Journal

I was diagnosed with Classical vs. Hypermobility type Ehlers-Danlos exactly one year ago.  I have chronic tailbone pain (coccydynia) for which I see a pain management doctor who has done numerous injection procedures on that area with no success in any relief of that area.  It is hard for me to sit for longer than 1 hour or so before I want to scream and get up on all fours, as I have done riding in  our van for longer trips.  I simply cannot do it anymore.  Well, the next thing I notice is swallowing problems with crackers and bread type food items.  It has somewhat resolved, but I had an appointment with a GO specialist as it was scary to not be able to swallow what I wanted to eat!  I had carpal tunnel release on my right hand and then susequently developed a subluxation and they found arthritis in my thumb joint.  The hand surgeon says that due to EDS, I cannot get the "typical" surgery where they perform a tendon or ligament transfer from the arm to tighten the thumb down (as they will likely stretch and loosen and not fix anything.  So, the surgeon is talking about a bone procedure to try to alleviate the pain and swelling in the right thumb.  I already feel the left thumb feeling that way and I haven't had the carpal tunnel release on the left hand yet.  That is scheduled for 8/20/7. 

Also, for the last 6 weeks or so, my body hurts from shoulders down to my feet.  The intensity is much more severe in the morning right out of bed and in the late evening as I get closer to bedtime.  I have to take baby steps down the stairs, one at a time, due to the degree of pain.  The pain is in my shoulders, elbow (I have tennis elbow in the left elbow also), hips, knees, ankles and feet.  The pain feels both like it is in the joint as well as in the muscle.  I cannot tolerate the NSAID"S as they bother my stomach.  That has been since they removed my entire colon 7 years ago (also attributed to the Ehler's-Danlos) because the elasticity and peristalsis of my colon disappeared.  I have a;so been placed on a fentanyl patch 100 mcg q 3 days and Oxycontin 80mg bid.  I am getting so frustrated and do not know how to piece all these syptoms together.  If that wasn't enough, my 5 year old daughter tests positive for Ehler's-Danlos also.  So far, she has bifocals due to one eye crossing and the dr. says they will correct the eye until she grows out of it in her adolescence.  SHe just had surgery to correct rectal prolapse from chronic constipation and now they are doing a motility study on her bowels.  Her GI doctor says there are no motility drugs out there as they have been recalled due to cardiac events in adults.  The only treatment would be monitoring it and possibly ending up with the same surgery I did.  God, I hope not! 

I was just wondering if anyone out there had similar symptoms to mine?  I went to a rheumatologist  this week I was so scared.  So far he has done lab.  Please, everyone share any similar experiences you may have so I will not worry so much. 

Thank you!