June 28, 2013 at 10:04 pm #475Lab-Scientist-LadyParticipant
I only recently found out I have EDS, and I have had back and neck pain since my early 20’s. I went to my PCP last week to discuss what I need to do about my EDS and how I can prevent my back from getting worst. She said there is nothing I can do. In addition to pain I have a curvature of my spine both forward and to the side. I can’t sit up straight and I have poor posture that others comment on, but I can’t help it. My rib cage also has a strange shape and is large for my body type and size. I have been told I have the beginning of degenerative disk advanced for my age. I have gone to PT for my neck and back and I sleep with a neck pillow and recently I added a neck brace. In addition to the neck and back pain I have severe tail bone pain. I am on pain management but, it helps only a little bit. I am at a lost for what to do or what type of doctor to see. There has to be a way to help relive pain and slow the progressions of degenerative disk disease. Any advice? Also, other family members have the hump back, degenerative disk, pain, osteoporosis, etc., and I see myself going down the same path. Thanks.June 29, 2013 at 4:06 pm #3848Dr. DianaKeymaster
Hi Hon, I think most of us deal with this to some degree. Sooo smart to use a neck pillow and cervical collar! I STILL wear a soft cervical collar at night-time (although I haven’t needed a hard collar during the day since the Diamox kicked in! Yeah!). I know of one patient/friend who had to have his tail bone pushed back into place (yes, it hurt to have it put back, but it was instant relief for him). I use a special pillow on airplanes or long car rides that keeps me from putting pressure on my tail bone. My son got it for me — it os a bendable long tube-like pillow, and I bend it into a U-shape, with the top of the U toward my tail bone. Can you picture that? Another simple thing to do is to sit on an exercise ball instead of a chair! I’ve done this for years. Now, I’m not saying it is EASY (ha), but it constantly works your core muscles, and back muscles to help. I was always a huge exercise fiend and worked on my posture daily — until I tore a rotator cuff. Yikes. But instead of lying on my side (encouraging my shoulders to curl forward), I always sleep on my back, elevated. HUGE help! Will you be sure to check you “free testosterone” periodically, too? If that gets low, we can lose (even more) muscle tone. I hope this helps! 😉
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