FibroFacialGal is a 20 year veteran of Fibromyalgia and myofascial pain syndromes. She has seen a lot, and at times knows a little too much about how healthcare ticks. Along the way, a few other issues have cropped up, making it too difficult to continue working for the healthcare system, so she retired early to a life of blissful obscurity. One by one, she is working on sorting out her funky heart, lady bits, arthritis, chronic migraine, plantar fasciitis, etc. You get the picture. There are a few things out of whack, so she ventures into interactions with the healthcare system time and again, convinced that, through persistence and determination, she can tame the lion that is her funky bod. Along the way, she has some thoughts and feelings about what goes on when attempting to sort out a dysregulated body. Her blog is about those misadventures and observations. Be sure to check out her blog for more fun with Fibro, her humor and personality always shine through.
When were you diagnosed?
Thirteen years after all my issues began in my mid 20’s. I believe I have had Fibromyalgia all my life, since my energy issues, constant state of sickness, and body that never seemed to cooperate were constants- but 2 bouts of mononucleosis as a teen did me no favors. My first big flare as an adult came in my mid-20’s, and the rollercoaster ride has raged over 20 years now.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I had seen 9 specialists, 7 physiotherapists, 3 acupuncturists, 2 massage therapists, 2 chiropractors, and 1 naturopath before anyone gave me a diagnosis that made sense. I also heard quite a bit from my colleagues (docs, nurses, allied healthcare professionals), with everyone weighing in with different theories. All of them contradicted each other and did not explain what I had been experiencing.
My diagnoses ranged from: being a malingerer (while holding down a full time job while working on a second degree as a full time student!), bilateral carpal tunnel and ulnar entrapment, thoracic outlet syndrome, myofascial pain syndrome, tendonitis, allergies/food sensitivities, having too large breasts (I kid you not), too much exercise, not enough exercise, and on and on up to the point of a fibromyalgia diagnosis 13 years later.
One of the first physiatrists I saw in year 3 told me that people who have whatever it was I had do not work, and have a difficult time functioning, so I should prepare to quit my job and work on eliminating stress and anything involving using my hands. I was in my mid 20’s at the time, and had just begun working on my career. Quitting wasn’t an option, so I kept trying to find work that would not aggravate my symptoms. I changed jobs like underwear, and along the way developed some radical survival skills.
Were you working at the time?
Yes, I was holding down a full time job and a part time job and also volunteered. I worked as a medical rehab and vocational case worker for a large, powerful corporation dealing with industrially injured adults. I chose that job to better use my interest in health services and counseling background. At the time I was trained, we were all told that anyone with fibromyalgia or anything like chronic fatigue or Reflex Sympathetic Dystrophy were malingerers and that they were making up their “symptoms”. I vowed to never have anyone label me with any of these, because I saw how poorly the medical system and employer treated those labeled as such. This was the only job have been fired from, for being “injured” with something nobody could agree on or understand. I was treated like a leper. Ironic, isn’t it? I learned about the dark side of healthcare from inside, and this education changed everything. This was the last job where I was ever open about my health issues.
What was your family life like (married? kids? etc?)
When my arms first went kaflooey (the major issue at the beginning of all of this), I was single, living alone, just starting to build my career, and saddled with a vast amount of student loan debt. I found myself alone, struggling to dress myself, shower, or even open a can of soup. My hands were a complete mess. I felt panic for a bit, until I made a plan.
There was no family support, and a huge amount of judgment from coworkers and friends. A few years into my journey, and I became estranged from my family to reduce the stress. I vowed to find a way to figure this all out, and started keeping my health stuff to myself for survival. My determination and stubborn nature kept me upright.
Where you able to finish your degree program?
As soon as I left that job, I did another degree to find something more flexible, which I hoped may better meet my physical reality. I was trying to buy more time so I could work longer. The pace of things at that time was insane, and I did myself no favours having to work full-time while studying full-time. But, I had little money, and just had to suck it up. Yes, I completed that degree, and started another advanced one right after which I have never been able to complete.
