Friday, May 11, 2012

My Fibromyalgia Journey

     In recognition of Fibromyalgia Awareness Day (tomorrow), I want to share with you my fibromyalgia story. It's on the long side, but my journey has been a long and arduous one, so I think that's rather fitting.

     I started noticing there was something wrong with me the spring of my senior year of high school; I was 17.  The funny thing about having something wrong with your body is that for the most part, you think it’s normal.  For instance, I’m pretty sure that my knees have always hurt when I run, even back in elementary school.  I thought that’s why people didn’t like to run or exercise, and that was the pain they referred to with the phrase, “no pain, no gain”.  In my senior year, I took a pilates class at the community college, and found myself in pain with certain positions that others seemed able to do without difficulty.  I had noticed for a long while that it was weird that I could crack my back, hips, shoulders, fingers, wrists, ankles…  I brought it up to my primary doctor, who ran some blood tests and found nothing unusual.  She recommended I see an internal medicine specialist. 

     High school graduation came upon me quickly, and I didn’t see the next doctor as my life moved on and I started college.  In my freshman year, I went to see a chiropractor.  I felt better after adjustments and the wonderful experience of a heating pad and massage table combined, but the relief didn’t last long.  My pain had gotten bad enough I was taking ibuprofen (Advil) every four hours, all day, every day.  My chiropractor recommended I get custom orthotics (shoe insoles), and I found them to be very helpful, acting as shock absorbers and correcting a mild congenital misalignment.  I continued to see the chiropractor and later, the massage therapist, for as many visits as my insurance would allow.  I thought that, while the visits relieved some pain, I still had no answer for what was causing these issues.      

      So, in my sophomore year, I saw the internal medicine specialist.  She took x-rays of my joints to check for inflammation and did another blood test to rule out rheumatoid arthritis and lupus, finding nothing.  She told me to see a rheumatologist.  The first time the rheumatologist saw me, he said, “I know what you have.”  He told me I had benign hypermobility syndrome, which made all my ligaments too lax to do their job properly, leading to all the joint popping.  I was thrilled to have some kind of answer, but not satisfied, because didn’t “benign” mean I shouldn’t be having so much pain?  After some research, I agreed with the diagnosis, but didn’t think that was all there was to it. 

     Over the course of that year, I saw a neurologist to check out my balance and proprioception [the awareness your body has of itself in space – mine sucks] issues, and he couldn’t determine anything neurologically wrong with me.  Then, finally, a breakthrough!

     In the fall of my junior year, I saw a pain management specialist, who listened to my story and poked at different parts of me (tender points), and told me, “I think you have fibromyalgia”.  He gave me some samples of Lyrica to try, and I skeptically took them home.   See, I had tried various methods of pain management, to no avail.  I had ruled out Tylenol, Aleve, Celebrex and another more unusual drug, (both meant for osteoarthritis) and decided to stick to my Advil.  I had also tried Flexeril and Robaxin (muscle relaxers) to help my muscles relax when I slept.  Being in the middle of my first semester of nursing school and the start of a new relationship, I took awhile to research what the heck ‘fibromyalgia’ was and whether or not I thought it fit.  When I did, I felt like I was reading about my life.  Things jumped out at me, like “pain with excessive activity, and pain from lack of activity” and commonly related sleeping problems, balance issues, forgetfulness, and fatigue.  I agreed with my doctor that I had fibromyalgia.  As an aside, I do probably also have benign hypermobility syndrome, but that only describes my unusual “double-jointedness”.

     The weekend I started taking Lyrica, my life changed.  It started working immediately (with a little dizziness and a very fun episode of euphoria the first day) and I went from taking a total of six or eight pills a day to just two.  Lyrica worked better than ibuprofen, dealing with the pain at a deeper level, not just taking the edge off.  I was ecstatic to have a medicine that really worked.  I was also very glad to no longer take a medicine that was slowly damaging my stomach and intestines; I had already visited the ER once with severe stomach pain (gastritis) because of ibuprofen.

