Scoliosis

[Gypsy67]

is there a group for people with adult scoliosis and chronic pain

[ForViolet]

I did a search for "adult scoliosis support group" and found this:

facebook.com/groups/relentl...

scolicare.com/patients-scol...

There were some others listed there too.

[ForViolet]

This has info, but not a support group.

treatingscoliosis.com/blog/...

[alby54]

Hi, my partner has scoliosis, and uses the 'Scoliosis Support & Research community (Formerly SAUK group) ' Facebook group. Hope that helps

[Gypsy67 in reply to alby54]

Thank u I will try that. My daughter had the surgery with 2 rod placement at age 14 and now at 47 is in such chronic pain it cannot be controlled.

[alby54 in reply to Gypsy67]

My partner Suzanne's scoliosis with rotation was diagnosed when she was 11 (1967). At that time the only operation available involved bone grafts. Fortunately the consultant said the decision was hers. She asked if she would be able to ride after the operation, and was told 'no'. So as she loved horses the decision was no operation. She went on to work in racing yards and rode in point to point races. There have been pain issues of course, and she now has osteoarthritis and osteoporosis. But no regrets on her decision. Having seen the Facebook page, I believe that you will find help and advice. I hope things improve for your daughter.

[Luisa22]

Yes, I have some scoliosis, and I have pelvic misalignment and twisting, with the left iliac crest jutting out and higher than the right, muscle wasting on the left side and an oversized muscle on the right side, Plus one leg is longer than the other by over an inch.

I have chronic pain. It is worse after I get up in the morning, and can be sheer agony. I sit Japanese-style on my knees, with my lower back warmed by a fan heater, and that very quickly "un-seizes" things and stops the muscle spasms. Then after I've been to the toilet it feels much better. But it's at some level of discomfort constantly, except when lying flat on my back or sleeping.

I don't help it, I know, by my greatly active life, working on firewood and getting into weird positions when working outside. But we have to do what we have to do, and that's my life.

I have never actually tried a "duvet day" for it. I can't handle doing nothing all day.

It started 1997 after abdominal (gynaecological) surgery which was successful, but has got worse over the years, and I often wonder if it's related or not to my IBS D.

I don't take pain killers, but use deep heat rub when it's very bad, which helps. Or Tiger Balm.