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 serotonin levels in the body and pain and serotonin 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 serotonin, 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 renown – 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!!
- 56 Several months after my 56th birthday, my doctor suggested switching me from Prozac to Cymbalta to see if it would help with the fatigue and mental sluggishness left after the attempt at stopping HRT. I agreed to try it and it was one of my better decisions. Almost immediately I had better energy and was able to concentrate.
- 57, 58 It has been a good couple of years. I still have flare-ups but they are fewer in number. More important, my brain is working and I have had the energy to get back on the treadmill. Now if I can only lose some of the weight that has accumulated over the years of inactivity.
So, after more than 45 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 serotonin 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, pregnancy, 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.