9 Tips For Anyone Newly Diagnosed with Fibromyalgia
By Donna Gregory Burch
You’ve been given a fibromyalgia diagnosis. Now what?
I
know you’ve felt like crap for months – maybe even years. You’ve
probably shuffled from doctor-to-doctor, trying to figure out why you’re
in pain all the time and can barely pull yourself out of bed. You may
even be relieved that you finally have a diagnosis. I know I was when I
was diagnosed in 2014.
But looking back at my own fibromyalgia
journey, one quote comes to mind again and again: I wish I knew then
what I know now. So, today I’m sharing what I wish someone had told me
when I was first diagnosed. I hope it lessens someone else’s struggle.
Tip #1 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. They don’t
know what’s wrong with you, and nothing obvious is showing up on your
lab work, so it must be fibromyalgia, right?
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!
Tip #2 Find a great doctor
I
know some people live in localities where medical options are limited,
but if you don’t fall into that category, please do not keep going to a
doctor who disrespects you or isn’t capable or willing to help you.
I
have heard so many physician horror stories over the years from my
fellow fibro warriors – doctors who told them fibromyalgia doesn’t
exist, who said it was all in their head, who overprescribed medications
to the point of putting them in a drugged stupor, who told them they
were just getting old or needed to lose weight.
If your physician
has said or done any of the above things, then please find a new doctor
(if you’re able)! Do not allow yourself to be abused! Do not allow your
physician to invalidate your illness!
You are not making it up,
and it is not all in your head. Never doubt that! Seek out a physician
who believes in fibromyalgia, is highly knowledgeable about the
complexities of this condition and is familiar with the latest research.
I
will warn you: It’s hard to find a good fibro doctor. Expect to go from
doctor-to-doctor for a while before you find the right one, but trust
me, having the right doctor is worth the effort!
Tip #3 The “right doctor” probably isn’t your primary-care physician or rheumatologist
Medscape’s 2016 Physician Compensation Report
found that doctors average around 15 minutes per patient visit. That’s
barely long enough for the patient to rattle off their complaints and
for the doctor to write a prescription to try to fix said complaints.
That works if you’ve got something simple like the flu, but if you’re
living with a complicated chronic illness like fibromyalgia, it’s just
not going to cut it.
So, what’s the solution? Seek out medical
providers who practice healthcare differently. I spent years going to
various primary-care doctors and specialists. None of these doctors held
the answers to helping me feel better from fibro. You know why? Because
they all just looked at a piece of my health issues.
The
only success I’ve ever had at reducing my symptoms has been when I
worked with doctors who practice functional medicine. Functional
medicine doctors take a more systematic, whole-body approach to
healthcare. They understand that symptoms do not happen in a vacuum. Our
chronic pain, digestive troubles, migraines, exhaustion and the myriad
of other fibro symptoms we experience are all linked and should be
treated as such.
In functional medicine, the goal is to restore
overall health, not just treat symptoms with the latest pharmaceuticals.
Functional medicine practitioners tend to utilize many more tools, such
as lifestyle modifications, natural supplements and alternative
therapies, than traditional doctors. If I was diagnosed today, I would
go directly to the Institute of Functional Medicine website and try to find a local functional medicine doctor versed in fibromyalgia.
I
know other fibro sufferers who have had good results with naturopaths,
osteopathic doctors and even chiropractors. These kinds of medical
providers tend to be more open-minded. That’s important because there is
no magic pill for fibromyalgia (see tip #4), and you need a physician
who isn’t afraid to experiment with emerging treatments (see tip #8).
I’m
not implying all traditional physicians are inept and slaves to the
pharmaceutical industry, but I am saying you have a better chance of
improving your outcome if you work with a doctor who takes a
comprehensive, holistic approach to treatment.
Tip #4 There is no magic pill
In
the year after my diagnosis, I tried several of the usual fibro drugs,
but none of them helped. They either didn’t work or turned me into a
zombie.
When I actually looked at the research trial results
of the three drugs approved by the U.S. Food and Drug Administration
for fibromyalgia – Cymbalta, Lyrica and Savella – it was quickly obvious
why they didn’t work for me. The truth is they don’t work very well for
most fibro sufferers. For example, only about one-third of
patients taking Cymbalta report at least a 50 percent reduction in pain,
and that’s the most effective drug of the three!
