I'm lucky in that I've had a Medication Contract for chronic pain for several years now. It wasn't easy to get but it is possible.
I got my contract prior to my Ehlers-Danlos diagnosis. I had a diagnosis of fibromyalgia.
About 9 years ago I went to a pain specialist in desperation. The medication my Rheumatologist had given me wasn't helping and I knew I needed long term help. It was a mixed experience. I was believed and got put on maintenance medication promptly. However, this doctor did not believe in breakthrough medication. Plus, I used a small private pharmacy that would mail me my prescriptions because I can't drive. Somehow, my doctor thought it was a large mail order pharmacy and decided that somehow it was sign of drug seeking behavior especially after there was a dispute between the doctor's office and the pharmacy about what had been written on a script. (Of course I hadn't photocopied the script before I sent it off so I had no idea who was in the right.) We severed our relationship and I came off of Fentanyl patches cold turkey. Surprisingly I didn't have many withdrawal symptoms other than the return of the pain.
While I was on the patches for those far too short 3 months I began to learn what life could be like with less pain. Initially I slept a lot. That isn't a sign of a bad reaction. I had a huge debit in terms of quality sleep and as that got smaller I stopped sleeping so much. My thinking got much clearer. For me, pain and exhaustion makes me more fuzzy headed and when my pain is well managed my thinking is actually better. A pleasant surprise was that my depression and anxiety also improved.
Unfortunately, I moved after seeing that pain specialist and had some real problems with depression and anxiety partially due to a toxic friendship. Mr. Wacky saw how much having my pain controlled had helped me and encouraged me to look into getting back onto some form of pain medication.
This is where the mental health problems came into play. My general practitioner knew about my mental health problems and was understandably concerned about giving me controlled substances. He also wasn't entirely convinced my health problems weren't somatoform in nature but that's a different story. I gave my doctor and my therapist a release so they could talk to one another at this point. My therapist was able to reassure my GP about my stability. As far as I know she told him it was up to him to rule out physical causes for my problems because she wasn't qualified to say I wasn't physically sick. (She was an amazing therapist.)
Despite that my doctor was still hesitant. I'd been cooperative as I could be with him in efforts to both diagnose and manage my health. I'd also made a few suggestions to him that while not initially taken well, did end up being helpful such as a sleep study. I finally decided that I'd done everything I could to establish a good working relationship with him that showed that I cared about my health and was willing to work with him. I think it is important to note that neither Mr. Wacky nor I liked this doctor or thought he was competent but the important thing was to be cooperative and did not let him know how we felt.
Honestly, if I had a regular psychiatrist I would have preferred to have them do my pain management. I know another chronically ill person who does that. Having a mental health professional do my pain management would have simplified things, in that, I would not have been fighting to convince a doctor that I was mentally healthy enough for treatment in addition to convincing a doctor that I needed treatment. Ideally, a good mental health professional would have realized that my depression and anxiety were compounded by my high pain level. Also, hopefully a mental health provider would be less affected by the “can't get respect” side effect of being on psychiatric medications or having a psychiatric diagnosis.
Finally in desperation, I wrote a five page letter to my doctor. I was brutally honest in that letter about what the pain was keeping me from doing. My filthy house was described in detail. I also listed the things I had tried to manage my pain and the non-drug things I did to cope. Importantly I also told him what I hoped to do if I was in less pain. I think telling my GP that I hoped to be able to exercise if my pain was better managed helped.
Luckily, my detailed letter finally swayed my GP and we started the process of getting me on maintenance and breakthrough medication. The first step was the paperwork to cover him legally and to make sure I knew my responsibilities. Next was a urinalysis to make sure I was't lying about my drug use. Since I had trouble with skin breakdown while taking Fentanyl patches the GP and I discussed pill options. My doctor wanted to make sure I could afford my maintenance medication even if for some reason I lost Medicare Part D.
Unfortunately his decisions lead to me being on one of the most stigmatizing maintenance drug available. I take Methadone and while I am pleased with how even my pain control is, that there is a generic version available, and that my pain control is quite good I do wish I had asked to try something different first. When I see a new doctor or a doctor of mine has sent me to the ER I have had to explain that I don't go to the Methadone clinic and that I'm not a recovering heroin addict. While I greatly respect people in recovery, this adds one level of suspicion and stigma that I just don't need.
I've been using narcotic pain medication for over three years now. In that time I've switched primary care physicians. The change went very smoothly and with no hitches. I think the key was that I was honest and made it clear that I was completely dropping my old GP as soon as soon as my new doctor agreed to treat me. Overall, things seem to go smoothly as long as I disclose my pain medication along with my other medications and stay calm about them. If I disclose my breakthrough meds before my maintenance meds, there seems to be less concerned about my being an addict.
I have had some changes in my original plan. The acetaminophen was removed from my breakthrough medication to protect my liver. I've also had one dosage change. Dosage changes are inevitable but mine haven't been very close together by any means. When I first read about pain management I had the impression than I'd need my dosage upped every six months or so but that just hasn't been my experience. I can stay at the same dose for over two years before talking to my doctor about pain control.
I've mentioned two types of medication here: breakthrough and maintenance. I take my maintenance medication the same way I take my blood pressure medication. So, it is something I take every day no matter how I feel. The maintenance med drops my baseline pain level by about two points. I know that doesn't seem like much but it is enough to make a real difference in my life. When I have a spike in my pain level or I am about to do something that I expect to spike my pain level then I'll take breakthrough medication.
Pain management has not been a miracle for me. However, it has improved my quality of life. That's enough for me. No, I'm not pain free. That wouldn't be a reasonable goal for me. However, my pain is more manageable, I'm able to do more of the things I want to do, when I have an acute injury I can recognize it, and I'm more content overall. Being assertive and getting my pain managed really has been one of the best things I've ever done for myself.
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