So you’ve just been diagnosed with the fibro, and you aren’t sure exactly what to make of this. Congrats! It’s designer – very bougie – no two cases exactly alike. That makes you completely unique. You are about to become an expert in, well, you.
Let’s get the tough question out of the road to begin with. Yes, you are going to die. Everybody – except Cher – is going to die, because the soul of Cher inhabits a silicon sex robot…maybe not, but that’s a good working theory, isn’t it? I digress. Cher may die. You and I will die, BUT not from fibromyalgia.
The good news is all those weird ass symptoms that drove you to insanity and then to your doctor are now confirmed as legitimate, so rest easy, you are not going mad. With luck you got a good PCP – primary care practitioner, whether a GP (general practitioner) or a RNP (registered nurse practitioner), who referred you to a specialist for diagnosis. Chances are, the specialist just sent a report and a plan of action to your PCP, who will be monitoring your care. For a while, you may find yourself still having regular visits with your PCP, so if you don’t like them, now is the time to DTMF (ditch the motherfucker), because you need someone you can trust. It is ok if they say, “you know what? I don’t know much about this, but I’m willing to learn.” Most PCP’s have a sentence or two’s worth of knowledge on a myriad of diseases. There are, unfortunately, a few idiots who have not updated their knowledge and believe that the cure for all of women’s issues is a hysterectomy… or if you’re a guy, that you’re just overworked, and should take up golf.
- Rob’s Rule #1 – get a PCP you are comfortable talking with openly, and who is open to learning with you.
Fibro can cause a lot of different symptoms in different people. I wasn’t kidding when I say it was bougie! As you read about it FROM REPUTABLE SOURCES (cough, cough), keep this fact firmly in your mind or you can end up scaring the living shit out of yourself. And for gods’ sake (all of them) stay the fuck away from any website that is simultaneously selling you shit, as they give little bits of info. Those are snake-oil salespeople… they have the cure for what ails every man or beast. If their shit really worked, they and all the televangelists would be adding to their flocks daily by walking through cancer wards, COVID wards and all the rest crying out “be HEALED!” Don’t get me wrong, I’m a spiritual guy, and I do believe in miracles. I just don’t believe in people who perform miracles for money.
Likewise, people’s personal accounts – including the one you are reading right now – are just that, their personal accounts. See the common threads that folks have, and you may get a good inkling of what works and doesn’t work.
What you can’t afford to do is play ostrich and stick your head in the sand, and pretend this isn’t happening. You don’t have to learn everything in a day, but you can’t be ignorant either. Do you have any medical expertise or training? Then by all means, read the heavy-duty research stuff. But don’t take one research study to your doctor and say “SEE? SEE?” because they could pull out a dozen more to refute it. Unless you have studied science, you are not doing research, you are researching, which is different… one is something with scientificky charts and test tubes and mice and stuff, and the other is what you did in high school to writer a good paper. Even though I work in the medical-social sector, my eyes glaze over on numbers as I am mathematically challenged, so even if a paper is intriguing, I ask someone smarter than me about the math. 7 times out of 10, the numbers are wrong, or even made up…. 83% of people know that…
- Rob’s Rule #2 – A.S.K.: Always Seek Knowledge. Learn what you can, so you can understand yourself better. Do it at the level you are comfortable with.
