FIBROMYALGIA SUFFERER

I can't escape the pain

For years, I suffered a mystery muscle complaint that made every day a struggle. Finally I got a diagnosis. At first it was hard for me to wrap my mind around what I was told. I was in my 40+ years with my husband, family and a barn full of horses in training to take care of.
I’ve always been a very physical person, having worked on farms all my life. I’d work seven days a week in all kind of weather and do everything from riding horses all day, mucking out stalls, haul hay, shred and plow the fields, take care of all the livestock.
I used to suffer bouts of fatigue and pain. I grew up taught to wipe it off and keep going. I could cope if I slept for 10 hours each night, so I tried to make sure I went to bed early. (That didn’t always happen).
But then, in 2006, I began to have pain all over and fatigue. It began quite gradually – one day I would be OK but the next I’d be exhausted. Everything became an effort. It was like wading through a muddy field – my legs felt as heavy as lead and I’d shuffle rather than walk. Then my knees began to ache. It was tremendously painful, as though there wasn’t enough elasticity in my joints. I’d lie in bed wondering what was happening to me.
Even the simplest things, like driving, became a massive chore as just holding the steering wheel made my arms ache. Then I began to get a sensation as though hot oil was burning through all my veins. It happened every night and stopped me from sleeping. At the same time, every joint in my body was sore. Whichever position I lay in, I felt awful pressure and discomfort. I tried painkillers but they never really took the edge off.
By this time I’d started to go to the doctor quite regularly, which was out of character. Nothing would show up in tests but I kept returning because I needed to find out what was wrong with me. I’d be in tears, telling my GP that I couldn’t carry on. He ran test, but fibromyalgia does not show up in blood test. He diagnosed me with fibromyalgia. That news was hard to take. He started me on pain pills. Which, the pills made me into a zombie. It just was hard for me to make it through a day and be productive.
Eventually I was referred to a neurologist that did even more test. Was told I have a very high tolerance to pain. He referred me to a rheumatologist who diagnosed me with fibromyalgia, rheumatoid arthritis, and closed head injury.
I was so relieved that I actually had a recognized condition and the pain wasn’t all in my head, and now there were lots of treatments I could try. The first was steroids, which made me very sleepy. I was also put on methotrexate tablets, it helped for a time. Then it just didn't help any more. ​

What is Fibromyalgia, Rheumatoid Arthritis (RA), and Closed Head Injury

I should back up and tell you about the diagnoses and what it is:
Fibromyalgia- an incurable condition that causes widespread muscle pain and fatigue. A good website to visit to give you more information on fibromyalgia is the Mayo Clinic When I was first diagnosed I found some very good up to date information here.

​Rheumatoid arthritis (RA) - is a chronic, lifelong condition. It requires ongoing treatment, and living with it can be a daily battle. It causes pain, swelling, stiffness, fatigue, mental stress. Visit the Mayo Clinic for more information.

Closed Head Injury - Any injury you receive to your head that does not go through the skull is a closed head injury. Closed head injuries can range from minor injuries to devastating, life-threatening major injuries. Because the brain is your body's command center, virtually every bodily function can be affected by a closed head injury. Emotional, psychological, and behavioral changes are common, as are alterations in cognition and intelligence. Some people suffer anger issues or impulse control problems after experiencing a closed head injury. Others struggle with fine motor skills, memory, personal relationships, and basic functions such as reading and writing. Find more information at Mayo Clinic. ​

Chronic Illness

Living with the unpredictability of chronic illness is incredibly stressful. You never
know how your going to feel on any given day. You have a tiny bit of control 
of your health through pacing yourself, sleeping right, and eating right, but for
the most part you never know when a flare up is going to hit. This can feel a bit
like riding a roller coaster with your eyes closed. You’re hitting huge highs and
deep lows, but you never know when a flair is coming and things could change
at any moment.   

I tried a series of drugs, such as the anti-inflammatory naproxen, folic acid to stop
the methotrexate making me sick. My mind was willing all the medication to work,
and at first I convinced myself that it was. But eventually I had to admit that the
drugs weren’t helping. Now I have been going through test to get on injections. If 
everything gets approved through our insurance I will be on Humira. Right now
it’s all in the works. Just praying I will be able to give myself shots. I can give our
livestock shots all day long. But, myself…not so sure.  
                          
My rheumatologist is amazing – she has tried so hard to ease my suffering. She
recommended that I take several showers a day to help with the pain. When she
told me this I thought to myself “yeah right”. After trying her advice I was amazed
at how showers do help.

My specialist suggested a strict, three-times-a-day exercise regime of walking,
swimming or cycling. The idea was to build it up slowly, then carry on for the rest
of my life, but when you’re working on a farm and all the livestock depend on you
it’s difficult to fit exercise in.
​
Most people look at me and think there is absolutely nothing wrong, but so many
things are a struggle. When I wake up in the morning, I’m so stiff that even getting
out of bed or getting dressed is difficult. By the time I’ve finished dressing, my arms
are aching so much it’s hard to carry on.

Accepting Help from Others

​One of the most difficult things to deal with of fibromyalgia was accepting help
from others. It’s difficult to swallow the fact that you cannot do it all on your own
with fibromyalgia. The activities and tasks that our bodies were once able to do, now
takes time or assistance. Accepting help does not mean we are no longer independent.
It does not mean we are weak or helpless. It means we understand our bodies’ limits,
and we respect that limit by allowing others to help us.
I have slowed down the chores on a farm now, it may take me several hours to
accomplish my task but I keep working. I have my husband and kids support. Some
days I just want to go back to bed – it’s a horrible feeling. There are days I can feel
the muscles in the back of my legs tense. Still, I try to push through it – you have to
keep fighting.
Another problem with fibromyalgia, as well as the constant dull ache in your head, is
that it makes your thinking very foggy. I’ll forget important things. That can be very
hard to live with.

Track Your Food

​To avoid flares and ease your symptoms, eat the right kinds of foods and stay clear
of the bad foods. Easier said than done, right? It is. The difficult part is finding the
foods that trigger your flares. Each person is different, so finding those foods is
essential. Keeping a food journal can help with finding those trigger foods.

Why You Need a medical Notebook

Many times we have questions and concerns arise when you are not in the doctor’s
office. And if you’re like me, the questions/concerns fly right out of your head and
are forgotten long before your appointment. A medical notebook helps you remember what it is that you wanted to discuss with your physician.

Keeping a Pain Journal

​A pain journal can have multiple uses. It can be a journal that you write at the end
of each day. It can also keep track of the pain and symptoms you are having. Most
importantly, a pain journal will reflect your flares and what triggers those flares. 
The pain journal should not be confused with a medical notebook. 

I hope this post helps you with understanding fibromyalgia and chronic pain.
Please leave comments below about your journey or in you have any questions.

​Blessings,
Stace & Margarita