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19 Things People With Fibromyalgia Wish They Knew When They Were Diagnosed

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If you have been living with fibromyalgia for a while, you might consider yourself an expert in the chronic illness by now. However, there are probably a lot of things you wish you knew from the beginning. If you could go back in time and tell yourself what it’s like to live with fibromyalgia, chances are there’s a lot you would say.

Fibromyalgia is a complicated illness that’s not well understood. Symptoms include widespread chronic pain, fatigue and cognitive difficulties. While there’s a lot the medical community is still learning about the condition, the expertise of those living with fibromyalgia can teach us a lot.

To help educate others, we asked The Mighty’s fibromyalgia community what they wish they knew when they were first diagnosed with fibromyalgia.

Here’s what our community said they’ve learned since their diagnosis: 

1. That it’s serious.

“I wish I had known really how serious and severe this chronic illness is and how much it would change my life forever!” – Nikki E.

2. That it’s time to slow down.

“I wish I knew to slow down. I didn’t realize I was making my symptoms worse.” – Rebecca B.

“I wished I’d have known it would get worse, and I needed to start looking after myself right there and then before it got out of hand.” – Aimee L.

3. Medications work for some but are complicated for others.

“I wish that I would have known how horrible the fibromyalgia medications were going to be for me! Cymbalta, Gabapentin and Lyrica all made me worse. The side effects are worse than the fibromyalgia [for me]! They all worked for a few months after I started taking them, but then they stopped working. I gained 40 pounds in 6 weeks on Lyrica. It made me so angry because I had just spent nearly a year losing exactly 40 pounds when I started taking it.” – Priscilla S.

“I wish I knew to ask my general practitioner that diagnosed me to refer me immediately to a physician that specialized in fibromyalgia. I wish I knew to ask more questions and talk to others with fibromyalgia (group or online therapy) so I didn’t feel so alienated and overwhelmed. Instead, it’s taken me years of taking medications that didn’t help and seeing doctors that said nothing was wrong with me. I’m currently seeing a great pain management practice with a mind/body approach and I love connecting with others online who understand and support each other.” –  Sharon C.

4. Hiding isn’t the answer.

“[I wish I knew] that there would be very good days and very bad days and I didn’t need to hide the good days worrying people would think I was faking the bad days. I hid my diagnosis for 15 years from even close family members, until a couple of years ago when combined with other health issues and peri-menopause, I just couldn’t anymore. It’s so much easier now with people knowing. I don’t have to make up excuses for missing work days, declining invitations and why I look great one day and can’t take calls the next. I wish I knew sooner I didn’t have to feel like a diagnosis made me a weak woman and that people knowing did not make me less of who I’m and had worked so hard to become.” – @lizzieliveshere

5. Planning ahead can be difficult.

“[I wish I knew] the toll it would take on my life. The inability to plan ahead because I never know if I will be having a good day or a rough one.” – Lisa B.

6. Pain can be constant.

“I wish I had realized that I would always be in pain. After a while, you get used to certain pain levels, but when the first medications came out for fibro, I thought I would eventually be without pain. So wrong! Also, that I bounce around good pain days and bad ones, but still, I am in pain.” – Cynthia W.

“I wish I knew it was permanent. I just kept waiting for someone to say, ‘Ok. You’re all better. You can go back to work now.’ And that there is no ‘cure.’ And that symptoms can progress. So much info at once can be too much to retain. But it’s your life. And honesty, at that point, is all that matters.” – @ryanheather95

7. You have to stand up for yourself.

“I wish I knew how often I would have to be my own advocate. Doctor shopping, ignorant people, my mental health worsening…there is nothing I did to ‘catch’ fibromyalgia but there are things I can do to help manage it: finding a medical team who listens and genuinely cares (a work in progress), choosing to rest over an impromptu night out with friends despite their never-ending and sometimes hurtful/rude pleas, being patient with myself when my load gets heavy and I realize I’m in a bad flare-up. No one told me how hard it would be to have to choose my health day after day, year after year. On the flip-side, no one told me how empowering it is to speak up for my needs.” – @superbadatusernames

“I was diagnosed when I was only 18 years old, my senior year of high school. I wish I knew how hard it would be to explain to my friends and how hard it would be for others to understand. I just wish people understood and were more empathetic towards invisible illnesses. I had to explain myself so much and I still do to this day and most of the time people still think I’m ‘faking’ or ‘being dramatic.’” – Cheyenne H.

