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Thread: Any other Ehlers Danlos girls? Or other joint problems?(long)

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    Featured Member needtodance's Avatar
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    Angry Any other Ehlers Danlos girls? Or other joint problems?(long)

    OK so i have Ehlers Danlos syndrome, its caused me a LOT of problems in school and work.

    For those who don't know, its a genetic collagen deficiency. I'm EXTRAORDINARILY flexible, but because the "glue" holding my body together is weak, i can pop pretty much ANY joint out of the socket on command, and am prone to a LOT of other issues with my health. It can cause other complications with major organs, but thats besides the point.

    For instance, it usually manifests in my hands, and I'll have an outbreak of tendonitis so bad that I can't hold a pencil, and it sometimes lasts weeks. Or my knees will randomly swell up and become so freakishly painful that its difficult to walk(though this has only happened twice) The tendonitis can happen anywhere in my body, and even on "normal" days, there's a LOT of pain, even with no swelling or physical appearance of an ill.


    So needless to say, I have pretty bad joints.

    Which brings me to the point... What do you girls with health issues like this do when you dance? For the most part, its varied enough that it doesn't cause me problems, however I have to watch myself REALLY closely on pole tricks.... Like now. Four days ago, I wasn't paying attention and i went to do a pole trick, and POOF dislocated shoulder! The dislocation ITSELF wasn't painful, and it popped back in easily enough, however its been in more or less constant pain ever since. I've had to cancel one shift, and leave two others early this week, because even with painkillers, it hurts to even hold the pole for support when I turn! Very pathetic. And still I keep trying, because the club has REALLY needed me there... Its hard to explain how it hurts, as the area varies... currently, it hurts from my wrist, all the way to my shoulder, and the muscles under my breast, and inside my elbow.... Hurts to breathe, and move my arm.

    I take Glucosamine supplements already, and am careful to stretch and warm up before dancing... But can anyone else suggest things that might help prevent any more muscular or joint damage?





    This is really scaring me. I always felt guilty getting the special help at school with the writing parts(dictation, or additional time, or use of a computer), because it didn't "feel" like a "real disability", but the longer I live, the more it DOES seem to be one...

    Can't write papers, that hurts the hand, can't do intensive manual labor, same... can't do a lot of forms of high impact workouts and activities, have only had ONE form of "gainful employment" that DIDN'T cause me to have such severe pain outbreaks that I couldn't even complete classes... And that was small-quantity dessert production, which its IMPOSSIBLE to find a job in... And thats not even including the hobbies I've had to give up because they were just too painful-piano, crochet and knit, sewing, drawing, calligraphy, and writing away from a computer, jogging...

    I've failed out of college because of the pain, failed out of culinary school for the same, lost at least 3 jobs, and had many more "sick days" as well...

    I think I'm beginning to consider it a REAL disability, and I still have no idea what I can do, since its so difficult to support myself!

    I'm TIRED of always being sick, injured, in so much pain I can barely focus, even if it IS physically possible to do the task!

    I've spoken to my doctor, and the problem is that since its genetic, there's no form of therapy that would help me, we can only treat the episodes as they come, and make sure school/work knows of the disease and don't come down too harsh on me.

    I just feel like this isn't good enough. I expect better of myself.

    I enjoy putting on my stage shows, and challenging myself on the pole, the flexibility is QUITE a thing to see... And comparatively speaking, this isn't NEAR as harmful on me as a lot of my other jobs have been... But at the same time, its harder with this one to look my manager in the eye, and try to explain why I CAN'T do another set, at least not while its like this-they need me in there, so i've been unable to really let it HEAL the way I know it needs to. Because now, even if I don't touch the pole the entire night, it still hurts, and if I try to do any floorwork, the same pain is incorporated. Really, the best thing for me would be to take a week or so, do NOTHING but heat, epsom salt baths, and careful stretching, as well as treatments of arnica, and anti inflammatory painkillers, but I just can't quite do that, not with my club this short on dancers.

    One of the other dancers at my club has been pulling double, triple shifts pretty much daily. when i'm there, I try to do similar, usually there 8-12 hours at a time, once as much as 15, but I just physically CANT because of the pain, no matter how much they need me. They recently stopped hiring girls from an agency, but didn't have their own house girls lined up and scheduled, hence these few weeks being VERY hectic, with them continually begging us to come in...

