Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Saturday, 31 October 2009

Today's pain menu

Laying awake this morning (hungry cats staring at me earnestly), for ages I couldn't move because my limbs felt as if they were made of lead, however, if you're looking for pain in any of the following areas, I haz dem:
  1. Head - that sort of feverish fluey headache.
  2. Sore throat.
  3. Neck - still, again, ad nauseum.
  4. Shoulder - joints stiff, achy and clunky.
  5. Upper arms - burning ache and heaviness.
  6. Lower arms and wrists - carpal tunnel.
  7. Hands - stabbing pain in palms like crucifixion.
  8. Upper back beneath shoulder blades - dull ache.
  9. Lower back - just excruciating pain.
  10. Both hip joints - gnawing pain like toothache. The right is the one I fell on 8 1/2 years ago. Pain in the left is a new development.
  11. Thigh muscles - cold, contracted, solid and yet burning.
  12. Knees - tear-inducingly painful and more so to put weight on.
  13. Shins - feel like they've been bruised and beaten with a baseball bat.
  14. Ankles - clunking, sore, achy joints.
  15. Feet - all manner of aches, pains, sores and burning.
Let me reiterate that this was the selection of symptoms I could already feel when I woke up and was still lying in my comfortable bed (thanks to a natural latex mattress.) I hadn't even had the chance to get up and hurt myself and, this general selection is nothing at all unusual.

When I do get up, I feel fluey, weak, lightheaded and my legs start to give way, so for most of the day, yet again (as in 6 days out of 7), I could do no more than an impression of the dog pictured!

Interesting aside: When my mother was waiting at her outpatients appointment the other day, she said she sat next to a man who was going "Oh and ah" in pain. The nurses, you know medically trained professionals, she said, had asked him if he was alright - they could obviously see for themselves that he was in pain - and asked him if he wanted any painkillers.

He declined the drugs, saying that, mostly, they didn't work.

Whenever I've been to any of the many hospital appointments recently, even when I don't notice it myself, doctors, nurses, radiologists, etc., alike all notice that I am breathless and showing visible signs of being in pain. They always ask me if I'm OK and if I need anything too. Mostly this takes me by surprise and I just tell them I have fibromyalgia and ME and that it's "normal" for me.

This man had fibromyalgia too. So mother asks him, "Where does it hurt?"

And (unsurprisingly) his reply was, "Tell me where it doesn't hurt!"

I keep stressing this to her: fibromyalgia hurts anywhere and everywhere.

And that it is possible to tell when someone is in pain.

And that drugs do not kill fibromyalgia pain.

It's like beating my head against a brick wall, because she seems to understand the words, but has no concept of their meaning and implications. Learning what fibromyalgia is and knowing that I have it, provokes no reaction. It's like, "the lights are on, but nobody's home."

(No, she isn't stupid, she totally lacks empathy and is far too engrossed in herself. And yes, my critics will be foaming at the mouth now. The difference is, she just says what she thinks about me. I can back my comments up with solid research, written evidence and witnesses.)

The doctors apparently want this man to lose weight. They do this to me too. First fact, the ONLY reason I have put on weight (it's been many years since I was able to do an impression of a stick insect, if I ever did and the fibromyalgia itself caused some increase, but not all) in the first place is because the first thing I was prescribed was 'effin Amitriptyline (for every one person this has helped, I've read 1000 reports of people who would rather die than take it.)

One of the known side-effects for this drug is excessive weight gain.

But it's cheap, so the NHS pops it out like Smarties.

Then they bitch at us about getting exercise and losing weight - when you can hardly move, let alone exercise and with ME/CFS too, shouldn't do so. I know there's no cure, but you'd think there was something they could offer us (other than pseudo-psychology) and this broken record!

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