You received a diagnosis of fibromyalgia. What now?
I know you’re feeling crap for months – maybe years. You’ve probably moved from doctor to doctor trying to figure out why you’re in constant pain and can barely get out of bed. You may even be relieved to finally have a diagnosis. I know it was when I was diagnosed in 2014.
But when I look at my own fibromyalgia trip, I keep making a quote: I ‘d like to know what I know now. So today, I agree with what I wish someone had told me when I was diagnosed for the first time. I hope it reduces the struggle of the other.
Tip # 1 Do not blindly accept your diagnosis
My first advice to someone newly diagnosed with fibromyalgia is to question their diagnosis. Fibro is a diagnosis of exclusion. This means that all other possible diseases should be discarded by your doctor. Are you sure he or she did this?
Too often, doctors identify someone with fibromyalgia, because that is the path of least resistance. You do not know what’s wrong with you, and there’s nothing obvious about your lab work, so it must be fibromyalgia, right?
However, I would like to encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of fibromyalgia patients were misdiagnosed.
The consequences are enormous. That is, millions of fibromyalgia suffer from undiagnosed conditions, some of which can be treated!
(“Fibro Fix” by Dr. David Brady is an excellent book that deals with excessive overdiagnosis of fibromyalgia, identifying 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 areas where medical options are limited, but if you do not fall into this category, please do not go to a doctor who does not respect you or be unable to help you.
Over the years, I have heard many horror stories of doctors from my colleagues – from doctors who said there was no fibromyalgia. Who told them they were getting old or losing weight?
If your doctor said or did any of the above, seek a new doctor (if possible)! Do not be abused! Do not let your doctor void your illness!
You do not do that, and it’s not all in your head. Never doubt it! Find a doctor who believes in fibromyalgia, understands the complexity of the disease, and is familiar with the latest findings.
I’ll let you know: it’s hard to find a good fibro doctor. Expect to go from doctor to doctor for a while before finding the right one, but believe me, the right doctor is worth the effort!
Tip # 3 The “right doctor” is probably not a family doctor or rheumatologist
The Medscape Compensation Report for 2016 found that physicians need an average of approximately 15 minutes per visit. This is not long enough for the patient to get rid of the symptoms, and the doctor must prescribe a prescription to cure the disease. It works if you have something as simple as the flu, but if you have a complicated chronic condition like fibromyalgia, it will not cut it.
So what’s the solution? Find health professionals who work differently in healthcare. For years I’ve been with several doctors and family specialists. None of these doctors kept the answers to help me feel better about Fibro. You know why? Because they all just looked at a part of my health problems.
The only success I have had in reducing my symptoms was working with doctors who practice functional medicine. Functional medicine physicians seek a more systematic approach of the whole body in health care. They understand that the symptoms do not occur in a vacuum. Our chronic pain, indigestion, migraine, fatigue and the variety of other fibrosis-related symptoms we experience are all intertwined and should be treated as such.
In functional medicine, the goal is to restore general health and not just treat the symptoms with newer medications. Functional medicine practitioners tend to use many more tools, such as lifestyle changes, natural dietary supplements, and alternative therapies than traditional practitioners. If I were diagnosed today, I would go directly to the Institute of Functional Medicine’s website and try to find a local functional medical practitioner who was familiar with fibromyalgia.
I know of other fibropaths that have produced good results for natural health professionals, osteopathic doctors and even chiropractors. These types of medical providers tend to have a more open mind. This is important because there is no magic pill for fibromyalgia (see tip # 4) and you need a doctor who is not afraid to try out emerging treatments (see tip # 8).
I am not suggesting that all traditional doctors are incompetent and slaves to the pharmaceutical industry, but I say that you have a better chance of improving your results by working with a physician who follows a comprehensive and holistic approach to treatment.
Tip # 4 There is no magic pill
The year after my diagnosis, I tried some of the usual fibroid medications, but none of them helped. They did not work or made me a zombie.
When I looked closely at the results of research on the three drugs approved by the FDA – Fibromyalgia – Cymbalta, Lyrica and Savella, it quickly became clear why they did not work for me. The truth is that they do not work very well for most patients with fibrosis. For example, only about one-third of patients taking Cymbalta report at least 50 percent pain reduction, and this is the most effective drug of the three!
