My fibromyalgia history

Since many of the comments I have received have been offering “cures” for fibromyalgia or wondered how long I’ve had it, I thought a personal time-line of fibro along with insights gained along the way and a summary of my beliefs about it might be a good thing to add.  Here we go . . .

Birth in 1952, then:

         Age          Events, discoveries, and other interesting thoughts

• 11            Puberty
• 12            Father died at age 36 from blood clot; he had a history of unexplained severe headaches and pain, was sent to Ariz to see if climate change would help (it didn’t), some doctors thought “it was all in his head” – duh!;  severe emotional distress on my part when he died with little support
• 13            Began to have severe pain in legs periodically – pain that felt like it was in the core of the leg, not in the muscles; the pain did not respond well to aspirin; the pain level would be what I now call level 8; frequent headaches also; doctors can’t figure it out – maybe it’s “in my head”, maybe it’s a manifestation of me trying to be like my father because I miss him so much
• 18            While working at a Girl Scout camp for the summer, contracted mono and strep throat – headaches that followed were level 10 – not cured until November
• 18 – 21     Overall pain and aching during college years, problems with insomnia junior and senior year, fogginess developing off & on – not helpful while student teaching
• 21 – 24     Taught in high school; headaches all the time, upper back and leg pain, on my feet a lot of the time, always tired, doctors blame nutrition, vitamins, activities, me – can’t find any reason for pain
• 24 – 25     Graduate school; driving an hour each way to get the the University;  frequent headaches, debilitating fatigue, micro-naps apparently beginning because I notice I’m “losing time” while driving down the highway, mental focus and fogginess/confusion increasing; dropped out of grad school after a year for several reasons, not least among them that I can’t seem to find the energy to do what I need to do for it.
• 25 – 27      Worked in retails stores – cashier, customer service, cash office manager;  pain levels continued to vary but energy seemed to rebound a little bit; got pregnant with first child at 26:  felt great during pregnancy – no morning sickness, increased energy, reduced pain; gained 40 lbs – craved potato chips with orange juice;  lost all but 10 lbs after delivering a 7 lb 11 oz baby girl at age 27 – pain levels stayed lower following birth – I wonder if breastfeeding hormones played any role in that?
• 28 – 30      Not working outside the home; 2nd pregnancy & miscarriage in first trimester;  3rd pregnancy:  felt great again; reduced pain and good energy; I remember how good I felt during the first full term pregnancy; gained 45 lbs – borderline gestational diabetes – lost all but 10 lbs after delivering a 9 lb 10 oz baby boy
• 30 – 34      Stay at home mom; some headaches and pain but manageable; begin to find that some activities (vacuuming, for example) cause pain flare ups and muscle stiffness and reaction not proportionate to degree of activity
• 34              Divorce; now single parent with children aged 4 & 7; working full time in health clinic – on my feet much of the time; running to work in daytime and teach childbirth classes at night; fatigue shot up but I explained that away by my new schedule;  pain levels increased – ascribed it to new activities; stress increased due to financial issues -not receiving allotted child support and relatively low wage job; got a new primary care physician after 17 years with the last one – he’s going into management at an HMO
• 35               Read an article about pain and fatigue in the magazine Ladies Home Journal – an inset box described a condition called fibromyalgia -EUREKA – LIGHT BULB MOMENT – WHAT EVER YOU CALL IT, THIS IS IT – I FOUND IT; checked the 22 tender points it mentioned in the article – had 20 of them; tore out the article and took it to my doctor – “Sure,” he said, “you probably do have this.” Let’s run some more tests to finally rule everything else out.  Great.
• 36 – 42:      Tests reveal no other health problems.  Went to the Pain Control Center at the hospital for trigger point injections – they work, but are a temporary fix and don’t help as much as I’d like – I’d need to be able to get them whenever I needed to if they were to be are real help – preset appointments don’t meld with a spontaneous condition like fibromyalgia; tried a “TENS” unit – electrical stimulation of certain muscles – not much help; tried muscle relaxant medication – helps but makes fibro fog even denser; tried a tricyclic antidepressant for bedtime to improve sleep – it didn’t, but it did make getting up in the morning worse;  tried the stress reduction program at the hospital – didn’t learn much that I didn’t already know from childbirth education training and spiritual workshops; I’ve found that mind over matter only goes so far for me;  PMS/PMDD symptoms worsening; pain seems related to menstrual cycle somehow; since I am a scientist at heart, on my own, started tracking certain items on a daily basis on a calendar:  pain level, fog level, menstrual cycle, headache, body temperature;  eventually thought I saw patterns and decided to make a graph of the various items to see if there were any correlations – had almost 3 years of data;  graphs enabled me to see pain was definitely related to menstrual cycle – showed it to my GYN, who put me back on the birth control pill to even out my hormones better; that helped some; my daughter hit puberty and I think she has fibromyalgia – all of a sudden lots of pain issues and most of the 22 tender points.  Is this thing genetic?  At least we’ve progressed – no one is telling her it’s “all in her head”
