way down easily and my glutes muscles aren’t that strong yet (I’m still a beginner) it causes irritation in my groins.
    I’m trying to work around my technique in order to make it comfortable, so far I try to stop after hitting parallel and have some more tension in my glutes. I think I’m managing…

    I also read somewhere here from a girl who power lifts as well that she doesn’t stretch some areas, and I noticed that if I only stretch my legs mildly, it goes better.

    I’m no expert, but I could suggest strength training, slowly, in order to toughen up your muscles and make your joins more stable.
    About clothing, I know nothing about it, but I’m curious to others suggestions :)

    Ohh powerlifting must help to strengthen the muscles yes? :o
    Mines is mild x.x I think it's just more aggravated for me lately because I've been trying to exercise more to build up muscle so my joints aren't as ermm lose ish. I think my choices of exercise might have been aggravating it more from the responses I've read on here :> so I'm keeping that in mind to see what would affect it less :>
    In regards to clothing I have heard of some people who have sports wear with built in support like for there back or to hold specific joints more on place, mm kind of like a brace but different, idk what they are called though.
    Thank you for your response! :)
    Also hang in there! Sending you good vibes and best wishes ^^
  • CollieFit wrote: »
    I'm moderately hypermobile but not to the point of dislocation.

    I second what @RachNRoll said about strength training!!! It really helps keeping my joints in place.

    The best orthopaedic supports I have used are from a company called Bauerfeind. They are not cheap but absolutely awesome. Why not have a look at their product range. http://www.bauerfeind.co.uk/home.html

    I've used the ankle support and the shoulder support.

    Ohhhhh thank you so much for the link!! :D I will definitely take a look at that :)))
    :o ohh strength training, I haven't been doing any of that x.x I think that's why my joints feel so wobbly when I try to do other exercises. I'm gonna try to build it into my routine! :D thank you for your reply and your recommendation ^^
    <3 best wishes <3
  • firef1y72
    firef1y72 Posts: 1,579 Member
    I have EDS type 3, with all the poor joint stability and pain that goes with it. A few months back I couldn't even get out of the bath on my own, I was in that much pain. Losing weight has helped somewhat, but strengthening the muscles has done more. You may need to work around your own issues (I can't use an upright bike because it hurts my hip too much and am just getting ready to start floor work as I struggle to get up from the floor), but being even a little more active helps and adding in strength and resistance training helps more.

    Do you have a physio? If so they can give ideas on where you can start, I also worked out a program with the owner of the gym I go to. I use the rowing machine, which is fairly low impact and works the whole body and then use the machines to work my arms, shoulders and back plus I walk on a treadmill as well as out and about. My physio is really happy with my progress, the pain is reduced by about 50% and it's nearly 2 weeks sine my ankle last gave way (used to be weekly). The only thing I've been completely warned off is running and then that'll be looked at again once I drop below 200lb.
  • firef1y72
    firef1y72 Posts: 1,579 Member
    Oh and take care stretching after exercise, you need to stretch but remember that you have a greater range of movement than the average Joe, so don't take the stretches as far as you're physically able.
  • Hey, I am hypermobile. I tend to sublax a lot more than I dislocate but have regular dislocation as well. The biggest thing for me is listening to my body and not pushing too hard. I do a mix of cardio, strength and Pilates. I do notice that I get worse when I am not exercising. I don't tend to wear any braces etc as they just don't seem to work for me. I also exercise barefoot where I can as it means my toes dislocate less.
    Biggest thing is to be aware of your movements, it is so easy to hyperextend and overstretch. Control is the key for me!
    Have sent you a friend request :-)

