Fibromyalgia "Not So Much" Fun Facts: Let's Look At "Morning Stiffness"
This is another in our series of raising awareness of the condition fibromyalgia, please note these are personal experiences, that I hope will help those diagnosed with this condition and those who may need the condition explaining to others. I am no medical expert, but have been fighting fibromyalgia for decades, anything new medical wise that you experience, please seek professional medical attention immediately.
This information given is part of a presentation that I have done in public previously and should not be used as any medical advice, these stories are in no particular order, so please make sure that you read all of the series to understand the condition as a whole package. This is once again a small element of fibromyalgia and can be severe, but is always a struggle each and every day.
There is no other way to put morning stiffness, than to use these words, it is the reason that can be the difference between my broadcasts in the morning and not. But like with all fibromyalgia elements, it can vary in its extremity greatly. The reason I chose this one today, is because it happened today, but I was well enough to get up and do a show, fortunately.
Imagine that you are in bed, the alarm goes off, and you cannot move. How would you feel?
So many mornings that can hit me. But see it isn't just that alone. Thank goodness for modern technology as I don't have to reach for my alarm anymore, as sitting listening to an alarm sound, sometimes for hours, and you really want to get up and turn it off, but can't as you can't move.
Alexa devices have been a godsend for me, as I am able to reset the alarm say for 10 minutes, ask it to play some gentle music or to give me the news. This is part of my mindfulness to distract from that sheer pain that envelops the whole body, if you can physically get up and sit on the bed edge for a few moments. Sometimes that isn't enough, so I have had to learn that some days it just isn't going to happen today. It takes a while to accept that your body isn't going to function like everyone else, often its down to unrefreshing sleep, night terrors and being woken suddenly, which the alarm alone can cause.
One of my not so common in fibromyalgia elements is carpal tunnel panic attacks, I can have them in my sleep or on waking, where my hands are clenched closed like fists or part fists, so my first issue when I try and get up is my hands don't work. Try it some time, when you wake up, don't use your hands to get up out of bed. I have to prise each finger out of the grip hold, which sends shooting pains up my arms, likely usually one side is worse than the other, that I can do this, in the extreme I just have to lie in bed and wait til the calcium that floods my body dissipates. Then comes the pins and needles, followed by some use coming back in my hands, but can't feel anything in my hands to grip onto too, but I have got used to it over time, it is incredibly scary those first few times. But I know that I can't type on a keyboard, use a mouse or operate the sound desk at that stage to broadcast, so it can take a while, hence my 4-5am alarm each morning.
But that's just my hands working, what about the rest of me, I have adapted my bed, so that I have plenty to grab on to lever myself up, usually my back and neck are completely seized, so I can't bend to get up, so I lever myself up a bit like Frankenstein, as upright as possible without bending, then once I am sitting on the edge of the bed with shooting pains across my back and neck, I take a few breaths to get over the pain in the hips and knees, as they touch the floor. I have to make the decision, can I actually stand? Something that most take for granted when they stand up they actual can without thinking about it, I have to decide how the current pain level will overcome me when I stand. I also have to have falls thought of whether that standing will cause me to do.
Alongside this is sheer exhaustion and fatigue, no matter whether I go to bed at 7pm or 1am, it makes no difference, as I only sleep for approximately 3 hours, unless I heavily medicate or have a few beers. The decision to stand or not can be affected by this alone, some rare mornings when it's only a dull ache, that I wake up with, the tiredness can cause blurred vision and "fibro fog" (we will cover these in another article). Spoon theory also comes into play (read the article on Spoons to explain this), if they have been overspent the day before it can cause issues with the next morning in these ways. Another, element that we will cover later is communicating, I don't know after all this, if I can speak, read, etc.
I am not writing this for sympathy, but understanding when I have to miss shows that I may have said live I would be back for. Fibromyalgia fighters would rather raise awareness than any pity for our condition. I hope this gives an incite into what it takes to get a show to air each morning, and why during a bad flare up of fibro it truly is impossible to do. As one expert said to me, the only time I will be pain-free and symptom free when I stop breathing, and I don't plan to do that any day soon!
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