This is basically a giant whinge, which I’m always game for.
However, if you can’t be bothered reading all the way through it, here is the potted version:
I have lots of pain from autoimmune illnesses, old injuries and the effects of getting older. These pains set each other off which means they are becoming uncontrollable.
In order to remain vaguely sane, I have decided to work with a nutritionist on a wacky-fun elimination diet to try and manage the autoimmune stuff, do lots of annoyingly hipster-trendy rubbish to try and manage the chronic pain, and see a pain management specialist to try and manage the whole sodding package.
This makes me grumpy.
I have reached the end of my tether.
Now for the long version
So there, I was, being in pain.
I get moderate to flipping-agonising thoracic back pain, from an old injury (30 years old but apparently getting worse by the day). I sometimes get lower back pain, although that’s pretty good these days from all the exercise I do.
I get rheumatoid arthritis pain from time to time, it is generally controlled and I usually don’t bother about it, but when the weather changes or I get run-down it tends to flare up. I can get that in any joint but mostly it first appears in my legs, feet, hips and fingers. Which is inconvenient.
Lately I have been getting nerve and muscle pain. I’ve had it to a certain extent for many years, but recently it flared into an acute form and my neurologist and I are trying to get it back down to manageable levels. This condition appears in many forms – aching, tired muscles; pain during and after exercise (yes yes, I know it is normal to get some muscle pain during and after exercise, but I ask you: is it normal to get waves of sharp, burning pain that make you feel nauseous and dizzy? Thought not.) Buzzing, tingling pain in my extremities, numbness, pins-and-needles, oodles of sudden agonising cramps, especially in my legs and feet (yay) and, my personal Most Grumpifying: the Pincushion Pain.
That feels exactly like some invisible bugger is shoving a large pin deep into my skin and muscle. It happens all over my body, I am always on edge wondering when and where the next one is coming, and it makes me jump; it is unpredictable although I know I will always get it in the evening and at night. Makes sleep tricky. Gets worse when I’m tired or in pain from other reasons.
(You may ask: have I annoyed any people who practice witchcraft? I don’t know. Possibly. If it’s you, could you please stop?)
Then there are the occasional migraines, the frequent TMJ (jaw and neck pain), plus all the commonly associated brain fog and fatigue.
At any given time, at least one (usually two or three) of these things are acting up. When I get the jump on one thing, another takes the opportunity for a flare.
I think if it was just the autoimmune pain (the muscles, nerves and joints) I could cope better; but the growing back pain throws a big spanner in the works.
I’ve had that pain most of my life. It’s an old ‘friend’. It wasn’t treated well when it first happened (nobody’s fault: nobody really seemed to know how to cope with that sort of injury in a child). For most of my life I have been accustomed to ‘pushing through’ it. Which has been necessary in order to hold down jobs, have a social life and so forth. For entire years in the past, I have coped with it quite well, although it has had a tendency to surge back into my life at inopportune times.
It has surged back with a vengeance, and as I get older it seems to get stronger. Like some sort of gothic monster.
My big problem is that all these different sources of pain tend to set each other off.
The sensible way to treat my back pain is to be active. As active as possible, in fact. Spines love movement, and if I exercise a lot it makes me tired, and that allows me to sleep better, which is also nice for spines.
However, too much exercise sets off my autoimmune stuff. Last time a dear little doctor (not my usual GP) excitedly suggested that I try and get in 45 minutes to an hour of vigorous activity every day to help my back pain/sleep, I had a giant flare-up of muscle and nerve pain and associated fatigue and brain fog, which lasted me a good week, during which I was unable to work.
That’s not the answer!
Autoimmune illness loves gentle to moderate exercise. When I get a flare, I should stay gently active while not stressing my system. But my back does not seem to dig that so much. It likes me to stress my system. I have a standing desk at work, which is a good idea for my back, and I try to stay mobile while I’m using it; but if I get weary doing this – hello! The pinpricks, muscle pain, cramps and numbness start up.
