Dealing with New Diagnoses in Fibromyalgia & Chronic Fatigue Syndrome

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An Important Process

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It's a real blow to be diagnosed with fibromyalgia, chronic fatigue syndrome, or any chronic illness. If it's been a long-time coming, the diagnosis may, in some ways, be a relief. However, that doesn't mean you won't struggle with certain aspects of it as you move forward.

Learning to deal with a diagnosis is important, especially since few of us only have one. I haven't gone a single year without at least one new chronic diagnosis, and it always takes some time to adjust.

Nothing's going to make it a breeze to tack on diagnoses and modify your life because of them. If you keep some simple steps in mind, though, it may help you through those days, weeks, and months after you a new diagnosis.

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#1 - Allow Yourself to React Emotionally

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How do you feel about your new diagnosis? Scared? Angry? Confused? Whatever it is, it's OK. Allow yourself to have these feelings. There's no shame in being upset when you're dealing with illness.

It may help you to view the emotions of a new diagnosis as a grieving process – that covers any loss, not just death, and a chronic diagnosis often comes with losses. The loss of function, the loss of freedom and independence, the loss of your health … those are all perfectly valid reasons for grief.

Knowing about the grief process may help you get through this time:

Don't hesitate to ask for help if you feel you need it. Your doctor should be able to refer you to a qualified mental health professional, and you may be able to find support groups either online or in your community.

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#2 – Know the Condition

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Here are a couple of clichés that are actually accurate when it comes to a new diagnosis:

  • We fear what we don't understand;
  • Knowledge is power.

Sure, some aspects of your new illness may terrify you. However, it's important for you to understand what's going on in your body. It's better to know, for example, that a particular symptom is a possibility. That way, if you start experiencing it, you're less likely to be confused and thrown into a panic.

Knowing your disease can also help you make informed decisions about treatment and lifestyle issues. People love to give advice to those of us who are sick and much of it is bad advice. You're also likely to see all sorts of miracle "cures" touted on the Internet. The better you understand you illness and how it works, the easier it is to sort the good information from the bad.

Beyond knowing about your condition(s) in general, you need to know how they impact you. Do your symptoms get worse during certain hormonal phases? During certain seasons? After eating a particular food? Knowing your own patterns and idiosyncrasies can help you arrange your life around your illness more effectively and may also shape your treatment decisions.

Not long after I was diagnosed with fibromyalgia, I realized that my flares were directly linked to my menstrual cycle. When I talked about this with my gynecologist, he suggested an endometrial ablation to eliminate the hormones put off by the uterus as it thickens. The procedure reduced my flare frequency, length, and severity considerably.

A symptom journal may help you discover important things about your illness. Here's some help with how to journal effectively:

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#3 – Know Your Treatment Options

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Some people want to just do what their doctor says and not worry about other treatment options. Sometimes that works out really well. Other times … not.

It's important to realize that not all doctors are experts in treating what you have – especially if you're not seeing a specialist. Medical knowledge expands and changes so rapidly that many doctors have to micro-specialize in order to stay on top of it all. Even then, experts may disagree on what the best treatments are.

By doing your research and knowing your options, you may be able to bring things up that your doctor didn't consider. For instance, many doctors don't know a lot about nutritional supplements or alternative medicine. If you don't learn about your options and ask your doctor about other courses of action, you could miss out on something really beneficial. (You should ALWAYS talk to your doctor about treatments you like to try to make sure you're not doing anything to harm yourself.)

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#4 – Educate Those Around You

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The people in your life are impacted by your illness and need to know what to expect. It's up to each one of us who well tell about our health problems and how much we share about them. However, knowing a little about your illness can help people understand a lot about you.

Sometimes, it's vital that people know about your health problem, such as if you have a bad heart, or seizures, or something that could make you lose consciousness. Other times, it can be a big help. Many of us with fibromyalgia and chronic fatigue syndrome have language problems. When you frequently struggle to remember words or lose your train of thought, it can really throw a wrench into communication. If the people around you know this is a symptom, it may make them more patient and you less self-conscious.

Living with a chronic illness is better when you have a strong support system. Your friends and family can support you better if they understand what's going on in your body. Here are some resources for them:

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#5 – Consider Lifestyle Changes

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Do you need more downtime? Less stress? A quieter place to live? Would a few minor changes at work make it easier to get through the day?

Whether we want to or not, a reality of having a chronic illness is that we have to – at least in some ways – re-shape our lives around it. (You should allow yourself to grieve over this process, too. It can be a tough thing to do.)

These articles can help you identify the changes you may need to make and get through that process:

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