• 43            Got a new primary care physician closer to home; he seemed well versed in fibromyalgia; new doctor tried to get me to take Prozac for a year – I refused because I wasn’t depressed and had “read stories” about it – I finally agreed to try it:  1st dose reduced pain by 50% & wore off after 12 hours, spoke to the doctor, who advised taking 2 a day, 12 hours apart – overall pain level stayed where it still is 11 years later (excluding flare-ups);  personal research revealed this had something to do with seratonin levels in the body and pain and seratonin are linked somehow;  hallelujah; still have fatigue to fight; having trouble staying awake when driving long distances (more than 5 miles, esp on the highway) – have heard the rumble strip a few times and don’t like it
• 44            Remarried, to a man who takes care of me; one morning he asked, “Did you know you stop breathing when you sleep?”  No . . . I didn’t; after more doctors’ appointments and a sleep study, diagnosed with sleep apnea and prescribed a CPAP machine to keep me breathing at night;  over time, this seemed to help reduce flare-ups a bit; realized when I have flare-ups, I tend to overeat carbohydrates – since carbs tend to increase seratonin, which helps decrease pain, I see this as an attempt to self-medicate – and it isn’t helping my weight issues
• 45 – 54      Discovered Thermacare heat wraps – heaven!  Heat that lasts for 8 hours or more but isn’t attached to an electrical cord, so you can move around and not have to stay in one position;  sometimes these wraps can cut off a flare-up;  disabled from work by my doctor – the stress of trying to keep up to someone else’s schedule and fibromyalgia don’t work together; during the disability determination process, had to see rehab specialists, a psychiatrist, a fibro specialist of some reknown – also had to come to terms within myself with the concepts of limits and accepting myself with those limits; in other words, had to acknowledge I was disabled from certain things due to this condition; acknowledging and working within the limits had led to a far less painful existence – balance & moderation is a key in all of life, esp life with fibro;  learned to say NO even when I wanted to say YES – no, I can’t work at the church rummage sale really conflicts with what I want to do but I’ve learned that one wrong yes can steal a week of my life with increased pain and fatigue.
• 55      This birthday will be here in a couple of months – and I’ll be enjoying it far more than I did 35 or 45.   
• 55 yrs 8 mos     Decided w/GYN to wean off hormone replacement therapy;  tapered off in Aug, no estradiol in Sep – worst decision I’ve ever made!  Fibromyalgia flared up severely; fatigue to the point of inertia; mood swings leaning more & more to depression; fibro fog; skin totally dried out & breaking out; pain like I haven’t had in years but unable to think of what to do or what is causing the changes.  Husband finally called GYN.  Back on HRT in Oct 1; feeling semi-human by Oct 7; back to “normal” semi-controlled fibromyalgia by end of Oct.  I will take estrogen until the day I die because a short, enjoyable life I can recall is better than a long, pain filled life spent in a fog.  I am more convinced than ever that hormones are the key to fibromyalgia!!

So, after more than 43 years with this condition, here is what I believe about it:

• I believe there is definitely a genetic component to it
• I believe it is somehow linked to hormones; this would explain why I felt fine during pregnancy, why symptoms are related to the menstrual cycle, and why fewer men than women have the condition; it would also explain why stress seems to exacerbate the condition – the concept of “good hormones and bad hormones”
• I believe sleep disorders play a big role in the severity of fibromyalgia
• I believe seratonin plays a significant role in the condition
• I believe that the onset of fibromyalgia symptoms is caused by: a hormonal “crisis”, whether it be puberty, prenancy, menopause, severe emotional trauma or some other issue
• I believe that until someone discovers the root cause of the condition, there will not be a true “cure” although we will continue to find better ways to treat the symptoms

My beliefs are based on my personal experiences and what I have read.  Maybe I’ll be proved wrong some day.  We’ll see.