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Author and Life Coach Martha Beck recalls the decade she waited in pain before her fibromyalgia diagnosis, describes her new life living with the incurable condition, and advocates for other women who are suffering.
Todd Hartley:
Fibromyalgia is an increasingly recognized chronic pain illness of widespread muscular skeletal aches, pains, stiffness, soft tissue tenderness, general fatigue and sleep disturbances. To talk about fibromyalgia I am joined right now by Martha Beck. She is the author of “Steering by Starlight: Finding Your Right Life, No Matter What!” She has lived with fibromyalgia for 30 years and she is also a columnist for “O” the Oprah magazine. Hi Martha!
Martha Beck:
Hi, thanks for having me.
Todd Hartley:
Look, you’ve dealt with this for a long time. Take me back to the beginning. As you know, increased sensitivity of pain is the main symptom of fibromyalgia but prior to being diagnosed, what were your first symptoms of fibromyalgia?
Martha Beck:
Yes, the first warning symptoms; I could not get up for 12 years.
Todd Hartley:
Wait, what do you mean you couldn’t get up?
Martha Beck:
I was basically in pain, severe pain for about 12 years. The onset for me was when I was hit by a car while I was jogging. I was very active like most people who come down with fibromyalgia. I was 18 years old. I was hit by a car and I had back and leg injuries and the doctor said, “Well just lie down and rest until it goes away, the pain goes away,” and the pain didn’t go away for 12 years and eventually, in fact it got worse and it gradually spread all over my entire body and nobody knew what it was.
And I had, like most patients with this condition I had a decade or more of misdiagnoses, people telling me that I was faking it, that I was a whiner, that it was nothing, that it was all in my head - pretty typical for someone of my generation with this particular condition. So it was not fun.
Todd Hartley:
Martha, is there a test for fibromyalgia? How were you first diagnosed?
Martha Beck:
There are diagnostic criteria, but a doctor could tell you more about. It’s, one of the things that I am trying to do is really encourage people to go to this website knowfibro.com because it has a lot of the new medical research that doctors on the site can speak to better than I can.
So, I was diagnosed by a wonderful, young doctor who’d just finished medical school and he said, “Wait a second, there’s something in one of my textbooks.” This was 16 years ago. So he went and he got his med school textbook and found one paragraph and he said, “I think you may have this,” and as he read the paragraph I just knew that he had hit it, and that moment I really consider to be sort of my second birthday because that moment I started treating the condition for what it was and I started getting better and my life became happier and more pain-free from that moment on.
Todd Hartley:
You said you just knew when you heard him read the parts about fibromyalgia. Quickly, can you tell me about that knowingness that you had. You know, it seems like a woman’s intuition, but it’s something deeper than that. Can you talk a bit about it?
Martha Beck:
Yeah, there was something, and men also have fibromyalgia and intuition, but after so many misdiagnoses and so many disappointments I had pretty much run out of hope. But also when you have gone through that much physical suffering and psychological suffering you start to get more intuitive I think, and people would tell me things to give me hope and it would start to sound really hollow and I don’t know why when he read that paragraph, everything in me, my whole body reacted and said, “That’s it; you’ve got it. This is going to fix it.”
And you know, if I had had the Internet when I was 18 years old, if I had been able to Google my symptoms and I had heard that paragraph 12 years earlier, I can’t even imagine how different my life would be.
I don’t feel bad that I had fibromyalgia; it turned out to be a great teacher for me, but boy, if we can send that paragraph to some people in their homes at the onset of their illness instead of after 12 years, that will be … we will have done a good day’s work.
Todd Hartley:
Yeah, the website knowfibro.com – it’s co-sponsored by the National Fibromyalgia Association and Lilly USA. Martha, do you have any tips for women who are struggling with fibromyalgia?
Martha Beck:
I do and one of the things they did with the website is that they put those tips in a booklet, along with my whole history, and you can download that. One of the things I did, for example, was I kept a pain journal. I journaled everyday and I would just rate my symptoms from 1 to 10 and what that allowed me to do, I was actually getting a doctorate in sociology at the time so I was kind of statistically reminded and I was able to look at, over time, “Wow, certain things correlated with increased symptoms,” like the psychological stress seemed to make it a lot worse, certain types of activities, cold, just, I was able to start modifying my behavior so that I started to get less pain even before I was diagnosed.
Once I was diagnosed I was able to apply medical knowledge as well and then I got better much, much more quickly.
Todd Hartley:
You mentioned that you have always been very active…
Martha Beck:
Well, except for the 12 years lying down.
Todd Hartley:
Except for the 12 years lying down, but how important is it for women with fibromyalgia to continue to exercise?
Martha Beck:
It is, Dr. Daniel Clauw, who works with us on the website, says it is as close to a magic bullet as they’ve found.
Todd Hartley:
Really?
Martha Beck:
That said, if you are weakened and you are in pain, you do not want to over exercise. So we say, “Start low; go slow,” and that was another huge coping tip.
As soon as I got my diagnosis the doctor said, “It says here you can exercise,” and I had been told not to exercise for 12 years. So I went straight to the gym and I started to . . .
Todd Hartley:
Ut oh.
Martha Beck:
Well, I did over do it a little bit and I was in a lot of pain and then I was in pain that day, but the pain wasn’t worse.
So I went back the next day and I did a little more and the pain wasn’t worse and over time I started, because I had learned to know what types of pain signel the real injury like a cut or a tear in a muscle versus fibromyalgia pain, which had a specific, it’s like a flavor, you can’t really describe it, but you can experience it and so, I realized the pain from fibromyalgia was actually receding, but when I over-exercised I would do damage to the muscles because it was weak.
So we want to start people very, very slowly, but then build up to doing more and more strength training in particular and that has been my huge liberator.
Todd Hartley:
Now some 30 years later, what’s the status of your fibromyalgia and how do you keep it regulated on daily basis?
Martha Beck:
Well you know what, I have a little twinge in my lower back, but I just got back from three weeks in Africa where I went, I took a whole bunch of people out into the wilderness on a ‘change your life’ safari, flew 12,000 miles back and gave a week long seminar. That is where I get from, you got to understand, when I went to the doctor that day, I mean when I went to the gym that day after the doctor said you can exercise I was able to lift a 2-pound weight with my leg. Now I lift 200 pounds with that same machine.
Todd Hartley:
Wow!
Martha Beck:
So 30 years of building up mean that I am capable of stuff that I couldn’t do at all in my 20s and a lot of people my age now can’t keep up with me, frankly. So, it’s all because I learned to really respect my body and to just treasure every moment of health and it has turned out to be a great blessing and it made my life more active than I ever thought it could be.
Todd Hartley:
Well she is Martha Beck. She is a fibromyalgia patient. She is the author of “Steering by Starlight: Finding Your Right Life, No Matter What!”
For more information about fibromyalgia visit knowfibro.com and if you want to find out about Martha Beck you can see her at marthabeck.com. Martha, thank you so much for helping us advocate for women.
Martha Beck:
It’s my pleasure, thank you.
View More Videos On Fibromyalgia
Visit Martha Beck at her website
Learn More About Fibromyalgia at Know Fibro
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