These drugs do help some fibromyalgia – patient, and I discourage anyone from trying, but for most of us there is no magic pill.
Tip # 5 It will take more than just medication to feel better
In the research, I occasionally come across so-called success stories involving people who have completely recovered from fibromyalgia or successfully reduced their symptoms. Reading their stories, I discovered a pattern: each of them used various modalities to feel better.
Nutritional changes are almost always mentioned. They gave up sugar and processed foods and fed a complete meal diet. Many of them were dairy, soy and gluten free.
They fundamentally revised their lifestyle. They meditate or practice yoga or tai chi to calm the hyperactive nervous system. They go for gentle walks or water exercises to stay active. They regularly spend time outdoors. They learn to move. They have become experts in stress management.
Sometimes they used prescription drugs, but that was only a small part of the overall treatment plan. In short, they chose a more natural and lifestyle-based approach to treatment.
(If you are interested in a more comprehensive treatment, I would recommend Dr. Ginevra Liptans “The FibroManual”) to read. It is one of the best fibromyalgia books I have ever read, as it contains information on traditional material treatments with alternative therapies and lifestyle recommendations. Dr. Liptan really gets fibromyalgia because she herself is a fibro warrior!)
Tip # 6 Search for Yourself
We all know that doctors are very busy, and most of them do not have the time to keep up to date with the latest research and treatments in all the conditions they are exposed to on a given day. So do not just trust them for your healing!
Here’s the harsh reality: as soon as you leave the examination room, you become the next patient. They probably will not think of you until they see your face in the next consultation.
So it’s up to you to become your best health advocate. Go to the internet and do your own research! Discover new treatments or therapies and take them to your next medical appointment for discussion. (Attention: Some doctors may not respond positively to treatment suggestions, and if this happens, it may indicate that you may not be working with the right doctor.) An effective and considerate physician will be open to discussing various treatments.
Be proactive in treating your symptoms by making the major lifestyle changes mentioned in Tip 5.
Become an expert for your chronic illness! I learned early that I would never feel better if I relied solely on my doctors for my answers. You just do not have the time or the attention.
Tip 7 Connect with others with fibromyalgia
Fibro can be a solitary and miserable condition. Friends and relatives may be suffering from their pain, but the truth is that no one really gets fibromyalgia until they get it on their own.
But there is a group of people who will always understand their suffering: their fellow combatants! Try to get in touch with others who have fibromyalgia through local and / or online support groups. (There are hundreds of fibromyalgia support groups on Facebook!)
You will learn a lot from your fellow warriors! Many of them have been for decades with fibromyalgia in the trenches, and they know better than anyone else, eliminating the pain or the way to shorten an avalanche of symptoms. They also understand all the emotional material that is associated with an unpredictable, vital chronic illness.
Bonus Tip: Local support groups are a good source for finding the best fibro doctor in your community.
Tip # 8 Discover Emerging Treatments
At the beginning of my diagnosis, I was much more strict to work only on treatments proven by the research. However, it did not take long for me to realize that research on fibromyalgia is still in its infancy and that there is a unique approach to treatment. One of the great mysteries of fibro is that what works for one of us does not necessarily work for the rest of us.
That is why I have become much more open about treatment. In a way, I became my own guinea pig. I’m not afraid to try new treatments – of course, after careful research and a talk with my doctor! Some of the most effective tools in my current fiber control arsenal would be considered a marginal treatment, but they work for me and that’s what matters.
I learn a lot from my other fibro warriors (see tip # 7). They are an invaluable resource and often years ahead of researchers when it comes to natural or alternative treatments.
Tip # 9 How well you deal with fibromyalgia is up to you
A few days ago, someone in an online fibro support group said that the pain was his girlfriend. Maybe I’m not mentally mature yet, because I do not want to befriend my pain.
But I see chronic pain as a great teacher. After your diagnosis, you will learn a lot about yourself, your loved ones and the medical community. Your strength is tested – sometimes daily – and it is up to you to decide whether to deal with this battle with grace or despair.
Fibromyalgia will change you as a person. It’s up to you whether it’s for better or for worse, but you always have a choice. Remember this.
Now it’s your turn: what advice would you give to someone who has been diagnosed with fibromyalgia?