   The diagnosis itself was less exciting, and more depressing.  I had known there was something wrong with me, and that it probably wouldn’t just go away, but once diagnosed, I hit me how permanent it was.  Don’t get me wrong, I was happy to have an answer, to have a name for the condition that had felt as if it was all in my head, and to suddenly have access to information and online communities of people who dealt with the daily pain, fatigue, and ‘fibro fog’ just like me.  Yet, I struggled, realizing I had truly lost my dream for a “normal” life.  I grieved for the things I wouldn’t be able to do, and those that would be more difficult.  One example: I have always loved the idea of becoming a mom, including the whole pregnancy process.  With fibromyalgia, I know that pregnancy will likely be much harder on me than I ever pictured; if nothing else, I can’t take Lyrica while pregnant.  It felt to me as if fibromyalgia had ‘ruined’ parts of my future, and continued to screw up my present.  I started counseling through my school, partly to deal with this whole process. 

     With counseling and the support of my family, excellent friends, and my incredibly understanding then-boyfriend Andrew, I made progress.  I was encouraged when I found an online community of fellow fibro sufferers, and when I visited a local support group.  I still deal with some of the grieving process today, being frustrated when something is harder because of fibromyalgia, or feeling angry that I have to deal with pain all the time, and more frequently, wishing I could have a day off from my symptoms.  These feelings will probably always be around in some form, but they are less frequent now than several years ago, and will likely continue that way. 

     As far as my physical health, I learned before I knew I had fibromyalgia that I could feel better with more sleep and a consistent sleep schedule, regular, low impact exercise, eating a balanced and nutritious diet, and reducing my stress level.  The difficulty in college was actually doing any of those things.  Nursing school certainly didn’t help with the sleeping or the stress.  Since I graduated last May, I’ve tried to do better with all of them.  Before I moved to Mississippi and started working here, I had to deal with the stress of working three part-time jobs, applying for nursing jobs, and planning a wedding and cross-country move.   These days, I’m doing much better.  I protect my sleep more vigilantly now that I have to do 12-hour shifts, sometimes five days in a row, and I’m trying to consistently do pilates or swim.  My stress level can be higher at work, but the rest of the time it’s far lower than it was three months ago.

     One of the most frustrating parts of this journey with fibromyalgia has been dealing with my medical insurance.  I have been and still am covered through my dad’s work, which means I have no say in which insurance I have.  For the last year, however, I’ve been with Kaiser Permanente.  Even before I was with Kaiser, it was frustrating to deal with everything in the medical field – I visited ten doctors in about eight years, explaining my situation countless times, and getting a wide variety of responses.  One of the doctors I’ve seen through Kaiser, upon hearing of my diagnosis, told me with a skeptical look, “but you’re so young!”, because most people who have fibromyalgia are typically women in their 40’s.  I could deal well enough with doctors who don’t believe me, though; I really don’t care, because I know I have fibromyalgia.  What’s worse is that Kaiser has refused to pay for Lyrica because it’s not part of their formulary of drugs (Read: because it’s expensive, and they’d rather put you on something cheaper, regardless of how well it works).  So, for over a year now, I have struggled to pay for my medicine because it costs me $180 for a 30-day supply. Later this month, I will be switching as soon as I can to the insurance offered through my new job, which covers Lyrica to some extent.

    So that’s how I found out what was wrong with me, and what I’m doing about it now.  What hasn’t been included in this story so far is the positive things that have come from fibromyalgia.  It’s hard for some to understand why I would have any good things to list, but fibromyalgia, like any challenge in life, has come with its own lessons.  I have grown in my faith in God and my reliance on Him for strength, endurance, and patience.  I have had to learn to trust in His goodness and plan for my life, and that has been a wonderful thing.  I have become more understanding of my patients who are in pain, and who deal with chronic illness, and that has made me a better nurse.  I have seen and have become more appreciative of how incredible my friends are, and have been blessed to have found a man who knows better than anyone how to help and support me in my pain.  I have learned more about what is important in life, and have had to rearrange my priorities.  Through fibromyalgia, I have become a stronger person, and my character has been shaped for the better.  As crazy as it may sound, I have said before that, although I would like a day off from fibromyalgia at times, I would not ask God to take this away from me until I have learned all I can from it.  I know that I would not be who I am today if I had not gone through this, and I believe that I can become still better.

1 comment:

  1. Interesting similarities to my own experience. I'm hypermobile too, and Lyrica is the only med that has helped significantly with my fibromyalgia. (Well, low-dose Amitriptylene had helped a bit, but with drowsiness side effects. Combining it with low-dose Effexor helped, but with higher cost.) Yeah, getting the right diagnosis sure does take a long time! It took me about 8 years.
    -Jon Coombs