My Fibromyalgia: How I Take Care

I thought it might be useful for others to know how I have been mananging (sometimes mis-managing) my fibromyalgia in a Q&A format.  Please, note that I write my fibromyalgia for a reason.  As stated in various posts and in the main section on fibromyalgia, fibromyalgia is unique to the individual.  Thus, what might work for me, might not work for you.

How long have you had fibromyalgia?

I estimate that I experienced my first symptoms as early as 2005, beginning with persistent migraines.

When were you officially diagnosed?

I was officially diagnosed in 2008. It took three years to sort through whether or not it was just “all in my head”–just kidding…sort of. 😉

Luckily, in 2007, my dermatologist was the one who caught on first to what was going on.  She suggested that I discuss the possibility with my primary care physician.

How were you diagnosed?

Well, I was referred to a psychiatric nurse specialist, who in turn referred me to a rheumatologist.  The diagnosis was assessed and confirmed by him through questioning and testing the 18 pain points/areas on my body.  I had them all.

Just how bad is your fibromyalgia?

Hmm, currently?  Not bad at all…relative to the past (and to the season). 😉 In the past, it was truly horrific.  However, I did change my life drastically.  I resigned from my work as an expressive therapist, ended my marriage, moved from Boston to Rome, and became a student again.

Before having done all of that, however, I did make great improvements, between 2009 and 2010.  If I had not made those improvements, then I probably would never have changed my life as I did.

So, just what did you do to improve your symptoms?

Well, improving my symptoms is an ongoing effort.

Still, in May 2009, the first thing I did that changed my circumstances was make a decision. At that time, I had had to take a medical leave from work beginning in March, spent most of my time unable to walk and bedridden.  I was in misery.  I disliked my situation and felt myself to be helpless and hopeless.

I am, however, a person who tends towards being proactive and am solution-focused.  Thus, I decided that, regardless of my negative self-talk and challenging emotional state, I would do something to change my situation and self-perception.

 I began by soliciting help from two friends from the local knitting group that I was leading at the time, and we began a 5 minute walk plan (not daily, but we tried).  You can read a bit more about that story and the relationship between fibromyalgia and exercise here.

I also decided to learn about the relationship between food and fibromyalgia.  Subsequently, I bought the book Foods that Fight Fibromyalgia by Deirdre Rawling.  I also joined Weight Watchers Online for one month.

Why, especially when I am not a fan of diets? Because it wasn’t a diet for me, but a complete change in my way of eating.  I needed structure and the online tool helped me to have that structure.

You see, I have a body type that if it is still for even a little while, it tends to gain weight rapidly.  At that time, not being able to move much, I reached 198 pounds–even though no one seemed to notice it.

My doctor had already warned me that I had developed high blood pressure, especially because of the history of heart disease in my family.  Moreover, heart disease is the leading cause of death for African American women.  He referred me to a nutritionist…who actually told me that “Black women are naturally fat and [I] don’t need to lose weight.”  Really? She actually prescribed for me a meal plan that caused me to gain more weight, rather than lose.

I decided enough was enough.  I decided to take the management of my health into my own hands.

Eventually, I lost more than 70 pounds, became vegetarian, and began being able to walk for longer than 30 minutes.  I even went from taking several medications to only taking 3.

Do you have any other comorbid diagnoses?

Yes. I have been diagnosed with polycystic ovarian syndrome (PCOS), seasonal affective disorder (SAD), Raynaud’s disease/syndrome, irritable bowel syndrome (IBS). I have hirsutism, am prone to migraines and am gluten-sensitive.  There may be or may have been other issues. 🙂

Okay, that’s a lot.  So, what exactly do you do now?

You’re right, but it was a four-year long journey up to that point. 😉  What do I do now? I have established some basic daily rules for myself.

• Express Gratitude:  Upon waking and before going to sleep, I thank the universe for my life, my body, my supports, my challenges, my illness, etc.
• Go for a Walk (whether it is 5 minutes or 5 hours):  I usually walk 1-2 hours daily.
• Remain Body Positive: I consider my body a temple that is deserving of the best that I can offer it.  It may sound cliché, but it is the truth.  I appreciate my body in all its perfect imperfections.  I take good care with how I treat it externally and internally.
• Maintain Food Positivity: I focus on eating what my body likes (rather than what my mind and emotions crave).  I eat fresh vegetables and fruits, enjoy nuts and dried fruits, consume low carbohydrate milk products such as Greek yogurt, limit my intake of gluten loaded foods such as bread.  My basic rule is:  if it can live on a shelf for longer than a week, then it is for limited consumption.  Don’t get me wrong, I eat what I want within reason.
• Take Medication and Vitamins: No excuses. I take my medication and my vitamins.  That’s it.
• Limit Fibro/Illness Speech: In my world, unless I have a reason to, I aim not to discuss my illness or current physical status with anyone.  I know how I feel and I don’t need others to know I feel.  I also do not need to remind myself about how I am feeling.  I know it and I choose not to reinforce it.  I choose to focus on how I will soon feel…which is healthy and happy. 🙂
• Check-in with Supports: Along with the above limiting fibro-speech, I believe in checking in with someone (best friend, loved one, therapist, support group) about how the day is going, if you need it.  It’s good to be able to speak freely and honestly with someone who knows your situation and who does not need explanations or to ask questions.
• Practice Opposite Action: Don’t feel like getting out of bed?  I get out of bed.  Don’t have the energy to make the effort with how I look?  I make the effort.  I always tell people around me that the days that I look my best are often the days I feel my worst.  It is important for me to do what I can for myself to feel the best I can about myself.
• Make Goals and Create Plans:  Even though having fibromyalgia has caused me to change my direction in life, it has also forced me to examine those goals and understand what is most important to me.  What I’ve come to realise is that I can achieve my goals–it just takes a bit more effort. 🙂 So, never give up your goals…just see where you might need to make some modifications.
• Believe in Possibilities:  I am a fan of law of attraction.  Ask. Believe. Receive.  I have found that when I focus on believing, e.g. believing myself, my supports, my dreams, etc., I am able to achieve my goals.

 

Okay, but what medications do you take?  Certainly, that’s been most beneficial.

Well, I choose not to be specific, because I prefer not to endorse one medication over another.  I take an atypical antidepressant that works with dopamine rather than serotonin.  I also take a medication that manages blood pressure and helps with the hirsutism.   Beyond that I take a multivitamin as well as extra iron, folic acid and Vitamins C & B12.

Regarding what has been most beneficial, I believe that it is the combination of independent self-care (food, exercise, stress management, etc.) and medication. One without the other does not work for me.  It may, however, work for someone else.

More questions or seeking resources about fibromyalgia?  Visit my Resources page for more links! Also, feel free to email me at diedreblake@gmail.com!