Ribose and Fibromyalgia

My mom and sister bought me ribose to try as a fibro treatment. Normally, I do nothing for my fibro because  I've never heard anyone say something really actually worked.

But my mom tried this, and her sister did, and it worked for both of them.

I was still skeptical, but since Mom and Beth actually had the stuff sent to my house, I figured I had to try it.

When I was in first grade, I remember looking at the trees along the very top of the mountain ridge and thinking they looked like they were trekking along up there, like a pioneer train. By the time I was in sixth grade, I had forgotten I'd ever thought that. Had it even occurred to me, I might have thought I was mistaken. But the next year, in 8th grade, I got glasses. And then I could see the trees up there on their everlasting pioneer trek across the mountain ridges, and I remembered that I used to delight in looking at them. I had forgotten they existed because I couldn't see them anymore.

Taking ribose has been like that.

Just like I didn't know I couldn't see, I didn't know I didn't have any energy.

I had defined having energy as the opposite of being tired. And I knew how I felt when I woke up and I knew it took all day to get tired, and I didn't wake up tired or feel tired or sleepy all day. And my limbs weren't weary like they are after I go hiking or lift a lot of boxes, so I wasn't that kind of tired either. So it never occurred to me that I was lacking in energy.

But then I took ribose.

And--oh! This is what normal people feel like?  You mean moms take their kids places and do stuff on purpose because they want to, not because they have to? Oh! I remember feeling like this! No wonder I could walk 10 miles a day in Europe without blinking. And go hiking with my friends. And play ultimate frisbee. And have a job and, you know, do the job.

The first day, after just one dose, I got a headache. I had read this happens to some people, and to ignore it for the first 3 days. That night, when Tim came home, I was a little bouncy. I talked straight through, skipping from subject to subject, for at least an hour. Maybe two. He sat there a little stunned and then smiling and then just about laughing at me with a sparkle in his eye.

I haven't been hyperactive since then, though. No headache either. My body adjusted.

The first two weeks I took it, I took 1 tsp 3 times a day, stirred in water. I took it with food always to avoid the headache. And I had energy. Not buzzing with energy like the first night, but the ability to do work. The ability to engage my brain and have a conversation and get up and DO stuff. Any stuff.  But I also couldn't settle in and go to sleep at bedtime. I just wasn't tired. And that pushed my bedtime later every night, so it was a good thing you only are supposed to take 3 doses for 2 weeks because I was going to bed long past dawn (like 9:00 am!) at the end of the first two weeks. And 3 doses made it so that I just couldn't wake up in the morning. I was so drugged, I couldn't shake it off, even after 10+ hours of sleep.

I seem to have hit a sweet spot with 2 doses a day, taken at breakfast and at lunch or between lunch and dinner with a snack. One dose and I spend a long time just sitting in my chair all evening, and I can't get the kids to bed on time because I don't have the energy to get up and do the work it takes. Two doses makes me feel like a normal person, energy-wise, though. I feel like I did in college, before  my mission (which is when the fibro struck). I did stuff then. Took dance classes. Worked. Walked everywhere. My mind was engaged and curious and questioning and active.

Tim noticed. He noticed that I took the kids hiking with him. All the kids--all 7 of them. And I talk to him. And I'm up doing stuff with the kids. We made a goal to make every kind of cookie in our cookie cook book this year--and we're actually working on it steadily. We planted a freakin' garden. Seriously. A garden! I actually wrestled with Benji on the bed on purpose and was glad afterward. I smile more. We shook cream in jars to make homemade butter and I made not one but two lumps worth. I shook a jar for 20 minutes! Twice! And was glad afterward! I made 10 dozen chocolate chip cookies, 12 dozen snickerdoodles, a double batch of lemon bars, and 4 dozen orange cookies in 2 days for a party. And it didn't kill me! Or even phase me. The kids noticed that I talk to them more and for longer periods of time. I can engage with them more. There is no brain fog. Ever. Any time during any day.

Also, amazingly, I don't crave sugar anymore. I actually crave the kinds of foods I used to want to eat when I was a kid (apples!).

The downside, other than figuring out the doses so I can get the right sleep at the right hours, has been pain. I am feeling more fibro pain more often. I think that's because I moved around as little as possible for many years, and my body isn't used to moving around. At first, I felt a lot of pain every day. Now I feel less than I did at first--I don't know if that's because I added magnesium to my daily vitamins or because I'm adjusting to having energy. I'm hoping my body adjusts and that, as I have more energy, I can get more gentle exercise and that will help with the pain and movement. I certainly have had to learn how to treat my body gently even when I have energy. Before, I didn't have the option to not be gentle--I didn't have enough energy to not be gentle with myself. Now I have to choose gentle--and the pain is there to remind me when I miss the mark. It is pain without brain fog to numb it, too, so I notice it more acutely. But it's not unbearable pain. And it's not a new thing. This is my old familiar fibro pain. I know this pain, and I know enough not to be distressed by it because I know it is liar pain, not indicating my body is damaged or in danger, much like PMS is liar emotion, caused by hormones instead of human experience that needs to be processed and dealt with. Liar pain and liar emotion can safely be ignored, even though it's real. But the pain does still stop me from cleaning the house, even though now I have the energy to do it.

Is it worth it to gain more energy and pay by gaining more pain at the same time?

Are you kidding? Is there even a question?

Suddenly, out of the blue, I feel human again. And I didn't even know I lost that. I feel like a capable person who can do amazing things, think amazing thoughts, raise amazing kids, finish things, start things, dream things, make things, solve problems...Live.

I don't feel like superwoman. But I do feel like me again--a me I forgot existed.

What a lovely blessing. Who knew that a little box, ordered by my mom and sister, had a new life for me inside it--one that I didn't even know I wanted or needed.

Of course it's worth it.