By Suzanne Burnett Stewart
I had gone to a pain Dr for 3-4 yrs s/p a MVA in 2002. I went through having multiple injuries/surgeries. The Dr.’s forced me to take Opioids! I didn’t want to take them and I was afraid of becoming addicted! Not for any reason; because I have no history of smoking, drinking or taking any kind of medications! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”
I did everything that was asked of me by all of the professionals who’s care I was under. I endured all of the painful injections, the years of PT-OT, Biofeedback etc. After all of that, they wanted to give me an intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune Deficiency Disease. The risk for infections and/ or paralysis was too high and so the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds.
So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (I also had Dilauded for emergencies). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records.
So I did it on my own!
The partner GP offered to help me for a few months but, ASAP, I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself.
When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges!
I was very, very ill!
The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually.
I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it, and I’ve done it, and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!
Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children. Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).