In 2007, the iPhone turned one year old, Fibromyalgia wasn’t recognized as an actual condition and David Hasselhoff got really drunk and tried to eat a cheeseburger on the floor while his daughter filmed him. Crazy stuff, huh? I mean, can you imagine trying to manage and treat 24/7 pain while even your doctor tells you there’s nothing wrong with you?
Painful and freaky things were happening to my body and there was very little public information and nowhere to find support. As someone who loves to do my own research, I felt completely unnerved and helpless by the void. I felt there was no way to prepare myself for what was to come.
I never expected to wear a neck brace and hand wraps or use wheelchair and a cane. There was a long period of time where I thought that this was going to be my new forever: not working, barely able to brush my teeth, unable to get dressed on my own, in constant pain, fatigued and plagued by nausea that would make anyone’s head spin. I was railroaded.
To continue to fill that void, and just as important as the 25 Things People with Fibromyalgia Want You to Know, here is a list of things that would have been helpful to know after first being diagnosed.
You are NOT crazy
Newsflash! The healthcare industry finally recognized Fibromyalgia as an actual condition in 2015. It’s real! It’s really, really REAL! I bet you have a list of people who you’d like to not-so-softly share this with, huh?
Knowing is better than not knowing
It’s normal to feel hopeless at first but advances in Chronic Pain medicine arehappening. If you know what you’re dealing with, you can begin treatment that’s right for you and get some relief.
You are NOT alone
Thanks to social media, we don’t need to rely solely on our friends and family for comfort. (This is hard for them too!) Thousands of supportive communities are right at our fingertips. For 24/7 virtual encouragement and info, search Facebook,Instagram and Twitter for helpful entities. For in-person gatherings, Meetup.com is amazing.
Ask your rheumatologists a lot of questions, make a list BEFORE each visit so you have everything covered. Ask to record the audio of your doctor’s recommendations so you can listen whenever you need. There’s so much to learn and it can be very overwhelming.
It’s a marathon not a sprint
Push the limits of your body, but sometimes let it win. This goes back to trusting yourself; surrender is not defeat.
Remember to breathe
If you feel panic coming on, try not to go into a catastrophic mindset. This can be a frequent challenge so I created a mantra: “It’s like this now but not forever.”
Listen to your body
Every patient is different and nobody knows your body better than you. Just because a doctor prescribed it, doesn’t mean you have to take it.
Light physical activity really does help. Physical therapy, occupational therapy, walking, etc… Don’t let your body freeze up.
Do your own research
There is more information than ever before on Fibro, Chronic Pain, Lupus and other invisible illnesses. You may want to explore these topics: traditional and alternative treatments, the best doctors in your area, natural remedies, new findings and of course, helpful blogs. *Wink*
You’ll quickly learn how certain foods can make the pain worse. My trigger foods are spicy, dairy and sugar. If I indulge (and i do), my sleep for the night is ruined.
For easy access, I keep notes on my phone where I list all things Chronic Pain: those offending foods I mentioned, helpful tips and treatments I come across and any questions I have for my next doctor’s visit.
Get good sleep
A good night’s sleep can save your day, but miss an hour and you’re a slave to your day. Find out how many hours of sleep you need then do your best to keep on schedule. This is a BIG one!
According to government statistics, about 2 million Americans currently abuse or are dependent on legal opioids. Be aware and get educated so you can make the right decision for YOU.
Feeling super sensitive?
One cool thing about Fibromyalgia is that once diagnosed, you’re officially part Superhero! Part Spider Man to be exact; if you’ve noticed hypersensitivity to sound, smells, food and weather, those are just your new Spidey senses. You might want to pack a sweater from here on out.
Things are going to change
And very likely, the change could be permanent, but that doesn’t mean things can’t get better. There are warriors and there are victims, bring out your inner warrior!
I love reading your additions to my lists, please add them in the comments below!
If you find my blog helpful, supportive or empowering, I’d like to ask for your help. I’m humbled to be nominated for 5 WEGO Health #HAAwards for giving a voice to those who suffer in silence with invisible illness.
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