Fibromyalgia And Me: Living With An Invisible Illness

Fibromyalgia And Me: Living With An Invisible Illness

By Knikkolette Church

I didn’t start out feeling sick, my first symptom was a bad memory.  I couldn’t remember anything – the smallest things, the largest things – everything that used to be easy for me to remember was now slipping my mind.  I felt like I was going crazy!  This was almost ten years ago and I was too young to be having problems with my memory… only OLD people had problems with their memory!  So I went to my doctor and she said it was probably just stress and lack of sleep and prescribed a sleep aid.  I went home optimistic – hoping that would resolve my memory problem.  No such luck.

Know the signs!

Know the signs!

Not only did my memory not improve, neither did my sleep.  I had become an insomniac.  I was averaging 2 – 3 hours of sleep a night even with the prescription to help me sleep.  After about a month I came down with what I thought was the flu.  I felt like I had been run over by a truck, my muscles felt like I had worked out really hard the day before (I didn’t), my hands were so sore and stiff I could only hold a cup with two hands, I was getting migraines on a regular basis, and was so weak I couldn’t get out of bed.  Unlike the flu, after a week or so I didn’t get better.  I continued to be tired all the time; so tired I couldn’t walk up and down the stairs in my house without sitting to rest.   What you need to understand, is before I got sick, I was very active, exercised all the time and could hike miles, so not being able to climb a single flight of stairs for me was devastating.

Trying to be optimistic and looking on the bright side, I did have good insurance.  So even though I had to leave work on short term disability, the numerous doctor visits, prescriptions, physical therapy sessions, etc.. I was averaging  spending $500 per month.  So over a period of almost a year having dozens of tests, blood work, MRIs, specialists poke and prod and even one doctor tell me to my face there was nothing wrong with me, I had 12 different prescriptions prescribed for my illness and was finally diagnosed with Fibromyalgia and Chronic Fatigue Syndrome.  Basically – if you read the symptoms comparing the two, they have similar symptoms such as severe fatigue, sleep problems, loss of memory, unexplained muscle pain, headaches and unrefreshed sleep.   Fybromyalgia also has symptoms such as irritable bowel syndrome, ringing ears, dry eyes and mouth, anxiety and depression.

Remember, this was ten years ago, Lyrica and Cymbalta weren’t available yet.  I was prescribed several pain medications, steroids, sleep enhancers, anti-depressants, and others I don’t even remember.  Even though each doctor knew each medication I as on, (you know how you have to list every medication you take before you see a doctor?) they continued to pile on another medication.  There was a point in time when I was actually taking each of those medications and I was literally a walking zombie.  When I was lucid – I was still in pain so the doctors weren’t prescribing anything that was actually helping me, the medications were only masking the pain.  I think it was then, I decided to take the matter into my own hands.

Just because you can't see why something hurts, doesn't mean it isn't a real illness

Just because you can’t see why something hurts, doesn’t mean it isn’t a real illness

I weened myself off almost every medication.  I can say now, I am only taking two prescriptions.  One for my migraines and one to help me sleep.  I manage my illness through nutrition and exercise.  I also take nutritional supplements that I swear by, but won’t mention because I’m not trying to sell or promote.  Initially, it was said there was no known cause for Fybromyalgia and Chronic Fatigue Syndrome, but some studies show there’s a bacteria or the Th1 Spectrum Disorder that is the cause for a number of chronic immune diseases.  I’m not a scientist, so I can’t put any merit in these studies.  All I know is now that I work in a less stressful environment, I eat better, take nutritional supplements, get sunshine and a little exercise now and then – I am far better than I was.  I’m still not to the point where I can work out 3 hours straight like I used to when I taught  high-impact aerobics, in fact, if I overexert myself, I pay for it the next day and usually have to spend the day in bed, but I am by far in much better health than I was.  I am in less pain – it’s much more manageable.  So, if you suffer from Fybromyalgia or CFS – there’s hope for you too.

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  1. Completely Understand… Yup I do… I know you know that I do… Blessings and Kudos

  2. Lori DePolis says:

    Knikkolette,
    Thanks for using my symbol for fibromyalgia. It’s called the hope-a-gram. I created this symbol to raise awareness and provide support and hope for those suffering. For those who like the symbol, you can check out my website at thefibrostop.com
    The site has been down for a few years, so need to update everything and bring it current.
    I have fibro 19years now and have gone through a similar experience such as your own.
    This was when people couldn’t pronounce “fibromyalgia” or knew what it meant.
    Never give up Hope. Gentle Hugs, Lori

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