Ehlers-Danlos Syndrome Support Group

That's one of my main complaints.

Thanks GenuineMystery!

I do also or did after MRI they saw I have cervical spinal stenosis which is common in eds patients

I have constant neck pain, I don't know why I never thought it was related to EDS. I guess I'll have to check that out. Do neck braces help anyone? I was given one over the summer, but I felt it just stiffened my neck more, and made the pain worse.

If I am leaning back and my head is back then I can't lift it up. I do have to make sure that I keep good posture, good body alignment or I get pain from stooping or slumping. I do some exercizes for my whole body, including my neck, some of them are exercises that belly dancers do. Massage and heat also help at times.

http://www.des.umd.edu/os/erg/neck....

http://www.youtube.com/watch?v=h5Mv...

Most people with EDS develop spine problems by middle age.

I try to keep my neck rested frequently, on a headrest, lying down on a pillow, or even using a palm under chin. I've never used a neck brace. At least one person has told me that using one often causes neck muscles to atrophy, and probably most people with Ehlers-Danlos Syndrome have weak neck muscles to begin with and in those with neck pain a tendency to spasm and stiffen up. Also, I do exercises similar to those on that webpage.

My father, who also had this, always made sure I was in good posture. I understand now that that was instinctive. If I start to slump I get more pain.

It's true that if a person always wears a brace somewhere, like ankle, knee, neck, that the disuse of the muscles may result in atrophy. If the brace is used only at times when those muscles are being used and might be otherwise strained it's fine and helpful. Also at times some exercises should be done to strengthen the muscles.

For example it could be like this: I sleep without the brace, do some exercises in the morning after rising, moderate stretches followed by light resistance exercises, have breakfast, go to work, and if the work involves tilting my head back or heavy lifting then use the brace, remove the brace at dinnertime, do normal movements without the neck brace if doing normal activity until morning again. Similar with knee braces and others. This is for people with moderate problems who are able to function without having dislocations happen veery frequently. Use the brace during activities that are likely to overstress that joint and leave it off during times that that joint is not so stressed.

Yes and it is probably my biggest complaint at this point aside from the brain fog and fatigue. I also had a recent surgery that removed 2/3 of the scalenes in my neck so the whole area is pretty traumatized though it feels the same post op that it did pre op. I've been going to PT for now 4 rounds to break through the tension and nothing seems to hold well. Sometimes the tension gets so horrible that it pushes my hyoid bone into my trachea and it feels like someone is choking me. That's the worst!

What are scalenes?

Do you use heat and massage on your neck?