Journal Entry for August 5, 2007
August 5, 2007 12:11am
I was diagnosed with Classical vs. Hypermobility type Ehlers-Danlos exactly one year ago. I have chronic tailbone pain (coccydynia) for which I …
reisrn
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About Me
reisrn
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About Me
I am an RN in the recovery room and enjoy my job. I have a 5 year old daughter and a very understanding husband. My diagnosis is fairly new and I would like to find out other's expeerience as I do not know anyone with this diagnosis.
I am an RN in the recovery room and enjoy my job. I have a 5 year old daughter and a very understanding husband. My diagnosis is fairly new and I would like to find out other's expeerience as I do not know anyone with this diagnosis.
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Dear Reirn, I feel your pain. I too have a 6 year old and 4 year old. I feel li their grandmother at times. I can't explain to anyone what its like to be up all night with intense spasm and cramp and wake feeling like I wrapped in a tight net of spas, from low back to mid calves. One thing I have found is to lay still, before moving a muscle, thinking the action through. Visualize it moving smoothly. Then move that muscle very slowly and gradually. Try to do this in the area of pain or spasm. Of course, if your child is anything like me, she will have jumped you long before you finish!
I’m With You
I'm new here and I read your info and we do have several things in common, for one thing we are just too young to feel this bad! I'm so sorry that your child has been having so much trouble. I have 3 grown girls and I hate that they face some rough days ahead due to what I inadvertently passed on to them. Hope to hear from you.
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Thinking of you..must be awful hope they get you sorted soon.. I dont know what ive got but my skins gone funny, ive had a stroke, seizures, cant eat loads of foods foods without being ill..my skins gone all dry and wrinkly looking they think i may have a skin disease...
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Close Ehlers-Danlos Syndrome
I have recently been diagnosed with Ehler's-Danlos Syndrome as well as my 5 year old daughter. I have had to have my entire colon removed about 76 years ago for chronic (10 year history) constipation. My daughter just had a motility study today to evaluate her motility of her bowels as she is having similar problems. I also have dislocated (subluxated) thumbs that need to have surgery to reconnect better due to the pain. I also have severe pain in every joint in my body. Is this typical?
Treatments
- Heat Not Working
- I have severe pain in every joint in my body and wish to know if this is true of any other patients. If so, what helps? I also dislocated both thumbs and need surgery
