Deep Tissue Massage for Fibromyalgia

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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.

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.

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!

Thank You To My General Practitioner

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I have been seeing my general practitioner doctor for two years.

I first remember meeting him as a depressed and anxious wreck during winter, where he looked at me and prescribed me antidepressants immediately, with a recheck in a couple of weeks.  I revisited a few times, both of us delighted that the first SSRI was a winner, and then I didn’t see him for a bit.

I didn’t see him until after my physio suggested my overreaction to injury may be fibromyalgia.  I described my symptoms to him and he said the words I hoped to hear:  “it sounds like you have fibromyalgia”.  We tried amitrip, then he suggested we try pregabalin, as amitrip wasn’t working for me.  It was a winner.

Then I got face pain and I went straight in to see him.  He said the words I really did not hope to hear:  “it sounds like trigeminal neuralgia”, but we treated it for a possible ear infection and possible shingles in the ear (because one of his friends had it years ago and it took a very long time to figure that one out).

I have visited him every week for so long the receptionist knows my name.

We’re now going for a private MRI and a public neurologist to get this sorted as quickly as possible, because I won’t be able to continue my education next year if this pain keeps up.

I have been incredibly lucky to get an amazing doctor first up.  He has never doubted what I have to say, never told me its in my head, always done additional research to ensure he is providing optimal care, and has taken the time and effort to personalise the treatment to my peculiarities.  He has been an amazing point of support throughout all of this.

So to my general practitioner:  thank you.  You are amazing, and you are improving my quality of life more than I can say.

I Got Fat On Tegretol

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Among the other amazing side effects I am experiencing on Tegretol (carbamazepine), such as personal earthquakes, difficulty with words, and an extra helping of fatigue, I have also put on weight.

10kg of weight to be precise, in less than 5 weeks.

I’d put on weight last year, and at the start of this year when there were three birthday cakes in a week and then two the next week at work (I can’t say no to free cake, it’s a great weakness of mine).  At the start of university I was up at about 72kg.  5 weeks after starting Tegretol, I was up at 83kg.

I have ever been the human who has been able to eat whatever she wanted and maintained a figure that had occasional family friends ask if I was anorexic.  My response was always ‘you haven’t seen me at dinner, clearly’.  This neat trick began to fade away during my late twenties, along with my ability to pack away food, and I maintained a happy 58-60kg by simply eating normally.

I went on a work experience placement to a sheep farm for three weeks.  While I was there I worked from 8am to 4pm in a physically demanding job, acting as a sheep dog, walking a three hour hike through bush on a proper off-the-beaten-track style track, hauling sheep fleece around while they were shorn, and generally having the time of my life.  In those short three weeks I toned up like nothing on earth.  I slendered down, I had guns to die for, and I was eating double what I’d normally eat to maintain the appropriate energy levels.

I don’t actually need to do a lot of exercise for my metabolism to go OH OKAY and pick up speed.

Until Tegretol.

I’m stable at 83kg.  I haven’t gotten heavier.  But despite the exercise I’m now putting in, I also haven’t gotten lighter.  I haven’t changed my caloric intake in any way, I haven’t changed my eating pattern, I haven’t changed anything except added more exercise, and I am 83kg.

The weight is predominantly on my stomach.  Every bit of my front abdomen, from below my breasts down to my undies line, is extended in a bulge.  This is not a normal weight distribution, and this is not a weight distribution I am happy with.

I’ve done a bit of looking around – there was one study on people who were taking Tegretol and gained weight (I think it was averaging around 15kg) and they only lost the weight when they stopped taking Tegretol – something that is certainly not an option for me right now.  There have been one or two people on forums who have claimed to have lost weight while on Tegretol by going extremist vegan for a couple of years – also not an option for me at this point in time.  There have been suggestions of doing the ketogenic diet – another non option at this point in time, and should be done with extreme caution by someone who is on Tegretol, as carbamazepine is metabolised by the liver, and the ketogenic diet puts extreme pressure on the liver – and doing a paleo diet.

For now I will maintain my breakfasts and dinners as is and change my lunches while incorporating more exercise into my routine.  Once my waterproof sneakers arrive I’ll be able to properly jog around at the paddocks as well (yay aerobic exercise).  My goal is to be 80kg by the time I am next on surgery!