That is way less sexy than it sounds. What I mean by that is that it requires a lot of maintenance. I think the term maintenance can be kind of confusing so here is what I mean.
When you have a chronic illness there are points of time when you are behind the pain, meaning you are not in control of your illness. It takes a lot of time and effort to manage an illness. When I refer to maintenance it is all the things I do to keep my symptoms from overwhelming me. Maintenance Mode is the best place I can hope to be, it's when I am doing as well as I can expect and I feel mostly in control. Fibromyalgia can be extremely unpredictable and things that are uncontrollable can cause rapid flare-ups. However there are a lot of things I can do to regulate the rest.
In the past couple of years I found a schedule that works pretty well for me. Here is what I do typically:
Pool therapy at least two times a week -1 hour stretching and cardio instruction in a heated pool, daily stretching and breathing practices at home, massage therapy 1 hour every two weeks (weekly when I could afford it) -full body massage that takes a skilled therapist who knows how to work with FMS. Atlas Orthogonal adjustments every 2-4 weeks as needed. FM Group 1 time a month. Trigger point injections every 4-6 weeks. Sacral Illiac Block 1 time a year. Rib injections every 6 months. Primary care appointment every 3 months unless there is an issue. There are typically a few extra doctor/specialist appointments a month. (All of these things are in about two hour blocks which seems to be about the most I can handle in one day)
During a flare-up I might add Tens/ems treatments, extra Atlas appointments especially for tension or migraine headaches, lidocaine ointment and patches, taping and ice/heat therapies.
I have fine-tuned my drug therapies over the years and finally found a relatively stable combination. Here is what is working for me, this isn't to say it would work for anyone else. Also, I should point out that I would recommend trying many things before committing to opioid management and only after other treatments have failed. It is my hope that more people will try therapies like LDN or CBD before opioids. Being under medicated/treated will only make it harder to find what works, and it is better to rescue and reduce when you are controlled than resist treatment at all, you absolutely have to get out in front of your pain in order to learn to manage it.
Here is my list: OxyContin 10 mg (I find it way more consistent than oxycodone and without psychoactive ups and downs, I don't tolerate acetaminophen) 10 mg Zolpidem for sleep, hydroxychloroquine 200 mg immunologic, omeprazole 20 mg for GERD. I also take vitamin D, vitamin E, Magnesium with Malate, B-12.
I have tried so many things with so many horrible side effects; Muscle relaxers, anti-depressants SNRI and trycyclics, lyrica, gabapentin, neurontin, RLS meds, pyridostigminebromide, NSAIDS like naproxen, amitiza for IBS, multiple pain relievers both opioid and not tramadol/ultram, bupenepherine patches, I have tried holistic approaches and natural remedies and this is about all I can tolerate and if I could manage without I would in a heartbeat.
There are a ton of other things I have to take into account daily. I don't eat foods containing MSG, artificial sweeteners (rant for another day), I don't drink alchohol. I limit my exposure to chemicals and smells I might even wear a mask. I schedule appointments for afternoons and try to not schedule more than one therapy a day. I use my "free" days to run an errand or do chores. There are a million little things I have learned to do to manage this illness. Things most people don't even realize are choices.
I have found that even the smallest deviations in this schedule put me behind the pain and it can take weeks to get back on track. Sometimes I start to feel isolated and I like to go out with a friend for dinner, usually this means a couple of hours out two maybe three and then typically I spend the next day or two in or near my bed.
I know that people sometimes look at me and think; it must be nice to stay home and not work. This isn't a vacation, I promise you it is a full-time job. It is not glamorous or enjoyable and I work really hard to maintain my Fibromyalgia symptoms. I'm only maintaining because I'm not working and I'd give anything to feel healthy enough to work again.
For those of you still figuring out how to find your maintenance mode, know that you have to challenge everything, if it isn't working for you after a reasonable time period try something else. Don't give up. Also keep in mind that some therapies may seem like they aren't doing much but in combination they work well together and finding the right person for therapies can be just as important as the therapy itself. Fibromyalgia doesn't have a one-size-fits-all solution, almost always it requires multiple approaches from every direction; physical, emotional, nutritional and medical. It seems like a lot because it is.