Today I received an email from the U.S. Pain Foundation uspainfoundation.org about a recently released draft report by a task force overseen by the U.S Department of Health and Services which is creating recommendations for pain management. They are actually asking patients for their input!
This public comment period ends April 11; after that the report with be completed and submitted to congress. If you are interested in commenting or know someone who may be interested, go here:
Below is a small clip from this site to give you an idea of what it’s about :
Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations:
“The Comprehensive Addiction and Recovery Act (CARA) of 2016 led to the creation of the Pain Management Best Practices Inter-Agency Task Force (Task Force), whose mission is to determine whether gaps in or inconsistencies between best practices for acute and chronic pain management exist and to propose updates and recommendations to those best practices. The Task Force consists of 29 experts who have significant experience across the disciplines of pain management, patient advocacy, substance use disorders, mental health, and minority health. This draft report describes preliminary recommendations of the Task Force that will be finalized and submitted to Congress in 2019, following a 90-day public comment period. “
You better believe I went right to the website and got to writing. I had a lot to say.
I’ve added my comment below, to give an example and also a more comprehensive look at my journey to a diagnosis. Thanks for reading.
“I am a 34 year old female, who is in very healthy physical shape outside of my chronic pain diagnosis. It took four years, over five doctors and countless medications before I received a proper diagnosis. I was only successful in finding the right doctor and diagnosis after spending a majority of my free time researching my symptoms and refusing to believe that no answers could be found.My pain began as piercing headaches behind my eye, which was later diagnosed as occipital neuralgia.(I learned years later This condition was actually caused by arthritis and pinched nerves in my neck.) I began to then have intense pain in my neck, so intense it would wake me in the middle of the night. At the time I was seeing a neurologist who had been treating me for the chronic headaches, and she sent me for an MRI. She had been prescribing me various migraine meds but they only made me more sick. She saw nothing of concern in the MRI but said I could get physical therapy if the pain persisted. I was told it was stress. I began to see a spine specialist and physical therapist, and my treatment included massage, neck traction and learn exercises to do at home. I was not prescribed any pain medications. At his time however, my therapist prescribed Cymbalta, an antidepressant that also helps to treat chronic pain. I also received trigger point injections and facet joint injections. These would help the pain only temporarily. Eventually my insurance company refused to pay for more treatments.I continued my research but the doctor I was seeing had not heard of the diseases I mentioned.
Very soon my lower back and hip also became very stiff and painful, and regardless of my usual yoga routine there was no relief. Then intense fatigue, weight loss and hair loss began. I felt weak and had horrible bowel problems. I lost 20 lbs on my already small frame, getting down to only 92 lbs. I had bald spots and and my hair came out in clumps. I became so depressed and scared I went to a walk-in clinic unable to deal with it anymore. I received amazing care from that clinic, and they took all of my symptoms very seriously. They ran blood tests and recommended I see a rheumatologist, who then looked over my MRI and told me the other doctors had read the MRI wrong – I had been developing arthritis in my neck for YEARS. He suspected I had what is called ankylosing spondylitis, a rare form of arthritis that causes inflammation in the spine and if not treated the spine can fuse together and create a crippling disability. I began Humira to confirm the diagnosis, and it mildly improved my symptoms. I do however also have osteoarthritis in my neck, likely caused by lack of proper treatment and wear and tear ( I am a performer). With continued widespread soreness and pain near joints, I have also have Fibromyalgia. These diseases not only cause pain but IBS, horrible night sweats, sensory sensitivity, stiffness and fatigue.
The widespread pain I experience has caused me to miss work and career opportunities, and with the amount I spend each month (hundreds of dollars)and the money I wasted being misdiagnosed, I am in deep medical debt. I am often unable to work full time, though I am not quite able to qualify for disability. Obviously my quality of life and wellbeing has suffered, as it can be hard to commit to job opportunities or even social events as my pain is not always predictable, and it decreases mobility and strength. I am now understanding that some of my life goals will be much more difficult, if not impossible, to achieve. I spend most of the time managing my symptoms my biologic, anti-inflammatory and mental health medications; I also use topical creams and patches as well as compression sleeves to further control the pain. It often robs me of sleep.
I am not at the point of needing opiates, but I am considering medical cannabis. I have become an outspoken advocate for chronic pain awareness and through support groups and foundations I have learned that its been reported that many people, especially women, can go over six years and see a dozen doctors before receiving a proper diagnosis. This is a serious health crisis especially for women! Our pain is not taken seriously. I was lucky, but many women are dismissed and disrespected by medical professionals in their journey to receiving help. We need to work harder to end stigma, raise awareness, and give patients easier access to pain treatment options. Our lives depend on it.
Broke But Not Broken 