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 disease can vary fro...
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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 put my finger out in my sleep and when i ent to the dr she said it was inflamed and i was to take an antinflamatory for a week but since i can't take these i came home and worked at it to get it back myself which i did.
Dr's don't understand when i ask them to help put some thing back in place thier first thing is pills pills and more pills makes me think they get a cut on the pills they prescribe. and with me i have a sensitivity to any kind of medication which i hear is because of the ED. who knows 
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And yes i hurt always some times when i get up in the morning i am so stiff i can't walk and yes smoking marajuana does work for the pain it loosens tight muscles and it takes away the nausea from when the pain gets so bad the dr figures i can take codiene when i tell him no i can't he gives me percocet for good ness sakes which is stronger than a t 3 which is 30 mg of codiene and makes me either sleep or be stupid for way too long but when i smoke it lasts 3 hours and that is some times enough to get me by the worst of it so i can manage my self on my own with the relaxation part of things. i am going to a clinical physicologist today who specializes in pain he figures he can help me so i am willing to try this.
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Pain is my middle name. Everyone at work thinks im taking the piss being off work.
Just been told that my job are looking to medically retire me. i have an unwanted fight on hy hand re the disability discrimination act. i need all the support i can get.
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I hear Ya and dont ever be sorry.
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I now know that i have a narrowing in the space between the bones in my knee. the Dr said it is degenerative bone arthritis.
I get an Mri some times this month we are just not sure when and what happens if they find something wrong on Xray?
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