    I was doing fine when I could make sure I had at least a day in between shifts to recover, and wasn't working for more than 6-8 hours a day... Need to figure out how to handle this.

    Advice?

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    God/dess Lena's Avatar
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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    You don't owe any loyalty to a club. Take care of yourself.



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    Veteran Member ScarletPhoenix's Avatar
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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    I have ED. I've got moderate hypermobility and vascular complications. I have the same problems with working for more than 6 or 7 hours, lifting things, etc. I get the extensive and sometimes puzzling bruises. (Like the bruise I have right now on my butt cheek. It looks like someone tried to prison rape me and missed by 3 inches. Or shot me with a paint ball. It has little ruptured veins and everything and I don't know where it came from! I don't recall an injury.)

    Most of my painful dislocations occur during SEX! Some partners are insensitive, but the one I have right now makes a game out of it. When one position hurts, we move seamlessly to the next. We call it "around the world" because I usually end up spending a minute or three on every side of my body. Heh.

    The dislocation has only affected me once at work, and I've changed my style of floor work to avoid that happening again to my hip. I move very slowly and make that my style. almost like yoga from pose to pose to make sure i'm in alignment and not going to pop something out. However, I can't use the pole at all. At least not until I build the muscles around my shoulder and elbow joints.

    Building muscles around the joints helps keep them in place, especially if you move slowly using your muscles instead of momentum or gravity.

    Even when I'm not hurting, I take an ibuprofen (and a big glass of milk, thanks to the tender stomach) before I work. It makes it easier to sleep when I get home, and I am not as sore in the morning. This helps a lot if I have to work two days in a row, though I can't do more than two. I tried three days once and had to take a week off.

    I'm sure you know all about heat, cold, bath salts, and stretching.

    Also, every two weeks, I shell out 150 bucks for an hour long theraputic massage. I go to one that's versed on my condition and does a lot of sports massage too. I tell her exactly what hurts when i get there, or what's been bugging me since last visit, the quality of the pain, and let her manipulate what she can back into submission.

    My doc won't give me pain meds because he's an absolute twit. So I buy vicodin off the black market and usually go through about 15-20 in a month. Usually I take 'em on the weekends when I try to pull a 10+ hour shift if the money is good.

    Dermablend for bruises. My best pal. I go through a LOT of that.


    ANd when I was in school, I had a voice recorder and a program to pull that off onto my computer into text. Vocal typing for papers too. Very useful! But I remember the hand and wrist pain of trying to take notes until I got the system.

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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    Oh my goodness, I have Ehler-Danlos! I've never ran into someone else...now two someone elses.

    I have some mild cardiovascular complications, too.

    And I bruise super-easily. My knees always are covered in bruises from floorwork. Arnica is my friend, as is body make-up.

    I rarely have dislocations...toe a couple of times, but the five or so times I've popped a rib out of place are the freakin' worst. Pain shooting through my back, shoulder and side. Pain with every breath. I fell your pain, needtodance...literally!

    I've had a lot of success and relief from chiropractic care, both professional and self-adjusting with yoga and a Miracle Ball. Here's a description of Miracle Balls, from their website:

    Elaine Petrone was a dancer who badly injured her leg. She was told she might never walk again. So she went on a quest to heal herself starting with doctors and chiropractors, then with yogis and other bodywork professionals. In the end, she invented her own system of pain relief that not only worked to heal her leg, but also relieved stress and reshaped her body. Pain relief, stress relief, and a way to look thinner. Sounds too good to be true, but Elaine Petrone's miracle balls program really delivers. Her system has delivered relief to thousands of patients who have taken her classes in New York City, and now thousands more she is reaching through her work at Stamford Hospital in Stamford, Connecticut. Her work is endorsed by doctors and physical therapists there. The method is simple: Weight plus breathing equals relief. That is to say you put a ball under the part of your body that hurts, breathe (sounds automatic, but in fact most of us hold our breath most of the time), and let the weight of your body be absorbed by the ball. In a way, you can think of the ball as a magnet for anxiety and pain--the stress is sucked out of your body and into the ball as your muscles release their tension. This book delivers a complete program for relief all over your body from head to toe.

    I don't have any ties to the company or the lady, but I cannot recommend those things enough! Consider it at least.

    I have some luck with muscle relaxers, too, when I've dislocated something like a rib. The muscles tend to tense up after they're stretched or get mild tears from the injury. You might ask your doctor what he thinks about the idea.

