Those of us with chronic pain are very much aware that chronic pain is a broken pain signal that can’t be turned off and we have absolutely no control over the volume either. So it is blaring its pain signal all the damn time, whether we are active, or not. Yes, we have to stay within our limits or that signal is going to be significantly louder. And we have to pace for the same reason. And we sort of get a feel for how much to pace and where those limits are, most of the time.

Text: Chronic pain- My broken pain alarm system

Image below text- woman walking as seen below waist
Green light, green light, green light… oops I totally missed that red light.

False Alarm: Problem one with a broken pain alarm system

Obviously, one problem with a broken pain system Overall is that the pain limit changes day-to-day. So it can be extremely difficult to pace when it is hard to exactly know where that limit is. We can inadvertently exceed our pain limit and not know it until later that day. And when we do know we did we know for sure the next few days are not going to be fun, at all.

This is just the way things are with chronic pain. It is hard with constant baseline pain to know when exactly you do too much in a day. But you know too little can also be a huge problem. Somehow we have to stay in the middle there. We know it is a malfunctioning pain system but we still have to stay within our pain and fatigue levels to maximize our functionality and prevent boom and bust crashes, as best we can.

Not a false alarm: Problem two with a broken alarm system

It is hard to know with constant baseline pain when you actually hit a point of ‘injury alarm pain’- as in Stop Doing That Now pain

Obviously, if a normal person is doing anything and they feel pain it is an alert that something is wrong. And that they should stop what they are doing, assess it, and treat it.

I don’t exactly have that alarm system. I have mostly been taught behaviorally that most of my pain is just a malfunctioning signal in my brain and that I can generally ignore it as long as I pace myself. It is not In the Body. And if I injure myself- like when I fell down the stairs from that vertigo bout- it is pretty obvious that pain was In the Body. Right? Completely obvious what the difference is. Well, not so much.

I am doing my vestibular rehabilitation (VRT) And I am a stubborn, determined person. I knew doing more, such as these exercises, plus walks, plus extra housework would equal more pain and fatigue. But I knew it was a temporary increase and I felt entirely comfortable with the necessary pain for an actual gain. If you don’t do VRT daily and consistently I don’t see how it would be as effective. So I was in 100%. And I am exceptionally good at ignoring pain. It was how I managed to work for as long as I did. Not saying I recommend ignoring pain like that for Long durations because your mental health will tank, but short durations for a specific purpose seemed totally achievable.

Big flaw in my thinking is not all my pain is fibromyalgia pain

And since not all my pain is fibromyalgia pain that means not all my pain is from a faulty pain system sending out a blaring pain signal and horrible muscle pain. Some of my pain is actually for entirely different reasons that are predominately ignored by doctors and I just deal with it. And that is the joint pain associated with joint hypermobility syndrome. Over my life, I have learned a lot of things that really are not a good idea to do when it comes to this. But very specific things. It is unfortunately hard to know what exercises would help the situation when no one tells you.

Well, it is sort of hard with hypermobility to know you are over-extending your joints. And it is also hard to know you are doing too much. And with my overall, baseline pain basically masking my joint pain I ignore all the alarm pain coming from my joints- basically lumping it all under the same category. So much so, it literally didn’t occur to me that when I started to walk funny and favour my left leg that it was my knee on the right side Weakening Substantially. I mean, yeah, my joints were really hurting from these balance exercises. I have weak ankles, knees, hips. So I felt pain. I felt joint fatigue. In no way did I think this was out of the ordinary. Even when I started walking funny, instinctively, when I was tired to not put any weight or pressure on my right knee.

Oops, that was Alarm pain in the body I was ignoring. My bad.

Well, I sure did figure it out when the pain went way beyond alarming and right into STOP NOW. I am talking sharp, stabbing pain right in the joint. Grinding in the joint. And definitely weakness to the point I feel like it actually is going to give out on me. So I am temporarily pausing VRT and activity to treat my knee in any way I can think of. I was going to email my vestibular therapist but I have no idea what her email is. So I am just going to have to wing it. My spouse bought my insoles for my shoes that have a fake arch, since I am double jointed in my feet, and that makes the arch collapse and makes me quite flat-footed. So that will help with foot support and pain… and that also helps with knees and hips.

We can ignore a lot. Sometimes a bit too much

I realize I must have been really not paying much attention to the signals my knees were giving me. I know on my walks I would tire, walk slower, and pain would increase. And that was not just from the walk but also from the overall increased activity And the walk. I just didn’t think the walks had much impact on my body and felt fine ignoring those signals. Up until it got a bit weird when my right leg was lagging behind my left.

I can’t recall that ever happening before. When I have had pain in one knee more so than the other, one foot over the other (and not both equally) then sure, I might choose to walk differently to ease movement. I wasn’t choosing to, it just started to happen. I was pulling my leg forward with my hip to try and keep up with the left. And I am still weirded out by that, to be honest. Mostly because soon after that gait issue I have had a sudden, alarming arm weakness start. Abruptly one day and is still there.

The arm issue, on the same side, given my history with migraine with aura sort of was very stroke-like. I did do a stoke test in front of the mirror. And I know that doesn’t mean it couldn’t have been a TIA. Or even a sudden worsening of my nerve damage in that area. So most normal people likely would have gone to the ER. Again, I am seriously reluctant to do that sort of thing. Not when I can rationalize it away and ignore it temporarily. Going to the ER with a chronic illness and chronic pain is just asking for stigma and discrimination and I resist it strongly. If I was 100% sure I was having a stroke, then yeah, but otherwise… I am positive, knowing myself, I wouldn’t. I compromised with myself and did send an email to my neurologist just in case he might think all that is neurological. However, maybe it isn’t. I mean, more activity… more pain, more fatigue… more symptoms. Most often it is a pain thing.

Seriously, if anyone else had what happened to my arm happen to them in front of me I’d drag them kicking and screaming to the ER. That’s a fact. Like I said, with chronic illnesses we are really capable of ignoring a whole lot, even when we shouldn’t. I ignored my initial nerve damage on my hand as well. So no surprise I ignored this too. Rationalizing it could be a) a silent migraine on the other side of the body than is typical to me, b) a pinched nerve or c) worsening of my nerve damage which since it was never explained and happened spontaneously, obviously could get worse just as spontaneously. It is amazing how capable I am at brushing things off when it comes to that moment to decide whether I should do something about a symptom… or not. And then it persists and I am like, yeah, maybe I should have had someone look into that. I can be such a dumbass. But a dumbass that loathes the ER that much, I suppose, and for valid reasons.

Also in Alberta here with the pandemic, our ICU and hospitals are completely overburdened and staff overworked to the breaking point because of poor provincial management. It is a serious problem and I imagine a lot of doctors and nurses are running way, way too close to burnout. I wouldn’t go to the ER if I thought it was any chronic illness issue that could be dealt with by Any other means for sure.

Radical acceptance with chronic pain and illness
Creative pursuits and how it helps cope with chronic pain
Battling chronic pain with positive psychology and cultivating character strengths

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