If you or a loved one have been diagnosed with fibromyalgia, what’s the first thing you do after leaving the doctor’s office? If you’re like me, you spend hours (maybe even days or weeks) online, researching everything you possibly can about the condition, looking for clues as to what your future may hold.
But so often, Googling a disease brings up clinical websites with a short, bulleted list of symptoms and maybe a few sentences about treatment options and prognosis. Googling also often brings up articles claiming to reveal “miracle treatments” and “cures” that give people wrong and sometimes even dangerous advice.
This isn’t exactly helpful for you, your loved ones, or anyone educating themselves about fibromyalgia for the first time in understanding how the condition really affects patients’ day-to-day lives. And since fibromyalgia is not well-understood by the general public, it’s crucial that the information everyone finds on Google is accurate and useful. So we asked our Mighty community to share what they wish people would find when they Google fibromyalgia. The following might help give you an idea of what to know and expect from life with fibro.
Here’s what the community shared with us:
1. “There are hundreds of symptoms of fibromyalgia the [person] can experience. No two cases are exactly alike, and just because someone has different symptoms than someone else doesn’t mean either one is faking.” – Ashley A.
2. “Fibromyalgia is so much more than meets the eye. Symptoms are innumerable and may be physical, mental or often both. Still widely misunderstood (and often disbelieved altogether), fibromyalgia affects each patient differently and often fluctuates in severity on a daily basis. Do your research, don’t believe everything your doctors tell you and above all do not give up. There is an unbelievable amount of support out there if you take the time to find it.” – Linda C.
3. “Fibromyalgia: a disease with ‘invisible’ but real symptoms which include but are not limited to nerve pain (which can be sharp pain, burning pain, aching pain, etc.), brain fog (or confusion), severe fatigue and sensitivity to touch.” – Kate S.
4. “Not all doctors, friends or family will believe you. But your pain is real. It’s your body. Don’t let someone else become an expert on what you’re experiencing.” – Selena L.
5. “Please know that fibro is often resistant to treatment. Many [people] spend a great deal of time (even years) and money on treatments that often do not work. Also, its intensity can vary from moment to moment. You may have less pain and a burst of energy at 2 p.m. but by 2:20 p.m. you may be in the worst pain of your life with absolutely zero energy.” – Tiffany G.
6. “A disclaimer: Not all symptoms apply to everyone and severity of symptoms will vary from person to person. And there is so far no determined cause for this disease, therefore no actual cure!” – Moomi H. H.
7. “It is progressive! When I was first diagnosed my doctor told me the disease was not progressive. It’s astounding (and heartbreaking) how so many in the medical community still have so much to learn about the disease.” – Holly L.
8. “I actually would prefer they didn’t Google fibromyalgia and came to me for questions. There’s so much misinformation out there – not to mention all the links to miracle cures – that I’d prefer my friends ask me questions if they actually care enough to want to understand my illness.” – Heather H. C.
9. “This is a real condition. The pain is valid.” – Christopher T.
10. “It’s not my fault. I can’t think my way out of this. There’s no cure. It attacks me not only physically but emotionally because of the toll of trying to have a normal life.” – Taylor G.
11. “Just because it has a name doesn’t mean we really know much about it. There’s no definitive test, no known cause, no consensus on symptoms, no proven treatment and no cure. It’s very, very real, and yet we know almost nothing about it.” – Kate D.
12. “It’s not just ‘muscle pain.’ It’s nerve pain, muscle pain, fatigue, mental [health issues] and so much more. I hate when websites, articles and even doctors say it’s only muscle pain.” – Carrie M.
13. “Please, if you have someone with a chronic illness in your life, keep asking them to hang out. They may say ‘no’ tons of times but one time be able to. To be included is the best thing I can say my friends do. Know that people with fibromyalgia tend to feel guilty about the things we can’t do. Our brains and bodies are functioning on different levels. Just know that those with this need all the support we can get.” – Amber O.
14. “Don’t let your doctor blame everything on fibromyalgia. If something is different for you, pain or another symptom that’s different, make sure they check it out.” – Patti P.
15. “Fibromyalgia varies widely from patient to patient both in severity and optimal treatment. Some patients have severe disabling pain, others are able to continue with a somewhat normal life. Please realize that each person has to adjust according to the severity of their own symptoms, so even if one of your friends can accomplish x, y and z despite this illness, it doesn’t mean all of us can. There is currently no cure for fibromyalgia, and again, what works for some patients will not work for all. So even if you have a supplement, natural remedy or magic cure you are dying to share, realize your friend is not obligated to try whatever you recommend and many natural remedies could interact negatively with their current treatment plan. Please kindly keep all medical advice to yourself unless you are specifically asked to share!” – Alicia T.
16. “Just because it is not ‘visible’ doesn’t mean it’s ‘all in the head.’ It’s horrible pain that can make day to day life very hard.” – Hannah V.
17. “It will have you on a roller coaster of emotions. It’s challenging. We need support.” – Tasha S.
18. “It comes in a wide range of severities, from people who can still hold down jobs and maintain social lives to people who are completely bedridden. There is not a single standard you can hold all [people with fibromyalgia] to. This is not a cookie cutter condition.” – Anna G.
19. “It is not ‘in our heads.’ We are not faking. We are not lazy. We are not seeking attention. Most of us expend a great deal of energy to hide the [pain] we are in nearly every hour of every day.” – Scott M.
20. “It’s not all gloom and doom. You can live with it. Not every day will be awful. Build up your pain tolerance, it becomes more bearable. Don’t give up. Keep fighting.” – Sharyn H.