Despite being bougie, there are some common symptoms of fibromyalgia. Deep breath, we’ll look at the symptoms first before discussing what to do about them! (now exhale. Repeat. Keep inhaling and exhaling, and you will prolong your life. If you quit doing one or the other, well, that’s problematic…)
First up, pain. Unexplained pain is THE defining symptom of fibro. It typically feels muscular in nature or in soft tissues. It is widespread. Widespread in medical terms means you feel stuff on both the left and right halves of your body, as well as above and below the beltline. The guidelines used to specify you needed pain in 11 of 18 specific trigger points, including back of head, tops of shoulders, upper chest, hips, knees, and outer elbows (both sides of bodies). You need to learn how to describe pain. Don’t say it hurts: how much does it hurt in relation to other pain you’ve had? Worse than childbirth? That’s bad!!! On a scale, how much does it hurt? What does it feel like? Deep, like a pulled muscle? Achy, like you worked out the day before? Throbbing, like a bad headache? Sharp, like a papercut? Papercuts are the freaking worse, especially when you don’t find them until you are sanitizing your hand. Get to know what is your ‘normal’ because that will tell you when you need to get your ass into your PCP with something more serious… this is why you need a good PCP, so you aren’t dismissed as ‘well, you have fibromyalgia’, when meanwhile it is your evil parasitic twin coming to life and chewing through your insides, and they could have found it if they took an xray or something. (Obviously, I watch a lot of horror movies, but hopefully you get what I am saying…)
Fatigue and/or sleep issues are next. For me personally, my journey started with getting sleep tests, as they thought because I was a fat dude, I probably had sleep apnea, and wasn’t getting a full sleep. (For the record, I’m still chubby, and we’ll cover that later.). Sleep tests – all three of them with different specialists, as I got fed along the specialist chain – showed the same thing: I wasn’t hitting REM, or if I did, wasn’t staying in REM. Specialist 1 and 3 agreed that I was having pain in my sleep, not enough to fully wake me, but enough to ensure I wasn’t getting rest. Specialist 2 decided I was experiencing grief, wanted me to come to his private clinic for hypnosis, and medical marijuana… none of which was covered by OHIP. Specialist 2 worked for Specialist 3. Past tense. We will leave that there, suffice to say I am strong advocate, and know where to push in the medical-social sector.
The last common symptom would be mental health symptoms: depression and/or anxiety, and/or concentration issues. The concentration piece is often referred to as fibro fog. Thankfully, I have experienced life as a blond, so I know when people are realizing I’m a little extra dense on those days.
So here is the kicker with these three: they form a triangle of interconnected problems. Think about a time you may have had a bad sunburn or toothache. You might be able to cope during the day, but you couldn’t get a comfortable sleep. Pain interrupts sleep. Or you were dealing with depression/anxiety, which kept you tired all day but, godsdammit, they kept you awake all night. Now if you don’t sleep all night, you neither have the mindset to deal with your pain or depression, and if you are depressed, your pain may be harder to cope with and then…. Big clunky triangle slowly turning with one sharp ass point up at any given time. Uggh….
In my opinion, the worst is all three of these symptoms are SUBJECTIVE…there’s a joke there, did you get it, huh? Not funny, but it’s there. While aspects can be measured (i.e. are you hitting REM sleep), the effects are subjective in terms of impact on your life. I know lots of young parents running on very little sleep, and functioning beautifully (or faking it). I on the other hand could go to bed for 12 hours, and nap on weekends and still be exhausted. Because they are subjective, you have to be able to advocate the intensity of each symptom, and relate it to the effect in your life.
What you may have to do is tackle one of the Big 3 at a time, usually the one YOU feel is worse. If you try treating all three at once, you may be dealing with med side-effects heightening the other symptoms, and not knowing what is better or worse, and hating your doctor….again, why you want a good PCP to work with.