    Thank you for your reply and sending me friend request \^-^/
    I recently just for back into really exercising again, for the longest time ever I was afraid because a few years back my hip on one side shifted out of place and was higher than on the other side and it was on my list of most horrid pains ever, it still flip flops out of place occasionally but I'm more used to it now I guess. I've never had anyone prior really talk to me about hypermobility aside from telling me I'm hypermobile, so I still don't know all too much about it always learning. At the moment I'm just doing basic cardio, over the next few months I intend to add in strength training, and hopefully if my body let's me then Pilates as well.. Although I've seen some Pilates ..I'm very much unfamiliar with it in terms of experience x.x lol
    I think since it's been awhile that I truly got into a good exercising routing, I feel very wobbly, like a puppet on strings, I overextend and don't even notice when that I'm doing it till I hear that click or pop and then that x.x "control is key" I will keep tht in mind! :) the first thing I did my second week back into my 3-6 mile routine was pop my knee x.x i think I might have over extended it I'm not sure but I've been paying more attention to how I am walking.
    These replies have been very informative and helpful to me :)
    Thank you for adding me ! ^^
    ~Good Vibes~
    &
    <3 Best Wishes <3
  • Man, mine's not nearly so bad. I don't dislocate anything, although my kneecaps come close.

    Strengthening the muscles around joints works best, and my worst joints take well to that when supported, so I'm lucky. I use sports tape most often for support (I'm just used to it, I think), and that's for most joints in all limbs, including my thumbs :grin:

    But they don't all get so dodgy at once, so that's a wrap or two extra at a time, lol. Generally I have to support my wrists and ankles all the time during strenuous or repetitive things. The rest go off when I've done something that used the joint more than normal, or occasionally just randomly.

    There are certain moves I can't do with my knees and one hip, and I have to go easier with the weight on my shoulders than I could lift. I can still progress my weight there (so far), but I just have to go slowly and not lift close to my max at all.

    I have a neck/back problem that's a whole other can of worms, but it gets its workarounds, too ;) Basically, I still train everything for strength, but I do break it up in various ways so different parts can be treated differently when necessary. Something's always acting up, but that's just how it goes! It's never been everything at once, so that's a relief, lol. Good luck :)

    Ahh you too?? My knee cap particularly on my right side is bananas. Im mild so I don't dislocate often, I've been dislocating more because ive just recently picked up excercise again and I hadn't realized how wobbly my joints would be x.x that I overextending my limbs without realizing :x
    Hmm sports tape.. I don't think I've heard of it before, I'll have to look it up! :)
    Ahh that sounds like a wonderful way to put it into a routine :o I'm inspired! :D I'm very slowly trying to build muscle >.< as I've heard that it helps with keeping the joints more in place.
    I've found doing everything at once leaves me unable to move some limbs after awhile, not because of exhaustion or feeling tired but just because my joints won't go anymore, so I'm taking note of your method! I think breaking it up into parts is very smart! :)
    I'm really happy to hear from you and thank you for your reply ^^
    I hope your ventures go well! :) stay healthy and hang in there! :) wishing you the very best!! ^^
  • Lydilod
    Lydilod Posts: 135 Member
    RachNRoll wrote: »
    I have the same, even though from your description it seems that you have it more severe than me.
    I do Powerlifting and the condition affects my squats (because I can go all the way down easily and my glutes muscles aren’t that strong yet (I’m still a beginner) it causes irritation in my groins.
    I’m trying to work around my technique in order to make it comfortable, so far I try to stop after hitting parallel and have some more tension in my glutes. I think I’m managing…

    I also read somewhere here from a girl who power lifts as well that she doesn’t stretch some areas, and I noticed that if I only stretch my legs mildly, it goes better.

    I’m no expert, but I could suggest strength training, slowly, in order to toughen up your muscles and make your joins more stable.
    About clothing, I know nothing about it, but I’m curious to others suggestions :)

    I have hypermobility and am interested in lifting but don't know where to start. My hips and left wrist are particularly bad. Can you give me any tips or link to get me started.
  • firef1y72 wrote: »
    I have EDS type 3, with all the poor joint stability and pain that goes with it. A few months back I couldn't even get out of the bath on my own, I was in that much pain. Losing weight has helped somewhat, but strengthening the muscles has done more. You may need to work around your own issues (I can't use an upright bike because it hurts my hip too much and am just getting ready to start floor work as I struggle to get up from the floor), but being even a little more active helps and adding in strength and resistance training helps more.

    Do you have a physio? If so they can give ideas on where you can start, I also worked out a program with the owner of the gym I go to. I use the rowing machine, which is fairly low impact and works the whole body and then use the machines to work my arms, shoulders and back plus I walk on a treadmill as well as out and about. My physio is really happy with my progress, the pain is reduced by about 50% and it's nearly 2 weeks sine my ankle last gave way (used to be weekly). The only thing I've been completely warned off is running and then that'll be looked at again once I drop below 200lb.

