7 Things Fibromyalgia Patients Want You To Know

Living with fibromyalgia is no walk in the park. This is a condition that is, most of the time, misdiagnosed or even undiagnosed. Patients who suffer from it, are often unaware of what they’re actually suffering from.

Read our columnist, Robin Dix’s take on the things that blindsided her when she became ill.

Sometimes people who live with fibromyalgia don’t know how to explain it. Because it’s an invisible illness that doesn’t show many external signs, it can be difficult to understand what patients are really going through. In this video shared by Fibromyalgia Treatment Group, learn seven things that patients living with fibromyalgia would like their friends and family to know.

Find out how Nancy fights her fibromyalgia flares.

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.

24 comments

  1. Sara says:

    I am an RN. If I were to apply for a medicinal Marijuana card in the state of Illinois, I will loose my licence. No hope for me until the laws change.

    • Em says:

      For someone w/ fibro there is no help at all. Do you have fibro? I would not want to use a C patch or any other narcotic as I have seen what these type of things has done to others.
      Sorry there is no hope for you and I am sincere in my words. Fibro is dastardly and so is chemical dependence.
      I have lost nearly everything and everyone. The friends and family were not real at all. They would prob rather I would die as there are some who would prosper immensely.
      Material possessions mean nothing. I am not homeless because I was once able to work.
      Yes, I feel lesser than and am treated lesser than because of ignorance.

      • Colleen Durrett says:

        EM, if you read this article. It is not the THC that helps, so it is NOT a narcotic. That is the misconception about marijuana is that you will get high. NO you will not, so no worry about what you have seen “happen to others” that you mentioned. That is why it helps epileptic children. It is the CBD not the THC that helps. Hope this helps you become more educated on this very helpful medication. THAT is why it is soooo much better than narcotics. You cannot get addicted and ruin your health and your life.

  2. Caroline Carlson says:

    Help me. I am in pain every single day. I’ve gone to doctor to doctor and even rheumatologist who don’t seem to get I am very sick. I can barely sit up. Joint pain, maker rash at times, severe tiredness, I hurt from head to toe but severely in joints.

    • Tim Bossie says:

      We are so sorry to hear about your struggle and pain. Are you under the care of a physician? Are you taking any medication? Have you looked into a support group near you?

      • Caroline Carlson says:

        Thank you. I am on gabapentin and soma, atenolol, lorazepam and I’m diabetic also so I take byetta and glimepheride. My joint pain level has increased to maybe a 9. I live this way everyday. I’ve been asking my doctor for pain less and cannot seem to get anything besides a Tylenol 3, and am told to take that sparingly. My Ana is positive with a specked pattern and c reactive proteins high and sediment rate is high.

      • Em says:

        Every medication prescribed for fibro I have had severe allergic reactions and not into narcotics. The C-patch sounds way to far out in left field. At least I was able to work and pay into the system so I am not homeless. I am w/o friends and family. My desire to continue on doth wain.
        So saddened by all who have been diagnosed w/ this dreadful affliction. I was even kicked to the curb as a head case because of ignorance.
        Now I merely exist. In my faith suicide is a ticket to Hades or I would have opted out before now.
        Discouraged and Depressed

        • Tim Bossie says:

          I am truly sorry for the way that people have treated you because of this disease. Don’t give up the hope though. Tomorrow just may be the day when someone comes into your life, or a new discovery is made to help with your pain.

        • Mike Back says:

          I live that everyday of my life for the last 6 years. Family and friends…. Gone. People who I’ve helped out…. Gone gave up everything I had to help my dad with his cancer, it went into remission, my fibro did not. And that SOB has the nerve to look down at me and I’m stuck in a God awful state, freezing, can’t move, everything hurts so bad I want to cut it off, but he’s enjoying a football game. Taking long walks through the woods, and enjoying life while his son (me) who gave up everything to come help him is looked as as no more than a drug addict pill popper who doesn’t even get the dignified courtesy of a text, call, or hey son, do you need anything? Ide take that bullet anyday if I knew it wasn’t a straight ticket to hell, but sometimes, I think I’m already there.

          • Em says:

            So sorry Mike. I understand and there are times a bullet sounds like the thing to do. I also see those I have helped living full lives-not jealous. I pray and even say to God, “I am not Job”. Still breathing and so lonely and hurting so badly I would welcome death.
            You are not alone in how you feel. Try to not be resentful as this only causes the pain to be worse in your body and your spirit.
            would that I could do something to help.

