Monday, April 9, 2012

About My Fibromyalgia

I was diagnosed in 2001. I simply woke up one morning feeling sore all over and as the next few days came I was hurting from head to toe and feeling like my muscles were becoming stiff. I really thought I was having a reaction to something but within the next few days I could barely walk with pain and horrible stiffness. I knew I needed to see the doctor.

I still remember the long walk down the hall at the clinic. My doctor's office was at the very end of the very long hallway and I could hardly pick my legs up to walk. I shuffled and it was painful all the way down. The touch from the nurse taking my blood pressure hurt. Stepping up to sit on the examining table hurt. 

I remember being asked if I had heard of Fibromyalgia and I had actually heard of it because I had read an article about it just a few months prior. That is the diagnosis that was made and the name given to this sudden onset of pain I was experiencing. I was told to research it, read about it, and look for a support group too. The doctor explained heat, massage, pain medication at times, and knowledge, was about all there was at the time. He said there was no given cure for this, only managing the pain. He also explained that in his opinion, Fibromyalgia and Chronic Fatigue most of the time go together and I was one of the persons who just happened to have symptoms of both.

When I first starting reading about the syndrome I found many articles that talked about recovering from CFIDs and sometimes Fibromyalgia. And other articles mentioned getting better or improving after several years. Of course I have discovered since that whoever wrote those articles did not really know about FM or CFIDs!

From my time of diagnosis till present I have been on and off numerous medications for arthritis, for pain, for sleep, for depression, and inflammation.
My list of symptoms in the beginning was short and has since grown by leaps and bounds. My "syndrome" has progressed over the past 11 years. Little by little FM/CFIDs has taken over every little piece of my life. After that day at the clinic I remember months later a little relief from the extreme pain I was in, but only briefly. The flare came often and soon they never let up. I don't have flares anymore. Every day, every week, all year long is one long flare!

My symptoms are to name a few: muscle pain head to toe, more so in legs, hips, back, arms. Joint pain, especially in knees and hands and hips. Migraines, which usually come3-6 times a month. Sleep Apnea, insomnia, restless leg syndrome, thyroid problems, dry eyes, dry mouth, muscle spasms, achilles tendinitis, chronic sore throat, low grade fevers, heart rhythm problems, tachycardia, bladder infections, FATIGUE FATIGUE FATIGUE is my biggest symptom, irritable bowel syndrome, knots in muscles all over body, brain fog........

After my initial diagnosis I continued to work, shop, clean house, socialize, take care of my three children, and light exercise. I would have periods where I couldn't do all the above and would rest and could get back up and do again. As time went on my activities became harder. I cut back on socializing, and then cleaning and cooking. I skipped school functions and church functions and my job seemed harder and harder. Some days felt like they would never end. The weekends were not long enough to recover. I am blessed to have a wonderful husband who believes FM/CFIDs is real and understands. He kicked in and took over so much and allowed me to rest. Soon rest wasn't enough. I stayed on the couch when I wasn't at work. I withdrew from everything except work because financially I had to!

10 years later and many doctors later and medications later, circumstances in life led my family in a different direction and I was able to quit my job in December of last year. After 6 months without a job my husband was offered a job in another city and we moved after living in our home town for almost 30 years. I knew it would be challenging but I was thrilled to know I could quit work and try to take better care of myself for the first time since I was diagnosed.

So where am I today with this FM and it's long list of symptoms? I'm still on the couch quite a bit. I don't shop, rarely cook or clean, never socialize, have fallen so far from Church going. I am in pain everyday, all day! Stiffness and spasms are relentless. Joint pain is horrible. Still migraines. Sensitive to medications and struggling to find something for the pain and for the sleep. On occasion will try to go to town or grocery store with husband only to suffer so afterwards. Going to doctors for new symptoms that I can't seem to manage from time to time. The internet is my friend as I have found the support groups on it to be so helpful and comforting as we all know unless you have FM it is impossible to understand. So like many others I am jumping on the bandwagon of blogs to tell my story with the hopes it may be of help to another unfortunate person with FM, or simply helpful to me to write it all down. I try to be positive but there are days I just hate FM and what it has done to my life. I love meeting others who share similar stories of chronic illness and I love reading inspirational blogs and stories as well. And I will never grow tired of reading the latest news on FM/CFIDs and praying that I will be "better" someday!

1 comment:

  1. Hi Karen,
    I had to laugh I just read your post on where are you at now... I only laughed because it sounded like you were talking about ME...
    I just found your blog. I only read your first page and I UNDERSTAND. I had Fibromyalgia diagnosed at age 20 I am now 44.
    Positivity is big.
    I can say honestly after 24 years of enduring Fibromyalgia it is a constant roller-coaster ride.