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How does Fibromylagia Feel?

Updated on August 14, 2012

When you have fibromyalgia you spend a lot of time and breath telling people that you’re fine. But sometimes that’s not the answer people want and sometimes that’s not the answer you want to give because you know what? It’s not true. Not even kind of true. And sometimes it’s okay to acknowledge how hard it is to live with this disease, it might even feel good.

If you are open about your condition you are probably asked what it feels like from time to time. Of course many of the people who ask you either a) have no idea what they’re getting into and would really rather not hear the answer or b) are genuinely curious and are about to get their mind blown. It’s your job to figure out which one is asking this time and find the most appropriate answer but in either case these people have no idea what a difficult question they are asking.

If you’re a reader who doesn’t have FMS and are here because you’re trying to get a better understanding of what a friend or loved one is going to you then: hat’s off. Taking this step means a lot and I’m so glad you’re here. You may never be able to fully understand what you’re loved one experiences but this will go a long way to helping him/her feel less alone in the world.

Here are some readymade responses that might help:

People Who Have No Idea What They’re Getting Into and Would Really Rather Not Hear the Answer

What does FMS Feel like?

  • It hurts.


  • Everywhere.

In your muscles?

  • No, it’s nerve pain.

What does that mean?

(This is usually the final caveat for these people)

  • You know how your nerves receive signals to tell you that you’re touching something? Well when you have FMS all the nerves are sending back pain signals, all the time, no matter what.

And now they’re uncomfortable but at least they have an idea and they may stop suggesting you to exercise more or drink more water.

People who are genuinely curious and are about to get their mind blown.

You can’t really help but feel bad for these people because odds are they love you and knowing what you’re going through on a daily basis is going to be heartbreaking for them but if you had a loved one with FMS would you want them to fudge it and claim that it wasn’t so bad? I know I would want to know so that I could better appreciate their struggles just as you might want a friend to be honest with you if they were struggling with depression or a divorce.

Start with the line of questioning above, if they keep asking respect their concern for you and be honest


Can you give me an example?

  • You know when you have the flu and your whole body aches and you feel awful? It’s like that but multiplied exponentially and all the time.
  • It feels like I was in a car crash/beaten up the day before, but every day.
  • You know when you sleep on a really uncomfortable bed and you wake up sore and tired and you just want to curl up somewhere warm and comfortable to get some real sleep? I feel like that, but much worse, every morning, and all day, and there’s no such thing as comfortable.

How bad is it?

  • I would give/say/do anything, including incriminate you or exchange both my legs to make it stop.

That ought to finish that very uncomfortable conversation.

If you have FMS you know that as dramatic as the above may sound it’s true and it’s hard to tell someone you care about these things because you know it’s going to be hard for them to hear. But reverse the situation. That pain you feel, if your child/spouse/parent was feeling that would you want them to keep it to themselves and try to deal with it alone?

For the loved ones of FMS sufferers:

Yes, what they feel really is that bad. I can’t imagine anyone living with FMS and not occasionally asking themselves the question “Is this worth it?” So be kind, be compassionate. Even the simple act of getting out of bed or sitting on a hard wooden bench is painful and difficult for him/her. Don’t suggest you understand, hopefully you never will, but know that it’s awful and he/she is working her ass off every day just to be alive.


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    • ar.colton profile image

      Mikal Smith 5 years ago from Vancouver, B.C.

      Thanks for stopping by Sannel. I'm glad you found a doctor who would finally listen and diagnose you. Good luck with everything!

    • profile image

      Sannel 5 years ago

      I suffer from fibromyalgia and Chronic Fatigue Syndrome, CFS- also known as ME. I had it for many years but it was not until about a year ago, the nightmare of being pushed around to different doctors, telling me this and that, trying out their medicine on me, that I finally hit the jack pot when one doctor understood me and my symptoms, and diagnosed me with FMS and CFS. What a relief to finally know what was wrong with me but also shattering since I know that meant I must live with this horrible pain and exhaustion the rest of my life. You did a beautiful job explaining how it is to live with fibromyalgia, and this article will help many who does not have FMS to understand this disease a little bit better.

      Thank you! I will keep you in my most positive thoughts and send you a gentle hug from me and Sweden. I also like to thank Epigramman for sending me this way.