You have received a diagnosis of fibromyalgia.
I know you’ve been feeling very bad for months, maybe years. You have probably changed from doctor to doctor trying to find out why you have constant pain and can barely get out of bed. You may even feel relieved that you finally have a diagnosis. I know it was when I was diagnosed in 2014.
But when I look back on my own journey of fibromyalgia, I still have a date: I wish I knew what I know now. So today I agree with what I wish someone would have told me when they first diagnosed me. I hope that another’s struggle will be reduced.
Tip # 1 Do not blindly accept your diagnosis
My first advice to anyone newly diagnosed with fibromyalgia is to question their diagnosis. The fibro is a diagnosis of exclusion. This means that the doctor must rule out all other possible diseases. Are you sure he or she did that?
Too often, doctors identify someone with fibromyalgia because that is the path of least resistance. He does not know what’s wrong with him, and there’s nothing obvious in his lab work, so it must be fibromyalgia, right?
However, I encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of patients with fibromyalgia were misdiagnosed.
The consequences are enormous. That is, millions of fibromyalgia suffer from undiagnosed conditions, some of which are probably treatable!
(“The Fibro Fix” by Dr. David Brady is an excellent book that deals with the excessive diagnosis of fibromyalgia, identifying other conditions that simulate fibromyalgia and how to know if it really has fibro).
Tip # 2 Find a good doctor
I know that some people live in areas where medical options are limited, but if you are not in this category, do not go to a doctor who does not respect you or who can not help you.
Over the years, I’ve heard so many horror stories from doctors and colleagues who told me there was no fibromyalgia. Who told them they were just getting old or losing weight?
If your doctor has said or done any of the above, look for a new doctor (if possible). Do not be abused! Do not let your doctor cancel your illness!
You can not do it, and it’s not all in your head. Never doubt it! Find a doctor who believes in fibromyalgia, understands the complexity of the condition and is familiar with the latest findings.
I warn you: it is difficult to find a good doctor for fibro. Expect to go from doctor to doctor for a while before finding the right one, but trust me, it’s worth the effort of the right doctor!
Tip # 3 The “right doctor” is probably not a family doctor or rheumatologist
The 2016 Medscape Compensation Report found that doctors require an average of approximately 15 minutes per visit. This is just long enough for the patient to get rid of his symptoms, and the doctor must write a prescription to remedy the illness. 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 is the solution? Find health care providers that work differently in health care. For years I have been with several family doctors and 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 had in reducing my symptoms was working with doctors who practice functional medicine. Functional medicine physicians seek a more systematic whole-body approach to health care. They understand that symptoms do not occur in a vacuum. Our chronic pain, indigestion, migraines, fatigue and the variety of other symptoms related to the fibro we experience are all interconnected and should be treated as such.
In functional medicine, the goal is to restore general health and not just treat the symptoms with the latest medications. Functional medicine professionals tend to use many more tools, such as changes in lifestyle, natural dietary supplements and alternative therapies than traditional doctors. If I were diagnosed today, I would go directly to the Institute of Functional Medicine website and try to find a local functional medicine doctor who is familiar with fibromyalgia.
I know of other fibropaths that have worked well for natural health professionals, osteopathic doctors and even chiropractors. These types of medical providers tend to be more open minded. This is important because there is no magic pill for fibromyalgia (see Tip # 4) and you need a doctor who is not afraid to experiment with emerging treatments (see Tip # 8).
I am not suggesting that all traditional doctors are incompetent and slaves of the pharmaceutical industry, but I say that it is more likely to improve their results by working with a doctor who follows a comprehensive and holistic treatment approach.
Tip # 4 There is no magic pill.
The year after my diagnosis, I tried some of the usual fibromedicines, but none helped me. Either they did not work or they made me a zombie.
When I looked closely at the results of the research studies on the three drugs approved by the US Food and Drug Administration. UU For 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 fibro-patients. For example, only about a third of patients who take Cymbalta report at least 50 percent pain reduction, and this is the most effective drug of the three!