    Awe, I've heard of how horrible the pain can be with EDS :(
    Working around my issues and strengthening muscles is something on my list as well :)
    Physio, like physical therapy? I used to have one but they seemed pretty disinterested x.x I may have to look into it again, I think it might also help in learning exercises and maneuvers that would help strengthen and pull joints closer to where they should be if they slip maybe?
    Thank you for your reply. Sending you best wishes <3 Power to you :) may you achieve the goals you have set for you :)
  • kiela64
    kiela64 Posts: 1,447 Member
    I have a bit of this (it was a lot worse as a kid) and my kneecap partially dislocated last semester just super out of the blue. After a few months of physio I'm walking normally again, but he recommended sticking to low impact cardio like swimming & walking & stationary bike at a low resistance. I was also given glute strengthening exercises, to take pressure off of my knees - I eventually worked up to lunges and squats (body weight and only halfway down not to the ground).

    I think it's going to depend on the particular joints that are the issue, and a physiotherapist could give you some pointers.
  • Willbenchforcupcakes
    Willbenchforcupcakes Posts: 4,955 Member
    I'm hypermobile. For me, my ligaments are very lax, while tendons are normal. Before I was diagnosed, sprains and strains and the occasional dislocation were weekly if not daily occurrences. Just being aware of my movement patterns has helped a lot, and strengthening the muscles has helped even more.

    The last thing I sprained was my thumb just over a year ago, although I did a wicked job on my SI joints last May. Chiro had adjusted my hips up to normal and my right hamstring decided to pull the right side of my pelvis back down while I had 160kg halfway through a pull.

    I don't stretch except for the tight axis of my lower crossed syndrome. So hamstrings, hip flexors. Since I'm a bencher, I stretch my back on a very regular basis and just accept the stabilization work as well.
  • kae612 wrote: »
    I have a bit of this (it was a lot worse as a kid) and my kneecap partially dislocated last semester just super out of the blue. After a few months of physio I'm walking normally again, but he recommended sticking to low impact cardio like swimming & walking & stationary bike at a low resistance. I was also given glute strengthening exercises, to take pressure off of my knees - I eventually worked up to lunges and squats (body weight and only halfway down not to the ground).

    I think it's going to depend on the particular joints that are the issue, and a physiotherapist could give you some pointers.

    Low impact cardio like swimming and walking. I don't know how to swim, do you reckon it's tough to learn? O.O
    I hadn't considered swimming before until someone mentioned something called hydrotherapy, when I looked it up, there was a ton of info on it being good for joints and muscles. I find for some reason I'm still able to use a bike and it actually somewhat helps to keep my joints a bit more stable since I'm not doing all that much moving around I guess. I like your recommendations! :) I need to book an appointment with a physio it seems :o
    Thank you so much for your reply! ^^ <3
    I do hope your routine and workouts go well! :) best wishes ^^
  • I'm hypermobile. For me, my ligaments are very lax, while tendons are normal. Before I was diagnosed, sprains and strains and the occasional dislocation were weekly if not daily occurrences. Just being aware of my movement patterns has helped a lot, and strengthening the muscles has helped even more.

    The last thing I sprained was my thumb just over a year ago, although I did a wicked job on my SI joints last May. Chiro had adjusted my hips up to normal and my right hamstring decided to pull the right side of my pelvis back down while I had 160kg halfway through a pull.

    I don't stretch except for the tight axis of my lower crossed syndrome. So hamstrings, hip flexors. Since I'm a bencher, I stretch my back on a very regular basis and just accept the stabilization work as well.

