Your friends in Washington by and large don't give a damn about the situation in which we find ourselves. They have accepted the myth that people are being addicted to opioids by their doctors. They're ignoring the fact that most of these addicts got addicted cuz they use their pain drugs to get high. I've known a lot of addicts I've never met one that wouldn't have an excuse for why they were addicted other than themselves. You have to meet this problem on the ground where the battle is taking place. If your medical providers will not deal with your condition of pain and offer realistic Solutions then you have to keep demanding that they do that and if need be you have to take legal action. If someone is trying to take away your medicine, you have to tell them, you recognized that I had a problem with pain before this and you know that I still have a problem with pain, what do you intend to do about it? Don't let them Bake Off don't let them send you somewhere else. Put your foot down and demand.

Hello Brian, reading your post I was happy to hear about starting a group large enough to go to Washington. I have Adhesive Arachnoiditis. I have called my Senators, Congressman, Dept. Of Health. Remember, we were not born with this, it was given to us by many doctors. For a better name, most call it, "Failed Back Syndrome" " Failed Laminectomy" therefore, no responsibility, DOCTOR. I would like to go to Legislate a Bill. Worded?? Stating, Neurosurgeons, Spine Surgeons, Pan Management Doctors must inform in writing the serious and life changing events that could happen during surgery. It would be nice to have Pro-Bono Attorneys? I don't know the statistics but on this site there are many and around the world. Read the beginning of the Burton Report and others. When I had cancer I had hope, with AA a very different story.

Hello briansr, I too have severe chronic pain, Adhesive Arachnoiditis. Severe damage to the spine, nerves and more. I have been trying to get some attention in the field of rare diseases. "NORD" is a good place for people to start. I contacted NORD for help contacting the right people, they told me about Acting FDA Commissioner, Norman E. "Ned" Sharpless [last name has a ring to it] He was a keynote Speaker this year's Rare Diseases & Orphan Products. He is a physician and scientist. He will be going to Washington this fall for a 2 day discussions, advanced tech., rare diseases. I will be contacting him in hopes he can guide me in the rt. direction for opening the door to the right people in Wash. NORD is a great site if patients need information or help. My experience has been a positive one including always emailed a reply. If a group of us and others you may know can join the fight to get to Washington, DC..

Brian and all: Right now, the states are all making different laws about medicines, so our governors are the people to write to. We can't let politicians continue practicing medicine without a license - they are botching it. I commit to writing to 2 governors this weekend, asking them to help real patients get medicine - and I will address envelopes, put stamps on them, and take them to the post office. It's not enough for me to compose a letter on my computer then not get around to sending it. Peggy

I have horrible peripheral neuropathy pain from my toes to my knees. I can no longer walk. A couple years ago my so-called pain doctor took all pain meds away from me and all his patients due to the “Opium Crisis.” Now what? All of us are being punished because of a few druggies who want to kill themselves. Many chronic pain sufferers have killed themselves due to the pain. Any suggestions for pain relief?

Hello. My name is Thomas and I have just been discussing ideas with my wife to help others. Creating a book to aid people is a great idea. Amazon has a self publishing section that I have been researching. A collaboration would be great and beneficial to not only us, but a lot of others as well

Can never have too many friends. Especially one that relate & truly understand how each other feels physically and emotionally. It helps. One thing I did with my PCP who said she was trying to understand what I was trying to express, was to ask her to go to Inspire.com & LISTEN to our voices on every illness she would look up. (I hadn't found all you wonderful family at the time.) Next time I saw her she said it had changed her & now she 'sees' a person rather than a patient & really listens now. She is a beautiful young lady this old lady hopes to never lose. We can help our willing drs become better drs if they'll take the time to listen to our voices at sites like here. I think inviting them to read our voices might help some of their minds open to & not just treat us out of a book

Respect your position and beliefs.
I believe we all need to own our problems and be accountable for our own health.
Being on 10 drugs and chronic migraine sufferer, stents, stroke, pad, severe spinal stenosis, hardening of the arteries and recovered from a coma like state 2.5 months with new challenges. It has been an uphill battle and yes I get down especially when I can’t sleep.
Scott Peck, a psycho analyst, wrote in “The Road less Traveled” 30 years ago; life is difficult, life is constant problems, life will always be challenging; when you understand, accept and truly embrace this concept life becomes easy!
I choose to not be a victim.
Dealing with chronic Paine require faith!
He is your constant friend and helper in those dark moments. I always ask Him for help and think of him on the cross suffering for me. It helps me get through while praying the Rosary.
I will pray for you all who suffer that you may find him in your hour of need. He is waiting for you.
May he be with you
Tony
It’s going to be ok!
He is with you and for you and has a plan for you. This is your test to help you find him.