“That I’d have to find my own way, that no-one was going to sign me up for a program designed to help me unless I would ask for it, and that the only existing program was not suitable for everyone, including me, so that I would have to find out all on my own, about the existence of both regular and alternative, therapies that could not cure, but still support me in reclaiming my (new and changed) life.” – Emma Z.

8. It can be lonely.

“I wish I’d known how isolating it can be. And how you need to grieve for what you had before.” – Claire W.

9. There are other symptoms besides pain.

“I wish I knew the laundry list of symptoms other than those ‘tender points’ we’re usually diagnosed with.” – Terri C.

10. Everyone has an opinion.

“I wish I had known when I was diagnosed with fibromyalgia that everybody has an opinion on how to cure me. And if I just do this ‘one thing,’ I’ll miraculously be better. I took 18 months and tried every single thing anyone suggested and nothing worked. I wish I’d known sooner to ignore people.” – Jenny L.

“I hate when somebody says your symptoms are caused by something other than your illness. Like, “sleeping too much will make you tired, stop sleeping so much.” The entire concept of fibro is inconceivable for most, even many, many doctors.” – Taylor B.

11. Your career path can change.

“[I wish I knew] that I would struggle to hold down a full-time job (or sometimes just any job at all) which would make my future goals extremely difficult.” – Stephanie D.

12. Not everyone is accepting.

“I wish I knew how many people in my life were phony and don’t actually care about me. I wasted decades of time, money and energy on family and friends that I thought cared about me. But now that my condition turns out to be real and permanent, they are like wisps in the wind with even less substance. It is hard enough when strangers doubt my condition and struggle. I have read many, many similar stories here. It is a deeper pain when those close to you desert you when your own body is impossible to live in. I wish I knew who mattered so that I could have saved my precious little energy for those that mattered instead of trying to be there for everyone. And yes, there are good days and bad days, but my bad days are starting to outnumber the good and this is scary.” – Kim S.

“I wish I had known how insensitive people are. I knew that many people don’t understand or don’t care about the feelings of others. I learned that very early in life. I was not, however, prepared for the ridiculous, misguided and downright cruel things people say when discussing chronic illness/pain of fibromyalgia.” – Wendy C.

13. There’s a stigma.

“[I wish I knew] that it is stigmatized. People can and will react from their perspective and it has nothing to do with you. That telling others who have deserved the right to hear is still comparable to coming out. It is a heavy burden to carry and you get good at wearing a mask. Comforting others will be part of the process. You will have to find ways to uplift yourself. Some days will be hell. Choosing gratitude for other things that aren’t hell will have to be what comforts you when others cannot. Smiling until you feel happy is helpful— try and trick your brain!” – @ashleyanything

14. Not everyone with fibromyalgia lives the same way.

“[I wish I knew] that people experience this condition in different ways; symptoms run the gamut from bearable to immobilizing. At its most extreme, it renders the patient unable to live normal lives due to pain, fatigue and brain fog. But not everyone is at the most extreme end of the spectrum.” – Bobbi L.

15. Medical providers can make or break you.

“I wish I knew how difficult it was going to be to find a medical provider who believed it was a real disease. Also wished I knew how hard life could become so I could have been better prepared to deal with symptoms as they can along and even possibly be proactive to lessen some symptoms.” – Joanne B.

“I wish I knew that some doctors STILL consider fibro a psychiatric illness.” – @mona99627391

“[I wish I knew] how ignorant the medical community is about it, how many doctors tell you the pain is all in your head and how many people believe it’s fake.” – Mea C.

16. Your symptoms can be confusing.

“You never know how it’s going to affect you. I’m tired, I hurt…do I have a cold? Or is it fibromyalgia?” – Bunny H.

17. It doesn’t define who you are.

“[I wish I knew] that it’s OK not to be OK. That having a chronic illness doesn’t negate your worth as a human being. That most people won’t understand, and most of those, including those closest to you, won’t even bother to try.” – Lucy B.

18. It’s not because you did something wrong.

“It’s not your fault. You did nothing wrong to cause this illness to happen to you. You are not a failure.” – Colette R.

19. You’re a fighter.

“I wish I knew that I am adaptable and strong enough to manage a chronic illness. Fighting the diagnosis was harder than just accepting it.” – @nish

If you are struggling with the stress of your fibromyalgia, please reach out to someone you trust or join The Mighty’s fibromyalgia community and share your perspective. You are not alone.

Here are some helpful articles from our fibromyalgia community:

Originally published: April 30, 2019
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