How The *Bleep* Do You Exercise With Fibromyalgia?

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The short answer is:  very slowly and very carefully.

The long answer is:  well…

I don’t really have all of the answers, I only have the answers that have worked for me, and I have a slightly higher than normal baseline fitness, so I’ll tone it down a bit more.

On a side note, I don’t think I’ve ever looked that happy to be exercising.  Or that good while doing it.  I’ve never enjoyed exercise, especially running, because it causes so much pain.  But these days, alarmingly, I’ve been running.  It still causes so much pain but I balance it by doing a day of running and a day or two of non-impact leg exercises.

So here’s how I have found exercising works:

Do Some Sit-Ups

Park your butt, shove your feet under a sofa or a chair or something, and lower your back a little bit.  Don’t let your back hit the floor!  It’s so much harder to do a sit up from there than it is from just above it!

Lower your back to the point you’re capable of, even if it’s only to a 45 degree angle with the ground, stick your arms across your chest like you’re imitating Tutankhamun’s sarcophagus, and haul yourself back up to your knees.  Do that … twice.  Maybe three times.  It’s your first day, you’re gonna do other stuff.

You’re also allowed to cheat if you’re having difficulty.  Use the fact that your feet are under a weighted object to leverage yourself back up.  You’re still using your muscles!

Don’t Do Push-Ups

I’ve found these just too much, personally.  Even though I’m lifting weights (hahaha look at me, ‘lifting weights’, I’m lifting a 6kg dumbbell 10-20 times a day), and even cheating, the I can do maybe three.

If you can do them, good on you, but honestly I’d skip these ones.

Lift Weights

Yes, you too can get the rippling muscles of a body builder!

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Although I’d maybe hold off on quite so many weights.

Get yourself a set of 0.5 or 1kg weights.  The cheap ones that are all hard plastic and such.  If you’re feeling like splashing out, get yourself a set of light dumbbells, too!

Hold those weights in your hand, stand with feet shoulder-width apart and your knees bent for support, and slowly lift one of your arms directly out from your side … without counter-balancing!  Tighten those stomach muscles!  Lift it until it’s in line with your shoulder if you can and hold it there for a few seconds, then slowly drop your arm back to your side.  Do it with the other arm.

Do your typical bicep curls.  Do just enough that you can feel the start of muscle burn or fatigue, and stop.

Then do this one:alora-griffiths-LOnMc8Rp1Qs-unsplash

I don’t know what it’s called.  I actually half climb onto my sofa or my arm chair to do this.  I have one knee braced on the sofa cushions and the corresponding arm on the sofa arm, my other foot on the floor, and I swap around with each side.  It takes all the strain off my hips and legs and allows me to just focus on my arm.

Lift Those Legs

I did pilates a long, long time ago.  Whenever I can’t run, whether that’s because I’m having a bit of a painful day, or it’s peeing it down with rain, I lift my legs.

I lie on my side with my spine straight and my hips straight up from the floor – if you’re doing this, spend time feeling, with your hand, where your hips are in relation to the floor.  You want those hip bones stacked on top of one another.

I bend my leg on the floor a bit for stability and use my free arm to brace.  I then slowly raise my other leg up, sometimes as high as I can take it, other times just a little bit, and then let it slowly back down.  When I started, I could barely lift my leg, and that’s okay.

If I’m feeling really game I’ll even do circles with my leg, but I’ll do them really slowly so my body doesn’t rock around.  The aim of the game is for your body to remain completely stable while you’re doing all these things with your legs, so only do what you can do!

Stretch

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This is probably the most important think you can do with fibromyalgia.  A lot of the pain is from stiff muscles, because when we’re sore, we don’t want to do anything.  In particular, a considerable amount of pain is from our stiff backs.  I physically roll out of bed each morning because I cannot ‘get up’ like a normal person.  I’m lucky enough that my bed is almost waist-height, so when I roll out of bed, I can just stand up.

This takes a lot of time to un-stiffen, and doing exercise or stretches with a stiff back is painful, so wait for your body to wake up before you do any of this.

But make up your own stretches.  Stretch your arms out in front of you and arch your back.  Stretch your arms out to the side of you and really open up your chest.  Wiggle your hips!  As you’re sitting on the couch, push your leg out to the side and flex and extend your foot.  Or just straighten your legs and flex and extend your foot.  Rotate your foot around the ankle axis.  Bend your leg and open and close it to work your hip.

Stand up, bend your knees, and slowly (very very slowly, and only after you’ve been awake and moving for quite some time!) reach for the floor.  If you don’t have that much balance, do it while you’re sitting!  Park your butt near the edge of the couch, straighten your legs out, and slowly reach for your toes.  Keep your head down as you are stretching down – your neck is part of your spine!  You want to keep that spine in line!

