Newly Diagnosed?

In 2007, I was diagnosed with fibromyalgia, but I had no idea how much my life was going to change. You can read about the fall down a set of stairs and emotional turmoil that lead to my diagnosis here.

As a fibromyalgia sufferer (FMer), I know all too well the questions, fears, and concerns of a newly diagnosed patient, and even as someone with experience, I still have few answers. Fibromyalgia is still a very misunderstood condition that can wreak havoc on a person’s life – professionally and personally. Although research and knowledge about fibromyalgia has come a long way in the past few years, it still has a ways to go.

I know what it means when someone says “I’m sick and no one knows why or understands.” I know how it feels to look “healthy” on the outside, but dying on the inside. 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 I’m hoping that my blog, “Life in the Fibro-Lane,” can offer you a community of fellow FMers, and hope for those seeking answers.

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 some time. Receiving a diagnosis of fibromyalgia can be scary and overwhelming, but also relieving at the same time. But just learning you have a chronic condition with no cure can be difficult to comprehend and deal with. Getting a diagnosis is only the beginning for you and it is only one step of your journey towards management of your condition and your new reality. But it doesn’t mean that it’s the end of the world. It’s just the beginning of a new one. How you face that new world is up to you.

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.

If you haven’t already checked out my Fibromyalgia FAQ page, I suggest you start by reading through it. It offers a basic overview of fibromyalgia.

There is  no cure.

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 a 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. It’s often a diagnosis of  “ruling out” other potential conditions. 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 as  more doctors learn about fibromyalgia. It is up to you to make a choice to be educated. 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 listed on my Resource page.

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 now.

Your pharmacist can offer a wealth of knowledge regarding medications. Many of the newer drugs prescribed for fibromyalgia have side effects. Therefore, communication with your pharmacist is vital. 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. For example, my doctor prescribed me the relatively new drug Savella to treat my fibromyalgia. I didn’t ask my pharmacist or doctor many questions about and blindly assumed they knew what they were doing. After a few days on the medication, I was experiencing drastic mood swings, personality changes, irritability, irrational anger, and more (doesn’t mean this will happen to you). It wasn’t until I went online and looked up side effects to Savella that I realized I was having a severe reaction to the drug and had to be taken off it immediately. It was a rough eye-opener and reminder to always talk to my doctor and pharmacist about my medications.

Depression and stress are common for those suffering from long term illness and pain. Fibromyalgia symptoms are exacerbated by stress so talking to a mental health therapist about coping mechanisms can prove beneficial. It is important, however, to find someone who works 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.

The ‘outside view’ of 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.

Be open-minded and encouraged.

Fibromyalgia may be a chronic disease and an “invisible illness”, but treatment options are available. As a FMer, you should consider all your options. New study results come out on yearly basis as do treatment options and advancements. By educating yourself with an open mind and keeping your treatment team nearby and updated, you can view fibromyalgia as something that is a part of you, but does not define who you are. You can have hope. Be encouraged and discover the new world waiting for you. Will it all be peaches and cream? Absolutely not. Some days will be better than others. But through it all, you can decide how you want to live your life. For me? I’d rather enjoy life and squeeze the most I can out of it rather than condemning myself to a life sentence of misery.

As you explore this blog, “Life in the Fibro-Lane,” I pray you find a community and hope as you go through your fibromyalgia journey.