These medications do help some fibromyalgia – patient, and discourage anyone from trying, but for most of us there is no magic pill.
Tip # 5 It will take more than just medicine to feel better
In research, I occasionally encounter so-called success stories that involve people who have fully recovered from fibromyalgia or who have successfully reduced their symptoms. When I read their stories, I discovered a pattern: each of them used several modalities to feel better.
The nutritional changes are almost always mentioned. They abandoned sugar and processed foods and were fed a complete diet. Many of them were dairy, soy and gluten free.
They have fundamentally revised their lifestyle. They meditate or practice yoga or tai chi to calm their hyperactive nervous system. They make gentle walks or aquatic exercises to stay active. They regularly spend time outdoors. They learn to move themselves. They have become experts in stress management.
Sometimes they used prescription drugs, but that was only a small part of their general treatment plan. In short, they have chosen a more natural and lifestyle-based treatment approach.
(If you are interested in a more complete treatment, I would recommend that you read the “Manual FibroManual” by Dr. Ginevra Liptan). It is one of the best books on fibromyalgia that I have read, as it contains information on treatments of traditional materials with alternative therapies and lifestyle recommendations. Dr. Liptan really acquires fibromyalgia because she is a fibro warrior herself!
Tip # 6 Investigate for yourself
We all know that doctors are very busy, and most of them do not have time to keep up with the latest research and treatments in all the conditions to which they are exposed on a particular day. So do not rely solely on them for your healing!
Here is the harsh reality: as soon as you leave the examination room, you become the next patient. They probably do not think about you until they see your face at the next appointment.
So it’s up to you to become your best health advocate. Go to the internet and do your own research! Find out about new treatments or therapies and take them to your next appointment with the doctor for discussion. (Warning: Some doctors may not respond positively to treatment suggestions, and if this happens, it may indicate that you may not be working with the appropriate doctor). An effective and caring doctor will be open to talk about various treatments.
Be proactive in treating your symptoms by making the major lifestyle changes mentioned in the Board 5.
Become an expert for your chronic illness! I learned early on that I would never feel better if I depended solely on my doctors for my answers. You just do not have the time or the attention capacity for it.
Tip 7 Connect with others with fibromyalgia
Fibro can be a lonely and miserable condition. Friends and family members may be suffering from their pain, but the truth is that no one actually receives fibromyalgia until he himself has it.
But there is a group of people who will always understand their suffering: their fellow combatants! Try to communicate with other people who have fibromyalgia through local support groups or online. (There are hundreds of fibromyalgia support groups on Facebook!)
You will learn a lot from your fellow warriors! Many of them have been in the trenches for decades with fibromyalgia, and they know better than anyone what it is that eliminates pain or how to eliminate an avalanche of symptoms. They also comprise all the emotional things that accompany a chronic, unpredictable and vital illness.
Additional tip: local support groups are a good source to find the best fiber specialist in your community.
Tip # 8 Discover emerging treatments.
At the beginning of my diagnosis, it was much stricter to work only on proven research treatments. However, it did not take me long to realize that research on fibromyalgia is still in its infancy and that there is no single treatment approach. One of the big 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 the treatment. In a way, I’ve become my own guinea pig. I’m not afraid to try new treatments, of course, after careful research and a conversation with my doctor! Some of the most effective tools of my current arsenal for the control of fibrosis are considered a complementary treatment, but they work for me and that is what matters.
I learn a lot from my other fibro warriors (see Tip # 7). They are an invaluable resource and are often far ahead of researchers when it comes to natural or alternative treatments.
Tip # 9 How well do you handle fibromyalgia depends on you?
A few days ago, someone in an online fibro support group said that the pain was his girlfriend. Maybe I’m still not mentally mature, because I do not want to become friends with 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 if you handle this battle with grace or despair.
Fibromyalgia will change you as a person. It depends on you whether it is for good or bad, but you always have the option. Remember that.
Now it’s your turn: what advice would you give to someone who has been diagnosed with fibromyalgia?