By Terri Longtin.
Missouri Senator Claire McCaskill released a report this month alleging that from 2012 to 2017, leading manufacturers of opioids gave $9 million to pain treatment advocacy groups. At the end of our story on it, we asked readers what they would tell Senator McCaskill. We received many thoughtful responses, but this one from Terry Longtin, who lives just outside Detroit resonated.
Dear Senator McCaskill,
I have had chronic, widespread pain for over ten years. I saw every kind of doctor imaginable, looking for answers as to why I feel so horrible 24 hours per day. I had never requested any kind of pain medication because I never wanted to take any pills, I was anti-medication you might say.
Finally, it was suggested by my rheumatologist to see a pain management doctor, he also told me that more than likely I have an autoimmune disorder called CRPS, complex regional pain syndrome brought on by 18 major surgeries on my legs, a twice broken back, numerous broken arms, hands, fingers, toes, dislocations of the shoulder (multiple), dislocated elbow, lots of strained and sprained joints, a quad tendon rupture, broken ribs.
I also have degenerative disc disease, I have Raynaud’s disease, I have Morton’s neuromas, trigger fingers, tendinitis in my arm, and osteoarthritis in 90 % of my joints. I take Nifedipine for the Raynaud’s, which eliminated all of the symptoms, I take Symbyox and Wellbutrin for depression and anxiety, which works great, I take Ritalin for ADHD, which works well, I take Flomax at night for an enlarged prostate, I also take Lunesta (sleep aid), at night because pain keeps me awake.
My pain management doctor tried 4 separate back procedures which did nothing. Over a period of 10 years he prescribed many different types and quantities of pain medication, approximately 5 years ago my pain medication prescribed was five 15mg of oxycodone immediate release and three 40mg oxycontin extended release, so with all of the doctors and psychiatrists, they finally got all aspects of my life very successfully managed. My moods were good and consistent, no extreme highs or lows, my widespread body pain was mostly kept at a level of 4 on a scale from 1 to ten, which was great, I finally was a high functioning, happy person for the first time in my life.
Now with all of the incorrect, skewed, one sided, paranoid statistics out there regarding the “so called” opioid epidemic, my pain management doctor has been lowering my pain medication every time I see him. He claims that the DEA is forcing him to lower everyone’s meds. So now I am not a high functioning, happy person. I feel pretty horrible 24 hours per day. It’s an absolute crime what’s going on in the chronic pain world and many, many people are really suffering needlessly. There is so much REAL information available if someone were to take the time to look. I belong to a forum called The National Pain Report and they are the greatest advocates out there, but it’s not even close to being helpful for chronic pain patients. We need support from senators and congressman, but somebody is going to go out on a limb and investigate the REAL statistics and the true story as to what is really happening. My pain management doctor told me there is only one exception to prescribing opioids for pain, and that is cancer.
Here’s the funny thing, there’s a chart that doctors use for rating pain called the McGill Pain index, the condition in the number one spot on the index, above cancer is CRPS, which, amongst all of my other miseries, is the condition I have been diagnosed with, there’s NO pain worse than this condition, even knowing and acknowledging my condition(s), he refuses to treat me in a manner that is apropos and my life is just squashed and there’s nothing I can do about it. Here’s a statistic for you, LESS than 1% of ALL opioid overdoses are from people with legitimate prescriptions for pain. I have a right to receive medical treatment for my condition(s), my rights as a citizen are being trampled. So please, be our voice, our advocate, take the time and investigate it yourself, you’ll see what I say is 100% truthful. Thank you for your time and please help us before suicide rates for chronic pain patients go through the roof.