Constant neck pain

If you're like me, then you have constant neck and shoulder tension and/or pain. I ran across a video last night from the 2011 Chiari & Syringomyelia Foundation's Ehler's Danlos Syndrome Colloquium discussing EDS patients with constant body pain. As this group had also discussed Chiari earlier in the day, and pointed out that Chiari patients also experience this constant pain (in their necks, shoulders, and backs), I felt it was appropriate to share with everyone, if you've been diagnosed with EDS or not.

I would love to hear from members who have personal experience with dry needling, as it sounds like it's an effective therapy for the continuous muscle constriction EDS patients experience. One of the recurring problems I've heard about physical therapy for Chiari patients is that the muscles in the neck, shoulders, and back are very tight and contracted, and when a massage therapist attempts to massage that area, it can actually be very painful, and the muscles never really loosen up. From what Dr. Jan Dommerholt says, the dry needling disperses the muscle knot, allows the oxygen to return to the muscle, and clears the chemicals involved in the inflammation and pain. As a caution, he also says that dry needling is only the beginning of a regimen for EDS or Chiari patients, as the body creates these tension bands to assist with structural problems, and as soon as you take the support away there can be an instability issue in the neck.

I really like what Dr. Dommerholt has to say though...he explains a common problem with seeing a physical therapist is being told you need to strengthen your muscles no matter the pain level, and that until you are physically strong the pain won't go away. His standpoint is that the pain needs to be removed, and then the muscles can be strengthened.

Dr. Dommerholt works in conjunction with Dr. Henderson in the Bethesda, Maryland area. Here is his website:

And here is the video from the 2011 conference:

Thank you Mandy,as I write this I am having terrible neck and shoulder pain and it is getting worse each day.I have not heard of dry needling and I do not know if is available where I am in Australia.I too have a connective tissue disorder and I dont know which is causing the pain.Probably both.How bad does it get before presenting to emergency and does that do any good because of their lack of information?Anyway, I think I am having a really bad day and just need to vent.Thanks for your information I will look carefully at it.

Thanks for Sharing. I can't wait to watch the video.

I do know not all PT's are equally educated to treat Chiarians.

Peebles husband is a PT and I have asked her to ask him questions before. I hope she and he weighs in on this issue. She also has EDS.

I didnt like phys therapy. He hadnt treated chiari ever and caused me pain by touch. I refused to do any exercises and sat there staring at him for two three more visits until he gave in and admitted he couldnt treat me, cause i couldnt do any excersises. Needling, or Acupuncture is very effective for chiari and our other ailments caused by it. Like fibromyalgia. Go to an Omd

When I had therapy for my shoulder early this year, my therapist tried a few different thjngs. We found the wet heat really helped if I put it on before doing any stretching. I have a heating pad that came with an aquifer that I use (sadly my husband accidentally threw the aquifer away) and it helps. I dont get the wet heat without the aquifer but you can check into getting one to try. The heat really does help me when my neck is really tight and sore. I then let it cool down before putting arnica gel on it. I also massage my neck and shoulders as best as I can since doing it myself lets me have minimal pressure but still be effective. good luck getting some relief!

pt makes me worse i have fibromyalgia along with degenerative bone and disc disease in my spine esp. in the cervical area. Any pt makes it all worse for me. good luck everyone

Mandy, you just helped me a bit. I have been trying to find info about the flexion and positional MRIs as I have never heard about that. I woll be checking that link out tomorrow. And yes, definitely try using the gel once the heat has gone. It may not take away all the pain but it may help enough to be somewhat comfortable.

Boy, if any doctors ever believed that symptoms would be similar in all patients we would certainly be proving them wrong! Lol

Seeing as I cant get comfortable today because of my back, I can only come in here for so long today. I hope you all have a decent week and hopefully a little less painful!