33 Things People With Fibromyalgia Wish Their Doctors Knew

In an ideal world, every doctor would have an immediate understanding of a patient’s medical history, symptoms and everything he or she goes through. Of course, that’s not exactly realistic (doctors are only human, after all), but there is always room to learn more about the patient experience.

We asked people with fibromyalgia in the National Fibromyalgia Association’s Facebook community and our own Mighty Facebook community the following question: what’s one thing you wish doctors knew or better understood about fibromyalgia? After receiving more than 1500 responses, it’s clear there is a lot to be learned.

Here’s where we can start:

1. “The true depth of the pain and fatigue. You can describe it all day long, but until they’ve felt it for themselves, they cannot truly understand.” — Beverly Surber

2. “Every day is a struggle. The pain is real. The exhaustion is real. The depression is real.” — Dawn Politte Patchell

3. “It is not just debilitating pain and fatigue, which is bad enough. It is an overwhelming feeling of being unwell in every way.” — Christine Mercer

4. “I wish they’d stop telling me exercise will help because I’ve tried, and it only makes me worse or more fatigued.” — Shirley Baggaley

5. “I am more educated about my illness than their typical patients… Doctors need to know us fibrofolks tend to be better educated on fibro than they are.” — Amy Jordan-Meeves

6. “I wish doctors understood that I don’t enjoy taking prescription pain medication. I would love nothing more than to go even a day without taking any pain medicine, even over-the-counter. Pain medicine isn’t fun for me. It makes me nauseated, dizzy, shaky. I hate it.” — Sandi DiMarco

7. “One person’s fibromyalgia is not another person’s fibromyalgia. I believe each of us deals with our own pain and symptoms.” — Laura Spradlin Hamilton

8. “I’d like for the fibromyalgia stereotype to disappear. I don’t tell everyone I have fibro because the stigma can be so bad. There are a lot of doctors and nurses who will completely dismiss you as soon as you say fibromyalgia.” — Amanda Harris Velez

9. “Fibromyalgia is like a chameleon. The longer I’ve had it, the more it changes almost daily. Just when I think, aha, I got this, symptoms change.” — Marlene Goulden

10. “I would like them to know we are not drug seekers!” — Stacy Reyes

11. “I wish they knew what actually caused fibromyalgia so there is a better chance of curing it.” — Jill Splettstoeszer Erickson

12. “There are no pain-free days.” — Tracy L Terry

13. “It is an invisible unless. I might look fine on the outside but be in debilitating pain on the inside.” — Niki Everette

14. “I wish doctors would fight for us to have fibro and/or chronic pain included on every medical marijuana program in every state.” — Christine Hasenauer

15. “I wish they could figure out what causes fibro fog and the true effect it has on fibromyalgia sufferers.” — James N Surrells

16. “The pain can be so intolerable; it affects your quality of life, causing frustration and anger. However, when someone finds a medication that works, and it provides a better quality of life for an individual, but they are denied access to it, it causes stress and exacerbates the pain. Even when access is given, there is always fear that what is working will be taken away from you.” — Leslie Jones

17. “Fibromyalgia does not care how old or young you are. I’m 28 and was diagnosed at 22. It’s sad and discouraging how many doctors have said to my face, ‘Oh, but you are so young!’ As if that would miraculously make me better.” — Ashlen Bones

18. “It’s possible that not every symptom, other than pain, is due to fibro! Stop labeling everything as fibro-related and look at causations, not just symptoms.” — Dawn Kordelewski

19. “It’s so much more than pain and fatigue. Fibro affects every system in my body!” — Jeannie Mar

20. “The 1-10 pain chart doesn’t really apply to fibro patients because we hurt all the time.” — Lisa Edmonds

21. “Not just for fibromyalgia, but with any illness, I wish more doctors knew their limitations and were humble enough to say, ‘I don’t know enough about your condition, but I will either work to learn more or refer you to another doctor to make sure you are getting the best possible care.’ Too often, I see doctors replacing ‘I don’t know what to do’ with ‘There’s nothing wrong.’” — Missie Crisp

22. “Yes, everything hurts. Not just one part of me, everything.” — Melissa Warburton

23. “I wish they understood how hard it was for me to go to them in the first place. I wish they knew how much I don’t want to be in their office again.” — Rose Dupree

24. “One size does not fit all where this condition is concerned. One case is not like another, and one day is not like another for the same person.” — Laurel DenHartog

25. “Pain is just one aspect of fibro. Please ask me about the other aspects, too. When they don’t ask, I feel like the other parts don’t matter, but for me, they are bigger issues than the pain.” — Martha Katz

26. “It is not all in my head. It is from my hips up to the top of my head, in fact!” — Alayne Stewart Langford

27. “It leaves me exhausted. I think to some extent doctors understand the pain, the shaking, the headaches. But I have yet to meet a doctor who truly understands the tear-inducing, blurred-vision-causing weariness. The 16-hours-of-sleep-and-still-tired exhaustion.” — Sheila Capps

28. “I am never not in pain. When I say I’m doing well, it means the pain is at a level I’ve learned to live with, not that it’s gone or good.” — Julia Moore

29. “I wish my doctors were better able to understand and help with my brain fog. I feel as though, cognitively, I have declined significantly over the years. This scares me, as I wonder how it will impact my geriatric years.” — Sabrina Ganske Guillaume

30. “It’s extremely frustrating having test after test that ‘proves’ there’s nothing wrong, or being told it’s all in your head. I know my body. I know when there’s something not right.” — Mirella Joy

31. “I’m not in pain because I am depressed. I am depressed because I am in constant pain.” — D’Ann Maria Kirkwood

32. “I don’t make up my symptoms. I am in actual pain. I reach out for help, not for attention.” — Tiff Paige Miller

33. “I wish they could walk in my shoes for a day and see how much I struggle, yet how strong I really am for all I go through.” — Jenny Kerestus