IT’S ALL IN MY HEAD

It is. I know that.  That’s exactly where fibromyalgia starts.  I thought I’d write a little about this today since I’m right in the middle of a pretty bad spell that is going on day four right now and since so many have asked me what exactly fibromyalgia is and what it’s like to live with I thought now was a good time.  Here’s how the doctor explained it to me….

Something touches your skin or a muscle tightens up.  The information telling your brain how much pressure the touch was, or how tight the muscle was, runs up your nerves into the brain.  The brain then goes to send a signal down to the spot on your body that was touched or tightened up, telling it how much pressure was actually there.  Was it pain or just simply pressure?  Was it a muscle tightening in normal movement, or have your used that muscle to complete exhaustion?

Well with fibromyalgia the process that sends the signal back down to the specific point on your body doesn’t work right.  Sometimes it tells your body that a slight tough was actually a stabbing pain or that regular muscle movement is the same as running a marathon.  Today for instance, in the midst of this spell at its worst, I went to simply scratch an itch on my arm and it felt like I had just run razor blades down the length of my arm.  It can drive you nuts, I mean, I know I didn’t just run razor blades over my skin so I try to tell myself that amount of pain isn’t there, but the nerves are telling me it was.  Frustrating to say the least!

Here’s a list of symptoms associated with fibromyalgia.

Widespread Pain  –  Morning Stiffness  –  Fatigue  –  Vision Problems  –  Nausea

Sleep Disorders  –  Urinary & Pelvic Problems  –  Weight Gain  –  Dizziness

Chronic Headaches  –  Cold Symptoms  –  Temperomandibular Joint Dysfunction

Multiple Chemical Sensitivity  –  Fibro Fog  –  Skin Complaints  –  Chest Symptoms

Anxiety  –  Depression  –  Dysmenorrhea  –  Myofascial Pain

Muscle Twitches and Weakness  –  Memory Loss  –  Trouble Breathing

All symptoms can be aggravated by weather changes or hormonal changes.

I’ve experienced most of these symptoms at one time or another, but some rear their ugly head more than others.

A main problem for me is how it messes with my stress levels.  When a person feels stress of some kind it activates your “fight or flight” response.  Adrenalin and other chemicals begin coursing through your body and have it on high alert.  In fibro patients this “high alert” mode is almost always on.  My kids and husband experience the effects of this first hand when we are in the car.  Someone can change lanes a half mile ahead of us and my right leg will slam on the imaginary break on the passenger side of the car.  Pretty much, your body is constantly on alert as if you are under some sort of danger.  Muscles stay tight like they are bracing themselves for an attack.  For me, this has sometimes resulted in panic attacks as well.

What else might you find interesting about this disorder?  How about the fact that I wake up stiff like I’m a 95 year old woman?  Or the fact that I end up just as stiff around 9 pm each night?  Muscle stiffness is a very dominate symptom.  When I wake up in the morning my ankles and back are so stiff they almost don’t bend, I usually start feeling a little looser after a hot shower.

Hormonal changes throw this whole mix into massive overdrive.  It doesn’t happen every month, but on occasion I have spent a whole day in bed, wrapped like a burrito, in my heating blanket.  Stabbing pain, or pain that resembles getting punched, courses through my body and jumps from one place to another.

Fibro fog may not sound like a horrible thing but it can leave you feeling like your trapped and unable to function.  At its worst it can show up in a conversation where you end up looking at the person and asking them to repeat what they just said because you can’t follow the thought trail.  Research has shown that sufferers annually lose more than three times as much “gray matter” brain tissue than healthy individuals in the same age bracket.  Some of that loss occurs in areas of the brain that are involved in memory and concentration.   Being overstimulated makes things far worse; like fluorescent lights, a lot of background noise or loud music. If I haven’t gotten a good night’s sleep or I’m in a lot of pain; all of these things mean I can have a hard time focusing on the things that are important.  One way I’ve come to handle this is a daily check-off list I have created using an app on my iphone.  When I feel overwhelmed and can’t get my thoughts going back in order as far as what I need to accomplish I just check my phone and know what needs done and get back at it.

The pain gets pretty debilitating and can totally wear you out.  After a few years of fibromyalgia I was also diagnosed with chronic fatigue.  To be perfectly honest I think the pain wears on you so much that you just get worn out.

I’m not sure how to totally describe much more to you.  If you came to see me today you wouldn’t see anything to lead you to believe there is a problem as long as we sit here and chat.  I won’t say a thing about it.  I actually don’t like to talk about it or bring it up.  If I ever do complain to someone outside of my husband or kids then you know it’s pretty darn bad that day.  For the most part, on my worst days, you just won’t see me.  I’ll just be inside, stuck in the recliner in the heating blanket.  So I’m not sure why I’m comfortable writing it here on my blog, who knows, maybe it’s cathartic.  However, it is painful today to even walk, to even put my right foot on the ground shoots pain up my leg.  Tomorrow will be different, heck, five minutes from now may be different.  The pain moves.  My right elbow has been sore for almost two weeks.  I can’t lift any sort of weight with it and if I extend it straight the pain is pretty bad.  But I know it will pass.  It will pass right to a different place on my body.

So there you have it.  Maybe a little more whiney in tone than it would have been on a better day but here it is none the less.

I’ll post struggles and progress from time to time as I learn to live with this disorder and let you know of anything I try that helps.  It’s been seven months since I quit my job and I feel like myself again, finally, as far as the stress being a lot less and me being able to relax a little here and there.  Since I quit so much has happened and we moved into a much smaller house so I haven’t been able to focus on my health to the extent I will be now.  We’re finally getting settled and it’s time to attack this problem head on.  See what works and what doesn’t.  I’m very hopeful that this can be controlled and that eventually I’ll be able to pinpoint the triggers that set off these bad days.

I’ll let you in on this little journey and would love to hear from anyone else in the same boat.  What works for you and what doesn’t?

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One thought on “IT’S ALL IN MY HEAD

  1. Kim, I know exactly how you feel. Between my pancreatitis which causes severe abdominal pain…,. My lupus which causes such terrible joint pain….. And the fibromyalgia that just causes constant all over pain…. At any moment I feel that my body could just shut down. The fibromyalgia has made areas of my body absolutely impossible for me to touch…. My shoulders and down between my shoulder blades is the worst…. Just to have the couch brush up against it feels like I’m being beat to a pulp while being stabbed over and over. And from about 8 o’clock at night until around 11 am the next day, my body is as stiff as a board and the pain gets very debilitating, I will definitely be praying for you daily…… I hope you begin to have better days.

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