The Mighty Logo

15 Things to Know Once You’re Diagnosed With Chronic Pain

The most helpful emails in health
Browse our free newsletters

In 2007, fibromyalgia wasn’t recognized as a diagnosis by the healthcare industry. Unbelievable stuff, huh? I mean, can you imagine trying to manage and treat 24/7 pain when 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 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 with chronic pain:

1. It’s not your head.

Newsflash: The healthcare industry finally recognized fibromyalgia “as an official diagnosis condition” in 2015, according to the National Pain Report. 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?

2. Knowing is better than not knowing.

It’s normal to feel hopeless at first but advances in chronic pain medicine are happening. If you know what you’re dealing with, you can begin treatment that’s right for you and get some relief.

3. 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, is amazing.

4. Be prepared.

Ask your rheumatologists a lot of questions and 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.

5. 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.

6. 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.”

7. 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.

8. Keep moving.

Light physical activity really does help. Physical therapy, occupational therapy, walking, etc. Don’t let your body freeze up.

9. 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.

10. Food matters.

You’ll quickly learn how certain foods can make the pain worse. My trigger foods are spicy foods, dairy and sugar. If I indulge (and I do), my sleep for the night is ruined.

11. Phone notes.

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.

12. Get good sleep.

A good night’s sleep can save your day, but miss an hour and your day will be an uphill climb. Find out how many hours of sleep you need then do your best to keep on schedule. This is a big one!

13. Stay safe.

Nearly 1.9 million Americans now abuse or are dependent on legal opioids, according to government statistics,” The Week reported. Be aware and get educated so you can make the right decision for yourself.

14. 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.

15. 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!

 A version of this post originally appeared on The Huffington Post.

Lead photo source: Thinkstock Images

Originally published: September 22, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home