Living with Fibromyalgia

Although this is the longest I have gone without a blog entry, I did not drop off the face of the earth.  For reasons unknown to me, my fibromyalgia (FMS) has flared over the past week and so I spent most of the weekend in bed or on the couch.  I had no desire to be sitting up typing on a computer. 

  I was diagnosed with FMS when I was sixteen.  After being in a minor car accident, I began having problems with relentless muscle pain and I could not get enough sleep.  I have no idea how I managed to keep my grades up because I remember crashing on the couch every day after school.  I would wake up in time for dinner and then do my homework and go to bed.  My poor boyfriend would come over and end up playing Nintendo with my dad while I slept on the couch (thanks for putting up with me, David!). 

My mom stood by me and listened to me. She did not brush off my problems. She took me to the doctor and we were very fortunate that he had a personal history with FMS. It is believed that it takes most people an average of 5 years before they finally get a diagnoses of FMS.  The doctor gave us a couple of articles to read and it was a huge relief to know I was not crazy.

I have been examined by many different doctors since then…unfortunately, they ALL wanted to see for themselves that I had FMS and would use trigger points as an indication.  To meet the diagnostic criteria for FMS, you have to have widespread pain in all four quadrants of the body and 11 of the 18 trigger points have to test positive (I have 16).  To test positive, the patient feels pain with a minor touch (just enough to change the color of the skin).  We aren’t talking minor pain.  We are talking get-the-blank-off-me P.A.I.N.  If one of my trigger points is touched (even just slightly brushed), I will feel the pain at that spot for up to five minutes.

Sustained muscle contractions or repetitive movements today can keep me in bed tomorrow.  Simple things like peeling potatoes, sweeping, or carrying a bag a long distance can cause inflammation in my neck and shoulders which will cause the pain to spread throughout my body.  Holding my head up is a huge chore.  You will notice that I frequently prop my head up with my hand.  At home, I usually sit so that my head is propped up on the couch or chair.

I have had EEGs, EKGs, MRIs, X-rays, and countless blood tests. At 18, I was told by a PA that he thought I had a brain tumor (because of recurrent migraines and dizzy spells which are both symptoms of FMS).  During my pre-employment physical for Glaxo, the Dr. told me I should be on disability, not working full time.  I was 22.  My pregnancies were so problematic and taxing on my body that our midwife told us point blank that we should take measures to ensure that I never get pregnant again. (because I know you’ll read this, thank you Kim for being such an understanding boss when I was pregnant with Hailey!)

I write all of this not to gain your sympathy, but to gain your understanding…not just for me, but for everyone who struggles with a chronic illness.  I have had to endure too many co-workers who believed I was lying when I said I was sick or unable to come to work because it hurt to move – especially since to them, I would have seemed just fine the day before.  Thankfully this has not happened as much since we purchased a Sleep Number Bed (my what a difference a bed can make!).  Encounters with some past co-workers have made me apprehensive about getting too close to people or opening up to people about FMS and how it affects me.  I don’t want to feel the deep hurt of having my pain and fatigue being discounted by someone I trust and feel close to.

I put on a good “face”.  I have gotten so good at putting on a show and smiling through the pain that I have very few people that truly understand me and what it takes for me to get through each day.  The aches and pains?  Think about how your muscles feel when  you have the flu or when you exercise your whole body after months of not working out.  The fatigue?   Imagine going to bed night after night and falling asleep, but waking up feeling like you just closed your eyes.  The mornings? Imagine having to be helped out of bed in the morning because you hurt so much it is difficult to even lift your head.

God truly blessed me with a husband whose mother also has FMS so he understands me like almost no one else can.  God also blessed me with a mother-in-law who not only has done a ton of research on FMS, but who is also a physical therapist and can provide me with therapy when I most need it.  Ed has learned some of her tricks and is able to help as well.

I have taken so, so many drugs and I worry about the long-term effects.  I think I have taken every sleep drug on the market.  My current drug cocktail was working until this last flare up and I hope I don’t have to adjust it.  However, I did just see that a new drug (Lyrica) has been approved by the FDA for treating fibromyalgia.  I can’t wait to talk to my doctor about it and see what she thinks.   Many thanks for those of you that read this entire post.  Thank you for stepping into my world for a few minutes. 

The following is from the Lyrica website. to learn even more, visit one of the FMS sites listed on the right.

What Causes Fibromyalgia?

Fibromyalgia affects 2 to 4 percent of the population, according to the American College of Rheumatology (ACR).  Scientists believe that the condition may be due to injury, emotional distress, or viruses that change the way the brain perceives pain, but the exact cause is unclear. People with rheumatoid arthritis, lupus, and spinal arthritis may be more likely to have the illness.

According to ACR, people with fibromyalgia can have abnormal levels of Substance P in their spinal fluid. This chemical helps transmit and amplify pain signals to and from the brain.

Researchers are looking at the role of Substance P and other neurotransmitters, and studying why people with fibromyalgia have increased sensitivity to pain and whether there is a gene or genes that make a person more likely to have it.

A Million Thanks to my family and friends who provide me with much needed support and encouragement every day! Thank you Trina for caring enough to ask about FMS last week and (without realizing it) helping me to decide to write this very personal post.