These drugs do help some fibromyalgia patients, and I don’t discourage anyone from trying them, but for most of us there is no magic pill.
Tip #5 It’s going to take more than drugs to feel better
While
researching, I occasionally run across so-called success stories
featuring people who have either recovered completely from fibromyalgia
or are successfully minimizing their symptoms. While reading their
stories, I’ve discovered a pattern: Every single one of them used
multiple modalities to feel better.
Dietary changes are almost
always mentioned. They gave up sugar and processed foods, and eat a
whole foods-based diet. Many of them went dairy, soy and gluten-free.
They
majorly overhauled their lifestyle. They meditate or do yoga or tai chi
to calm their overactive nervous system. They do gentle walking or
aquatic exercise to stay active. They regularly spend time outdoors.
They learn to pace themselves. They’ve become experts at stress management.
Sometimes
they used prescription drugs, but those were only a small piece of
their overall treatment plan. In short, they took a more natural,
lifestyle-based approach to treatment.
Tip #6 Do your own research
We
all know doctors are extremely busy, and most of them don’t have time
to stay up-to-date on the latest research and treatments for all of the
conditions they encounter in any given day. So, please don’t rely
exclusively on them for your healing!
Here’s the harsh reality:
The minute you walk out of that examination room, they’re onto the next
patient. They probably won’t think about you again until they see your
face at the next appointment.
So, it falls to you to
become your best health advocate. Get on the Internet and do your own
research! Seek out information about new treatments or therapies, and
take those to your next doctor’s appointment for discussion. Be
proactive in the management of your symptoms by making those important
lifestyle changes mentioned in tip #5.
Become an expert in your
chronic health condition! I learned early on that I was never going to
feel better if I exclusively relied on my doctors for answers. They just
don’t have the time or attention span for that.
Tip #7 Connect with others with fibromyalgia
Fibro
can be a lonely, miserable condition. Friends and loved ones may
commiserate with your pain, but the truth is no one ever truly gets
fibromyalgia until they get it themselves.
But there’s one group
of people who will always understand your suffering: your fellow fibro
warriors! Make an effort to connect with others who have fibromyalgia
through local and/or online support groups.
You will learn so much
from your fellow warriors! Many of them have been in the trenches with
fibromyalgia for decades, and they know better than anyone what works
to knock down the pain or how to shorten a flare of symptoms. They also
understand all of the emotional stuff that comes with living with an
unpredictable, life-sucking chronic illness.
Bonus tip: Local support groups are a great source for finding the best fibro doctor in your community.
Tip #8 Explore emerging treatments
Early
on in my diagnosis, I was much more rigid about only using
research-proven treatments. However, it didn’t take me long to realize
that fibromyalgia research is in its infancy, and there is no
one-size-fits-all treatment approach. One of fibro’s great mysteries is
that what works for one of us doesn’t necessarily work for the rest of
us.
Because of that, I’ve become much more open-minded about
treatment. In some ways, I’ve become my own guinea pig. I’m not afraid
to try new treatments – after careful research and talking with my
doctor, of course! Some of the most effective tools in my current fibro-fighting arsenal would be considered fringe treatments, but they work for me, and that’s what matters.
I
learn a ton from my fellow fibro warriors (see tip #7). They are an
invaluable resource, and they’re often years ahead of researchers when
it comes to natural or alternative treatments.
Tip #9 It’s up to you
A
few days ago, someone in an online fibro support group said pain was
her friend. Maybe I’m not spiritually evolved enough yet because I have
no desire to get friendly with my pain.
But I do see chronic pain
as a great teacher. In the wake of your diagnosis, you will learn so
much about yourself, your loved ones and the medical community. Your
strength will be tested – sometimes daily – and it will be up to you
whether you handle that struggle with grace or despair.
Fibromyalgia
will change you as a person. The choice is yours whether it’s for the
better or worse, but you always have a choice. Remember that.
9 Tips For Anyone Newly Diagnosed with Fibromyalgia
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