I’d gone to a pain Dr for 3-4 yrs s/p a MVA . I had multiple injuries/surgeries. They forced me to take opioids! I was afraid of them. Not for any reason; because I have no history of smoking or drinking or taking any kind of meds! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”…..so then I did all of the injections etc. & all of the PT-OT, Biofeedback etc. They wanted to give me an Intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune deficiency disease. Soooo then 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 (with Dilauded for emergency). 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!
I still take pain medications. I wanted to take them only once in awhile,, when in Agony; but my Legitimate chronic pain Physician told me that I have too many high pain chronic illnesses; that would be detrimental to my health. I live with pho of a stroke (CVA) and a heart attack. I live with lasting effects and pain from a TBI (3 yrs of brain injury rehab); along with full body/Systemic CRPS, Polyneuropathy In Collagen Vascular Disease (aka Ehlers Danlos Syndrome Type 4-Vascular), Rheumatoid Disease, Chiari with Chiari Migraines, Degenerative Disc Disease with multiple herniated & bulging discs, right Long thoracic Nerve Neuropathy, Lymphedema,Dysautonomia/POTS, Gastroparesis, S.I.B.O. (Chronic small intestine infection)…..
So I took my team of Drs advice and I take my medication as prescribed. They say that I have too many high chronic pain illnesses and that if I do not take it as I’m advised, I will be in intolerable pain. If one is “lucky” enough to only need pain medication once in awhile or for special occasions, that is great for you! I’m very happy for you. But as for me, I want to be the best wife, mother of 2, grandmother of 3, patient health advocate, US Pain Ambassador, Mentor, writer, Blogger and published author for the National Pain Report; that I can be! I don’t fear losing pain medications, I fear losing my life due to under-treated or un-treated pain.
So just remember that there are always people better off and worse off than you! Do not judge someone for the way they choose to live or the way they just get by day to day. There are reasons that may be unknown to you for why they need the various medications and dosages. It may be different for you; but please don’t judge because it might be different from your regimen. Different types of pain relief, from complimentary therapies, to Medical Marijuana to pain relieving medications; any of these may be exactly what various chronic pain patients need. They may need any of the above, or a combination of these to relieve varying degrees of torturous daily chronic pain.This is not a competition and there are no winners!