Walk

Even if it’s pottering about at home, or in the garden, get up and walk.  Even on your worst days, spend a few minutes on your feet.  Yes, going to the bathroom counts as walking!

Cheat

Can’t fully do an exercise?  Cheat!  Make it easier!  Half-arse it!  Change the exercise to suit where you’re at!

If you’re struggling with the weight lifting, just hold the weights!  Spend a few minutes each day tightening your arm muscles and loosening them again (I’d suggest doing this with your elbows bent).

Can’t lift your leg?  That’s totally okay!  Bend both of your legs and stack your feet on top of one another and open your legs like a clamshell like that.  Can’t do that?  Sweet as!  Make something up.

Having a bad day?  Just stretch!

Got a spot that always hurts?  Do exercises around that spot.  For me it’s my hips – they always burn.  So I do exercises that stretch my hips, but don’t involve me putting much strain on them.

Yes, it’s going to hurt

Start off only doing one or two things a day.  Do that for a few days, and if you’re not hurting more than usual, do a bit more.  Build up from there.  If you go in whole hog you’re gonna hurt like nothing on earth and you’re not going to exercise.  But if you do one or two things a day, and build up from there, you’ll find that within a few weeks you’re able to do more.

And the way I see it, I’m going to hurt anyway, a little bit more pain isn’t going to make much difference.

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Three Days Post Acupuncture

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Last weekend I had been suffering greatly, and even that is an understatement.  All three branches of my trigeminal nerve on my right face were aching constantly.  My nose was set to a permanent state of burning cold.  My zygomatic arch and brow just ached so much my eyelids were significantly more closed than usual.  There’s a continuation of the first branch that I didn’t know about until it shot up from my eyebrow straight up my forehead.  Ouch, right?

Then there was my third branch, the one that goes down my mandible.  The usual hole was being eaten into my jaw, and then I had burning aches in my chin, up my jaw, the works.

The pre-branched part of my trigeminal nerve wasn’t letting the branches one up it either, it was screaming pain, making it very difficult to put my glasses on, and woe betide me should anything graze the side of my face!

Because of all this, my fibromyalgia was up.  I was incredibly stiff in the morning, and very painful to move around, all the way up until the early afternoon.  Everything was giving me hell.

I had acupuncture.

For the rest of that day, my right trigeminal nerve was deeply confused, sending waves of peace, followed by crawling burning ache, then stabbing pain.  But I was getting peace.  I myself was pretty out of it so I spent the day doing not much at all and went to sleep early.

Day one after acupuncture was bliss.  My third branch wasn’t doing anything.  This is the one that’s been eating away my jaw almost since my trigeminal neuralgia kicked up a notch in June.  It was gone.  My first branch across my brow ridge was aching, but nothing like before.  I could actually think again!  I had no shooting pains, nothing.

Day two after acupuncture was also pretty rad.  A little bit more pain was coming through, but not much.  The pre-branching trigeminal nerve was aching a bit, my brow was still aching, but that was about it.

Day three after acupuncture things are sadly getting back to almost normal.  The pre-branching trigeminal nerve is hurting a lot, my brow is aching up to the middle of it, my jaw is being eaten away, and my nose is starting to turn to ice.  I don’t think it’s as bad as it was before, pain wise, but it’s still debilitating enough that I’m just wanting to go back to sleep (instead I’m just about to quaff my third coffee in 1.5 hours – STUDY STOPS FOR NO ONE).

Still, this was a fantastic experiment.  It shows to me that acupuncture can have a serious positive affect on my trigeminal neuralgia.  I’ll report all of this to my acupuncturist on Monday when I see him next and we shall try something else.  We’re just going to keep going to see what sticks!

Adding In Acupuncture

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After the meltdown of finding out there was nothing wrong with my brain or trigeminal nerve, I decided to get to throwing everything at it to find out what sticks.  One of those things I’m throwing at it is my old physio, who does laser and ultrasound therapy for injuries, as well as acupuncture and chiropractic work.  He’s an all rounder, and he’s very effective.

When I first visited him, he unlocked my hips – unfortunately my muscles weren’t used to my hips being able to swing, and so I was walking into things and clipping the corners of desks and the like, but my hips were working like they were supposed to again!  While treating me for an injury he would also do minor adjustments to my back, each of them having huge and lasting effects.  When I’ve been to him during major fibromyalgia flare ups, a few adjustments have me feeling better.  Not completely better, but just better enough that I can get through the day.

Today was my first acupuncture session.  Now please keep in mind that I am viscerally terrified of needles.  I tend to faint when I’m needled for any reason.

I lay on my back and waited as he tore open the package.  He was very swift in placing the needles, almost no time between placing the guiding mount and pushing in the needle.  He placed four on each side, one over the trigeminal nerve, one up the scalp, one behind the jaw, and one just in front of the ear.  Tiny pinpricks of anxiety.

