As I mentioned in my previous post I've made some decisions regarding my medications. At my last visit with my rheumatologist he discussed a medicine with me that has new studies out to help with FM pain. He asked me to go home and research and for some time I forgot about it. When I did look it up I was disappointed in what I found because the drug seemed to be used for patients detoxing from high doses of narcotics. At first I was kind of upset thinking he had the wrong idea about the amount of pain medication I take. At one visit I remember him telling me that some time your pain medication can actually cause your pain to elevate if it is blocking another medication your taking. Then it dawned on me that he said to make sure and research the medication along with FM pain. Not just the drug name alone.
After researching this way I felt better about what I found and read. There were several studies and some patient reviews also. I can tell you I'm shocked at my own self for even trying this after trying 3 different drugs for FM treatment. Then some years later trying the Lyrica again. This was the second time I'd heard this information from Dr. C and he is my favorite doctor of all of them and I don't think he'd recommend the drug if he didn't think I'd get some results from it, even if small. The draw back is you cannot take it if you are taking a narcotic. Which means I have to get off of my pain medication before I can even try it. Just thinking about trying scared me to death. Everything I do revolves around my pain medication. What time I go somewhere, when I try and exercise, when I do any house work. I could go on and on.
Right about the time I was considering this option it was time for my 3 month check with my PM doctor. I talked to him about it and he was pretty positive about the medication too. I started to have a little hope. We discussed what was involved and how long it would take. He said if I wanted to do it the best way with the least withdrawals it would take about 2 months. He said towards the end my pain would definitely increase for a period of time then it would level off. A lot of patients who have taken a pain medication for a long period of time and get off find that if they make it through getting off they find their pain is not any worse than with it.
So why would I do this then? For a long period of time I've hated that I have to take pain medication to get through my day. I hate the stigma that comes along with it. I hate how long I've been on it. I hate the side effects and the harm it's doing to my body long term.
My stimulator allowed me to cut back, but it doesn't work well enough alone. I can't say "it won't hurt to try" because if you've ever had to come off of a medicine you need to taper off of (not just a narcotic) you know how sick it can make you. If this other medication works for the FM then maybe, just maybe things will even out. I'm ok with not being any worse. Of course if it's Gods will that I get "real" relief then hooray. If not, I'm thankful to not feel worse for stopping the pain medications.
Back to our conversation....he asked me when I wanted to try and I told him that I'd like to get through the holidays then get started. After a few weeks passed and my husband and I talked about it more I decided I was ready to get started. Why wait? Maybe I could be done and better by Christmas. So I made the call last Thursday morning. I had an attitude going into it because I'm always complaining about the staff at that office. I really like my PM doctor but it is so hard to deal with his staff. Once I get to the back and I'm with him it's all good. I've threatened so many times to go somewhere else but it's just not that easy with my stimulator.
The nurse called me back about 3 that afternoon. I told her in detail what I wanted her to discuss with him for me. I told her if she had any questions it should be in my notes from my last visit because we talked about it. It was Thursday and he wouldn't be there Friday. She told me not to expect a call until Monday or Tuesday. So until Tuesday afternoon I was patient. After that, I was annoyed. So typical of this office. I called Wednesday am and left a message in case they weren't aware it was approaching a week I'd first asked for a return call. By 3 pm no call. I called back and talked to the front office. This lady was certainly honest. She told me they get a complaint every day regarding this matter. I asked her to leave my message personally to the doctor. She also said she would inform the office manager of what happened.
Today, still no call by 9 this morning. I decided to reach outside the office for help. It was a long shot, but I didn't care anymore this an important decision I'd made regarding my health and I felt like my doctor didn't care about ME at all. I text Mr. R and asked him if he happened to be working with my doctor that day. He called me an hour later and said he'd been in surgery all morning but not with my doctor. Mr. R told me he had no problem texting my PM doctors nurse and mention that he was setting up an appointment with me for reprogramming (this was true) and I mentioned the issue going on with them getting back with me. 15 minutes later I received a call from the nurse. "what can I help you with Ms. Theresa?", she asked me. Are you really serious? I left a detailed message with your co-worker (his other nurse) and a detailed message on your machine. She said the other nurse was working at another office this week and she really didn't know what I needed. As far as the message I left yesterday she looked in my chart and didn't see any notes about what I left the message about. I started crying and the next thing I knew my doctor was on the phone with me. My tears were real, but I'm here to tell you sometimes a few tears goes a long way. Don't be afraid to cry :-)
I did have to jog his memory and he remembered our discussion. We talked for about 15 minutes and he reminded me this wouldn't be easy either way I did it. He said my dose was low enough I could just quit cold turkey but I'd be down and out sick for 2 weeks. His exact words were "you'll feel like your dying" and I believe him. Or...we stretch it out slowly over 6 weeks. Same results but a lower levels each day. I will be completely off in 2 months. I'll be dealing with some intense pain he said but it should level off in a month or so to where I was when we started. As soon as I'm completely off I can start taking the new medication. I'm really anxious about this entire process. Who can put there life on hold?
I plan to try and keep you informed on how it's going. I hope to get through this without to much discomfort so I will feel like getting on my lap top and catching up. You wouldn't believe the emails I need to check. In October I have an appointment with Dr. C so I can get some encouragement from him if I need it. He's going to be glad to hear I've made the choice to at least give the medication a try.
Wish me well and thanks for listening. I know some of my readers understand exactly where I am and what my experience will be like.
Living with HOPE (hold on pain ends)
Theresa
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