Top tips for the newly diagnosed with Fibromyalgia

For Fibromyalgia Awareness Month I’d like to pay tribute to all our friends around the world battling with this invisible illness, suffering in silence, and fighting to get the care they need.

It’s more than a decade since I was first diagnosed and given a name for the thing that’s plagued me since childhood, and it’s not gotten any easier. If anything, we get stronger.  How can we not? We must struggle to live some semblance of a life with chronic pain, fatigue and a slew of symptoms, whilst facing disbelieving doctors and people around us. 

While the world acknowledges the lasting impact of long covid with science searching for a cure, we with fibromyalgia have been bypassed yet again, left to suffer in the shadows. 

 

I cannot say I have any hopes for a cure, though perhaps, on the back of a cure for long covid, we might also be lucky to benefit. 

What I do believe is that from all this suffering we have emerged a strong community. My friends all over the world with fibromyalgia are amongst the strongest I know. We have had to educate ourselves, explore remedies, share learning, and I’m frankly in awe at the power in us. 

I know it’s daunting living with fibromyalgia, and if you’ve been newly diagnosed you may be feeling very alone, unheard, disbelieved and hopeless.

But I want to tell you you are NOT alone. You have friends all over the world who have walked the path ahead of you and a group of us from the Fibro Blogger Directory are here to share some of our top tips for living with fibromyalgia. 

Be encouraged. Gentle hugs.

“Being diagnosed with fibromyalgia can bring up so many emotions. Your feelings, whatever they are, are always valid. Finding someone to talk to is very helpful, especially if they are someone who understands chronic pain.” – Lee Good, Fibro Files
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“My top tip is to be involved from the start, decide that you are the Head of your team and your medical professionals are colleagues. Keep up on key information, track your symptoms well and take an equal part in appointments. This is how I’ve achieved everything.” – Melissa, Melissa vs Fibromyalgia
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“I have learned the hard way too that it’s no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It’s not the end of the world, and you just have to flex with fibro…” – Glenys Robyn Hicks from Sacrificial Home Keeper
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While the world acknowledges the lasting impact of long covid with science searching for a cure, we with fibromyalgia have been bypassed yet again, left to suffer in the shadows. Share on X

“It can be so challenging managing a condition like fibromyalgia with its wide range of symptoms, often requiring various treatments. For this reason, I often look for remedies that offer multiple benefits. In all my years searching for and trying remedies, I’ve always come back to juicing as an easy, underrated win. For me the secret ingredients are fresh turmeric and ginger roots (after that your preference of fruits or vegetables to mellow the taste). Just a shot a day of this powerful formula gives my mind and body a boost, whilst helping me to fight pain and inflammation in the long term.” – Alisha Nurse, The Invisible F
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“Never be afraid to ask for help, be it with the shopping, cooking or cleaning. As most sufferers tend to ‘look fine’ most people do not realise the pain they are suffering inside, so if you don’t ask you won’t get help. 2. If work is leaving you exhausted and in pain, then design a flexible plan that works for you and your boss. Ask about working from home part-time, or setting your hours for earlier or later in the day so you can be more productive, during this busy time.” – Bar, Back Pain Blog
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From all this suffering we have emerged a strong community. My friends all over the world with fibromyalgia are amongst the strongest I know. We have had to educate ourselves, explore remedies, share learning, and I’m frankly in awe at the… Share on X

“At the beginning of my fibro journey, I thought that no one else could be feeling or thinking the way I was, but this was not true. People living with fibromyalgia do understand the emotional and mental symptoms that you may be experiencing. The most important thing is to understand you are not alone!”- Lynne Said, The Healing Within
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“The best advice I can give anyone who has been been freshly diagnosed is to try your best to find the best doctors to help you. It makes all the difference in the world.
Don’t settle for anything less than the best! I’ve been on the other side and I’ve suffered the consequences. Believe me, I’ve definitely learned my lessons. I hope this advice helps out.” – Rachel, Once Upon a Fog
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it’s daunting living with fibromyalgia, and if you’ve been newly diagnosed you may be feeling very alone, unheard, disbelieved and hopeless. But I want to tell you you are NOT alone. Share on X

“Don’t blindly accept your diagnosis. My first advice to anyone newly diagnosed with fibromyalgia is to question your diagnosis. Fibro is a diagnosis of exclusion, meaning all other possible medical conditions have to be ruled out by your physician. Are you sure he or she did that? Too often physicians label someone with fibromyalgia because it’s the path of least resistance. But I would encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of fibromyalgia patients have been misdiagnosed.The implications of that are huge. That means millions of fibromyalgia sufferers are living with undiagnosed conditions, some of which are probably treatable! It’s also important to realize fibromyalgia is NOT a disease in and of itself. It is a syndrome, which means it’s a collection of symptoms of unknown origin. It’s important to dig deeper into your symptoms with the help of a knowledgeable medical provider to try to find the underlying cause of your illness. Many things can cause fibromyalgia symptoms, including undiagnosed infections, mould exposure, thyroid dysfunction and others.” – Donna Gregory, Fed up with Fatigue 
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Cover image by Sammie Chaffin

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