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ehlers-danlos syndrome

Posted In: Medical Stories 14 Replies
  • Posted By: Anonymous
  • June 28, 2007
  • 06:51 AM

I'm 16.
I've always been active in sports, etc,but was diagnosed with scoliosis at 12. Since scoliosis doesn't cause pain apparently, it took several doctors and a different hospital to discover the real cause- Ehlers-Danlos Syndrome, hypermobility type. It causes weakened joints, etc, and reasonably explains my pain.
However, two or so weeks ago, the pain was so severe that i had to be hospitalized and given several narcotics to eliminate it. I didnt recover for two weeks.
Does anyone else have this disease or know anything that can eliminate my near-constant back and knee pain? I'm willing to try anything at this point. I feel like I'm wayyyy too young to be in pain all the time.
thanks so much!

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  • My 9 year old daughter was just diagnosed with HMS. She really suffers with pain in her feet. I can;t really find any help for her. The docs just say to take advil. If you get any answers from your docs please let me know. Good luck!Momof3girls
    momof3girls 1 Replies Flag this Response
  • You probably have a problem of the collagen- you need extra vitamin C, A naturopath doctor, and a NAET or Bio-set doctor.Best.
    Eatafruit78 960 Replies Flag this Response
  • I have a very severe form of the Classic Type of Ehlers-Danlos Syndrome & have been affected/ effected by its multitude of manifestations my whole life.To be perfectly honest with you, the last thing you should be doing is any kind of sport activity. This I only tell you b/c I am now (just turned) 42 & paying a hefty price for all the stupid things I've done - especially w/ sports that put undue/ unneccesary stress, pressure, weight on my already fragile body & joints. The pain you are experiencing now is most likely a 'hint' that your body is saying = slow waaay down/ back off whatever you are doing. Some people might bash me for not sugar coating it, but I will tell you exactly how it is with this disease - for most of us that have it. Ever since I was a kid (younger than you), I had similar bouts to what you describe - as I got older, they got worse & more frequent (really kicking in regularly w/ more severity since I was 14). Then there were times when I felt relatively ok & took advantage of it (intentionally ignored my EDS) by doing stupid things like 'normal people' - like skiing, snowboarding, waterskiing (& most stupid thing - barefoot waterskiing). Though there was always pain to follow, I sucked it up & lied to myself saying it was just muscle pain from whatever activity I did for the day - rubbed on the Bengay, used the heating pad, hot bath & looked for the Tylenol. I was always super independent & did everything for myself (including moving/ lifting heavy things to name a few). Then there were times that I did nothing at all & it didn't matter one bit - my body was already on a roll w/ pain, dislocations, subluxations, etc., my activities didn't exactly help & realistically, just helped to speed things up to end up where I am today = completely disabled.Though I knew I would eventually end up where I am right now (w/ progressive degenerative SPINE disease, joint disease, etc. & everything that goes with it) I justified it in my mind by saying that at least I did something before ending up in a wheelchair someday. Though I haven't reached the wheelchair yet, I have to use either a walker w/ wheels or 2 crutches to get around , all manifestations are inoperable = the rest of my life stuck on heavy duty pain meds (morphine based narcotics) due to constant blinding pain & am completely dependant upon other people just for my daily living needs . You have a rare, degenerative musculoskeletal disease & though you shouldn't stop living life - you need to be aware of it at all times & make proper adjustments as not to bring on any damage that hasn't happened yet - especially you being hypermobile.I'm not trying to scare you, but I really don't want to see anyone end up like me - especially if you could help it at such an early age. They say prevention is worth a pound of cure, right? Well, Ehlers-Danlos Syndrome has no treatment/ no cure - other than to manage all of the symptoms pain - so why push yourself there faster than need be? Things do get worse as you get older, but if you take super good care of your body now, you could be one of the lucky ones that don't get as bad.EDS is a funny thing, though you may be true to your 'type' - each individual is different in the amt of severity, onset & sometimes cross symptoms.For me, personally - the list of manifestations is longer than my long arm ;-) Medications (especially pain & also anaesthesia Rx) effects us different from normal people - we require more since it is metabolized at a much higher rate. If over the counter pain killers work for you, all the better (FYI - do not take Aspirin w/ Ehlers-Danlos Syndrome, as it increases our problem w/ excessive bleeding)Be smart & take care of that body! Though I know it might stink not to be as active as others your age, there are still plenty of cool things to do!Also find a good doctor that is very familiar w/ EDS (very hard to find), but join EDNF.org to access their list of drs. in your area & especially, find yourself a good Geneticist to reconfirm your type = VERY important!!! There are a LOT of regular/ non specialized drs. that say they know EDS & really don't! After my 1st dr. retired, took me literally over 20 years to find one to replace him! I go to UCONN's Musculoskeletal Institute & also Dept of Human Genetics (Dr. Petros Tsipouras is a world reknowned EDS specialist)
