I've been working on this post for a while in my head…every morning when I walk, when I'm waiting to fall asleep each night, during bits and pieces of the day.
I got sick a little over a year ago. What I originally thought was the flu hung around, made my hands and feet begin to tingle, caused my joints to freeze and turned my life completely upside-down and inside-out in less than two weeks. I spent weeks nearly immobilized and continue to deal with some sort of symptoms on a daily basis.
There's a lot of information about fibromyalgia out there, lots of it conflicting. I want to share what fibromyalgia means to me:
- There are days that I feel as if every inch of my skin is bruised. The slightest touch causes pain. Even something as simple as snuggling my kids can leave me feeling extra tender.
- There are days that my leves of exhaustion are nearly intolerable.
- I have trouble finding words when I'm speaking and writing…which is incredibly frustrating for someone who truly loves words. It bothers me to have to be corrected or told that what I'm saying may not make sense. My brain just feels fuzzy sometimes.
- I can feel isolated. I don't look sick (although I do sometimes look a little extra tired), but I've come to know that I have certain limits that can hold me back a bit. Fibromyalgia is a vague diagnosis that essentially means we can't find anything else wrong with you but you have these symptoms. It's hard to explain that sometimes.
- My feet cramp easily.
- My sleep cycles are a mess. I've come to take falling to sleep very seriously.
- If you were touch a few certain trigger points (particularly on my back), you could bring me to my knees in pain without much effort.
- Hot and cold affect me differently. I've learned to be very careful where the air conditioner vent in the car points – it can't hit me directly or it can be excruciating. And from last Spring until just recently, I didn't sweat when hot – just kept getting hotter and hotter. I will say I've turned into quite the champion sweat-er at the gym now.
Thankfully, I don't live with all of these on a daily basis. It's a bit of a fibromyalgia roulette – I'm never sure what's going to hurt or how I feel each morning when I wake up, and I never know exactly what the day will bring. If I could describe fibromyalgia in just one word, it would be frustrating.
Here's what is working for me right now:
- Savella - after a very bad reaction to Cymbalta (massive hair loss, hand tremors and stuttering), I was very hesitant to try another prescription but I'm so glad I did. Within 4 days of starting Savella, I was able to get out and walk for exercise…for the first time in nearly a year. It's made it possible for me to to exercise 5 to 6 times a week and begin a rather grueling workout schedule at the gym. It's pulled away a few layers of the fuzziness.
- Exercise has become an absolute must for me. Whether it's a half hour of walking in our neighborhood or an hour at the gym…the more I can move my aching muscles, the better I feel. The stronger I get, the better I feel. The longer I work out, the better I feel. It is a fight every single morning to get out of bed (often with frozen joints), put on my workout clothes and cross trainers and head out that door, but it is a victory that is worth the effort. There can be a very thin line between just enough and too much, though.
- Clean, healthy eating and nutrition has been a passion of mine for many years, but never has it been more important to me. I've removed most of the wheat from my diet as well as refined sugar, and that has helped how I feel significantly. I eat red meat rarely, stay away from soy products that haven't been traditionally fermented and avoid MSG at all costs, a few more personal pain triggers I've discovered. Lots of produce (and lots of raw produce in particular) is good. Nuts are good. Beans are good. Healthy fats -olive oil, avocado, butter, coconut oil- are good.
Side note: I'm still planning to share a bit more about the specific reasons for some of the things I do and don't eat like coconut oil and soy in the near future…just trying to find the time.
- I've learned to follow my body's cues. If I'm tired, I rest. If I need to lay down, I do…but not for too long. When I'm ready for bed, I go. When I wake up, I get up and get going.
- I've lost nearly half the weight fibromyalgia caused me to gain. Within the first two months of not feeling well, I gained nearly 40 pounds. I gained nearly another 30 in the four months following for a total of almost 70 pounds in about six months. It didn't matter what I ate or what I did. Cutting out the refined sugar and flour was the first step and helped me take about 15 off. Since starting the Savella, I've lost another 16. The more weight I take off, the better I feel.
- I am learning to deal with stress. We've made some big decisions as a family that are certainly helping with that, but I am trying to process, pray and let go.
I have faith that the life God wants for me isn't one ruled by pain. I read and learn about fibromyalgia, but not too much. This syndrome isn't going to get the best of me. I will live with it, but I will not suffer from it and I certainly will not allow it to become the master of my life.
WebMD has some great, basic resources if you're dealing with or think you might have fibromyalgia, as does the National Fibromyalgia Association. Oneof the most frustrating things about fibromyalgia, though, is that there is no one-size-fits-all protocol that works for everyone and there are still many doctors (my previous one included) who believe it's all in my head.
Seek, search, pray, try…that is what I know and that is what I will do.