02.20.2017

9 tips for anyone newly diagnosed with fibromyalgia

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This article was originally published on NationalPainReport.com and is being republished here with permission from the editor. This post contains affiliate links.

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.

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!

(Dr. David Brady’s “The Fibro Fix” is an excellent book that discusses the rampant overdiagnosis of fibromyalgia. It identifies other conditions that mimic fibromyalgia and how to tell if you really have fibro.)

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.

(If you’re interested in taking a more well-rounded approach to treatment, I would suggest reading Dr. Ginevra Liptan’s “The FibroManual.” It’s one of the best fibromyalgia-related books I’ve ever read because it blends information on traditional treatments with alternative therapies and lifestyle recommendations. Dr. Liptan really gets fibromyalgia because she is a fibro warrior herself!)

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. (Warning: Some doctors may not respond positively to treatment suggestions. If that happens, that’s a clue that you might not be working with the right doctor. An effective, caring doctor will be open to discussing different treatments.)

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. (There are hundreds of fibromyalgia support groups on Facebook!)

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 How well you manage fibromyalgia is 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 choice. Remember that.

Now, it’s your turn: What advice would you give to someone who is newly diagnosed with fibromyalgia? 

You might also like…

A few of my favorite things for relieving the pain and fatigue of fibromyalgia.

According to Dr. David Brady, fibromyalgia misdiagnosis is extremely common. Up to two-thirds of fibromyalgia patients may have been misdiagnosed, based on the results of one study. So, if you don't have fibromyalgia, what else could it be? Find out here!

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Comments

  1. Maureen Olafsen says:

    Thank you Donna, and thank you everyone else for sharing the info that you have….I will be buying that book Fibro Manual….as my doctor just doesn’t “get it”. He’s a lovely doc in all other aspects and I don’t wan’t to fire him because of that, but I can see he’s clueless re: Fibro. That is also good advice about getting your medical records….I just had 6 blood tests done and all came back normal…I never remember what they did them for. I don’t know if anyone else would be interested but the book Treating and Beating Fibromyalgia & Chronic Fatigue Syndrome / by Dr Rodger H. Murphree has helped me immensly. I weaned off of Lyrica and have slowly been adding suppliments as reccommended by him, and certain things have really helped me. 5-HTP and SAM-e seem to have improved my life tremendously. I am still experimenting, I still get pain and extremely exhausted, but not as badly as before, and my mind seems “brighter”. Hope this helps someone 🙂

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Maureen, I was a patient of Dr. Murphree’s for 9 months and still take some of the supplements recommended by him, including 5-HTP and SAM-e. They are definitely helpful for improving my mood and energy. His book is one of the better fibro books out there.

      You will love the FibroManual! It’s a great book – the best fibro book that I’ve read. I currently have a Facebook book that’s discussing the book. The address is http://www.facebook.com/groups/fibromanual If you’re on Facebook, feel free to join us!

  2. Loraine says:

    Hi i have all these symptoms beenon so many pain killers including morphine but still in so much pain my Doctor,s said i have osteoarthritis ifell no one is listening to me and they don’t be leave me when i am in so much pain

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Loraine, I’m so sorry to hear that you’re struggling. It sounds like it might be time to research other doctors, if you’re in an area where that’s a possibility. It’s so, so important to find a physician who actually listens to you and tries to help you. If there aren’t other physicians available, maybe there’s an option to ask your current doctor to refer you to a pain management specialist. These are just a couple of ideas. Gentle hugs to you!

  3. Carrie says:

    Thank you for this, Donna. I’m a (relatively new) regular reader of your blog after being diagnosed last year. I have two other chronic conditions as well, but fibromyalgia is the cause of my chronic pain. I work full time and have been interviewing for a new job. I wondered if you or anyone on here has any advice on when/if to share your health status with a new employer? It’s something I’ve been struggling with, but I want them to know that sometimes I come in to work in severe pain, and sometimes I can’t come in to work because of a flare up. I’m young and I do a lot to try to keep myself healthy and the number of times I’ve had to actually go home or stay home are few, but I need to manage expectations. Any advice?

  4. Thank you for sharing. I would like to point out that all patients have to become their own self medical advocate. Most especially if you have more than one Dr. and using more than one location for testing and treatments. Get a binder today, join your hospital and Drs. patient information portal, print all of test results, if you don’t have a printer join the portal anyway write down your passwords go to a friend or relative’s house and print everything, keep in it a binder by type, example, lab, radiology, office visits, all Drs by their name, and by hospital name. Request a copy of your visit if you can’t get it at your visit time, it should be available on your patient portal later that same day. Take this binder to all visits, it may save your life. It will help you to avoid repeated testing that your insurance might not pay for, it will help all your Drs understand other treatments your are receiving. TAKE ALL OF YOUR MEDICATIONS WITH YOU TO EVER VISIT THIS MAY SAVE YOUR LIFE TOO. YOU must read your results you must get help from a friend or family member to keep up with your records this is so very important, Drs can’t help you if they don’t know what another Dr has already done and the medication he has given you now and in the past. No one else will do this for you!!! Do it for yourself. It did save my life and now I travel with my binder and copies of all testings and medications for the last three years. Don’t leave home without it.

    • Donna Gregory/FedUpwithFatigue.com says:

      That is great advice! My mom had fibromyalgia and several other chronic illnesses, and she told me repeatedly to always request my medical records b/c she would often find things on the reports that her doctors overlooked. I have a big binder w/ medical records from the past 20 years. And my mom was right … I have found things on my reports that were later helpful in my care.

  5. Great list! I was diagnosed almost 20 years ago when I was 18, and I didn’t not take it as seriously as I should have. Because 18, but since then I have done everything on this list and agree completely.
    The tips about finding a doctor are spot on. I have definitely broken up with doctors who I once loved. I have had to move on from doctors I loved, because they hit the limit of what they could do to help me.
    It took me years, but now have my own little team of doctors (I have other fun non-fibo issues too). But for fibro I see a pain specialist, a rheumatologist, and a neurologist. My neurologist mainly treats my migraines but is a brilliant man who follows research about SO many conditions that are starting to point to possibly having neurological elements to them. I personally know people who thought they were going crazy and he was like on no, you just have X condition.
    It took me a long time to find my team. All of them take their time to discuss my issues. I never am rushed through. Never be afraid to break up with a doctor or get a 2nd, 3rd, 4th, etc. opinion.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m glad you’ve found a good team of physicians. That’s so important and makes a difference. I am still working on mine!

  6. Absolutely! I was diagnosed with fibromyalgia even though there were serious inflammation markers in my blood. It took me another year and several doctors before I was diagnosed with lupus (although I do think I have both diseases). It’s so important to be your own advocate!

  7. Thanks for sharing! This is useful not just for fibro patients, but lupus, and any other chronic illness too. 👍

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