    I was on hydrocodone (Vicodin) for about 6 months because of back pain. I have scoliosis, which is common with Ehler Danlos, and have had a spinal fusion of 11 vertebra. I had a desk job and sitting all day made the pain worse...probably didn't have a terribly ergonomic work area.

    Have you explored the possibility of physical therapy to strengthen the muscles around your major joints? Having good muscle tone around your shoulder and hip sockets can help keep things in place. That would probably help a lot with your shoulders for your pole work. I personally have to be VERY careful with strength training because my joints are so lax. I start out with teeny tiny weight to make sure I'm doing the movements in a way that works with my joints.

    When you dislocate something, anti-inflammatories (ibuprofen, Aleeve) can help reduce the swelling of the ligaments and muscles you've injured (you probably know that).

    I have trouble with writing, too...can't hold a writing instrument correctly (I got teased and harassed about that my whole life) and writing anything of any length makes my joints ache and muscles cramp up. I have to type most things.

    Ok, that's what I have for now. Hope some of that helps practically or at least in commiseration.

    *hugs*
    Art washes from the soul the dust of everyday life.

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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    Hyaluronic acid supplements. Get them at the health food store. Hyaluronic acid boosts your body's collagen production, and keeps the sinovial fluid in your joints nice and juicy. I take these each day. They also make your skin look awesome.

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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    I wonder if hyaluronic acid supplements help though, since the structure of the collagen our body produces is flawed. Suppose it can't hurt to have more of it, no matter if it's goofed or not. Good question for your doctor, needtodance.

    And update:
    In the 4 hours since my last post I dislocated two toes on my left foot. Motherfucker!
    Art washes from the soul the dust of everyday life.

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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    I'd consult a reputable doctor of naturopathy. Doctors aren't always up to speed on what supplements would be helpful, and usually are more into pushing pills for big pharma. A good naturopathic doctor may be able to offer alternative therapies that could be helpful in addition to your medications. Yoga may be helpful, too.

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    Featured Member needtodance's Avatar
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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    Quote Originally Posted by MissTopaz View Post
    Oh my goodness, I have Ehler-Danlos! I've never ran into someone else...now two someone elses.

    I have some mild cardiovascular complications, too.

    I rarely have dislocations...toe a couple of times, but the five or so times I've popped a rib out of place are the freakin' worst. Pain shooting through my back, shoulder and side. Pain with every breath. I fell your pain, needtodance...literally!

    I was on hydrocodone (Vicodin) for about 6 months because of back pain. I have scoliosis, which is common with Ehler Danlos, and have had a spinal fusion of 11 vertebra. I had a desk job and sitting all day made the pain worse...probably didn't have a terribly ergonomic work area.

    Have you explored the possibility of physical therapy to strengthen the muscles around your major joints? Having good muscle tone around your shoulder and hip sockets can help keep things in place. That would probably help a lot with your shoulders for your pole work. I personally have to be VERY careful with strength training because my joints are so lax. I start out with teeny tiny weight to make sure I'm doing the movements in a way that works with my joints.

    When you dislocate something, anti-inflammatories (ibuprofen, Aleeve) can help reduce the swelling of the ligaments and muscles you've injured (you probably know that).

    I have trouble with writing, too...can't hold a writing instrument correctly (I got teased and harassed about that my whole life) and writing anything of any length makes my joints ache and muscles cramp up. I have to type most things.

    Ok, that's what I have for now. Hope some of that helps practically or at least in commiseration.

    *hugs*

    Thanks... My sister has scoliosis, I have a curve in my lower back-makes me look UBERLY flexible(though I am that too) but nothing that severe enough to need surgery. I did have physical therapy for the hand pain, but this was before the ED diagnosis, so they didnt do anything except stretching and hot/cold stuff, which really didn't help. Its a relatively new diagnosis for me, and my mom has b een telling me NOT to go to teh doctor to look for any other problems it may cause, EI vascular stuff... since I already can't get insurance becasue I have irregular periods... any more "conditions" showing up and it'll kill my health care pretty permanently. I really want to know though-the fellow who diagnosed me specializes in hands, so I don't really know a whole lot about how ELSE it effects me, although I've made my own connections, with outside research and a pain journal. I take anti-inflamatories pretty regularely, but not for pain. I feel the same whether or not I take them-I get overdose woozy if I take enough to dull the pain, and even thats only a dull... Meaning probably 4-5 times the recommended OTC dose. So mostly I don't do it unless the pain is bad and I'm worried about the swelling. I'd like to bring up the muscle relaxers, but I don't know what the best way of dealign with this is, if its seeking treatment and risking losing my insurance, or what....