You may also have other symptoms, and it is important to know what is fibro, and what is not. See, I had to hit 7 specialists in total before getting my official diagnosis, as I finally had a neurologist isolate one particular symptom as not being fibro, but a pinched ulnar nerve. That’s your funny bone…ever hit that? Now imagine putting on a winter coat and having that sensation while your arm was bent. Once we had that symptom isolated, the rest of the diagnosis fell into place for fibro. For the record, the bulk of the doctors I saw were excellent and compassionate. The sleep experts and neurologists agreed that it was likely fibromyalgia, but wouldn’t officially make the diagnosis. The rheumatologist, bless her heart, wrote a beautiful 12-page report, along with different avenues of treatment to pursue, and medication schedules to try; however, she didn’t put a diagnosis down, as she was progressive and didn’t like labels. My PCP sent me back to her, to ask what was wrong with me because he still didn’t know, and she told me some doctors didn’t believe in fibro and others would dismiss future symptoms out of hand as just fibro, so she didn’t want a label. I read her beads on the spot, as she was slightly younger than me, and let her know that without a diagnosis, I had no protection legally for having a disability, and if my condition got to the point that I could not work, I would need to have something down before the insurance companies would cough up, and that it would’ve been easier to discuss this with me as a way of preparing me for future self-advocacy, because if I had a dickhead for a PCP, he would have said nothing was wrong and dismissed the report out of hand. She had her “OMG” moment right there, and apologized profusely. I completely respect her expertise, because she didn’t claim to know it all, and that one interaction will improve things for all her future patients, so was totally worth the stress to me.
Whoops, off on a tangent. Blame the fibro-fog. Oh yeah, she also said she was mystified by the arm pain, but didn’t discount it: she said there was something else going on AS WELL and sent me over to the second neurologist who took a look, as opposed to the first neurologist, who had done nothing.
- Rob’s Rule #3 – know your own body, and be able to describe subjective symptoms properly
- Rob’s Rule #4 – be able to communicate effectively with doctors. They all have to shit in the a.m. too. If they don’t, it’s probably what’s wrong with them.
- Rob’s Rule #4.5 – learn to intelligently self-advocate, or bring along someone who can intelligently self-advocate for you
- Rob’s Rule #5 – learn to take notes, or bring along someone who can take notes for you. Fibro-fog + learning medical jargon = you will forget shit
We are winding this stuff up… pretty easy so far, amiright? Let’s talk prognosis and management.
Fibromyalgia is a chronic condition, meaning it could last a lifetime, or just a long time. It is not degenerative, meaning systems in your body are not going to breakdown. It is not fatal, so it ain’t gonna kill you. But I’m not going to lie: it’s always there. Potentially, you could have flare-ups, where you are trucking along nicely, then WHAM you are down on the couch going which of the gods did I piss off today??? Often, flare-ups are tied to triggers, so doing some journaling of symptoms can be helpful to learn what your triggers are. Stress can be a big one. Other illnesses can worsen your symptoms. Being an ostrich can worsen your symptoms…if you don’t know your triggers, can’t describe your symptoms or advocate for yourself, you will suffer.
How are you going to manage?
If you don’t like medications, diet, exercise and sleep are a great way to start. Start with light exercise, and gradually build up. When I started weight training, I got a trainer, and FatBoy was in the gym lifting one 2lb dumbbell. I can deadlift 110lbs now, and I can do leg presses of 140. I don’t run, but I walk the track and built up to longer periods of time. I still got a gut, but I also got a butt. I’m in the gym for health, not beauty. When I started exercise completely, a friend suggested belly dancing: it’s low impact and less cardio intensive than other forms of dance, plus it was learning something new, and a lot of fun. ‘Aquafit’ type classes, or swimming are also popular, as water buoys most people up… for all the fat, I sink like a stone. Tai chi is good. Low power yoga is good. You don’t have to do HIIT or be in the gym every day. Too much exercise actually will cause pain, which is why some people avoid it, but you do need to move your body. If you gain weight, you will gain pain, as it becomes harder to move. Exercise is good for sleep and mood as well.
Sleep hygiene is important. The bed is for sleep and sex. No watching TV in bed, working in bed, etc. If you are having a ‘bad body day’, and need to lie down, lie down on the couch or get a yoga mat and lie on the floor. Keep on schedule of when you go to bed, and when you get up, and keep to it even on weekends/days off for at least a month or two. Train your mind to understand “time to sleep” when you get into bed.
If you aren’t eating healthy, eat healthier. If you aren’t moving as much, all the extra calories will build quickly, which is how I gained a shitload of weight in short order. But I still eat cake and carbs.
