Carol Sands' Story

What were the steps leading up to your diagnosis?

I use to come home and feel like I was coming down with the flu. I would take some Tylenol, go to bed with a heating pad and feel better the next day. That went on for a long time. I would go to doctors to try to get a diagnosis, but they never could see anything on an x-ray or blood test. I was told many times it was all in my head.

I started seeing a chiropractor who told me he wasn't helping me – he thought I had more of a soft tissue problem and referred me to his massage therapist. Because I would wince in pain when she touched certain areas when she was doing the massage, she suggested I might have something called fibromyalgia. Not a lot was known about fibromyalgia in those days; but as I had just read a magazine article about it I told her I, too, thought I might have it. That was in 1991; I wasn't officially diagnosed until 1995.

I believe the cause of my fibromyalgia was a car accident I had in 1986 combined with the flu that I had a week later. I had problems before ’91, but the flu-type symptoms of achy body excessive tiredness began around that time.

What lifestyle changes have you needed to make?

I stopped working, learned ways to do housework that didn't cause flare-ups, and learned how to exercise each day – there is a very fine line between not enough and too much exercise. I use a pillow now when I go into restaurants to support my back (I also have scoliosis) as sitting in the wrong chair will flare me up in a heartbeat. I have also learned to say no when I'm not feeling up to doing something. That has probably been the hardest thing for me, because I'm not used to telling people no. I see a chiropractor three to four times a month and also get a massage at least once a month.

Who has been there for you? How?

First and foremost the Lord has been there for me. Whenever I am frightened or worried that another symptom is something serious (but ends up being another symptom of fibro) it is the Lord who speaks to my spirit telling me where to look or who to talk to or what scripture verse to read that will bring me comfort.

This is a hard illness to have and you lose a lot of friends; they don't take you seriously and family members don’t either. If you look well and continue to make an effort in spite of your pain, they assume you can't be in that much pain. It's also an invisible illness. Many who find out I have it are shocked; they tell me, "But you don't look sick," and I ask them, "What does sick look like?" Or I tell them that unless you have cancer and are going to chemotherapy and have lost your hair, or have a bad cold, most illnesses are not visible. I think it catches them off guard; but maybe it encourages them to think about other people in their lives who may struggle, too.

Really the most supportive people have been those who have fibromyalgia or another chronic pain illness. My family and friends are well-meaning, but they really don't understand. I recently wrote a letter to my family and had them all read it. My husband in the past tried to be understanding and supportive but he really didn’t have much patience. Until I really laid it all out in that letter about what it's been like to have this for the past 23 years, he would just say, "I know," if I said I wasn't feeling well. Since the letter he has been very kind and understanding and much more supportive. I think all along he's known; he just hasn't wanted to accept it because most men are fixers and love a challenge, but this is one he cannot win. I wish I had written the letter a long time ago but perhaps it just wasn't time; maybe it would not have been as well received.

What accomplishment are you proud of?

I’m proud that in spite of all my health issues (and a husband who worked 60-70 hours week and was unable to help with the kids much) I successfully managed to raise two sons who are hard-working, goodhearted, loving husbands and fathers.
I attended their plays and sporting events, volunteered at school, kept a tidy home and provided meals each night. I helped with my dying mother, aunt who had a stroke, and sick granddaughter, and was strong for my family through six deaths – four of them in 2014 alone.

To some, it might seem as though I don't have a very bad case of fibromyalgia, but I was once told that I had one of the worst cases my doctor had ever seen. I am big time Type A and feel it's my job no matter what to handle it all. I can never say no, as the guilt overwhelms me when I do.

What's your advice to someone else living with Fibromyalgia?

Find a good doctor who cares, listens and believes in fibromyalgia; but also be your own advocate (because many doctors won't be). Eat sensibly and exercise each day; it’s so important to learn how much is enough and how much is too little; if meds help, don't be afraid to take them, but do educate yourself about them – I have a friend who has been on Arthotec for 10 years and is now experiencing kidney failure because if it.

Also, learn your limitations. I've had to and it's been hard to say no to people when I'm not up to something. What I've learned is I'm not Wonder Woman and it's time I stop trying to act like it. Above all if you don't already, get to know the Lord. I honestly don't know what I would do without Him; He is my comfort and strength.

Is there anything else we should know?

I have a strong passion for caring about others. I've learned one of the best ways to take my focus off of me is to care for another. You don't have to look too far to find somebody else that's worse off, that's for sure. I think this stems from the pain I have endured in the past 28 years.