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Dear Dr's Please support my lifestyle goals and health.

Dec 19, 2017 6:26 AM

I am tired of my health and my quality of life goals not being supported by the medical community. My pain is in my fingers and toes so I am told the only Fda approved treatments are pills, and amputations.. neither a good option and I have tried and tried amputations they seem to make it worse. I survived sepsis with severe organ damage heart failure and amputations from lack of blood I cannot take medications that are hard on the organs or that slow the heart too much. I have been on morphine sulphate er since I left the intensive care unit 7 yrs ago. I spent two years bedridden and 4 years in a rehab home. Three years ago I was finally able to move out with the help of loved ones. I am on my lowest doses ever and now after a new necessary finger amputation surgery that is still swollen and in more pain now than before the surgery I am getting push back when i say i need help with the extra pain. instead of just raising the dose on my medication like they had done for the last 8 years of these surgeries, bouncing the doses up and down with the pain from surgeries on top of the chronic pain. instead they want me to take new drugs that depress the heart and increase doses of other medications that decrease my heart function as a side effect and puts me to sleep. I don't want to be asleep all the time. I don't want to fear my heart stopping while I sleep. I want a doctor to understand I want to be less messed up and effected by the side effects of these drugs. I am a mother of small kids that i love and live with and take care of and want and need to be awake when they are awake to keep them safe. I also need to be alive. When untreated my pain makes me literally bed ridden just sleeping trying to escape the misery being able to think about nothing or no one else being unable to touch things or even walk without screaming even if I try not to. I cannot be a mother like that. Please help me be awake be less dependent on so many different medications please help me be in an acceptable level of pain so that I can be active and stay healthier longer. I don't expect to be pain free I only want the volume of the pain turned down enough so it's not the only thing I hear so that I can be distracted from the pain long enough to enjoy a joke or a sweet moment with my family. I just want a chance to be able to witness and be present in and even maybe enjoy my life not just blinded completely by pain

I know the new recommendations have come out but I beg doctors to read the entire thing not just a summery or the one page simplified list. Please don't put my health at risk or reduce my ability to be active and awake. If I tell them a medication makes me tired I don't want to hear "i don't care" or "so what don't you want the pain to be less." If I say I am afraid that adding a new medication such as a psych med or hypnotic or anti anxiety medication increases the mortality rate when in combination with my other meds and that my past heart infection and weekness makes me particularly sensitive to these combinations I don't want to here "well I haven't heard that about these medications" and then not ask where i found such information or try to show me what they would consider better information to help educate me or to avail my fears. What s really bad iss these doctors actuallyg care but honestly are just afraid and taking bad advise and not wanting to be honest about it for pride. For most if not all chronic pain patients they are sugesting adding new powerful psych drugs and hypnotics in combination instead of increasing pain pill dosage. i just think its not right for my situation or any anyone else with a weak heart.

I am angry that the backlash for the pain pill and heroine epidemic is hurting the disabled and real chronic pain patients and is making it difficult for us to get access to proper treatments and support even from doctors that want to help because the doctors seem scared and confused about the new rules. Our needs are being put adversary to the doctors risks. The doctors are being threatened more with this situation than with any other situations or mistakes or malpractice. This makes the chronic pain patient a pariah and too risky just a liability that you have to assume are telling you lies anyways. I read all 30 some pages of the new federal recomendations. It says treat patients the way you think is best for the unique patients conditions and explain why you think it is best in your records. Try multiple apropriate options and combinations of treatments when possible and then just suggests politely that you keep good records and keep an eye out for the patients exhibiting addictive behaviors. (Addiction is not wanting more medication when it is helping with pain but instead addiction is wanting more pills when they cause their lives more harm than good). Is gives some exaples of addiction questionairs and then say none of them have been proven to work so just wing it. The generic suggested medication limits on the bullet point summery are not really applicable to chronic long term pain patients particularly with unique pain causes. Please read the whole thing.

Dec 20, 2017 3:58 AM

Wow... I am so sorry this is happening to you. I also absolutely agree with you. So because there are a certain segment of the population has a problem has a problem with opiods we all due. Stupid thinking. It's totally about liability. Hang in. Like most of us just going from day to day.

Dec 20, 2017 5:58 PM

I am filled with prayers of recovery and strength for you and your family. You're are remarkably strong for dealing with chronic pain and still raising lil ones. I've been there done that and the whole bed ridden with lil ones too. Many hugs and spoons for you.
I lead a support group on Amino (phone only supported chat) that is just for people with CI. We sound like a perfect fit for you...
How We Survive: Living W/ CI

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