Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the ...
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It hurts, always.
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I've never posted here, so maybe I'm being selfish by jumping into a whiny post... I just need somewhere to vent where people get it.
Forgive me if I'm out of line. It hurts. It hurts all the time. It hurts in my back, my fingers, my legs, feet, ankles and toes. It hurts in the back of my head and my kneck. It hurts in my ribs. I went in for an MRI and they said everything was all nicely lined up and wearing just right... quite even and right. What they never thought to check (even after I told them there's a congenital connective tissue disorder in the family) is what that alignment looks like when I put weight on my feet. The MRI was for my left knee... you see, in spite of the fact that I frequently have trouble walking on it because the pain is too intense, there's nothing wrong with it! Clinically, I have a torn meniscus, but the MRI shows no damage. I'm going in for a second opinion. There's something most people don't realize till they can't use them anymore: shoulders are important. My shoulders go out of the socket when I throw... didn't start happening much till I was in my 20s, but it's pretty much destroyed most of the active parts of my life. I may get by for a little bit, a few throws here and there, but it catches up fast and costs me the use of my arms for a day or two. I bruise like a peach. I get bruises from backpack straps. BACKPACK STRAPS! Dear god. I get bruises from working out, too, just from the pressure that the barbell, dumbell, etc., put on my skin. Big, nasty, horrendous bruises that leave me looking like I recently got in a fight. I have 'rhoids and acid reflux. I've had 'rhoids since I was 16. Yes, 16. When did you ever hear of a teenager with hemorrhoids? I have lumps under my skin and when I lose weight (like I'm working on again now), the fat's not there to hide them any more and I look like a lumpy old beanbag. I'm told that as I shrink they should keep shrinking too because they're fatty... but I'm dubious. We'll see. I guess the one benefit here is that while I've sprained about every joint in my body (and apparently my left knee once too often), I've never broken a bone. w00t. Oh, wait... Drs. say you're better off breaking bone than tearing soft tissue. Damn. For a sec there I thought I had an upside to all this. Needless to say, I'm just beginning to figure out that I have Ehlers-Danlos. I haven't even had a chance to have a consultation with a doctor about it, but everyone in my mothers close family (from both her mother and father's side) have tell-tale signs of either Marfans or EDS. I suppose I have no chance. So I hope to get orthotics soon and I'll continue hitting the gym to strengthen the muscles to support the connective tissue... the only problem with that is the fact that by working the muscles I traumatize the connective tissue. Damn. I know there are things that can be done to offset the issues. And I know that all is not lost. And I know that others have it worse than I do. So all in all I have a lot to be grateful for, including your willingness to endure my whinge. Thank you for your time. Jared Posted on 03/28/08, 01:03 am |
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I dislocated my thumb peeling a potato - I know what you're talking about. A couple of things: backpacks are bad, bad! They put lots of strain on your shoulders, neck, and back, even when worn properly. I'm a full-time student, so schlepping books is part of my life. I've found it's easier to carry a small bag to hold small, unwieldly items and then handcarry the larger items. I'm actually not supposed to lift anything over 10 lbs, so a bag full of books is tricky. The rolling backpacks were just as bad for me as a regular backpack.
While EDSers need exercise, oftertimes weightlifting and resistance exercise of any kind is actually more damaging than helpful. The muscles are involved as much as the ligaments and tendons in EDS - they have their own connective tissues. Some of us have seen good results with things like Pilates, but without using the bands. And, oh, the rib pain. That's the one that has really sent me 'round the bend. I've found that to be more debilatating than my right shoulder, which is completely trashed. Yeah, we all have a lot to be grateful for, but sometimes whining feels good. 
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Rib pain as in subluxation, or as in just general rib pain? I get tons of pain in my back from subluxed ribs, and I have bad heartburn from pinched nerves in my back because of my rib cage.
It sucks... I have to say, though... thank you so much for commiserating with me. I honestly feel a bit better now. Nothing seems to soothe the jangled nerves better than the occasional whine session. ;)
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Don't know officially if I have EDS but have been diagnosed with Hypermobility when recently diagnosed with lupus. My fingers dislocate shifting gears in the car. Have to wear special support gloves to drive. Re ribs moving. Right now I have an elephant sitting on my chest that is probably caused by my ribs subluxing. Last year my chiro kept having to bear hug me (really ouchy) to get them aligned again. My pelvis shifts (which apparantly is impossible but tell that to the bone jutting out of my back). My right side tilts back and the left forwards. I couldn't do karate today as I hyperextended my knee and elbow with the stretches as I forgot to wrap my joints. Feeling rather sorry for myself today, so you're not alone in the moany department. My suggestion is to look for support gloves and things with mega padding. Add your own where needed. Re shoulders, mine sound like Snap, Krackle and Pop from the Rice Krispies have taken up residence. Nothing like grossing people out by having them feel you moving your shoulder. Take it easy Jared, and baby your body as you've only got the one.
