First off, what exactly is fibromyalgia?
Fibromyalgia is a common and chronic syndrome that causes bodily pain and mental distress.
Symptoms of fibromyalgia can be confused with those of arthitis or joint inflammation. However, unlike arthritis, it has not been found to cause joint or muscle inflammation and damage. It is seen as a rheumatic condition, in other words, one that causes soft tissue pain or myofascial pain.
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), around 5 million adults aged 18 years or over in the United States experience fibromyalgia, and 80 to 90 percent of fibromyalgia patients are women.
This illness is invisible and always mis-understood. There are over 200 symptoms that affect easy individual differently. I have talked to hundreds of people that have been diagnosed with fibromyalgia, and although we share a lot of common issues, but it’s still so completely different with all of us!
Most common thing we get is anger and frustration and not understanding from people. For the most part we get that, cause we don’t understand it perfectly ourselves! Even though we know more than they do, heck I, myself research the crap out it, and still don’t understand it all! Mainly because there is a ton, and I mean tons of incorrect information out there, even from those that consider themselves professionals. The #1 thing I hear is you need to exercise. Yes that helps a lot of people, but there are just as many people, if not more that it actually does more harm than good. It wasn’t until a couple months ago that my doctor finally told me that he was at conference and came to the realization that exercise isn’t the best for everyone with fibromyalgia.
The worst thing you can or say to a person with this illness is try to fix them, or tell them what they need, or are doing wrong. You have to understand that we didn’t ask for this illness, nor do we want it. It took us many months and sometimes years to get to this diagnosis, it isn’t something that happens quickly. We so wish and pray that there was something out there that could cure it, but sadly there isn’t.
For those with fibromyalgia, here are some good responses I found. These are not mine, but I have said a few of them to different people as I encounter the situation. I am sending out hugs and prayers to everyone with this horrid illness, that they can find some relief, and never give up fighting.
* “I did not realize you had a medical degree.’”
* “I say, ‘All people live in their own dream, in their own minds, and you are in a completely different world from the one I live in and that’s OK. You don’t understand but I do.’”
* “‘Are you my doctor?’”
* “Tie some weights to your appendages, contract the flu, go about your daily life for three days, then come back and say that again.”
* “‘Thank you, Dr. (fill in the name). I appreciate you sharing your expertise.’”
* “‘I didn’t realize you had the ability to feel the pain of others, but thanks for the assumption!’”
* “‘My body and doctor say differently.’”
* “‘OK. Let’s swap. I’ll gladly take your working normal pain-free body and then we’ll see how long it takes you to change your opinion.’”
* “I just don’t even need to justify my life to others who have no idea what I battle daily. I’d just stay silent and walk away.”
* “‘Live with fibromyalgia for a week, you might reconsider.’”
* “‘How do you define serious? Wouldn’t you think others define ‘serious’ differently too? If so, then why does one person’s opinion of how you define a serious illness affect what actually is a serious illness?’ (Let them know if they’d like some neat articles and to research this more there are many websites and stuff too!) I don’t like attacking people because if I don’t like them doing it to me, I wouldn’t want to do it to them. I don’t have fibromyalgia myself, but I have friends that do.”
* “‘My brain totes agrees with you – this can’t be my real life, but my body hasn’t listened once.’”
* “‘It’s seriously underestimated.’”
* “My orthopedic consultant told me it wasn’t a real illness. ‘Perhaps,’ I said, ‘but seeing as there are thousands of people across the world currently sharing the same symptoms, isn’t it great we can at least give it a name, so that [when] we meet with consultants like yourself, you have some idea of what’s going on [with] us symptomatically?’ He physically stepped back when I said this.”
* “‘You obviously don’t have it then.’”
* “My former cardiologist said fibro is a ‘bullshit diagnosis.’ When I told my rheumatologist, he said, ‘He should stick to the heart.’”
* “I tell people it’s like being one giant bruise all the time with electrical pain and skin so sensitive you feel like you have a burn all the time, and that is just some of what I live with.”
* “I ignore them actually. There are days I barely have the energy to put my socks on so I’m not wasting valuable energy on a person’s opinion that has no value to me.”
* “‘No, it’s hilarious, hilariously awful and all-consuming. Here’s the list of the 200+ symptoms and codependent conditions and all the type of specialists I have to see for this ‘not so serious’ condition. Next time educate yourself with facts before running your mouth when it concerns me, please.’”
* “‘Tell that to my five specialists who have confirmed it.’”
* “‘Get the flu, then light your skin on fire. Then you end up with migraines so bad it feels like your head is in a vice. Add digestive issues to the mix and everything your skin touches hurts like you are peeling it off. Deal with all of that on a daily basis and then tell me it’s not real.’”