    Quote Originally Posted by ScarletPhoenix View Post
    I have ED. I've got moderate hypermobility and vascular complications. I have the same problems with working for more than 6 or 7 hours, lifting things, etc. I get the extensive and sometimes puzzling bruises. (Like the bruise I have right now on my butt cheek. It looks like someone tried to prison rape me and missed by 3 inches. Or shot me with a paint ball. It has little ruptured veins and everything and I don't know where it came from! I don't recall an injury.)

    Most of my painful dislocations occur during SEX! Some partners are insensitive, but the one I have right now makes a game out of it. When one position hurts, we move seamlessly to the next. We call it "around the world" because I usually end up spending a minute or three on every side of my body. Heh.

    The dislocation has only affected me once at work, and I've changed my style of floor work to avoid that happening again to my hip. I move very slowly and make that my style. almost like yoga from pose to pose to make sure i'm in alignment and not going to pop something out. However, I can't use the pole at all. At least not until I build the muscles around my shoulder and elbow joints.


    Even when I'm not hurting, I take an ibuprofen (and a big glass of milk, thanks to the tender stomach) before I work. It makes it easier to sleep when I get home, and I am not as sore in the morning. This helps a lot if I have to work two days in a row, though I can't do more than two. I tried three days once and had to take a week off.

    I'm sure you know all about heat, cold, bath salts, and stretching.
    heh, sex isn't a problem for me usually... particularely now that I got my IUD, more and more positions hurt THAT than hurt my joints... So we keep it pretty vanilla... I've built my muscles pretty well, and am strong.. I can do SOME stuff on the pole-my big problem is when I'm exhausted, wearing thin after doing multiple days in a row, I get careless and am not as careful nad engaged with the muscles as I need to be, and THATS when I end up hurting my self... The floorwork is my big problem... even trying to do kneeling stuff I find my knees hyperextending, and the kneecaps dislocating and getting jammed... Nowadays I do VERY little on my knees because i don't want the pain.

    Can we keep in touch, like a little mini ED support group? I got my diagnosis from the hand specialist, he said "stop playing piano and was much writing as possible I can't help you, here's teh spelling, look it up online" and thats ALLLLLLLLLLLLLLLLLLl the professional opinion I've had on this.

    I have seven years of dealing with the tendonitis outbursts though, and from my understanding, thats the treatment I can do to help...alternate heat/ice and anti-inflamatory meds. Just saw the dr today, and he said my shoulder pain was likely another tendonitis outbreak, heat, ice, some excersizes. I really hope I AM doing all that can be done for this though...

    I really WOULD like to get help wtih this, but my GEneral Practitioners have NEVER heard of it-i'm telling THEM what it is, from what I saw online... Its hard finding out where to start, and what IS and isn't related. For instance, not knowing if there's any organ damage becuase of it-I don't know if I just assume, as my mom does, that I have a "nervous temperament" causing my sensitive stomach. I went through college with other students thinking I was bulimic, because I was always throwing up. Too salty, too sweet, too stressed, someone touched my stomach or I laid on my belly the wrong way, and POOF instant puking reflex! I've had a lot of dizzy episodes and fainting, and randomly getting out of breathe. Is this because I throw up so much and need to make sure I'm replentishing my electrolytes, or is this somehow related, or a sign of a heart defect? I hate mysteries.

    It almost makes me wonder if my moms advice to not explore it more is HER not wanting to know if somethign IS really fucked up internally, beyond the "inconvenient" hand and joint pain, that I think she thinks I exagerate. It really does help seeing your experiences with it, and knowin that I'm NOT crazy, or making a bigger deal than it is...

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    Featured Member needtodance's Avatar
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    Default Re: Any other Ehlers Danlos girls? Or other joint problems?(long)

    Speak of the devil... I just pulled my shoulder out again just hauling my dancergear suitcase to an audition! Dangit! Urgh. Time for the hot bath and painkillers.

    on second thought though, the club accepted me, its a little different-hasno pole... so no temptation there... I wonder if it might be physically easier.. would be great if i could do friday and sunday at a big money club with teh pole, and do at least saturday, but possibly thursday at this club, it if didn't put the stresses on me the same... gotta see how it goes after my first shift wednesday!

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