Diet, sleep hygiene, and exercise are options fully under your control, and it is good to get control of this from the beginning. Honest. They are also very much scientifically proven natural remedies, so if people are suggesting natural remedies, go with the ones that are scientifically proven!
- Rob’s Rule #6 – don’t say diet, sleep hygiene and exercise doesn’t work until you have genuinely tried each for a month each. It will have at least some positive impact, though like medications, the effects could differ from person to person.
Speaking of natural remedies, about as natural as I personally go for are multivitamins to supplement cake, and larger doses of vitamin C and D, as lots of Canadians don’t get enough sunshine all year round, and it can help with sleep & mood as well. On very bad body days, I will smoke a bit of the devil’s lettuce…because GODS BLESS CANADA, IT’S LEGAL HERE J However, I do need to function and pot + fibro fog means forget thinking for the day, so I don’t tend to do it regularly. Doctors may be limited as far as medical marijuana, and many hospitals where specialists are located may have non-medical marijuana policies because of doctor insurance arguments. Sigh.
Again, avoid taking any magic cure sold online. There’s the cure for blindness, cancer and evil eye online as well, if you have coin to afford it. Also, ALL-NATURAL doesn’t equal NO SIDE EFFECTS. Hemlock is all-natural. Opium is all-natural. I don’t recommend trying either of those for different reasons.
- Rob’s Rule#7 – just give me your credit cards/money, as it will be as effective as most ‘natural’ remedies available online. Or at least do some investigation of the product and/or seller.
Does that mean I blindly trust any new medication coming to market? Hell, no! But at least there are reported studies and an approval process, unlike natural products, which are sold in Canada under food legislation (that fact makes me shudder that there is less accountability to our food supply… but I digress). Where new medications often go awry is that they are strictly tested on one group i.e. white men of a certain age, and don’t account for effects on PoC or women. Or the sample size is so small that until it is prescribed in larger numbers for a longer period that rare but deadly side-effects are known.
The number one thing I will say about meds is that people take them wrong. This is not “ooh, I got a headache”, take an Advil and 20 minutes later you are feeling better. This is taking a medication consistently every day, in order to maintain a therapeutic dose in your body. If you are told to take a pill three times a day, you need to set it to the waking hours of the day, and take it e.g. 8am, 2pm, 8pm. If it is once a day, take it at the same time every day. Don’t skip doses, and don’t double up. Take as an example, birth control: if you take it once before sex, chances are you will still end up pregnant (yet teen boys have been stealing their sister’s pills and trying to feed them to their girlfriends for years), or if you miss a pill, you can’t double-up the next day. Doesn’t work like that.
When it comes to meds, there isn’t a one-size fits all approach, but as I said before, don’t try to treat all your symptoms at one. For me, I tackled sleep first. I did end up on a sleep medication for some time; I never went past the prescribed dosage; and I eventually was able to wean off it, because exercise + sleep hygiene, say no more. Some people may find their depression or anxiety to be the most problematic, and medication-wise, it can take a while to find the right med to work on that, quite often because it starts at a low dosage to build up from, in order to prevent side-effects, then you have to be on it for a few weeks before you know it is working, and then you have to slowly wean off it before starting all over again. Certain antidepressants have also been used off-label for certain types of pain quite effectively, so this may be the route your PCP suggests as well and why.
Antiseizure medications have worked very well in some people with fibro, and are often used in neuropathic conditions effectively like shingles. There may be side effects before you get to the therapeutic dose. All meds run the risk of side-effect. Your usual brand of off the shelf headache med has side-effects up to and including death, you just never read the product monograph before. Some side effects of meds you take may be temporary, which is why you start at a low dose. Some may continue, but be better than pain, and easier to manage… for example, you may get constipation, but increasing your fibre intake, and exercising a little more will off-set that!
