by Lesli Hill, MS – Volunteer Coordinator, PAINS Advisory Committee
Cindy Steinberg is a woman with a mission to use her serious workplace accident as a catalyst for improving pain care through policy change, transforming understanding of the personal impact of pain in the medical community and helping individuals with pain move toward a life that isn’t defined by pain.
Cindy has so many impressive accolades and awards for her policy work in pain it would take this entire piece to list them all. She is currently the National Director of Policy and Advocacy for the U.S. Pain Foundation and Policy Council Chair for the Massachusetts Pain Initiative.
In addition to her professional roles, Cindy has run a chronic pain support group for 17 years as a volunteer. As a person who lives with pain, Cindy realized that pain policy doesn’t always translate to improving the lives of individuals with pain. Since 2000, the group Cindy founded has helped hundreds of chronic pain sufferers and their families find positive ways to manage their lives despite pain. The group has created a safe and supportive community that enables members to discuss the impact pain has had on their lives without judgement.
This dedicated group still has some original members, and always welcomes new members with open arms at their monthly meetings. Some travel long distances to be a part of this pain family. The group shares responsibility for tasks that keep it going and in seventeen years, they have only cancelled three meetings, all due to wintry conditions.
There is no doubt that Cindy’s policy work has had a positive impact on pain care in this country, but it is her dedication to this group and how it has improved the daily lives of its members that she is most proud. It is a piece of her legacy that creates ripples of hope for people who live with pain and those who love and care for them.
Dear Cindy:
I have for the past six month or a year started to go through scrutiny from my family doctor because I had been on a anti-anxiety medication for helping me sleep and tremors from a psychiatrist because I had been on both pain meds and pain medication at the same time . They flagged my insurance as being dangerous and started drug the same time. as a result my family doctor stopped prescriping my pain medication a s well as the psychiatrist lower my anxiety and meds that help me from tremoring and sleeping at night.
I really need your help. I have recently now started my first appointment at a pain management and would like to know if you have any suggestions. Also the also see that I am a pscy medication which helps a little but then put me in acategory that I am not treatable pain patient . please help if you have anysuggestion I would really appreciate your help.
Thank you.
Sincerely, Brenda
Have you ever heard of a Tarlov Cyst? I had the largest on record, the nerves escaped spinal cord and some outside and ate away sacrum bone. Some in a fluid filled sack that was close to bursting, if so I would have died. I had a risky surgery. I do take opioid meds. & other meds. President Trump does not know of nor understand my condition, I would be in bed unable to walk or have any life at all if my Meds taken away.
Hi
I am 45 and in pain 24/7 and don’t see a day in my furture where I will wake up pain free. In fact I see a life with more pain and less mobility. I am scared too death of this body that is failing me and a life like this that isnt worth living.
Pain sucks. Pain changes ones outlook on life and people. Pain is a cruel and debilitating.
Like many other pain suffering people afflicted with chronic pain life goes on but the pain comes along for the ride. Like life it must go on.
I have become a pro at tje fake smile and the “I am fine” when asked how my back is for the 100th time.
I take meds, physical therapy, a special back pilates class weekly, float in the pool, walk as much as I can and cry A Lot!
I works to get an inplant to spine to control pain and they want to lance nerves in my neck.
I am already fuse S1-T8 with diagnosed 3 failed spine surgeries.
I need a support group, human contact , and advise.
My dogs dont answer me but they sure are good snugglers.
Hi Nicole,
I live with pain as well and know of the importance of support. We have some information on groups providing in-person, telephone and online support at https://painsproject.org/aipm/resources/in-pain/find-support/ along with tips on how to find the best care and additional resources.