I’m not verbose enough to describe how I lay there and panicked as he placed them one by one, but suffice to say, I did.  A number of times he asked me if I was okay.  I had to explain that yes, I’m fine, I’m just panicking because there’s needles involved.  Once they were in and I was accustomed to the sensation, I was able to sort myself out and relax.

Since the treatment I have been attempting to catalogue the difference in trigeminal pain.  Until now it’s been less continuous.  I’ve had more sharp stabbings rather than slow burning aches, although they’re still there.  The sensation of having one particular tooth pulled without analgesia is still there and just as intense.  It all feels just a bit different.  I’m not sure if that different is better or worse than before, and to be honest unless I was experiencing them both at the same time I wouldn’t be able to tell you which was better or worse.  It’s just different.

I’m also really drowsy, which is normal.  I usually have a bit of a shit rest of the day, but the next day brings about improvements.  I’m hoping that’s the case here!  And even if not, I’m there again next week.  I’ll just keep throwing shit at it to see what sticks!

Never There

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I had a recovered memory the other day.

My relationship with my mother has been on my mind a lot in the last few months.  She admitted to me over the phone one evening that she had been very depressed when she had me and we had just … never bonded.  She didn’t know what to do with me.

I distinctly remember, at the ripe old age of 8, trying to do anything I could to make it easier for her.  My younger brother would throw a fit if his rice bubbles weren’t completely covered with yoghurt, and he wouldn’t allow the yoghurt to be watered down in any way.  Whenever it wasn’t fully covered, I would immediately say “I’ll have that one!  He can have mine / you can make him a new one” to stop the inevitable melt down from my younger brother.  To make it easier for my mother.

I was eight, and I knew without words that she was deeply unhappy, and I wanted to do everything I could to make her less unhappy.  I was eight.

My recovered memory wasn’t that.  My recovered memory was squeezing my excruciating legs to my body and curling into the fetal position, clenching my teeth to stop myself from screaming, and crying silently in my bed because they hurt so fucking much, knowing that if I got out of bed and complained about them, she would say “they’re just growing pains”.  These were my first symptoms of fibromyalgia.  I wanted to scream in pain, but at thirteen I already knew that complaining about pain got me nowhere.

I spent many nights like that, curled in on myself and clenching my body tight to stop myself from making any noise, especially when the pains hit me well into the night.  I couldn’t disturb mother.

They were only growing pains.

It’s no surprise, then, that at 32 I don’t express pain.  I was speaking to a woman the other day about my trigeminal neuralgia, and how disappointed I was that the MRI came back clean, because it means that my hoped for treatment, microvascular decompression, wouldn’t do anything.  She asked me if I really wanted surgery, and I assured her I did.  She asked me why and I said because I am in pain daily.  When she still looked sceptical (because I was carrying on a conversation normally and not looking like I was in pain) I told her I wanted to stab my face it hurt so much, because that would provide some sense of relief from the constant burns and aches I feel.  She looked shocked.

I won’t, of course, because it won’t do anything other than cause more problems, and it is an illogical act to do (hooray for being autistic), but some days I lie there and fantasise.

I have fibromyalgia and trigeminal neuralgia and you couldn’t tell just by looking at me.  I still throw hay bales around, talk till the cows come home, and do all the things normal people do when other people are around.  Because I learned very early on that showing pain gets me snapped at.  I still don’t show my pain much with my amazing human.  I say it matter of factly, but I don’t show it.  I don’t think I know how.

I have many more issues stemming from an unavailable and depressed mother, and I’m only just beginning to learn about them.  I’m definitely going to need therapy to help me untangle this mess!

There Is Nothing Wrong With Me (Except There Is)

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I went in last week for a private MRI.  It was a surprisingly relaxing experience – I spent my time cataloguing what all of the noises sounded like.  Most of them sounded like a really broken hard drive trying to work.  Some noises were like overbalanced washing machines.  Some sounded like the old 90s printers going nuts printing.

I got the report from my MRI today.  Everything is normal.  The brain is normal.  The nerve is normal.  There are no impingements, demyelination, nothing.  There is no physical reason for my trigeminal nerve to be permanently signalling pain.

I am devastated.  In a few days I’ll be relieved it wasn’t other things (like multiple sclerosis or a tumour), but for now I am distraught at the fact that they can’t fix this.  There is no cure.  They can’t make this pain go away.

This is my life.  Having a jaw that feels it’s being eaten away, a temple that aches and burns, a nose that feels like ice, and a brow and forehead that throbs.

Today I will be sad.  Tomorrow I will be angry and I will not let this be my life, come hell or high water.  But today I will be sad and accept where I am, which is in a lot of pain with no physical evidence to show for it.