I’ve had the same rheumatologist for 4 years, now. He’s seen me working and in pain and working and using a walker and fresh from the hospital and completely, unexplainedly fine, and working again and slowly getting worse. The past few visits he’s been telling me I’m really not that bad, when I just rest and stay unstressed. However, I surprised him today. He started up with the “So, what hurts?” and really not believing me when I said “I’ve been feeling much worse.” I said I have 3-7 migraines a week, and headaches the other days. He really didn’t seem interested in helping that. But then we got to the specific areas of localized pain and, wouldn’t you know it, the part that was the most painful was the shoulder he just gave an injection to 6 weeks ago. Usually, the injections cause a great improvement, so now I am possibly being honest and undramatic when I say “I’ve been feeling worse and have been unable to exercise properly.”
In the end, all my doctors agreed that I cannot return to full-time classroom teaching, and I have forms filled out by all of them to that effect. Hopefully, I will continue to live off the sick leave bank through June 17th (the 100th day of my Sick Leave Bank leave, 6 days before teachers are off-duty but 2 days after kids leave) and before getting let-go. If not, I can start tutoring kids to prep for finals, but I’m hoping to get as much time to get better as possible.
Here’s the skinny on my pain:
Weight gain does not add padding for my joints, back, or tush; it just adds weight to lug around and a greater amount of skin to be overly sensitive.
I can’t sleep on my side, because of both of my hips hurt and both of my shoulders displace a bit, but the weight of my DDs makes my breastbone hurt when I sleep on my back. If I don’t sleep well, I am achier the next day. And so it goes day after day until I finally sleep for over 12 hrs straight, after which I feel awesome and do too much and then can’t sleep because I’d slept so much and the cycle restarts.
Exercise can help if it’s just enough (so a little more than I feel like at first and a lot less than adrenaline helps me want to do once I’ve started). The next day, I can do the same amount. The third day, I can do a little more… But once I stop or get hurt or do too much, I’m practically back to square one. It’s very difficult.
Meds are not as spectacular as they sound, but they do help.
- Lyrica causes my nervous system to quiet down; like having the lights off and the blinds closed on a sunny day, it helps keep the lights out, but there still is light, or like making the middle part of a swear word silent for TV, you still get the gist but it’s a little less offensive.
- Nabumetone is an all-day NSAID, so I don’t have to take Advil or Aleve. It means I never know I’m sick, because it also works as a fever reducer, but it does turn the pain dial down a notch.
- Flexeril is a muscle relaxant. I only take it at night to relax enough so I can sleep, or on the very very very rare occasion that I’m having horrible muscle spasm pain, especially in my neck. It’s kind of like removing the sword from the wound: it still hurts, but at least it’s not still slicing you.
- Hydrocodone (a.k.a. Vicodin) is a mixed bag. It’s a well-known opium-derived pain reliever that can totally lower my pain and make me feel human and relaxed and wonderful. It can also lower my horrible-level-9 blocked-out pain just enough that I feel it, causing unspeakable discomfort until the meds wear off. Plus, the more frequently you use it, the more you need. Plus, it is potentially habit-forming.
- I have just discovered Lidocaine pads, which are awesome for my ribs, breastbone, and other bonier places. Not as good for inside joints (like shoulders), for my neck (under my hair doesn’t work, for obvious reasons), or even tight muscles unless it’s a nausea-inducing, swollen, pulled-muscle pain. But I do use them up to 3 at a time either to get through a rough time in public wearing a bra or to get to sleep. (A heating pad also works well for my lower back/hips.)
- Klonipin is actually a psychiatric drug for anxiety, but it also relieves stress-induced muscle tension. I always surprise myself if I take half of a 0.5 mg tablet (that’s 1/4 of a milligram) during the day, before a stressful activity, because I just can relax and enjoy myself much more.
- Cymbalta is an antidepressant that is also FDA-approved for people with fibromyalgia because it works on just the reuptake of norepinepherine and has few side effects. Since the ECT, it is all I’ve needed to manage my depression and depression itself can cause all kinds of sleep disturbance and unnecessary stress.
- Seasonique is a 13-week-long birth control pill. It delivers a steady, low dose of hormone over nearly 3 months. This minimizing of fluctuation helps my mood considerably and reduces the amount of PMDD (which is like the raging stereotype of PMS, only worse) and PMDD-related-stress and PMDD-related-pain that I have had to deal with, even on the cheaper 4-week pill. This last cycle, I had a 1 day long, very light period and barely any PMS.
On another note, I read an article about foods that are good for and bad for fibromyalgia pain. Apparently, sugar, aspertame, and other artifical-sweeteners are reported to make pain worse by approximately the same amounts, so I’ll just go with fruit and ignoring articles in which all the test subjects start out believing certain foods effect their pain.
In addition, I’ve discovered that being home and doing very little means that I use fewer points than Weight Watchers allows on a daily basis (thus my weight gain). So now, I just eat as few points as possible with that daily points level as my “splurge.” We’ll see if it works.
That said, I’m going to make an appointment to see an allergist about possible gluten issues and one with an acupuncturist about my migraines, my sinuses, and my fibromyalgia pain.
