What Fibromyalgia Means To Me

So I have been mulling over the question in my mind….”What does Fibromyalgia mean to me?” 

After much thought, I came up with many answers. Not surprising considering, just how many symptoms I have. So often, when I tell someone that I have Fibromyalgia, they look at me with a blank stare. Sometimes they’ll say…”You know I’ve heard of that…” I guess that is at least a start. 

For me and the long, winding, and very painful journey I have had…Fibromyalgia has may faces.  Just like lupus or any other chronic illness, it can mean different things to different people.  What I will write here, is what I have experienced first hand. 

I believe that many of my symptoms started in my early childhood. I would have terrible headaches. I wouldn’t feel rested after waking from a nights rest. This worried my folks, and they took me for a sleep test, in regards to the headaches. The results as far as I can remember were not conclusive. 

I really thought no more of it, until after the birth of my first child. When fatigue set in. It was not normal fatigue, but I battled through it and life became somewhat normal within a year or so. 

And so it continued, until the birth of my third child. I began to feel extremely fatigued. The kind of tired that is in your bones. I was diagnosed with tachycardia and told to be extremely cautious of exercising alone or roller coasters and the like. 

 I had an isolated ischemic attack, which was thought to be a possible stroke, or mini stroke. I had several MRI’s and some white spots showed up on my brain. My speech was slurred for several weeks, I suffered from foot drop and severe muscle weakness on one side.  My neurologist eventually told me, that I would have to wait and see if another attack occurred.  He mentioned the possibility of MS.  Eventually my foot drop faded after about a month or so. And my speech returned to normal. I was in my late 20’s.

And so I continued, still very much tired, and troubled by what I had experienced.  But glad that I was able to walk normally again.  I did not see much in the way of any drastic changes until after the birth of my fourth child. I again experienced bone deep fatigue and weight gain, that was difficult to lose. I began practicing yoga in earnest and doing strength training. This helped somewhat. 

Then I went on a beach trip, was staying in a room in a high rise hotel. I came down with some sort of flu/virus that was going around. I ended up with a very bad case of vertigo. I had experienced it before, but this was totally worse.  It lasted for a month or more. I was given medicine to keep it under control. 

I should also mention that at this time, I was having some breathing troubles. It felt like a big vice grip was squeezing me around my diaphragm. Like a big rubber band just tightened around my chest. I couldn’t get a good deep breath. It was painful. (Now in hind sight, I realize I was experiencing the terrors of chostochondritis.) At the time, I had no idea what it was. It was frightening. It felt akin to a heart attack. 

Time marched on. I had no relief for all of my varied symptoms of pain, aches, muscle spasms, chest tightness, foot drop, etc.  Foot drop appeared here and there at random, and I just had to tolerate it until it went away. The heat began to be a bother. Since we live in the balmy south, the humidity is terrible during our summers here.  

We moved into a new home. It had hardwood floors. For the first month we lived here, my feet were in constant pain. I felt like I could hardly walk some days. Still, I just chalked it up to not being used to hardwood floors. Silly me.  It was like I was walking on knives. I gingerly hobbled around, and eventually the pain lessened enough, so that I could bear it. 
I took a lot of Tylenol.  

I am a painter. I paint miniature paintings of Pembroke Welsh Corgi’s.  I began to have terrible pains in my arms and hands. I was diagnosed with carpal tunnel and given cortisone injections. 

 But, I also suffered from heart troubles. I was having very frequent episodes of low blood pressure, followed by extreme heart rhythm patterns. My heart would race and race for hours on end. After which I was thoroughly exhausted.  Then sometimes, it would feel as if it were barely beating at all. I felt dizzy and weak. I began to get brain fog. Was unable to concentrate. Went to see my cardiologist. He did an EKG on spot…witnessed my heart doing its wild racing. He declared, that I had a very large heart. That it was being overworked. He scheduled an stress echo. He found my pulmonary pressures slightly elevated, and declared I had the early stages of pulmonary hypertension. He told my husband and I, that I would probably not live very long. I was terrified. I sought a second opinion.

I went to Baptist Hospital, made and appointment with the head cardiologist there. He did the echo again. He said there was no enlarged heart, and no reason to believe I had pulmonary hypertension. I was told I have left bundle branch block. Unusual in a young person, I was only in my 30’s.  Just an electrical abnormality of the heart. So I confirmed, what I had hoped was true, I was NOT dying of heart disease. But still no real answers.

