Tag: living with fibromyalgia

The Acceptance and Willingness Modality

Bones

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I’ve been going to counselling for a while now.  We started off with weekly sessions, moving on to fortnightly, and now we’re hopefully migrating into monthly.  It’s the free service offered by the university, so it’s not designed to be continuous, but rather a stop gap for exam stress and the like.  I’d love to go weekly for a few more months, but there’s a lot of pressure on the counsellors from up high to only do short interventions.

Which is a bloody nuisance because my counsellor is amazing.  She also has a chronic pain condition so she understands, and she’s been imparting some glorious knowledge.

But the biggest, and most amazing piece of knowledge she has imparted on me is the concept of “Acceptance and Willingness”.  They’re not quite the right words, because ‘acceptance’ has connotations of resigning oneself to something, but it’s the closest we’ve got.  She’s suggested I read “Get Out Of Your Mind And Into Your Life” by Stephen Hayes, and “The Happiness Trap” by Russ Harris, as they explain the core concepts around the whole thing.  It’s kind of like an extension of mindfulness, only in a way I can understand and take on board and use.

So here’s the way I see it.  Your first thought, in any given situation, is your conditioning.  I’ve been conditioned to be judgemental of fat people (courtesy of the narcissistic ex).  Society has also conditioned me to be judgemental of people’s appearances in general – too much makeup, too little makeup, weird hair, weird outfit, etc.  So my first thought is often not a kind one.  My second thought, however, is who I want to be and what I want to think, and it’s usually something along the lines of “he/she is fat and gorgeous” or “that outfit is so weird and they’re rocking it” (NO BUTS HERE!).  I turn my initial nasty judgemental thought into something complimentary of the other person, because the person I want to be is someone who is kind and supportive of other people.  By accepting my initial thought (“he/she is fat”) and transforming it (“and gorgeous“), I change the entire tone of my thoughts, and by extension of that, the entire tone of my body language.  It is unlikely I will ever not be judgemental (especially on bad days), because the conditioning runs so deep, but every day I will make the extra effort to move it to a thought I want to have.

Now that we’ve established that thought pattern for external things, the whole ‘acceptance and willingness’ modality is applied to internal things.  Not just thoughts of ‘ohmygod look at that maHOOSIVE forehead’ (like the total asshole my brain is sometimes), but also the thoughts of ‘I am not good enough’.

This is where it gets really hard, because part of acceptance is acknowledging the thoughts behind the feelings.  It involves diving into your dirtiest mental laundry to identify what, exactly, your brain is telling you when you feel a certain way.  Sometimes it also involves identifying why your brain is telling you this, and that can lead you to some very unpleasant places.  You can’t shy from it, though, or suppress it.  You have to look at the feeling, tell yourself ‘this is what my brain is telling me’, and then take a step back and say ‘I have identified that this is what my brain is telling me, and this is why’.  Then you take a further step back, ‘and now I must act in a way that aligns me most with who I want to be’.

For an initial example, one that many people with chronic pain will be able to identify with, I’ll tell you about yesterday.  I’m having a bit of a fibro flareup right now with all the stress of a friendship breakdown, mum visiting, and exams looming (with me having done no work at all, because I have issues around seeking adrenaline to enable me to complete tasks – which is another topic altogether!!).  When I have a fibro flareup, I don’t lie in bed, but rather on the couch.  I can prop myself up on cushions, I have my animals around me, the heat pump going, and a view of the garden.  Except once I lie down it’s painful to get back up.  It’s more painful to exist in any other position, though.  So once I lie down, I don’t want to get up.  I want to avoid pain because it’s not a nice thing to experience at all.  I don’t like it.  But I have to get up to get to university to borrow a book I said I would borrow from a lecturer that day, who is doing me a favour by letting me borrow this book.

Normally I would think ‘ugh, I am in pain, and I know I will be in more pain when I get up.  I do not want to experience this, so I will postpone borrowing the book until tomorrow when hopefully I am feeling better (but I will feel anxious about this action as well)’.  The acceptance and willingness modality is different.  It is ‘I am in pain and I know I will be in more pain when I get up.  This is an uncomfortable feeling.  Even though I will experience this uncomfortable feeling, I will act in a way that aligns me with who I most want to be, and I want to be someone who is considered well enough amongst my lecturers, and not some lazy ass student who asks to borrow something and never turns up.  So I will get up.’

