My story started many, many years ago... almost 30 to be exact.
One morning, at 15, I woke up and couldn't walk... literally. After many tests and some very scary waits the results came back as... nothing. Nothing?!? Over the next few years debilitating pain would bring me to a crashing halt but it would only happen once in a while with months in between episodes. I learned to live with it... after all, it was nothing right?!
In my 20s during the height of motherhood I continued to live with muscle tightness, weakness and days when I was exhausted beyond tears. On top of it, I suffered from post-partum depression. I often found myself with no help and not knowing how to continue. But I had two young children and had no choice but to get up everyday and get things done.
Fast forward 10 years, I'm now in my 30s, my kids are taking care of themselves for the most part, active in sports. I have gone through being a single, working mom to marrying an amazing man who wants nothing but to take care of me. Which turns out to be a god-send. The day to day pain gets worse. Weekends end up being spent burned out on the couch. I don't remember if I've ever known a good nights sleep. Some days I walk like a 90 year old man... actually, they are more spry than me. I have burning pain up and down my arms and legs, nerves jump constantly.
To date, the doctors still can't find anything. For lack of a diagnosis, they assume arthritis that has not shown itself in blood work yet. They load me with anti-inflammatories and send me on my way. Nothing helps and I'm not going to fill my body with drugs that can cause organ problems further down the road.
I start researching natural remedies for chronic pain. I suspect I have fibromyalgia but I can't get a doctor to listen to me. Some things help, like ginger, but only for a short time. I go through one thing after another. I just keep working, keep pushing through the pain. I suffer, sometimes in silence, sometimes not so quiet.
Then in my 40s there are more bad days than good. The pain becomes excruciating, the exhaustion incapacitating. I'm getting really tired of fighting, really tired of not feeling normal... though I don't know what normal is anymore!!
But I find a doctor who listens to me. She believes me!! She doesn't think I'm crazy or that it is all in my head. She starts by giving me gabapentin... which works. I feel quite well for about 3 months, then the pains start coming back so we up the dosage!! Feeling great again... for about 2 months, so we up the dosage again! It just keeps going and going. I've also started taking an anti-depressant to help with the anxiety and worry that comes with the constant pain and losing my ability to live the way I want to.
In the meantime, she has referred me to a GP that specializes in chronic pain. I visit with this doctor for 3 years. She officially diagnoses me with fibromyalgia. She tries to get my sleep on track and does better than anyone else has in years. She gets my diet adjusted to increase proteins, lessen sugar, discovers I have a lactose intolerance. She teaches me many things for pain management and tries to get my life back on track. She is successful in more ways than not. But I still have many days of awfulness.
Then in early 2013 after an accident, a series of UTIs and two major respiratory infections within 2 months, I develop Chronic Fatigue Syndrome. I find myself falling to sleep at work!! No matter how much I sleep, I'm always exhausted. I feel like I have the flu all the time!! I barely have the energy to do my job, forget doing housework or cooking dinner.
Jay and Brittany jump in and do the best they can by me but they can't make my emotions stable. They can't make me not feel like a failure, feel like I'm not contributing, feel like I'm a disappointment.
Every illness, every accident, every stress causes a set-back!! I end up back at stage one every time.
Now I am on Lyrica. I have got the sleep thing almost under control with natural things but mostly good sleep habits. Still on anti-depressants and still have daily pains of at least 6... on bad days they hang around an 8. I still have days where I can barely be coherent, where I can't do more than stay bundled on the couch praying for the pain to end.
I reach out, I volunteer as a group leader on a support site. I try to offer what little wisdom I have about these illnesses. I advocate for myself and others suffering from chronic illnesses such as fibromyalgia and chronic fatigue. I research, I read, I learn and I hopefully educate.
The truth of the matter is, there is no known cause, so there is no known cure. The treatments are for symptoms only, to give the patient comfort, not to treat the actual disease.
That is why days like today are so very important. If we do not start making people more aware about this disease it will stay in the shadows and the research being done on it will remain almost non-existent. If you consider there are over 35 million people in this country and over 1 million of them are afflicted with this disease, can we really afford to stay invisible??
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