    Oh wow :o amazing information! I'm taking all of this into account! :D thank you so much for your reply :S this gives me many ideas and hope as well ^^ Thank you!! :)
    ~best wishes~
  • RachNRoll
    RachNRoll Posts: 192 Member
    edited March 2016
    Lydilod wrote: »
    RachNRoll wrote: »
    I have the same, even though from your description it seems that you have it more severe than me.
    I do Powerlifting and the condition affects my squats (because I can go all the way down easily and my glutes muscles aren’t that strong yet (I’m still a beginner) it causes irritation in my groins.
    I’m trying to work around my technique in order to make it comfortable, so far I try to stop after hitting parallel and have some more tension in my glutes. I think I’m managing…

    I also read somewhere here from a girl who power lifts as well that she doesn’t stretch some areas, and I noticed that if I only stretch my legs mildly, it goes better.

    I’m no expert, but I could suggest strength training, slowly, in order to toughen up your muscles and make your joins more stable.
    About clothing, I know nothing about it, but I’m curious to others suggestions :)

    I have hypermobility and am interested in lifting but don't know where to start. My hips and left wrist are particularly bad. Can you give me any tips or link to get me started.

    @Lydilod I can try :) I can tell you that I’m a beginner, I’m doing power lift for a couple of months and using a beginners program. The most popular one is called Stronglifts (you will see a lot of people here talking about this program). It’s a progressive overload program, meaning that you start with a certain weight (whatever you can handle) and increase gradually in each session. It’s very simple: 5 exercises, 3 times a week.
    I strongly recommend you to download the app because there you can track your progress and more important: the videos on how to perform the exercises with PROPER FORM. And I cannot stress this enough because it’s really important, crucial that you do things with proper form. Even if it makes your progress slower (trust me, I’ve been there).
    Another tip I can give you is to watch Youtube videos. There’s this guy called Allan Thrall: he has great videos on how to do things properly. https://youtube.com/user/athrall7

    Considering your condition, I also strongly recommend that you do some sessions with a Personal Trainer, or at least with someone to spot you.

    I can say that my condition improved so much in such a short period of time (1 month and a half) that I only wished I had started sooner. But I train with my boyfriend and he helps me a lot with the form, and sometimes it can be annoying because you know you can take more weight (it’s so fun to see the app’s graph increase) BUT he will say “no, no more weight until you can do it properly”.

    Also, don’t be discouraged if when you start things are too heavy. I can tell you that I couldn’t even lift or squat an empty barbell. So I used a smaller one, the ones that they use in classes like Body Pump, and started from there. But it gets better and you’ll get stronger, I guarantee.

    That’s pretty much all I know about it, I hope it helped a little at least :)
  • Lydilod
    Lydilod Posts: 135 Member
    Thank you so much for the info. @RachNRoll This helps a lot.
  • BalletAndBarbells
    BalletAndBarbells Posts: 334 Member
    I'm hyper mobile and I highly recommend strength training to build up the support around your joints. Swimming and cycling are also good. The only thing my physio told me to avoid was yoga. I think the most important thing is to really focus on what you are doing and ensure you don't overextend. My training schedule looks like this just for your info:
    Monday - rest day but in April I will be going back to ballet classes.
    Tuesday - spinning and circuit training
    Wednesday - spinning
    Thursday - circuit training
    Friday - spinning
    Saturday - spinning
    Sunday - spinning and circuit training.
    I also do SL5x5 and fit my lifting days around my work schedule etc. I always lift before the cardio so my muscles aren't too tired. I tend to do lifting on Wednesday, Friday, Sunday.

    I have tried a couple of knee supports but my physio is not a fan of them because they can falsely reassure you. She is going to show me how to use k tape.
  • debsbiggs wrote: »
    I'm hyper mobile and I highly recommend strength training to build up the support around your joints. Swimming and cycling are also good. The only thing my physio told me to avoid was yoga. I think the most important thing is to really focus on what you are doing and ensure you don't overextend. My training schedule looks like this just for your info:
    Monday - rest day but in April I will be going back to ballet classes.
    Tuesday - spinning and circuit training
    Wednesday - spinning
    Thursday - circuit training
    Friday - spinning
    Saturday - spinning
    Sunday - spinning and circuit training.
    I also do SL5x5 and fit my lifting days around my work schedule etc. I always lift before the cardio so my muscles aren't too tired. I tend to do lifting on Wednesday, Friday, Sunday.

    I have tried a couple of knee supports but my physio is not a fan of them because they can falsely reassure you. She is going to show me how to use k tape.

