Health & Wellness Personal Life & Family

Living With Fibromyalgia

​”What is Fibromyalgia?” “You Don’t Look Sick” or “You Look Fine”

How many times have I heard those words?

I have become a pro at “pretending” to be OK or just telling people that I’m fine because it is easier than explaining to them what pain I am experiencing today and at what level, why my skin feels like it’s on fire or that I am so tired it is hard to move or breathe.  I do not blame those around me for looking at me and wondering why I say I am not feeling well because I do not understand it myself.  So why “pretend” to be OK?  Well I guess it is just that I do not want to explain why today it is my neck that is so painful when yesterday it was my knee or explain why I cannot remember the words to complete my sentence or explain why I’m just too tired to socialize. 

The Hurdles to Being “You” With Chronic Pain or Fibromyalgia

I’ve never liked to hear people constantly complain about how they are feeling or complain about how tired they are so I guess in my mind I’m justifying withholding the truth so that I am not “that person”.  Living with this disease affects every aspect of your life because it affects so much of your mind, body and soul.

Understanding what being diagnosed with this disease means is the First hurdle in this lifelong battle.  Fibromyalgia is different for everyone and there is no cure or one size fits all treatment plan.  According to the American Chronic Pain Association “Fibromyalgia is a medically unexplained syndrome characterized by chronic widespread pain and a heightened and painful response to normal activity. Other core symptoms are debilitating fatigue, sleep disturbance, and joint stiffness”. 

The Second hurdle is getting to know your body’s signals and recognizing each day what symptoms are ailing you.  By doing this; you can make changes or adjustments to reduce the pain, fatigue and mental disruptions as much as possible.  There are many symptoms of this disease and each patient has a mixture of these, which can change on a daily basis.  Here is a list of the most common Fibro symptoms published by the Fibrocenter…..   

  • Chronic and sometimes excruciating pain
  • Deep pain
  • All-over pain
  • Aching pain
  • Radiating pain
  • Shooting pain
  • Tender pain
  • Sleep disruptions
  • Chronic fatigue
  • Problems with memory and thinking clearly (sometimes called “fibro fog”)
  • Problems with depression and/or anxiety
  • Overlapping conditions such as irritable bowel syndrome, restless leg syndrome, migraines, and others

Learning to live with Fibromyalgia

 The Third hurdle is, in my opinion, the hardest and longest one; it is learning to live with this chronic and debilitating pain.  This is hard to do because you know the “you” you used to be and you know how you used to live. You don’t want to let your spouse, kids, family or friends down. Each day is different and your symptoms can be different everyday. Understanding that your life is forever changed will help you to live with the disease and learn to love the person you are today.  I remember how unassuming I went about my day; I took for granted my mobility, sharp mind and pain free body.  Now I find myself longing to be that person again.

Hurdle number Four I would have to say is learning to ask for help. I am not the type of person who is comfortable asking for help because I fought so very hard for a long time to become an independent strong woman.  So sometimes I overdo what my body can tolerate. As a result, I pay the price for the next several days with a flare-up.  What I am finally beginning to realize is that asking for help is not weakness at all but true strength.   

Accepting who you are now

Finally, hurdle number Five is accepting the new you and learning to love YOU again.  This is a tough one for me. I am still struggling to be OK with who I am today.  I want to be a strong and vibrant woman who gets excited for new adventures.  What is important to me is being able to play with my grand kids without pain. I’d like to go on vacation and actually know that I will have an amazing time. Simple things like cleaning my house or taking a walk without feeling extreme pain or fatigue would be wonderful.  I am not over this hurdle yet but I am working on it day after day. I’m not sure I ever really loved ME so I will learn to love the NEW ME.

If you struggle with chronic pain or Fibromyalgia {Gentle Hug} remember to put you and your needs first and take care of yourself.  Sometimes a day of sleeping, relaxing and binge watching Netflix is OK because you are giving your body exactly what it needs!

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