Posted 4/14/2014 4:16 PM (GMT 0)
My "background pain" level is probably an achey 3-4 most days, which isn't screaming pain, it's inconvenient pain. But if I don't respect it, it jumps to 5-6, and then jumps to 7, 8, 9.....for me, the pain is a combination of deep, achey, pain and burning stiffness, as if you worked out *really* hard the day before and now have limited range of motion and every movement hurts. There is no single pain med that does enough, but a combination (I like to think of it as a "cocktail")...I take 10 mg. amitriptyline (antidepressant at much higher dosage...at this tiny dosage, helps with pain/sleep), 4 mg. Zanaflex (muscle relaxant) spaced out during the day and with food, plus large doses of ibuprofen (800 mg, 2x) every other day. Also Ambien, because not getting enough sleep seriously impacts my pain level. I don't like the Ambien very much but it does work, better than anything else I've tried, without TOO much daytime sleepiness.
The heavy-duty pain meds I take are more for my back issues (2 herniated discs, facet joint arthritis) than for fibro...I am on 12 mg Exalgo (time-release hydromorphone, take once a day) and have 4-mg pills of hydromorphone that I can take for breakthrough pain, which I use about once a day on workdays and generally not at all on weekends. I did take hydrocodone for a while (Vicodin, Norco), but it didn't offer much pain relief (or, rather, offered 1-2 hours of pain relief and then nothing) and came with pounding headaches and painful constipation. My pain management doc tried me on shorter-duration dilaudid first (serious pain relief for 8 hours, and no real side effects...not recommended for people who are not already opioid-tolerant) and I found myself taking about three 4-mg pills a day, so wound up with 12 mg of the time-release stuff, which is much easier...with my brain fog, I don't have to keep track of when I took what med -- just once a day :)
I know people have had luck with Tramadol or Ultram, but it made me too dizzy (as did Lyrica, when I tried that - Lyrica did give me pain relief, but I needed Dramamine and Pepto-Bismol all day to deal with the dizziness, so that was out); I tried Cymbalta first, which worked for a few months and then not so much, but when we upped the dose made me very nervous and buzzy; I tried Savella, but it literally did nothing -- no relief, no side effects, nothing, it was like I wasn't taking anything. That's when we added the Elavil (amitriptyline), and that DID help.
After enough sleep, I have to say the biggest help is regular exercise. I've been experimenting a lot with different kinds, seeing how I feel after each one, different intensities, different types, different lengths...walking 3 times a week, ordinary strength training (body weight or light weights) once a week, and pilates and/or yoga 3 times a week works really well for me (the mind-body connection helps). I have to do at least 20 minutes but no more than 35, and no more than moderate intensity. At first, the exercise hurts, but if I stick with it, after about 5-6 minutes I can feel the stiffness and pain relax a little. If I miss a day, there is a huge difference in how my body feels. Also, when I'm done, I feel stronger. Anytime I can actually *do* something and keep up and finish it, I feel like I can take on the world -- any small step towards "old normal" is encouraging. At a little over a year since diagnosis, and after a lot of intense trial and error figuring out MY fibro (everyone's is a different flavor), "Fibro normal" has become something I can work around, but it doesn't mean I like it :)
I hope you're able to find a solution that works for you!