My Fibromyalgia Story

 Fibromyalgia is still one of those diagnoses that is not highly approved of. Many doctors do not recognize Fibromyalgia as an actual diagnosis. Fibromyalgia is found by a Rheumatologist which can also diagnose you with forms of arthritis. 

Fibromyalgia IS real and I was diagnosed at the age of 13. By the time I hit 13 I had been through more tests and seen more doctors than most people see their entire lives. Most of you know I was a heart patient my entire life but there was always something else. Multiple somethings else come to find out.

I can’t tell you about my diagnoses with out first going back in time. When I was five, I was put into the hospital I was severely dehydrated and I had stopped eating again. Now don’t get me wrong, between the age of 2 being malnourished and five I had become a chubby kid. So, the fact I was not eating became a big deal. I suspect now as an adult looking back, my lack of eating may have been due to the abuse I knew already how to hide. It may also have come from the fact I knew when I was sick, I didn’t get “spankings”.  Even with that knowledge I still remember the pain and the frustration with never feeling good, and always being sick. 

After that hospital stay, I would be seeing a heart doctor regularly that went on to around 7 or 8. While in the hospital for dehydration they did a cat scan and I’m guessing the dye went somewhere other than in my vein and I developed a thick, painful rash on my arm within the day that would not fully go away until I was around 15. This rash hurt when I would wear short sleeves and people would ask me what I had wrong with me. I hated it. It not only hurt but itched and sometimes it would crack open and bleed. Every doctor was so confused. Other than that, I started with in the year of kindergarten having terrible pains in my knees and shoulders. The pain was so bad that any time anyone would touch my shoulders I would whine about the pain.  

This knee pain particularly continued and around age of 8 the pain got worse. My knees hurt so bad I would lay on the floor in a ball crying. This is also around the time my skin began to become very fragile. My body, when in pain, would turn apple red, especially my cheeks and arms. I learned that getting in steaming hot water would help the pain. So, I begin an unhealthy relationship with my bath tub, scalding my skin more than once trying to get the pain to stop. This went on for years – I’d be at school and think that I was going to lose my mind sitting for hours with the pain. I also began to have people point out my dark elbows and red flushed skin. At the age of 13 if you follow my mental health story, at this point it is when I went in to the mental hospital. From there they started trying to figure out what was wrong with me physically. More test, more pain, more doctors, till one day I got an appointment set up for me to see a doctor that specialized in childhood arthritis. They tested me for everything under the book but all they came up with was fibromyalgia. The diagnoses was based on blood work, my dark elbows, knee pain, and more.

Rashy skin
Frequent bruising and spots
This is a stock photo but looks so much like me when I was young and seriously this could be my moms arm! 

Now remember a time when you didn’t even know what this word was in relation to. All but just a handful of doctors were even considering it a diagnosis. My doctor at the time told my mom and I that I was the youngest patient to be diagnosed with Fibromyalgia that he knew of. He said that my intense pain was a few things going on at once. While I had fibromyalgia, I also had growing pains, which both had similar pain involved. Another thing was I was the second in command when it come to taking care of my nana which involved moving her (picking her up, etc.), and my nana was a big lady. So, my body was way over worked making for a lot of pain for me. Which, if I was truthful, had been getting better because I learned how to take medications out of my nana’s medications that she or any one would never miss.  I was sent home with some pillow rolls for my chairs, my pillow at night, I was told to not drink caffeine, stop picking up things over ten pounds, and a list of exercises to do regularly. Honestly, I rarely used the pillows except when I was just in too much pain. I did do the exercises because somehow it made the difference in flexibility and with standing throughout the day. Hot baths and showers still helped and occasionally a soft neck massage. However, massage hurt more than helped. The only thing this diagnosis did for me is it caused my mom to have guilt from not believing me all those years that I was hurting. 

For me, I have to keep moving

Let’s hit up some myths.

  • Fibromyalgia is a fat person disease- FALSE

I personally know several skinny athletic types that have been diagnosed.

  • Nothing helps the pain-FALSE

I have found several things that help the pain. Hot baths and showers, staying active, doing stretches daily, soft massages in your Fibro points, taking Aleve regularly till you are not having a pain crisis,

A bad day with no filter
A good day but I’m still red
  • Fibromyalgia is depression masked -False

In fact, there are numbers of person who have Fibromyalgia and do not report any depression

  • Fibromyalgia is in my head- False

Your friends, possibly a non-believing doctor, and even yourself may have told you it is just in your head but facts are it isn’t. Doctors sometimes have issues with Fibromyalgia diagnosis is because there is no one particular test to give that will diagnose it.

Fibromyalgia is a disease that can cause body pain, aches, brain fog, sensitivity to pain, skin conditions, Constipation, headaches and the list goes on. Now don’t freak if you have one or two of these things it is more if you have five or more of the symptoms that you need to see a specialist.  If you have fibromyalgia, I am sending you soft warm hugs today and every day. XOXO 


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