Autoimmune pain makes me sit and move oddly (especially the cramping) and Spine does not like. Spine pain interferes with my sleep, which Autoimmune does not like … ah, you get the general idea.
I’ve been in denial about the sheer horrible exhausting nastiness of it for some time, because I didn’t want to identify myself as Broken. But when I realised I was starting to dread waking up, and wonder how the heck I could make it through another week, I knew it was time for some more action.
So here is the plan.
My lovely pain counsellor is also a nutritionist. She asked me if I was willing to try an elimination diet, called the autoimmune protocol (AIP), in order to try and identify foods that might be contributing to my autoimmune issues. Elimination diets are never much fun, but I went for it anyway. It would be nice to be able to go off some of my meds and fear the dreaded flares a little less.
Then I went to my GP and begged for a) a referral to somebody who could manage my whole pain situation, rather than focussing on their area of speciality only (this was creating a situation in which I was getting directly contradictory medical advice), and b) some decent flipping painkillers.
The GP referred me to a pain specialist and I am seeing him in a couple of weeks. I am trying not to hold out hope of miracle results, but I am also looking forward to it a lot …
In terms of painkillers *, the GP would only let me use Panadeine Extra, which has a higher amount of codeine than normal Panadeine. Her reasons seemed sound: it is not possible to take prescription painkillers and still do stuff like concentrate on work. They have side effects, and are known to be addictive. I hate muscle-relaxants, they don’t suit me (although they do work). It is a difficult balancing act. I try to leave the Panadeine Extra only for evenings to help sleep, and not take them too often – certainly not daily. But it is hard when pain levels hit 8 or more every single day, and I still wake in the night from pain. I have to decide which evenings are more important for me to get some relief, and which ones I can afford to be in horrible pain and wake exhausted and foggy-brained.
What else am I doing?
Yoga – which may be trendy and blah blah but I LOVE IT and don’t actually care a jot about whether celebrities do it or whatever. It is a source of great pleasure in my life. I do a two-hour class weekly, and stretches and little routines daily.
Walking – on my days off work I love to go for long, rambly walks with the Darling Dog. At work, I join friends for a swift, half-hour power-walk at lunchtime whenever I can. The Captain and I love to walk for pleasure: walking is lovely and I am privileged to be able to do it.
Swimming – I love being in the water. I have gone swimming on and off at various times in the past but now am determined to go whenever I can. I do exercise in a heated hydrotherapy pool when I’m suffering particularly badly.
Weights – I was given a little home weights routine by a rehabilitation gym that really helped to fix my lower back pain. Shame it hasn’t done much for my thoracic back (yet).
Relaxation – meditation, breathing, reading, knitting, cooking, gardening – all of these things are part of my arsenal of pain-control methods. Sometimes they can slow pain down, or distract me from it if it isn’t too bad.
I decided to start this blog as another form of pain management. It is a right pain in the bum for somebody like me to have to dedicate basically every waking moment to, you know, living like a normal person. I’d much rather be doing my house up, necking G&Ts and scoffing posh cheese, and having involved boring conversations about superannuation, like most of my peers.
I decided that, rather than whingeing constantly to said peers about all the bloody kale I’m now consuming, it might be therapeutic to blog about it. So here I am. And now I am going to go and rest my poor old back.
* Some people have expressed shock and horror that I take chemical pain relief. They are the same people who generally tell me off for ‘taking too many medications’. To these people I say: if you could spend one hour in my body, you’d quickly change your mind. There is a reason I am grumpy! Chronic, high-level pain is exhausting. It takes up enormous amounts of space in your mind. It prevents you from focusing on anything else. It is boring, and far too interesting, and makes you feel as though you are living on some other, vile, dark planet. Frankly, at this stage I am willing to use any legal method available to me to control it. Yes, non-drug interventions are ideal. Does it sound to you as though they are working for me at the moment? Keep on reading, though, and we’ll see if I can’t eventually stop taking them regularly …