    Anonymous 42789 Replies Flag this Response
  • I have ehlers-danlos type 3... which makes it a right royal pain for me to do some strenght based stuff like pushups... For a start, the weak connective tissue means I have weak muscles... secondly I'm a girl, so naturally am at a disadvantage and thirdly... I have longer limbs proportionally than normal... and forcex distance = a lot of torque and stress at my joints! However, I've been lucky that I was diagnosed early and I have a very healthy and active lifestyle... I really take care of myself, I'd be in a lot of pain otherwise, and I'd know from experience. I used to suffer a LOT with "growing pains" in my knees, i mean my knees were incredibly tender to the touch and the school desks we had had this metal bar underneath them and if my knee touched that I'd howl and disturb the whole class! After that I had some intensive physiotherapy which really helped, they strengthened up the entirety of my knee through at first gentle stimulation including the use of ultrasound...which made my leg twitch!Last year I nearly let myself slip in to a state of disrepair, my healthy active lifestyle dwindled significantly, but as soon as I started to eat better, and I mean cutting out on a lot of fat, and replacing most of the remaing fat with healthy oils, and exercising more the pain went and i was back on my 2 feet. I also got some proper arch supports for my feet which made my ankles stop rolling in and therefore my knes acting in strange ways... this really helped and now I'm a new person. Currently going to the gym for an hour and half 5 times a week... i do a bit of cardio... about 30 mins, avoiding treadmills mostly because of the stress it has on the knees, but cycling is BRILLIANT for my knees and so is the rowing machine and x-trainer. I do lots of strength training too and use a powerplate/vibrogym which are amazing.Pushups are a sign of overall good health because they engage so many muscles, also if you were to fall the body would act in this way generally to cushion the fall and protect you. I couldn't even do one when i stearted out 10 weeks ago...now I'm on sets of between 8 - 10 for about 3 sets.If I were any of you with ehlers-danlos, I'd seek aprofessional physiotherapists advice, but I know mine was brillinant, she manipulated my back so that each vertebrae moved individually and now i can really feel it, i have a slight scoliosis as well, and one leg slightly longer than the ohter, but I'd say i dont look strange because of it... The key is to maintain your muscluar-skeletal health as much as poss, its harder work for us because we are naturally weaker because of our collagen type III deficiencies and some other collagens too... but if you feed yourself a gram of protein for every lb you weigh and have a healthy supply of vitamin c in your body, you WILL notice differences... I have... Its hard work, but you'll love yourself for it... plus you'll keep the lbs off you too! I take other supplements to promote joint helath such as glucosmaine, chondriotin and cod liver oil and collagen type i and ii, but id say the majority of the results come from my time at the gym. I have greatly enhanced my core stability with the use of strength training, resistance training and stability ball work and in addition my kinetic control.Try it!!!Val
    Anonymous 42789 Replies
    • February 9, 2009
    • 00:36 PM
    • 0
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  • I'm 36, and was (FINALLY) Dx'd 2-3 yrs ago with EDS, Classic Type. I think I can help explain a likely source of your pain, at least the concept. If you're as hypermobile as me, you may also have problems with with fallen arches (if only because the arch is too flexible). This causes over-pronation in my feet, and basically it causes my ankles,knees, hips to be mis-aligned w/ each other, and even causes me to curve my lower spine too much, causing more problems there. So basically, if you start off with a wobbly foundation (feet/ankles) it can cause knee, hip, and back pain.The same idea can happen when you're fingers, hands, and/or wrists are too lax, and you end up stressing these joints where they wouldn't typically get stressed. (For instance, my index and middle fingers are drifting to the outside, curving toward my ring fingers.)Here are some links that will explain it better =)Over-pronation:http://www.heel-that-pain.com/pronation/over_pronation.phpFoot biomechanics, pronation, ect.:https://www.northcoastfootcare.com/footcare-info/foot-biomechanics.htmlOver-pronation can also cause "Iliotibial Band Syndrome":http://www.sportlink.co.uk/iliotibial_band_syndrome.phpHaving lax joints can cause a LOT of chronic pain, too, in some EDS folks who show no clear sign of why on X-Rays, MRI's, ect. But the pain is still real and needs to be treated.I hope this helps some hun!Barb T.
