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Posted: 28 June 2013 10:04 PM   [ Ignore ]  
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Hi all,
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.

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Lab-Scientist-Lady smile
(Texas)

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Posted: 29 June 2013 04:06 PM   [ Ignore ]   [ # 1 ]  
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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! wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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