If You’ve Been Newly Diagnosed, Here’s Some Advice

I’ve received several comments about my column from people newly diagnosed with fibromyalgia who are looking for advice. Fibro doesn’t come with a handbook. There are no simple guidelines laid out for us to follow. We are on our own. Most of us are left to sink or swim. We are left to deal with this horrible illness while being shunned or ridiculed by friends and family. Here is some advice I wish I would have received three years ago when I was diagnosed with FM.

Educate yourself. Research fibromyalgia online. Read e-books, listen to podcasts, watch YouTube videos. Visit support groups online to see what other fibro warriors experience. You can get advice straight from the real experts. There are a lot of resources available at your fingertips. Knowledge is power.

Seek a different doctor or get a second opinion. If you believe your doctor doesn’t listen to you or ignores your symptoms, find another. After wasting years of my life and a lot of money on doctors who didn’t listen to me, I’ve finally found providers who take the time to understand my needs and work with me to achieve my goals. I’ve gone out on my own to find treatments that work. I still see the same primary care physician for other things, but not when it comes to fibro.

It may be a good idea to see a nutritionist or discuss possible dietary changes with your doctor. I’ve complained of stomach issues since I was in grade school. Never once, in almost 50 years, did I have a doctor inquire about the foods I was eating. None (and I’ve seen a lot of doctors in my lifetime) have ever given me suggestions or ideas when it came to my diet. Instead, I would get referred to another physician, or I would be given an expensive test and put on medication when they couldn’t figure out what was wrong. After having a Nutrition Response Test, it was determined that the pain was caused by sugar and simple carbohydrates. I wish I would have seen a nutritionist years ago!

When you do go to the doctor, bring a list of symptoms with you, and maybe even a friend or loved one. Having another set of eyes and ears can be very helpful. My brain fog made remembering all my many symptoms and my doctor’s recommendations almost impossible. I’m thankful my husband sometimes comes with me. He’s brought up issues and asked questions I never would have, and his memory is way more reliable than mine.

Talk with your friends and family about fibromyalgia. Send or link them to articles and other online resources that will give them a better idea about what you are going through. Come right out and warn people that you may have to cancel plans at the last minute or miss important gatherings because of your health. Let them know you can’t handle humid or cold weather. Explain what a flare does to you physically and emotionally. They can’t support you if they don’t know what you are going through.

That leads to my next piece of advice: Don’t let anyone steal your joy! I think all of us FM sufferers have had at least one friend or loved one accuse us of faking our illness or of being a hypochondriac. People can be mean and ugly. Don’t let anyone make you feel like you are a failure or that you are less of a person because of fibromyalgia. They are the failures; they failed at being a good friend and caring loved one.

Please don’t feel like you are alone. We are all fumbling along right beside you. Please don’t let this illness destroy who you are deep inside. Fibromyalgia does change us, but we shouldn’t let it define us.

What words of wisdom would you give to a newly diagnosed warrior? What do you wish someone would have told you?



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