The same goes to emotions.  I’m dealing with a lot of unpleasant emotions I don’t like dealing with right now because of this friendship breakdown.  I feel incredibly sad and just generally awful, which stems from the fact that my brain says I am responsible for it, I am in the wrong, I always do something to fuck things up, I am inadequate.  My initial response is to shove all those feelings away without bothering to identify the thoughts behind them, and distract myself with murder documentaries or podcasts.  It doesn’t stop me from feeling those feelings, and it can make me very anxious.  I’ve been in full on meltdowns because of this shit, where I can barely cope with cooking dinner because I’m so frazzled.  All I felt capable of was sitting on the couch, wrapped up in a blanket, stimming like crazy on my laptop with murder documentaries going on the TV.

This past week has been different.  Really fucking hard, don’t get me wrong, but different.  Instead of beating the feelings away with the mental equivalent of a baseball bat, I’ve stopped, taken a deep breath, and let myself feel them.  While feeling these things, I’ve tried to identify the different aspects, and the different thoughts behind them.  I’ve discovered a lot of thoughts I didn’t think I had – such as the one about inadequacy.  Then I mentally say (or say out loud if I really need to hear it) “my brain is telling me -” and here’s where I put in whatever thought I’m focusing on “- that I am inadequate.”  I’ll take it further:  “this thought stems from being ignored as a child, passed over for things during school, and never having any of my efforts acknowledged.”  As a child I was super awkward, and tried really really hard in school but only in short bursts, and there was no consistency or support structure in the home.  So I was the typical really smart but fails to apply kind of child.  Ergo, inadequate.

Once you name your thought and where it comes from, it’s easier to distance yourself from it and its associated feeling.  It gives you more clarity to see the situation for what it is.  In my case, not my fault at all, and actually a very controlling friendship.

Once you’ve got that small bit of distance you can then look at where you are and think about who you want to be, and what action will align you most with that person.  For me, in this situation, I want to be an independent woman who does not take abuse from a friend.  I also want to be a kind person, both to myself and to her, which means that I will not respond to her anger.  I will not tell people we know the details of our argument, unless they ask, and then it will be the most bare bones and factual.  I will not hold things over her or against her.  I will always be courteous to her.  But our affiliation is over.

It’s bloody hard.  I don’t want to feel these uncomfortable things.  I don’t want to see her, I don’t want to interact with her.  I want to avoid her and these feelings.  I want to hide away and never poke my head out.  But none of these actions align with who I want to be, which is the calm, confident, independent woman who does not take abuse from a friend and is kind, to both herself and others.

So I painstakingly open myself up to those unpleasant feelings and take that step towards who I want to be.

Deep Tissue Massage for Fibromyalgia

Bones

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My acupuncturist had a family emergency last month which meant he was off for about three weeks.  During that time I had some fairly considerable trigeminal neuralgia flareups and, in a pain induced panic, decided I must see someone … just not someone with needles.

I looked around online for massage therapists near me and stumbled across this one particular one that had good reviews and wasn’t overly expensive.  I got an appointment for the next day and went in, hoping some massage would ease the fire in my face.

It didn’t.  Oh boy did it not.  What it did do, however, was loosen some knots that haven’t been released in decades, knots my shiatsu massager just would never be able to reach.

Now I’m not talking about your normal relaxation massage where you go in and they kneed you for an hour.  No, I’m talking about the massage where the therapist actively finds the painful spots and then digs her thumbs into them for an hour.  It’s painful.  I make some truly spectacular noises and groans of “oh god” while she’s doing this.  It’s amazing.

I left feeling battered and bruised and nauseated, like I always do with any body work that releases tension, but after a few days I felt revivified!  I went back the next week.

This time she discovered even more knots.  See, now that she’d begun relaxing the superficial layer, she was able to find the deep knots, the ones that cause problems.  The ones that haven’t seen the light of day (or rather, felt the “tender” touch of a massage therapist) for decades, nay, eons!  Well after this session I felt so light headed and dizzy I couldn’t quite function for the rest of the day, or the next three days after that.  She’d knocked something loose in my back that had really done my head in.

I’ve just revisited her today and I am definitely noticing an improvement in how my body feels, despite the pain from coming off Tegretol (another blog post in and of itself!).  I’m also noticing an improvement in how my body moves, which is really rewarding.