    Anonymous 42789 Replies Flag this Response
  • My 9 year old daughter was just diagnosed with HMS. She really suffers with pain in her feet. I can;t really find any help for her. The docs just say to take advil. If you get any answers from your docs please let me know. Good luck!Momof3girlsHi. I am 31 and have ehlers danlos classic form. You should have your daughter see a Rheumatologist. Ask you doctor for a referral. A Rheumatologist specializes in the joints and joint pain. Also swimming and using light stabalizing joint excercises in the pool should help- up on her tip toes and down and just swimming in general. The water is very easy on the joints. You should also look into orthotics for her and have her wear shoes in the house too. People with ehlers danlos have very flat unstable feet, orthotics will help to correct it. At first it can be a bit painful but eventually it takes the pain away. She is also still growing. When I was her age, I would sit on the couch and cry in my grandpa's arms after a long day of playing -- a warm bath, foot rub and heating pad or ice pack always helped me. Try these little tricks for now until you can see a rheumatologist. I hope you find some answers and she feels better soon. Please do not misconstrue as medical advice, I am just a patient of ehlers danlos
    Anonymous 42789 Replies
    • August 14, 2009
    • 01:44 PM
    • 0
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  • Im pretty freaked out reading all this Im 26yo male and played alot of high level jnr sport (baseball Cricket) and upto 20 years oldand was always in pain and seeing the physio for ankles groin knees elbows shoulders and just thouight it was normal till I was feeling just as bad when stopped playing and and work would be just as bad (builder) till I was 24 and told by doc I had ligamentous laxity or maybe light case of ehlers danlos and not to worry just give up any contact sports. Im back playing Aussie rules footy which is full contact and I can barely walk the next day and I dislocated 2 ribs up around my chest the last game which was ***l. All I have ever been told was to build up my muscle to strengthen around my joints which is all good and well but after 2 or 3 weeks at the gym Im sore real sore and normally there is one thing ie: elbow shoulder the is real basd and feels like I have dislocated it when haven't. I dont know if I have EDS but every joint and I mean every on my body cracks\pops like when people do there nuckles do I need to go see a eds specialest? or have I just got the loose liagaments and going a bit hard for my build 5"7 70kgs 154pounds? or am I a little sook?
    Anonymous 42789 Replies
    • September 4, 2009
    • 08:15 AM
    • 0
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  • I'm 14 and have just been diagnosed with Ehlers Danlos Sydrome. For your back pain ( a problem i suffered to a huge extent) massage chairs are useful if affordable but also memory-foam matresses help a HUGE amount. if you get the massage chairs make sure they have temperature control for maximum sucess. I recommend yoga and pilates over swimming as swimming hurt my knees more. I am sorry i couldn't be of more helpAbbyxxxI'm 16.I've always been active in sports, etc,but was diagnosed with scoliosis at 12. Since scoliosis doesn't cause pain apparently, it took several doctors and a different hospital to discover the real cause- Ehlers-Danlos Syndrome, hypermobility type. It causes weakened joints, etc, and reasonably explains my pain.However, two or so weeks ago, the pain was so severe that i had to be hospitalized and given several narcotics to eliminate it. I didnt recover for two weeks.Does anyone else have this disease or know anything that can eliminate my near-constant back and knee pain? I'm willing to try anything at this point. I feel like I'm wayyyy too young to be in pain all the time.thanks so much!
    Anonymous 42789 Replies
    • November 19, 2009
    • 07:03 PM
    • 0
    Flag this Response
  • I'm 16.I've always been active in sports, etc,but was diagnosed with scoliosis at 12. Since scoliosis doesn't cause pain apparently, it took several doctors and a different hospital to discover the real cause- Ehlers-Danlos Syndrome, hypermobility type. It causes weakened joints, etc, and reasonably explains my pain.However, two or so weeks ago, the pain was so severe that i had to be hospitalized and given several narcotics to eliminate it. I didnt recover for two weeks.Does anyone else have this disease or know anything that can eliminate my near-constant back and knee pain? I'm willing to try anything at this point. I feel like I'm wayyyy too young to be in pain all the time.thanks so much!So sorry that you have this terrible condition.First thing start searching for Doctors who knowabout EHLERS_DANLOS SYNDROME this is the worst part of it is finding doctors that arefamiliar with it check with Johns Hopkins my grand daughter has battled this thing for 30 years took her first 10 years for it to have a name.That came from Johns Hopkins. be very careful about overdosing when you are in so much pain. She is to old for it now but we have hopes of stem cell replacement for you young people who suffer with EDS. good luck GOD BLESS
    Anonymous 42789 Replies
    • November 23, 2009
    • 01:27 AM
    • 0
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  • I would suggest going to a Rheumatologist and possibly being tested for EDS by a geneticist. I wasn't diagnosed until after 6 shoulder surgeries failed...now have had 35 on my left shoulder alone, and am close to losing the entire arm. I've got massive ankle surgery pending in March, too...Starting on another joint is very frightening, but very necessary for me at this point. I need some stabilization of this ankle, just to walk! Although there is no treatment and no cure for EDS, bracing and surgical procedures (only as needed) are our only hope. Just make sure, if you do in fact have EDS, that you see a specialist who is very well educated/researched in EDS. They're hard to find...I live in Central IL, and travel to Denver, CO for all medical treatment. However, it's well worth it to have docs who understand, and who are still advancing EDS research. I have total faith in these guys, if you need names just let me know. Hope this helps!