Now here is where I really get on my soap box: do not, do not, do not, DO NOT try any opioid medication until you have tried absolutely every other last avenue, including diet, exercise, and maybe even the magic pills from the interwebs, AND unless you are under the careful eye of a speciality pain clinic. Opioids are overly prescribed in fibro for people who are too lazy to try diet and exercise, and don’t try to work through side-effects of other medications. They are addictive. It was allegedly (because I don’t want to be sued) a lie that certain pain meds were supposed to be able to manage pain 24 hours with only 1 pill every 12 hours. That benefit wears off rapidly, and then we need to deal with you in an addiction clinic as well as a pain clinic. They do have a time and place – terminal conditions or severe degenerative conditions, where muscles, bones or nerves are literally rotting away – however, no PCP should be offering them without a full consultation and assessment by a pain specialist. There is very little data that supports the use of opioids in fibromyalgia.
- Rob’s Rule #8 – understand why you have been prescribed something, the best schedule to take it on, the common side-effects and the benefit vs. side-effect.
Now, studies have shown that HOW you deal with stress will also predict your symptom levels with fibromyalgia. You can try to avoid all stress in your life… but there is always stress lurking. I walked away from a job I had been at for 10 years, because my stress levels were going through the roof, as were my symptoms. I now work in a very fast-paced, high stress environment, but it isn’t the same type of stress. I go in, do my job, and leave on time, and leave my stress there. I used to worry about straightening up for company, but now if people complain about the mess (a messy kitchen table full of stuff that needs sorting level, not an episode of Hoarders level) and they don’t offer to help clean, they ain’t a friend, and that’s one less new year’s card to write. I spend less time on stuff, and more time with people.
If you haven’t tried – seriously tried, not just giggled about – something like mindful meditation, yoga (the meditative kind), or spiritual practices, if you are a spiritual person, try it. Carve out time in your day to do so, even 5-20 minutes. There are lots of free guided meditations on YouTube, both guided imagery, guided physical relaxation, and spiritual.
Be aware of how you deal with stress, and find new ways on how you respond to stress. Guess what? The science supports meditation and stress response as being beneficial for chronic conditions in general and pain specifically.
When I have a ‘bad body day’ now, I remember my worst day now is better than my best day used to be – that’s not lying, because I have whiny Facebook memories popping up continuously that remind, WHOA, I shouldn’t be belly-aching!
- Rob’s Rule#9 – get a new attitude…and learn to let shit go.
Almost done. Life’s not worse now, it is just different. Nobody plans to have a chronic condition. Nobody plans for most shit in life, or if they do, it’s not quite what they imagined. If you aren’t making the efforts where you can to change things for yourself, and if you aren’t finding ways to enjoy life still, you are going to be very miserable and mostly alone. But you’ll have pain regardless, probably worse than anyone else with similar symptoms but a better view on life.
You may have new parameters to work under. I used to work all week, and go out Thursday – Sunday… weekend started a bit early, LOL. Now, I might get one night out dancing a bit on a Friday or Saturday, because it will take me a full day to recover my energy levels, and my body will ache fiercely. But for me, it’s worth it. I’ve had to cancel a few social engagements here and there, but strangely, because I’ve made focussing on relationships a priority, I actually have more social engagements than I used to have.
I got a new job. I’ve dated more in the last few years of my life than in my 20’s and early 30’s combined. I’ve travelled to two countries (I didn’t exactly get out much before, so that’s a lot). Yeah, I have to put some planning in place here and there, but I’m doing stuff I never dreamed of before! I’ve learned to not say no right away. Because I had to force myself to think about the way I was living, I slowly learned to make changes to accommodate fibromyalgia, and in the process, have done a lot more living. I don’t recommend people get out there and get a chronic condition, but if you, dear reader, are finding that you have a new obstacle in life, find a way to get around, over, under or through it, or change paths and go some place else. Just don’t sit by the obstacle waiting for death. Death finds us all eventually, and you aren’t dead yet.
- Rob’s Rule #10 – don’t forget to LIVE life