By this time, stress had taken its toll on me.  A while later, during a bad winter storm, foot drop reappeared.  Out of the blue. I was so afraid, I tried to ignore it. I felt embarrassed to even show the smallest symptom, I had already been through the mill so to speak. Had been handed so many different diagnosis.  Still no one suggested Fibromyalgia.  I went back to Baptist Hospital.  I had already been to a new neurologist before, he seemed to think that the foot drop was all in my head. But did an MRI. We could not get a copy of my old MRI, so could not compare the spots on my brain. Was told to just go home and deal with it.  He basically laughed me out of his office.  It was humiliating.

 So here I go to Baptist at my husbands insistence. They run all manner of tests. They find I have some spondylosis in my spine. They do a lumbar puncture. Testing for MS and other manner of disease. They have me limp around…observe my foot drop. NO conclusion. They send me home with a walker. And tell me I may never walk normal again. But there is nothing they can do. A possibility of MS…but they just don’t know. Eventually the foot drop fades.

By this time, I am desperate to get my life back. I go to my internal medicine doctor. Because I am suffering from a spinal headache from the lumbar puncture. She gave me an injection, which provided blessed relief.  She also gave me a recommendation to a rheumatologist. The best thing that ever happened to me.

 I go…this very sweet lady, tests me for lupus. She saw my butterfly facial rash, that I always chalked up to heat.  Says it may take years to find if this is indeed what I have. They also test for RA. Both come back negative.  I am relieved. I am told to take 2 tylenol for up to 4 times a day and to come back in 6 months. 

I return in 6 months and she gives me the diagnosis of Fibromyalgia, unless other more serious symptoms appear. I tested positive for every single tender spot. 
I was ashamed to have this stigma, yet so relieved to know that I would be okay. I wasn’t dying. Even though most days, I felt like I was. I took Cymbalta for a less than a week. It made me feel horrible. I quite. I decided by my own choosing to deal with Fibro as naturally as I could. 

Most days, I struggle through. It is hard. I hurt ’round clock. Some days even my fingernails hurt,at least it seems they do. I can barely do a quarter of what I used to do in a normal day. One major outing (like grocery shopping with a two year old) and I am worn out completely. I can’t sleep at night. I take melatonin when I can. Which helps some. I have to sleep on my back with my arms and legs completely straight. If I do not do this, my feet and hands will lose complete feeling, as if they have gone to sleep.  The pain in my hips makes it unbearable to sleep on my sides. Sometimes I wonder if it might be small fiber neuropathy.  I have daily headaches and the brain fog is just unreal. I cannot eat what I used to. Gluten, just throws me for a flip every time. Fibromyalgia has many symptoms, I have had so many of them. You name it, I have probably suffered from it. 

I guess the real hard spot in this, is to find the silver lining. I suppose if there is one, it would be “That which doesn’t kill you, makes you stronger.” I may feel weak in myself. But I have learned to call upon a higher power to make it through the bad days. The good days are few. But when they come, they are magnificent. It is much easier to see the sunshine, when the clouds are rolling away, than if they had never been there before. Counting my blessings and just keeping on…this is my motto.

Take care and be Well. 

2 Responses to What Fibromyalgia Means To Me

  1. Lauren says:

    Oh Valerie, reading your post…. my heart, it just goes out to you. I'm so sorry. I can't even imagine what you have been through. What a strong, amazing, person you are. Know that you are on my mind and that I will be sending "Feel better" and healing thoughts your way. I'm glad that you've finally received some answers with the Fibromyalgia diagnosis and finding a helpful doctor. I feel like Fibromyalgia awareness and understanding is ever so slowly growing. I hope one day that there will be much more compassion and education surrounding it. Thinking of you Valerie and sending a big hug from Michigan!
    xo, Lauren (> ' – ' )>HUG

  2. Valerie says:

    Thank you so much Lauren,for your kindness and care! I felt like this post was a rambling mess…so thank you for reading. I am usually such a very positive person, so I hesitate to share some of these darker experiences. I am fortunate to have the diagnosis of Fibromyalgia, instead of floating around just wondering if I am a crazy lady, like so many others have to do. ;)I think the awareness of this illness is growing and for that I am grateful. For so many years it was a dust bin diagnosis, something a doctor handed you when they didn't know what was wrong. Now, there is validity to it, and for that I am so grateful. Life is good, and I am looking forward to the day that it will be even better. =) Hugs, and I just LOVE your blog. Valerie

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge

%d bloggers like this: