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

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

finding balance

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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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

10 comments

  1. Carrie
    Your suggestions are spot on! The most important things we need to learn are to educate ourselves, be our own advocates and listen to our bodies. I think these things are are very important to sustaining us on our journey.
    Thank you

  2. danna grayson says:

    this is the worse thing that could have happened to me…why me???? I have went from being a strong wo,em to not being able to lift a gallon of milk in the mornings… i wake at night and cry my eyes out, Iam xcared i can not do much of anything any more.You can forget having a job.. Can i get disability because of this???? I fell like nothing, iam afraid to meet anyone, no one wants a woman like this. My god this is horrible

    • Bonnie says:

      Danna, we have all felt the why me?? feeling and all the rest that goes with it. This FM IS horrible and most of us still go through the 3 a.m. periods of grief. Please stay on these sites where you will find others to exchange info and feelings with. You ARE NOT ALONE, you can be one of us warriors and we all send you gentle hugs.

    • Jen says:

      You CAN get disability because of this. I have just applied. Just know that you will most likely be turned down initially,and you will have to appeal. Don’t give up!

  3. James milne says:

    Try meditation or other relaxation programs they have definitely helped me, many others have also recommended light swimming or floating around pool, know your limitations.

  4. Kitty Gibbs says:

    Great article, Carrie! Thank you! I know the focus is after a diagnosis, but with fibromyalgia an “accurate diagnosis” cannot be over emphasized. I was diagnosed two years ago at age 52 by my family physician, a rheumatologist, and finally a team of rheumatologists at the University of Washington. My mother, and we think her mother, both had it and it’s now thought there is a genetic link. Make sure that your physicians have, through a process of elimination, considered and tested you for several other conditions that share similar symptoms, like all types of arthritis, lupus and cancer. An accurate diagnosis can take time and may involve seeing several specialists to rule out other illnesses. My diagnosis took 18 months and trial of several medications. I’m now on Social Security Disability and spend most of my time managing symptoms and going to a warm therapy pool 2-3x weekly.

  5. Alison says:

    Yes to meditation it has helped me greatly. I also use guided hypnotherapy. Just loaded up to my MP3 player and if I wake in pain I pop the head phones on and listen. It always puts me back to sleep and reduces the angst.
    Stay strong and figure out what helps. Don’t look back to who you used to be it doesn’t help. Focus on each day. Rest inbetween. this was one I really struggled with. I love being busy but have had to slow down and that was really hard for me. Best of luck and lots of love everyone.

  6. Karen Nielsen says:

    I don’t remember which of the many doctors I have seen gave me this acronym “SHINE” to address Fibromyalgia needs.
    S – Sleep (I had a sleep study and found I have sleep apnea)
    H – Hormones (thyroid, adrenal, progesterone, estrogen, etc.)
    I – Infections (bacterial, viral, and fungal)
    N – Nutrition (vitamins, IBS, Leaky Gut, etc.)
    E – Exercise (Yoga, Tai Chi, Chiropractics)
    It has taken many doctors and tests and trials. But once I was able to address each of these, and find what works for me, I have felt much better.

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