What is Ehlers-Danlos Syndrome
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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My body hurts so bad
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In the morning and evening, in particular, my shoulders, elbow, hips, knees, ankles and feet kill me. I can only go down the steps one at a time like a baby. I cannot run with my 5 year old daughter anymore. I feel like an ond 85 year old. I am on oxycontin 80 mg twice a day and a fentanyl patch 100 mcg every 3 days. That is prescribed for coccydynia pain and is not helping any of the pain. Do other people with EDS feel the way I do? What do you do for pain? I have also tried the Tylenol, Advil, and Aleve products with no help.
Posted on 08/05/07, 08:08 am |
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Wow, I'm sorry your pain regimin isn't working. My meds are similar to yours but at a much lower dose: 50mcg fentanyl and 250mcg actiq losenges for breakthrough pain. I find I'm in more pain the less toned my muscles are - so some kind of low-impact activity might help (deep water workout w/a buoyancy belt is my choice and I wear a wetsuit to hold my shoulders and hips tight while I'm moving in the water). But, also, I've had many years of prolotherapy treatments to my majorly loose joints which has helped reduce my pain and muscle spasms dramatically. Maybe you could find a skilled Osteopath to work on you and do some prolo on you - sports medicine doctors are more familiar with this technique because of the frequency of sprains sustained during sport activities. I also have Lidoderm patches to put on painful parts - but honestly I don't feel they help me much, but other EDSers I've spoken with swear by them. I hope you get some relief soon! - Mags 
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I have tried all kinds of pain relief and none of it has helped! none! It just makes me dopey and brain fogged and I can live like that! Besides the pain is just constant anyway.
My Dr (Proffessor Rodney Grahame - London) says come off all the meds as they dont always work on EDS. Sorry - I know it is not what you wanted to hear cos I didn't. 21st century and we can go to space but cant kill pain in a joint - go figure!
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