If I hadn’t done that degree, I would not likely have been able to work my way up in another healthcare organization and save enough to be able to retire in my mid 40’s. I had planned and hoped to be able to work until I was in my 60’s, but my body had other ideas. I am so very thankful to have had my fella to share the load. None of this would have been possible without him.
How did your family initially handle your illness?
Open disbelief and harsh judgment. It was a terrible experience for many years, and broke my heart.
How has your family/ work situation changed since Fibromyalgia entered your life?
I learned to give myself permission to take care of myself, which was very challenging. I am still a mind over matter person, which flies in the face of fibromyalgia’s realities.
People who were hostile, negative, and emotional vampires were let go of. I worked on distancing myself from anyone who wasn’t caring and supportive.
I changed jobs every year or two, and sometimes held down two jobs at a time in order to cope with the physical symptoms, and to work my way up on the ladder because I knew my working life had a very limited lifespan. I saved money like crazy, and planned for a day when I no longer had to keep fighting my body to stay employed. I had a plan, and quietly tried to keep myself upright while struggling. Even so, I worked till I literally dropped, which I don’t recommend to anyone. Giving myself permission to stop working was the hardest thing I have ever done because I got so much satisfaction in a job well done. 2 years post-retirement, and I am still figuring out what makes me happy, but I am thankful everyday that I no longer have to fight my body’s reality.
What do you feel is the most challenging aspect of Fibro?
The complete drain of energy, fluctuating functional levels, and unpredictability of it all. I never knew anyone’s body could be this messed up, but there it is. I still can’t predict what the day will bring, so I have to do what I can when I can, which is something non-fibromites will never understand.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Myofascial pain syndrome, easily develop tendonitis in arms/hands and feet, heart issues, arthritis, sensory overload, allodynia, Raynaud’s syndrome, chronic insomnia, chronic migraine, hormonal issues, cold intolerance, tumor growths, grumpiness, etc. It’s a bit of a list.
I have embraced these issues as part of my overall disregulation. In our home, we joke that if it can be out of whack, then it will for me. Mostly this stuff impacts my fibromyalgia most by increasing my stress because of more interactions with the healthcare system and professionals. I rant on my blog and get my feelings out, process them, and make a plan to keep on going.
What (if anything) have you found/ done that has improved your symptoms?
Being more gentle and accommodating with myself, speaking up when I need something, setting boundaries (please don’t hug me today), and learning to stop apologizing and feeling guilty for my physical reality. Guilt is the worst, and minimizing it makes a world of difference.
I try to work with my body now instead of pushing against it, which has helped more than anything else, enabling the return to joy I had been missing while in decades of hardcore survival mode.
What is the best advice you’ve received regarding Fibromyalgia?
Listen to my body, be compassionate with myself, and learn to pace. Big stuff that keeps me from despair or feeling sorry for myself.
What was the worst advice that you followed?
Keep trying all medications/intervention offered, and don’t question doctors because they know best. This advice almost killed me in my 20’s when this began (a medical procedure/test that went wrong and left me in the cardiac unit), and I will never give up my power again. I am the expert on my own body, and nobody will take this from me.
What is one thing you’ve learned about yourself since your diagnosis?
I can be OK with just being and not continually “accomplishing”. I also learned that I am very intolerant of the healthy who are lazy- my hot button. This takes ongoing work to not compare and judge. I am a work in progress…
What made you decide to start blogging about your illness?
It’s weird, because I am the last person I would have thought would blog. I am intensely private, and have a difficult time sharing my experiences and feelings.
I discovered Overflowing Brain’s blog(Katie), while she was still struggling to complete her degree while experiencing unrelenting headaches. I got enthralled by her honesty, raw emotion, and rants. I wondered if I would feel more connected to others with fibromyalgia if I wrote about what I thought, and in the process have met some amazing Spoonies. I think blogging right after I retired saved my sanity and gave me an outlet for the feelings I could not openly admit to. I learned that I am not alone, and that many of us can find support and inspiration through “blogging it out”.
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