Advice for people with fibromyalgia

As many of you know by now one of the objectives of this blog is to provide a space where people with fibromyalgia can share their experiences.

So to facilitate this we ran a Vox Pop on our Facebook page FibromyalgiaTalk. Vox Pops are where we start a conversation on the page and then share the results here on the page.

So a couple of days ago we asked our members the question “What advice would you give to a person who had just been diagnosed with fibromyalgia?”

The results were very interesting and we would like to thank everyone who took part. One of the most liked comments and one I think is very true was:-

“Educate yourself and don’t depend on the info just from your doctor.”

But also

“Take one day at a time. If it’s a bad day, be kind to yourself, tomorrow may be better. Try to be positive when you can, it stops you going crazy, and surround yourself with good people, who understand what “it’s just a bad fibro day! ” means. These things take time, but you can get there. Never lose hope”

“Stay as strong as you can and read read read up on Fibromyalgia … and pace yourself… and last but not least join groups like this one and talk to others that CAN relate. ♡”

” When you need rest, then rest! It will perk you up more than anything to give your body the rest it needs. I might go a day or two where I sleep so much it’s crazy, but I will finally wake up and feel so much better. Take care of yourself, period!”

“Sudden weather changes, it can be cold or hot. Rain, snow, etc. it can be near or far (barometric) , air and fans can be a killer and any artificial sweaters or caffeine can affect you.”

“Get regular massages! Find a therapist who specializes in pressure points.Don’t feel guilty. It’s not a luxury or indulgence, it’s necessary!”

” It will take a while to get the mix of meds right…be greatfull for everything good in yer life because that is what gets you through the bad times. Love and do as much as ya can because there will be a day you will not be able to do those things. Keep this in yer thoughts it won’t always work but it helps 80-90 percent of the time.
Laugh when you can
Apologise when you need to
And let go of things you cannot change”

” Don’t stop pushing yourself and insist on living a full life. Go to work and take full part of family life. If you ever stop, you want begin again. Take your meds, get enough rest, and for the most part, ignore the pain.”

” Dont compare yourself to another because no two cases are alike plus no one has your body! You have to pay attention to your self for your triggers, how long you can do this and that for. Finding the right meds, doctors, holistic helps more then people think. The key is you! If you know something us not right, but the doctor tells you otherwise don’t listen. You know your body better then anyone keep fighting for what you know in your heart. I learned a lot about spirit, prayer, love is easier to carry then hate. We have to heal ourselves, because the doctor’s can’t do it only manage. Please bypass the angry why me phase and start on spirit learn about your chakras. Fibro might not even be your right diagnosis research everything you can to heal your, spirit, mind, and body”

” Find yourself a great rheumatologist (they specialize in inflammatory disorders such as fibro and lupus). Educate yourself, then your family and friends! Try new things (meds, yoga, foods). Do what’s best for your body. Keep fighting and soft hugs! Xoxoxo”

“Get MRIs in the trigger point areas to rule out disc degenerative disease. Because I’m pretty positive your going to have it. I’m not convinced Fibro is an actual disease. They say i have it , all 18 trigger points, but I’ve had MRI in each location and I’ve got osteoarthritis, disc degenerative, protruding discs all or at least 1 of the above. I am pretty sure its just a name they made up for folks who have too much going on in the body to fix. This way they don’t have too.”

“You know more about your illness than a doctor. YOU are the expert not them. Also, animals are fantastic to have around”

and finally

“Don’t despair as you’re not alone “

So what would your advice be?

Please feel free to share in the comments section below.

Thanks for reading and sharing!