I just wanted to post for you, my letter to the CDC. It is in an attempt to help change some newly, “almost adopted” guidelines for prescribing Opioid medications! Their guidelines, say pretty clearly that Opiods should not be used for non-malignant pain. They only want to rarely use it and over regulate it even for malignant pain. Even if your pain consists of many chronic pain illnesses, and/or if it is CRPS-#43 on the National pain scale, the”McGill pain scale. They set up guidelines to grossly lower the amount that some people may have been on for several years or many many years!
The results can be disasterous if this goes through. Our voices need to be heard! I can only hope and pray that enough pain patients, their loved ones, their Dr’s and friends helped by also writing in during this open period for comments until Jan 13,2016! There’s still time!! Please read my previous blog post to this one. It explains all about how to do the comment writing. Also all of the information that you’ll need is in that prior post here at “Tears of Truth”! Here is the letter or comments that I wrote! (Be careful because I thought I’d submitted comments awhile ago!! But then I realized I hadn’t gotten a receipt or a tracking #! Something went wrong, so please make sure you get a receipt from the CDC, for your comments, along with a tracking #…Here are my comments below . This is what I sent:
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Agency: Centers for Disease Control and Prevention (CDC)
Document Type: Nonrulemaking
Title: Federal Register Notice: Proposed 2016 Guideline for Prescribing Opioids for Chronic Pain
Document ID: CDC-2015-0112-0001
*******Here are the exact comments that I have sent to the CDC, re: the Opioid guidelines.***
Docket ID: CDC-2015-0112
I was an Interpreter for the Deaf! I worked at a major hospital & schools. Now I’m a chronic pain sufferer! I was injured in a MVA, 2002! I suffer from the pain effects of : CRPS (#43 highest on the McGill pain scale). A horrible fire-like burning pain that starts with nerves but is progressively debilitating. It progresses to blood, bones, skin & more. Eventually loss of movement & continuous burning pain 24/7/365! I have Polyneuropathy in Vascular Collagen Disease, Autonomic Neuropathy, Arnold Chiari I, Degenerative Disc Disease, Right long thoracic nerve Neuropathy, L4/5 & S-1 Radiculopathy from multiple herniated & bulging discs & Prinzmetal Angina. I suffer the results of a CVA & 2 “mini strokes” with nerve pain & restricted movement, Dysautonomia/POTS with PAIN & other issues from a TBI s/p the MVA as well! I also have “Combined Immune Deficiency Disease”, which in lay terms means that I’m not eligible for an SCS nor a pain pump. The danger of infections and/or paralysis would be too great of a risk. This is one main reason that I must be able to continue the medications that manage my pain & have since 2002! Not many of “us” fit into a nice, neat little “box”. While bringing up the point of “not many”; “not many of us” ever become addicted to Opioids, in fact only about 5%! Our bodies may become physically dependent on these pain meds, but we do not get any kind of “high” from them! At best, they keep us just a little more comfortable. Don’t Diabetics need Insulin to survive? Don’t hypertensive persons have strokes without their meds? Those who suffer from Epilepsy need certain medications to live without seizures! I take what is called “Warfarin”. It’s truly a rat poison! In large doses it kills rats! But in a small dose just for me, it keeps me from having more CVA’s! Those meds are not good for the average persons bodies, but some groups of people need certain medicines in order to have some kind of life outside of their homes or a hospital!
I’m a Chronic Pain patient and I would literally die without my Opioid pain medications! Chronic pain can kill people! There’s not only disease progression, but deaths by suicide will also increase as people lose hope of any relief or help for their pain! I can speak for myself and for many other pain sufferers, when I tell you that I’ve tried many other medications, PT/OT, Injections, epidurals, nerve blocks etc. Nothing dented my pain, until I was told by my pain Dr in 2003, to “try the pain meds”, and I did it! I will confess to you that the Opioids only help to take the “edge off”of this type pain. My pain Dr nor my GP can work miracles but they can try to keep me (*and others like me) as comfortable as possible….but only if you; the CDC, will allow them to continue?
I’ve been a health advocate since 2005! I am an administrator for 3 online support groups for Invisible Diseases/CRPS & Chronic Pain; as well as the organizer and administrator for “in person” support group “meet ups” in state of Michigan! I’ve been responsible for many successful fundraisers for Pain illnesses. I am a “Mentor” for newly diagnosed CRPS patients. I truly try to stay positive and use my life to help others because I felt so isolated in the beginning. I even do awareness events as I’m able! I used to make support & Awareness jewelry. These days as my illnesses progress, I’m unable to do much of the jewelry creating. But if someone asks, I still try my best to make a few support items. I live with RA & OA as well, making it even more difficult to make my jewelry! I’m also a Chemo-angel, card angel & special assignment angel for the “Chemo-Angels” program!
That is who I am today! These are my words and what I have to say about the new CDC Opioid guidelines and why they’re so wrong. I have had much pain in my life, it continues today as will again tomorrow and for every tomorrow after that! But if my Dr’s are allowed to keep me as comfortable as possible, then why are they being “bullied” from helping me? If an Opioid pill &/or a patch can help me to at least to be more comfortable, then why not?
Many groups of people were totally & blindly left out of the guidelines decision making process! Somehow those who were allowed input on these guidelines, were some physicians,”non”physicians & others who stand to gain monetarily (they are: treatment center owners, Massage therapy office owners, Acupuncture clinic owners & administrators…and others who stand to gain from our losses). Their gains would be my (our) loss of any kind of life outside of a hospital bed in my living room and/or a wheelchair. I’ve been on the same medication regimen for a very long time. I do not need nor want higher doses! I’ve never gotten a “high” from any if it! But being allowed to take my opioid pain meds, gives me the chance to be a grandmother, a mother and a wife for a few hours at a time, some days! Please “Do No Harm”!!
First Name: Suzanne
Last Name: Stewart
For further information about the Regulations.gov commenting process, please visit http://www.regulations.gov/#!faq.