    Anonymous 42789 Replies
    • December 2, 2009
    • 02:52 AM
    • 0
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  • I have an adopted daughter who is 18. She is developmentally delayed and has a mood disorder. She has complained of joint pains (everywhere) for years. 4 years ago she got so bad she had to use a walker for a few months. Then she suddenly cleared up and was able to walk normally again. But she has continued to complain about wrists, knees, ankles, back etc. About a month ago she started with severe pain in the left big toe which quickly spread to all of her joints. Now 4 weeks later she is in a wheelchair. I'm frustrated because she is not being taken seriously. Some of her teachers at school think she's faking it for attention. And I admit she is a drama queen. ......But the more I read about EDS the more it fits. The doctor(an Internist) is calling it gout even though her uric acid levels are normal. She does bruise easily and has long QT syndrome. She is in severe pain that is not respond to naproxin and vicodin. I can hear her joints crack all the time. She says they feel like they are popping out of place.She always feels cold. Her xrays are normal. We've been through the route of neurologist, rheumotologist, CAT scans, MRI before. But I guess we need to start this all over again. I'm glad I found this board. i don't feel so alone in this.
    Anonymous 42789 Replies
    • December 5, 2009
    • 01:32 PM
    • 0
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  • Hi,I was diagnosed with EDS and autonomic dysfunction about 2 years ago after 20 odd years of worsening pain, random fainting, always walking in to things, bruising, injuries etc etc... Probably quite similar to the rest of you. :o) Its quite weird to hear the diagnosis. You are both releived because it answers so many of your questions... But it's also a pain in the arse when you realise that there really is no cure for EDS. I'm not a big fan of sugar coating things either. There is no cure. Nothing will ever make this go away because it is in your genes and a fundamental part of who you are. That isn't to say that there is no treatment for it... Your body knows better than your brain does. Pain is your bodies way of telling you something is wrong, so listen to it. If you ignore it and you do yourself a severe damage then its going to be a bugger to heal. :o) I am also a big hypocrite. I do all of the things that I am telling you not to do, because life is there to be lived... But I also know that every time I push my body too hard I am a little bit worser for it. Any sort of contact sport or any sport that puts too much pressure on your already weak joints in a NO! You can do it now, but you are going to pay for it big time later on... I know it sucks but really you need to consider that your body cannot heal itself in the same way. Physio is your best friend. Exercises that strengthen the core joints and muscles can be non-invasive and a life saver. And the shoe inserts... I laughed when I first had them and I kept falling over but they put everything back where it should be and I'd never realised. My one big thing... ESPECIALLY if you are young... Try and stay away from the painkillers if you can help it. They don't help you long term... They can only mask the pain for a short while until your body becomes resistant to them and then you need something stronger. Take care of your body and it will last a while. :o)x
    Anonymous 42789 Replies
    • December 30, 2009
    • 00:42 PM
    • 0
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  • I'm 16.I've always been active in sports, etc,but was diagnosed with scoliosis at 12. Since scoliosis doesn't cause pain apparently, it took several doctors and a different hospital to discover the real cause- Ehlers-Danlos Syndrome, hypermobility type. It causes weakened joints, etc, and reasonably explains my pain.However, two or so weeks ago, the pain was so severe that i had to be hospitalized and given several narcotics to eliminate it. I didnt recover for two weeks.Does anyone else have this disease or know anything that can eliminate my near-constant back and knee pain? I'm willing to try anything at this point. I feel like I'm wayyyy too young to be in pain all the time.thanks so much! im 21 and i was thought to have it when i was about 11 when my dad was diagnosed. but i was officailly about two years ago.i have been where you are.. i am way too young to be in pain like this and i still feel that way today. i have had three knee surgeries, three wrist surgeries, and now recovering from shoulder surgery. my first one was when i was only 14. i had to quit every sport in highschool. it was the best thing for my body. if i had continued i would probably have had way more surgeries by now. i havent found anything that has "eliminated" my pain yet. and ive gone to countless doctors, tried so many pills, and physical therapy never does the trick. any type of exercise need to be low impact. you will definitely want to see a geneticist so they can further help you. thats what i did. as for sleeping you do NOT want a memory foam bed because it actually causes stiffness with your joints. you'll want a more firmer matress.
