My Horrible Experiences with Pain Doctors
Around 2010, I started to feel much l better. I realized that a long period of time, months had passed without any serious pain and sometimes any pain. I decided I wanted to try to reduce the amount of morphine I took or stop altogether. I spoke to different people about this including docs who didn’t give me much encouragement. One personal friend, an MD, told me he never met anyone who successfully got off morphine. I would have liked to go to Dr. Valdivia for help. Unfortunately, my work had changed insurance options and I had to find a new neurologist. I chose a doctor who was head of the neurology department at a teaching hospital. We got along okay. When I told him I wanted to get off morphine he suggested that I go to a pain specialist.
Pain Doc #1 was a referral from my new neurologist. He was a very large man, well over 6 feet and 250 pounds. I am petite, 5 feet 2 inches and well under 250 pounds. (While I’ll tell you all about my bowels, I won’t tell you my weight.) My first visit was okay. I was shocked to find out that, even though it was my idea to go off meds, he made me sign a pain contract. Pain contracts vary from doc to doc but basically you agree to a variety of things:
- Take a drug test each appointment or any time they ask while you are under their care
- Use only one pharmacy and don’t change pharmacies without permission
- Give permission for pain doc to access your medical records
- Agree not to take more pain meds than prescribed
- Not miss any appointments
- If meds are stolen or lost get permission from pain doc to get a refill and provide police report if a burglary
At the first visit Doc #1 cut my pain meds approximately 25% and scheduled my next visit about two weeks later. I had a shaky two weeks, but complied.
On my second visit I brought my husband with me. Normally I do this for all important hospital visits as it is always good to have a second pair of ears especially when you are nervous. The Doc wanted to cut my meds another 25%. I didn’t think I was ready yet and asked if that could wait till the next visit. Instead of discussing the option with me he told he had stopped using morphine by going cold turkey. He spent several minutes of our short visit talking about his health. We also had the following exchange (to the best of my and my husband’s memory).
“If you don’t like my advice, I can just choose to not give you a prescription for any narcotics.”
I was shocked and said, “Don’t threaten me.”
“I’m not threatening you,” he answered.
My husband replied, “It appears to me you are threatening not to provide her any pain meds.”
Doc #1 got very huffy and suggested I seek help elsewhere which I was delighted to do.
Pain Doc #2. I don’t remember how I chose the second doc. My visit with the doc was fine. He had even treated some patients with TM in the past. After speaking with him, I was told I’d be seeing a Nurse Practitioner. (NP) Fine with me. I signed a similar contract and took the drug test. I agreed to drop my dose 10%.
At the second appointment, the NP began by yelling at me for missing an appointment and for lying about my medication history. I had not missed an appointment. I had not lied about my meds. I requested to see the doc. The NP didn’t want me to, but I insisted. The doc checked the files and saw I was right. He told the NP who never apologized. From then on I felt uncomfortable with him although I continued going to the appointments and lessening my meds.
I managed to decrease my meds about 40% less, but then I got sick. Some kind of flu. As had happened before, when I got sick my pain level went up. At the appointment after the flu, I requested not to decrease my meds again till the next appointment. I explained that getting sick can up your pain. The NP told me I was wrong about getting sick increasing pain and that I was acting like an addict. He gave me a prescription for 10% less and I left, but stopped seeing that practice.
I didn’t want to see any more pain docs. I was being treated like an addict and not a person with a disease who was trying to see if I could feel okay with less medicine. I wonder how those docs treat people who had an addiction?
I spoke with the people in my support group. Many had the same types of experiences with pain doctors. I had a professional relationship with a VA doc who helped soldiers get off pain meds. I explained my problem to him. He couldn’t treat me as I am not eligible for the VA, but he helped me get down to the smallest dose of morphine sulfate on the market. We never met, he just explained what I needed to do and it worked.
I was terrified to go off the final dose of morphine alone. I’d read about addicts detoxing and having sweats, fevers, pain and being miserable. I checked the internet which affirmed those experiences. Once again a piece of luck. My primary care doctor had a DEA license to prescribe Suboxone, a drug to help addicts get off opiates. Suboxone also provides minor pain relief. He was the only doctor I talked to who believed I could do it. I chose a day to start when I had a couple of days that I didn’t have to leave the house. I bought some treats (special teas and cookies), and lots of movies. The process is to go off morphine for 24 hours and then you can take the Suboxone. I don’t know if this is a common experience, but the 24 hours passed relatively easily. I had some anxiety, but nothing near what I expected. Since then I have reduced my suboxone dose to a very small one.
For pain I currently take Suboxone, Cymbalta (which is an anti-depression used off-label for pain) and Lyrica. I am doing very well, but would like to get off the suboxone because although it is not a narcotic or opiate it is still regulated to some degree. I have to get it from a doc who has a special DEA license and fight with my insurance company to pay for it.
No one, not even doctors, can predict the future. I have been told over the years by various doctors and medical personnel that I would not get any better. People in my support group have been told the same thing. Dr. Valdivia always told me I would get better and I did. Don’t give up. Doctors and researchers are in the infancy stage of learning about TM and other similar diseases. As they learn, we will get more treatment strategies. Find another doctor if you aren’t happy with the one you have or don’t feel she is trying to help. With your doctors’ help, try other medicines or other combinations or other doses. Try alternative therapies. Exercise. Write about your problems on the TM web site. Write me. Don’t give up. Surround yourself with friends and family with positive attitudes. Laugh.
This is the final blog in a series by Barbara Sattler, a member of TMA Board of Directors. Barbara is a retired judge and a published author. The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of The TMA.