Two years ago, I awoke to the reality that my life had changed because I was dealing with a second chronic condition that came only a few months after my diagnosis of rheumatoid arthritis. My fibromyalgia symptoms went back to my teen years. My sister was also recently diagnosed so I have found myself trying to make sense of a life with fibromyalgia whether I want to or not.
As a fibromyalgia sufferer, I know all too well the questions of a newly diagnosed patient and even as someone with experience, I still have few answers. That is because fibromyalgia is still a very misunderstood condition that can wreck so much havoc on person’s life – both professional and personal. I know what it means when someone says, “I am sick and no one knows why.” I know that when someone says that their pain is real and not imagined that they are struggling with answers that even the medical community cannot answer. I know that can be a lonely feeling and so I am hoping that this post offers some hope to those who have been recently been touched by fibromyalgia and those seeking answers about fibromyalgia.
Newly Diagnosed and Confused
If you have just been diagnosed with fibromyalgia, you have been battling pain, fatigue, and a variety of other symptoms for quite sometime. Having a name for your condition can be a relief, but just learning that you have a chronic condition with no cure can be difficult to comprehend and even deal with. Getting a diagnosis is only the beginning for you and it is only step one of your journey towards management of your condition and your new reality that does not have been a negative one.
The Mayo Clinic reports that fibromyalgia affects 2% of the population and most of those are women. In addition, it is a very misunderstood condition with no specific treatment or cure. As a newly diagnosed person, you find yourself in dark with no map or even a flashlight to guide yourself towards answers. That feeling is very lonely and like traveling through a maze of confusion, but you will still have to find a way to live with this mysterious illness, regardless of what you are feeling.
First, understand that there is no cure, even though you keep reading that someone does have a cure and that everyone in your life is giving you advice that weight loss, eating better, resting more, and/or taking a vitamin will magically cure you (Weight loss, healthy eating, less stress, good sleep, vitamins and supplements may relieve symptoms but they are not a cure). Maybe, it has been suggested that it is all your head, and that fibromyalgia is name given to an illness that isn’t real. Understand that despite all this confusion about fibromyalgia, there is hope. Many patients have found relief and management of their symptoms through a variety of sources and are able to live happy and productive lives. The key is to keep looking for answers and finding out what works for you.
The medical community is finally getting around to finding answers and understating that fibromyalgia is a “real” disease. Still, there are many questions because there are no definitive medical tests to properly diagnose a patient. A diagnosis is based on patient history and pain pressure points. In addition, the American College of Rheumatology has proposed a new diagnostic criterion for fibromyalgia that includes the most common symptoms including fatigue, sleep disturbances, and cognitive problems, as well as pain.
While the path to treatment is still quite frustrating, it is not an impossible path the more doctors know about fibromyalgia. A patient has to make a choice to be educated and rather than having one doctor treat you, you should work with a team of medical professionals to help you be successful with your treatment options. There are many great websites that offer information on self management and team-approached treatment, including Web MD’s fibromyalgia health center and the National Fibromyalgia Association.
Your Medical Team
Your medical team should include your medical doctor, your pharmacist, a mental health professional, and alternative care providers.
Your medical doctor should have experience in dealing with fibromyalgia patients. This may take a trial and error approach to finding the right one but as a patient, you should be aggressive in your search to finding a doctor who knows a great deal about fibromyalgia and not someone who tells you that your symptoms are “all in your head.” Yes, there are doctors that still do not believe that fibromyalgia exists even in the year 2010.
If you chose a medicinal route, your pharmacist can offer a wealth of knowledge. Many of the newer drugs prescribed for fibromyalgia have side effects. Therefore, communication with your pharmacist is vital. Some mail order pharmacies actually make communication between the patient and pharmacist a requirement. For example, for my rheumatoid arthritis Humira injections, the mail order pharmacist will call at least every couple of months to check in with me on how my treatment is going prior to filling my prescription. With fibromyalgia, one of the key symptoms is sensitivity to medications so when the pharmacy tech asks if you want to talk to the pharmacist, do so, especially if you have been prescribed a new medication. Tell your pharmacist what other medications you are on and any side effects and/or adverse reactions to medications you have had in the past.
The mental health professional is not someone anyone of us wants to talk to but depression and stress are common for those suffering from long term illness and pain. Fibromyalgia symptoms are exacerbated by stress so talking to a therapist about coping mechanisms can prove beneficial. It is important, however, to find someone who has deals with chronic illness and pain management.
Alternative care providers are also a great resource for fibromyalgia patients, including naturopathic or chiropractic doctors and massage or acupuncture therapists. Some patients have actually reported symptom and pain relief from these resources so be open to treatment options.
Let’s Be Open Minded
Fibromyalgia may be a chronic disease but treatment options are available and as a sufferer, you should consider all your options. New study results come out on yearly basis as do treatment options and advancements. By educating yourself with open mind and keeping your treatment team nearby and updated, you can view fibromyalgia as something that you can overcome daily and live with rather than life sentence that you have been given.
The Outside View on Fibromyalgia
There are many ways you can try to explain fibromyalgia to family and friends. You can share with them this letter about fatigue and chronic pain, but don’t be discouraged if some friends and family members refuse to understand or believe you about your symptoms and your diagnosis. Learn who you can confide in and who you can ask for help. Resist the urge to strangle those who still insist that your symptoms and pain are all in your head. Just make a choice to simply understand that some people are just ignorant and don’t want to understand what it is like living with fibromyalgia. In addition, don’t allow yourself to become depressed because there are people in your life who don’t make the effort to understand. Focus on your health and the people who need you the most.