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Don't know officially if I have EDS but have been diagnosed with Hypermobility when recently diagnosed with lupus. My fingers dislocate shifting gears in the car. Have to wear special support gloves to drive. Re ribs moving. Right now I have an elephant sitting on my chest that is probably caused by my ribs subluxing. Last year my chiro kept having to bear hug me (really ouchy) to get them aligned again. My pelvis shifts (which apparantly is impossible but tell that to the bone jutting out of my back). My right side tilts back and the left forwards. I couldn't do karate today as I hyperextended my knee and elbow with the stretches as I forgot to wrap my joints. Feeling rather sorry for myself today, so you're not alone in the moany department. My suggestion is to look for support gloves and things with mega padding. Add your own where needed. Re shoulders, mine sound like Snap, Krackle and Pop from the Rice Krispies have taken up residence. Nothing like grossing people out by having them feel you moving your shoulder. Take it easy Jared, and baby your body as you've only got the one.
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Thanks robbybird, you're right... it is the only one I've got. I am taking it's care and feeding more seriously. OTOH, it's cool to hear that other people do things like karate and driving a stickshift. :)
The discouraging thing is that it won't ever get better... those are the days when I just wanna cry (and in fact have). Even still, though, my cousin has MS and that's so much worse than this, so there's something to be grateful for even in this.
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just saw post (sorry for the lateness but i've been ill due to eds an a few other things) and i know what you mean about the pain, its horrible like someone is taking a knife and slowly cutting you up (sorry for the graphicness) any ways, i'm on a lot of pain meds and i have a few friends who also have eds some of them are on perscribed nicotics (sp??) and it helps but then you get addicted an so forth. i'm able to hold off those for now as i am sleeping with a heated blanket all through the year as this helps with muscle spasms and its just really nice, i also use tones and tones of pillows to help but i cant really suggest what you can do about the pain other then that an the pain meds.
my one friend kessa (not her real name) also has eds very badly and is sitting with a dislocated useless shoulder, its been out for about 14 months if not longer. every orthopedic she's seen has refused to help her except she might have some luck now. an the reason for this is because they think it will fail, i know this from lots of knee problems and lucky me i dont have that problem with my knee no more, yay (had my leg removed due to a severe bone infection). an no physio, infact physio makes it worse for kessa so she has nothing to help. she does a few things that help to a degree but not enough, she's been forced to do an extra year of school to finish it, she cant work because of her shoulder and varies other joints (ribs, hips, ankles, knees, fingers, wrists, spine, elbows and jaw and yes she has dislocated every joint possible plus torn tones pf muscles from doing everyday things, for example she took in a deep breath and dislocated 3 ribs and tearing both of her muscles in the front of the chest, very painful indeed). well i'm done my ramberling. i guess i thought by putting down what a friend and i are going through you might be able to relate and if you want to know more or have questions then ask and i'll do my best to answer. oh yes kessa has hypermobile but with different other types in to a degree, doctors are still working at it. an i have hypermobile X vascular, so i have lots of heart problems as well as the joints and muscles and legaments and tendons. xoxo jackie
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These are your autonomic nerves and much more that is going haywire...
It is caused by NERVES... mixed signals and short circuits Either Autonomic Nerves sending the wrong signal out - effecting small fibers - everything that your body does or suppose to do automatically without you telling it to do it.. I think that this site will help you with resources and links, not only on pain management but how others have dealt with it. We have over 70 images / photos for you to understand what is going on with hundreds of links. Click on this link here... http://dailystrength.org/groups/ne...
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God, i wish the doctors here in washington would understand. I have been trying to figure out what is wrong with me and it has now been clear that is is either Classic or type 3 EDS. The moment i met my doctor i told him that i smoke marijuana to help with the severe nerve pain (not sure if it is related to the EDS or laxity probs) their whole emphasis on my health care changed to that and right a way started to take me of the narcotics (which unfortunately are the only thing that helps the pain enough to the point i can fall asleep). I am not a thug, i just want to feel normal...The doctor situation here is a nightmare and i cannot do anything about it , it seems. I just want to cry, i used to be a great high school football player and now i can hardly work or go to college...what do i do?????
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Hey Jared - you sound like a perfectly normal EDSer to me. Sorry about that - it does suck. Check www.ednf.org 'cause they have some materials you can download to educate your doctors. I used to have a semi-annual MRI that of course showed everything perfect since I was lying down perfectly still and in alignment. Finally one year I turned my neck on the side and it showed that my cervical spine vertebrae would dislocate so severely that it made the disc between a couple vertebrae look like it was completely herniated (but it was just under so much compressiong it was only bulging, not burst). [So much for playing the violin from age 4 onward, made my cervical spine pure jello.] But, I see an Osteopath monthly that lines me up literally from toe to head and also performs prolotherapy on my loosest joints about every other month. It's helped keep me from undergoing surgery so far and has reduced my pain emmensely. I hope you find some release soon. Blessings to you, Mags.
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This is also an autonomic nerve disorder... AND neuropathy.
http://dailystrength.org/groups/ne... :)
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