    Anonymous 42789 Replies Flag this Response
  • I'm 16.I've always been active in sports, etc,but was diagnosed with scoliosis at 12. Since scoliosis doesn't cause pain apparently, it took several doctors and a different hospital to discover the real cause- Ehlers-Danlos Syndrome, hypermobility type. It causes weakened joints, etc, and reasonably explains my pain.However, two or so weeks ago, the pain was so severe that i had to be hospitalized and given several narcotics to eliminate it. I didnt recover for two weeks.Does anyone else have this disease or know anything that can eliminate my near-constant back and knee pain? I'm willing to try anything at this point. I feel like I'm wayyyy too young to be in pain all the time.thanks so much!I wish I could tell you that you are too young for all the pain you have to endure! I was diagnosed with Ehlers-Danlos Syndrome when I was around 30. Before that most doctors said it was 'in my head.'The best thing I've found to relieve the pain is a jaccuzi. However they can be hard to come by, so there are a couple other things you can try. The most important thing I've learned in the last 14 years is to try to avoid over-extending and also try to cut down on the frequency that you use your joints.I know that sound rediculous! But it can actually be a little easier than one would think. First try getting one of those "reach extender" or aka "grabber" like people in wheelchairs use. They can help a great deal more than you may think!There are some other things you can try. One thing is the plain, old-fashioned, ice pack. There are 2 products sold that I know can help. They are both applied to the skin; one is labled "Icy Hot" and the other is named "Ice." They are sold at almost any pharmacy, many major grocery stores, and most major department stores (ie Shopko or Walmart). With your knees you should always elevate them when they swell. At times I'll elevate them when they hurt without swelling. Sometimes it seems to ease the pain! You might also ask your doctor if a brace of some sort might help. That will most likely depend on exactly what is causing the pain, and if they even know!My knee pain is caused by a couple of different things. My knee caps move diagonally toward the outside of my lower leg when I bend my knees, and my knees also bend "sideways" and "backwards" at times. Most doctors have told me don't kneel, avoid stairs, avoid repetitive motion and also avoid anything that will cause my knees to bend beyond 30 degrees (that's almost straight)!Those restrictions make me avoid stairs and keep me off of bicycles. When I need to get something off of the floor or a low shelf I have learned to keep my knees straigh and bend at the waist. Those times I do kneel down I always try to find something above me safe to use as a grab-bar so I can pull myself up. That helps aleviate some of the stress placed on my knees, and therefore some of the pain.I have also learned that I usually won't feel the pain right after doing something (eg kneeling) that I shouldn't have done. Usually I won't feel the pain from the offending action until the next morning. Sometimes I will be slightly sore upon waking the next morning but the day following that (2 days after action) I will be in extreme pain and may even require assistance to get out of bed.As far as your back goes, there only 2 pieces of advice I can offer you. The first is simply this: when your back hurts, lay on your back on a carpeted floor. I usually place a thick blanket under me and stay like that for 20 to 30 minutes. During that time I will maybe try a couple of leg-lifts, or even maybe a couple of sit-ups (girl style with knees bent and arms folded across my chest). I will usually spend that time doing a crossword, reading or just watching TV. The most important thing about the experience is to relax! I usually won't feel a difference until after I get up and move around. Sometimes I don't notice any difference that night. Then the next morning I'll wake up without a backache for the first time in days on end. The second piece of advice may be difficult to accomplish at your age! That's because it involves replacing your mattress with one more suitable for your back. Mattresses are not only expensive it can be quite difficult to find one with the right firmness and yet soft enough to avoid putting pressure on your joints. For me the solution turned out to be a firm pillow-top mattress. Then a 4 inch thick memory foam pad was purchased separately and used on top of my already expensive mattress. No one of the things I've told you help me llive pain free, nor do all of them combined. However, they do ease the pain and make life easier to live! Hopefully you are able to find the right combination of treatments and/or assistive devices to ease your pain and make your life easier!!!
    Anonymous 42789 Replies Flag this Response
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