        • Babs says:

          I have the same faith beliefs but also the same problem. Why we have to suffer this way is beyond me, I pray daily that I will wake up one day pain free, the way I use to be before fibromyalgia took over my life…

    • Kat Rogers says:

      Hi Caroline~
      I So Feel For You!! I have had severe fibromyalgia for 14 years, and even though I am lucky enough to have found doctors who have been very helpful and I am on pain meds, I’m still in pain most every day. Anyway, that’s not so much why I am replying to you… Have you been tested for Lyme Disease? What is a “maker rash” (There’s nothing on Google about that.)? Fibro does not usually cause joint pain, and especially Not to the degree that you are experiencing! I imagine you were tested for RA. But, from what I’ve read, it really sounds more like Lyme Disease. And getting treatment is not any easier with this Horrible disease! Insurance companies are trying very hard to Pretend that this is something that is Not Real… Our medical system is Awful and It’s About To Get Worse! I will Not get started on that topic! I hope that I may have shed some light on your situation and I Do Hope You Find Someone Who Will Help You! Oh, one last thought… Have you looked for a pain management doctor? While you may need a diagnosis first, these doctors are more open to prescribing pain meds. And Please Do NOT Listen To These Ignorant People Who Say You’ll Become Addicted… There is A HUGE Difference Between DEPENDENT & ADDICTED! My Very First Pain Doctor Told Me This… Like A Diabetic is DEPENDENT On Insulin, WE WHO ARE IN CONSTANT, LIFE CHANGING PAIN ARE DEPENDENT ON PAIN MEDICATION. We are NOT addicted! The People Who Say That Are Completely Ignorant, Meaning They Have NEVER Experienced Anything Even Remotely Like This. Do NOT Listen To Them! You Are The Only One Who Can Take Care Of You! Blessings To You! Sorry, one more thing: If you are looking into online support, PATIENTS LIKE ME is An Awesome Website That Covers Most Every Ailment Known To Medical Science and They Are Very Helpful!

  3. Sandi says:

    Caroline unfortunately this happens to alot if people including myself. I complained if chronic pain for years and unfortunately there are so many factors that can cause this! It’s difficult for doctors to diagnose because of this but it helps if you can do your own research as well. Especially looking into your family health issues. Especially your parents and grandparents. I started searching for answers since I was in my early twenties and I’m 55 now! At 40 I finally found out my mother was diagnosed with fybromyalgia and did my research. Exercise helps alot! I also realized that the amalgam fillings were causing alot of issues with my health (chronic pain and fatigue) as well as food and other allergies. There are so many more factors that can effect us but in my experience you researching and practicing good healthy habits can help you cope with this pain until you and your doctor’s find out what is causing it. I pray you find answers.

  4. I have had so much pain in my feet. The bones feel broken and every night I see my feet are full of fluid. The Rheumatologist said it is inflammation. I thought it was diabetic neuropathy. To stop swelling, pain, inflammation you have to stop eating things with gluten like bread, donuts, cake, noodles, do not eat barbeque – burnt part is carcigenic and creates more inflammation, do not eat fried foods so you must bake or boil your meats, avoid nightshade plants: Peppers, Potatoes, Tomatoes, Eggplant, etc. all of which definitely cause swelling. – Buy Proteolytic Enzymes which break down the fibrin floating in your blood and causing pains too. NUMBER ONE PROBLEM IS EATING SUGAR. Do not use artificial sugar in its place. Perhaps you could use date or coconut sugar or honey. (Organic) Use a little fresh fruits and lots of vegetables and greens. Filtered water. Organic milk, grass fed beef, range free chickens and eggs. Exercise daily at least 20 min. (Doctor gave me two things to bring down inflammation but they will be temporary. I noticed these made me feel normal and my foot pains and fat feet went away. My skin was getting discolored from so much inflammation.) More info at LoseTheBackPain.com God Bless….I hope you feel better soon.

    • Doris says:

      Aronia Berry tea has helped a lot with the inflammation. New to this area but has been around for a long time and used a lot for arthritic.

  5. Em says:

    It seems we are here to encourage on another. I have family/friends i have helped many times in the past. I have adult children and grandchildren that I love dearly. I psych myself up, push past my limits to be a part of their lives and be the happy, joyous entertainer, the baker for holidays only to not be invited to any of the family gatherings because of being on disability. The family reject and embarrassment because I do not live in nice, big house and own lots of land. Yes, it all about the “bucks” and not love. I have given up. I worked and stressed this bod so much in an effort to love and accepted that I am now reaping what I have sown.
    Being a person who lives only to please others reaps nothing. I am not sorry I did so. I only wonder where these people have gone that I did help and love. Those of us in this world of greed have no place in society or w/ family.
    If the way to get ahead in life is by lying, cheating and stealing then I want no part of of it.
    I have learned the hard way that doing unto to others as I would have them to unto me is advice.
    I have done this to myself trying to get love and acceptance.
    I pray for those of us who have been rejected and that those whom have done so do not ever experience the emotional and physical pain that many of us here have know and are living w/ daily. Loneliness and shame are destroying. Love means nothing to many.
    Thank you to anyone who does understand.

  6. Barbara says:

    20 year veteran of fibromyalgia..The last 10 very challenging,lonely isolating…last 6 months especially hard…I relate to all of these comments…We can only hope that everything we try to do for ourselves will help us cope day to day…the depression from the pain has tried to make me hopeless…I have to heal myself..better choices in eating…know that family and friends at never understand while I am still on planet earth..God bless all of those out there who do relate..thanks for supporting each other!!I ve been through the painkillers that nearly killed me many years ago..natural holistic ,the only way for me

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