    Oh wow, thank you so much for the detailed input! :D
    Ahh I have t hears of ktape before :o is it similar to sports tape?
    Your routine sounds awesome :) I hope to build up to something similar slowly :D thank you again for your reply
    -happy wishes- ^^
  • lauralou93a
    lauralou93a Posts: 50 Member
    I have hyper mobility syndrome and IBS at the moment I don't suffer with pain but used to a lot I don't take any meds and I'm lucky in the fact that I don't sublux or dislocate - so far anyway .
    But I need to find some safe exercises for me to help me on my weight loss journey currently just walking to do the school run when I have to
  • lauralou93a
    lauralou93a Posts: 50 Member
    Thinking of doing Pilate's using YouTube again I used to do this as its supposed to be a safe exercise need to find exercises to do at home
  • TheChesireCat
    TheChesireCat Posts: 21 Member
    Thing to remember with any movement is that you are looking to do it slowly with control. If you are stretching you need to make sure you are feeling it where you are mean to be feeling it. A decent instructor will be able to sort you out.

    If you do pilates (behind swimming this would be the best plan) try and get a small class where the instructor can get round everyone and check what they are doing.

    Yoga is not so good as it focuses on stretching tha that is way too easy with hypermobile joints

    Yes yes definitely learn to swim! That is by far the bestest safest form of cardio you can do.

    But you do need absolutely need physio/hydrotherapy. Not all physios are so great with hypermobile joints so make sure you get a decent one and don't be afraid to ask for a second (or even third) opinion. Sadly in the UK you often need a private physio opinion before you get the help on the nhs, they are massively overworked. All my little lot have hypermobile ankles and all of us have had periods of repeated sprains which have either been helped or stopped.

    Yy to kinesiology/physio/k tape for injuries but only until you can get back to the physio. Make sure you are taping in a way that encourages movement and ongoing use of the muscles (that you are always trying to strengthen), so for example on a severe sprain my physio strapped the ankle with only 3 long strips of tape (passing underneath the sole of the foot crossing on top and finishing mid way up the leg)

    But with your level of difficulty I would be seriously worried about starting a programme of exercise outside water without you having a package of physio and hypermobility doctor alongside
  • danzrlove
    danzrlove Posts: 445 Member
    Anybody else here who has hypermobility joint syndrome? :)
    Is there a certain exercise or routine or something you found that helps you and your hypermobile joints in some way? What's your routine like? What do you do? :)

    Also is there a certain type of clothing with brace/support/stabalizer you utilize for workouts? For which part of your body? And does it help?:)
    I find I dislocate joints multiple times a week >.> as tiring as it I just work through it but I'm curious as to if there are more efficient methods out there and what everyone else does :>
    Thank you to everyone and anyone who replies \^o^/
    And those going through hypermobility JS, hang in there! :)

    I was officially diagnosed last week. Several years of unexplained aches and pains and advice contrary to my condition. I am trying to figure out what to hang on to and what to toss. I'm a dancer and I worry about continuing. I'm 30 btw. Right now I'm on the hunt for good knee braces since my ankles and hips are putting more pressure there. I have subluxations it seems all the time several times a day in hips, spine, knees and ribs. My ankles are also unstable and give out so heels are a thing of the past
  • adoette
    adoette Posts: 181 Member
    I've long suspected I had hyper mobility (a doctor mentioned it as a possibility years ago) but reading all of this has made me decide to add it to the list of things I'm going to talk to my doctor about when I go see him.

    I can't run because the knobbly bones in my left ankle pop out (they do it walking too, but running means I fall), my right femur rolls put at the hip, and my shoulders like to pop like wet rice krispies.

    I think I'm about to find out that choosing a sports medicine doctor as my primary physician (he does that too, but I chose him because he has low wait times for appointments) is the best accidentally awesome choice I've made in years.

    That poor man isn't going to know what hit him when I pull out my little notebook with its list!
  • danzrlove
    danzrlove Posts: 445 Member
    From what I've read I believe Rheumatologists and geneticists are the doctors who can diagnose the syndrome. I have had a physical therapist mention it years ago, but he didn't make it seem important nor mention it to my pop at the time.