Monday, October 28, 2013

Because I Need More Things Going Wrong.

But such is the problem of severe nerve damage, neuralgia, and chronic bed rest. I've now spent the better part of two of the last four years on and off bed rest. Obviously, it's not enjoyable - quite the opposite. I don't really have much of a choice, since my head hurts so intensely. The pain isn't worse when I stand up or sit down or lie down, but it is so insane that even the thought of getting up and moving is impossible; sometimes, even my eyes hurt. Most days, I only get out of bed to shuffle back and forth between the bed, the kitchen, and the bathroom. I go days without leaving the house. It's not healthy, I know.

As it turns out, it's far more unhealthy and dangerous than I expected. Wednesday evening, I started having terrible pain in my left calf, just below the knee. I didn't think anything of it at first, because my pain is kind of like whack-a-mole all the time; I never know what is going to hurt, when it's going to hurt, how long the pain may last, or how severe the pain will be. When I woke up on Thursday, I felt like I was having the worst charlie horse in the world, but a million times more intense and much physically deeper. I still didn't think much of it; I simply put heat on it and wrapped it up and used an immense amount of IcyHot on it. Then I woke up on Friday and it hurt worse. Then Saturday and it hurt even worse. By then, I realised that this pain wasn't like rest of the neuralgic pain I've been dealing with; everything else was in my joints and only lasted two days at most. This was far more muscular and so much worse. So I decided that if the pain was still there on Monday, I'd phone my GP. I couldn't really walk, I couldn't put any weight on it, I couldn't engage any lower leg muscles without crying in pain.

Of course, I'm an expert worrier, and my brain always immediately locks on to 'worst possible scenario.' In my head, the worst case was DVT. Unfortunately, I have two significant risk factors - a family history (my father and his sister) and long-term immobility. When I told this to the GP, he immediately sent me downstairs to have an ultrasound. It was long and excruciating (and freeeeeeezing cold without pants on!), and it was longer than it needed to be because a) I have shit veins that are really far from the surface which make drawing blood nigh impossible, and b) my tremors get worse with the amount of pain I'm in, so my entire body was essentially vibrating. The procedure took over an hour, and then it took the doctor another two hours to phone back with results.

Good news and bad news, like always. I don't have DVT, but there are a number of small blood clots in the superficial, surface-level veins slightly below and inside my knee. My GP and the radiologist weren't overly concerned since they were small and not in any danger of breaking loose and migrating. But I'm under strict orders to take Advil every six hours, keep moving my legs as often as I can by doing 'exercises' every half and hour or so, and to come back in on Friday if the pain isn't better or come in IMMEDIATELY if the pain worsens or moves.

So I suppose it could have been worse. They decided not to put me on any blood thinners for the time being, although that may change. That's actually good, because those meds can really interfere with surgery. And what turned out to be wrong was pretty damn close to what turned out to really be wrong. Don't get me wrong - it hurts more than any words could express. But it isn't as serious as it could be. Hooray?

2 comments:

  1. I'll be following your progress with interest. I have just been diagnosed with occipital neuralgia, life long history of migraines and headache too. I had microvascular decompression surgery in June for glossopharyngeal neuralgia and 4 weeks after surgery a sudden explosion in my scalp/neck pain, just confirmed as ON. MRI & CT scan next week but also suspect the nerves have been grabbed in my previous incision (retromastoid craniotomy). I also had a lumbar puncture at one point a couple of years ago but thankfully no leak. Traumatic enough in itself though. Best of luck, hang in there.

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  2. That's what I made this blog for - to help those with ON, to find other people who sympathise, maybe to help someone who's struggling for an answer like I spent three years doing. I suspect this condition affects far more people than we know, but it isn't an easy diagnosis to make because no-one can really "see" the problem. Then again, you can't really see a migraine (except for once, when I had an MRI when I happened to have a migraine. That was a bad life choice with all that noise.) My pain has come on the same way - I've gone to bed fine and woken up thinking I was suddenly in hell. It sucks, and there's no nice way to put it.

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