Even though the results are negative, MS is my (cautious) working hypothesis. It is linked to my immune system in that whenever I am sufficiently exposed to a viral illness, I get a flare-up, especially in pain.
Janet, I have some possibly encouraging news for you - I have tried, over the years, to cut my pain medications back with minimal success. When I was on prednisone two years ago I was able to cut back from 140 mg to 100 mg, but as soon as I went off prednisone my pain increased and I had to go back up, to 120 mg. But whenever I notice pain not so bad, I cut back.
What tips me off - when I'm late taking my pain medications (it's a single daily dose, sustained-release) and I don't get reminded by pain to take my medications.
When I lost weight, I found my pain levels also eased but not immediately. I'm not sure if there is a link. I had lost a lot of weight then i was put on prednisone and I began to gain again.
Now, over Christmas I was able to cut back to 100 mg. Wahoo! Then when I saw the pain specialist in early March, I told him I was planning on trying to cut back further - a lower dose than I had taken for years. That same day I was late taking my pain medications and was not reminded by pain, so I started the next day - 80 mg. of course, pain was a bit worse but I managed breakthrough pain with an increase in less-strong medications. Over the next few weeks, I cut back on the lighter medications and once I was off those too, I cut back again on the strong stuff. I've done this over the last three months - I had my three monthly appointment with the pain specialist a few days ago and was able to tell him that I am now down to 50 mg a day. That's a lower dose than I was started on, way back 15 years ago.
I'm not telling you to do this as well - I have tried over the years and not been able to. But it's working for me now, who knows why. The pain specialist was delighted but agreed with me - I may not be able to cut it out completely, because I AM still in pain. But any reduction is a good thing.
I currently have a cold, so the viral attack has triggered an increase in pain. But I just upped my dose by 10 mg for one day, then went back to 50 mg a day.
My prescribed capsules contain 100 mg. Cutting back has meant opening up the capsules very carefully, and dividing the contents between two empty capsules. Ironically I feel more like a junkie while doing this, than when I was taking 140 mg a day! When I drove sis-ini-law and mother in law to the airport I had to take my medications, and was having to break up my capsule, in public, while trying to use mother in law's walking frame as a bench. ONly mother in law decided to wander off, leaving me alone in the airport terminal with raw opiates being juggled from hand to hand! And on Saturday as I headed out to my meeting, I left early because I knew the rain had flooded the roads and it was going to be a tricky drive. But I was late taking my medications (an indication I can begin cutting back below 50 mg). I stopped on te side of the road to split my capsule. But I fumbled, and 50 mg of tiny white beads fell all over me, the floor, the seat... and I didn't want to lose any, it's very hard to get the dose right if I lose some. So I carefully began to pick up every single little bead. I finally got them off my scarf, swept together the beads on the car seat, then very cautiously got out of the car to begin sweeping them up off the floor of the car, which was wet, of course (from my wet shoes). Just as I was bending over through the open car door, the heavens opened. A massive torrential downpour began in seconds, and by the time I got back into the cr with the door shut, I was soaked. I had to sit there and wait for it to stop before I could go back to what I was doing. I did finally get it all picked up, but I was late for my meeting.
Next time I get my prescription, I'm asking for 50 mg capsules. I didn't last time, because I am nervous, worried I might have to suddenly increase my pain medications again and would find myself caught short.
The point of my long saga - even after being on this for 15+ years, with dosage increasing, if you take this purely to manage pain and you're careful to not eliminate your pain entirely, you CAN reduce the dose, once your pain begins to lift.
My main worry now - my GP has suddenly begun treating me as if I am a recovering addict, and I am not. I do accept that I am habituated to the medications with a built up tolerance, but cutting back when I ca is eliminating that. But my GP is talking about how wonderful it will be to get me off these medications, and she didn't want to hear when I said that I am still in pain, I may need to stay on these medications at some level for the pain, and it does NOT mean I have been taking too much all these years. It just means what it is - I can cut back now. And I am glad. Don't second-guess or get critical.
The problem with her thinking I'm a recovering addict - it means other prescriptions I need OCCASIONALLY, such as Valium (for muscle spasms, mostly at night and not that often) she is very reluctant to prescribe. I hate having to argue for medications I've had no trouble getting in the past. I rarely take Valium, I usually have to throw away some of the pack when it date-expires.
But anyway - have hope. I was always told, and now am living it, that if you take strong pain medication purely for pain, you do not get addicted.
Marg
