What I wrote for The HHS Pain Management Comments Not to late put in yours
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I have Ehlers Danlos Type 3 +
This means I dislocate by : shifting my body in bed (wrist), rolling over (shoulder or tibia), tibia by turning or getting out of a car, I even dislocated my thumb drawing. Currently I have a rib, shoulder, and wrist that are permanently dislocated. Does it hurt? Yes, every time. I am not the only one with this condition and it is one of many conditions that do not fit into the CDC guidelines for opioid useage. This guideline is brilliant as a guideline for most of the population for those of us with chronic pain disorders it is draconian, cruel, and will sentence us to a life in bed.
There are few alternatives that truly work for chronic pain. This is one thing in my arsenal that at lease give me many half days and keep me out of emergency rooms. I can have the focus to help my daughter with her school work, talk with friends, and on exceptional days go out perhaps if I am feeling wild and crazy and am having a wonderful day I might even be able to tackle a chore or two.
Without a proper alternative medicine to cut out the only thing that makes a life possible would not only be cruel it would be setting up a mental health crisis. This can be seen in the VA who chose to take the CDC guidelines as law and witnessed a drastic increase in suicide and depression.
If we are expected to rely on alternative therapies such as behavioral modification, Accupuncture,or floatation therapy there are things to consider such as cost. With insurance I pay $10 a month for my pain medication. The therapies mentioned above are not covered by my plan or fall into deductibles costing my family $70 or more per therapy per week. Then you will also have to consider access. How will chronic pain patients without their medications get to these appointments?
When reading all of our stories please look beyond headlines. Are the frightening numbers from the common pain medications prescribed such as Vicodin and oxicodine or are you seeing number for fentynol? Are these numbers for those legally prescribed by reputable pain clinics or are the drugs accessed on the street? Are the death counts also including hospice and end of life care?
Remember guidelines are important. They will help the majority of people. They are GOOD. This is also why guidelines are not the law. They create a structure that also allows for the exceptions. Please remember the exceptions in this case. We are people and we deserve a chance at living the best life we are capable of. Until there is a better, afforadable, and easily accessible alternative please do not remove my librety to have a life outside of my bedroom and the happiness to be able to interact with others.
Thank you for your time and attentions
Invisible Not Broken