My theory is this:  I have a lot of knots.  I have a lot of muscle tension.  I have a lot of muscle fuckery.  This will all be amplified by fibromyalgia, causing me both excessive pain, and excessive stiffness.  If I can work out these knots, release this tension, and improve my muscle health through deep tissue massage and gentle exercise, this will reduce the level of pain I will experience from fibromyalgia, because there is less muscle pathology.

So far I think it’s working?  It’s a bit hard to tell, what with exams, the stress of losing a friend, and coming off Tegretol.  To be honest I’m just throwing everything I can think of at my fibromyalgia and trigeminal neuralgia and hoping something sticks, so identifying exactly what is having exactly how much of a positive impact is going to be a bit tricky.  Here’s hoping the deep tissue massage sticks!

Either way, it’s making me feel better, and that’s the most important thing right now.

A Little Bit of Magnesium Goes a Long Way!

Bones

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I have been feeling, as a general rule, more achy and grizzly these past few weeks.  I’d put it all down to the stress – both mental, emotional, and physical – of moving and getting set up in a new place, unpacking, and the terror of finding out my exam is this week, not next week as I had thought.

I asked my flatmate if I could borrow some of his epsom salts for a bath on one particularly painful day, and we got to discussing how the primary benefit of the epsom salts is the high magnesium content, and the absorption of it across the skin.  Well I hopped out of that bath feeling a million bucks!  The lovely non-achy feeling continued until the next day, but by the one after that I was a little bundle of aches again.

I finally got my hands back on some magnesium supplements.  Magnesium was something I was taking, along with numerous other supplements, a few months ago, but stopped due to the expense of maintaining the high level of supplementation and the need to spend that money on other things.  Stopping magnesium turned out to be a stupid move.

I’ve started back up with my relatively high dose of magnesium (I think it was 1000mg or something like that) and I think I’m feeling a difference already.  I may do another epsom salt bath in celebration after this exam just to really kick things off.

It just reiterated the importance of appropriate supplementation, especially of magnesium, when you have chronic pain.  So magnesium is a pretty awesome mineral.  It has an essential role in regulating muscle contraction, blood pressure, and insulin metabolism, among other things.  It helps with nerve transmission and neuromuscular coordination.  It also plays a protective role in preventing over excitation of the nerves, thus preventing neuronal death.

There was a study testing the administration of magnesium (300mg) and amitriptyline (10mg) or just magnesium across a small number of women with fibromyalgia, and all noted a reduction in tender points and reduction in pain.

Because of its wide ranging positive influences on the nervous system, magnesium is really something I should have kept on with, and it’s probably something you should try, as well.  It’s a good thing to have at night, as it also helps with sleep.  I always notice a reduced time between head hitting pillow and unconsciousness when I’m on magnesium.

Stepping Down on Tegretol SUCKS

Bones

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It’s been almost a week since I reduced my dose of Tegretol from twice a day to once a day, and my body is still acclimatising.

The first day was excruciating.  I couldn’t think, had no balance, everything hurt (including my face).  My skin was overly sensitive and every sensation was unpleasant or painful.  My team took one look at me and said go home.  I sat down and did some work, but then gratefully took them up on their suggestion and went home to curl up on the couch and watch my latest high value distraction: Mind Hunter.

The second day was a bit better.  I no longer felt like every part of my body was on fire with fever aches.  I didn’t have much balance, and in fact I sat back from interacting directly with the horses during our practical session due to this, but I was more alive than day one.

I’m now almost a week in.  I’m pretty sure I’m coming down with a minor cold or something of that ilk, as I’ve got the heavy duty fever aches, extreme lethargy, and overall fogginess.  While this is a symptom of my fibromyalgia, it’s usually reserved for ‘coming down with something’ rather than ‘you’ve done too much’.

I will not be getting acupuncture this week, as my acupuncturist has had a family emergency.  I’ll see if I can get two acupuncture treatments in next week or the week after, whenever he’s back, to hit the trigeminal neuralgia hard.  It’s been acting up a bit on one tegretol, and I’d like to settle it back down.

As you may be able to see, my thoughts are still sluggish and somewhat disjointed.  I’m going to blame that on the plague rather than the tegretol, and have a nap.

How The *Bleep* Do You Exercise With Fibromyalgia?

Bones

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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.