“what kind of pain is it?”


it is my LEGS

they are killing me.

what kind of pain?

what can i say….

somedays i could CRY

pain.

pain where?

define it?

HOW?

Neuropathic pain is defined by the International Association for the Study of Pain as “pain initiated or caused by a primary lesion or dysfunction in the nervous system” and can occur because of dysfunction or disease of the nervous system at the peripheral and/or central level. Neuropathic pain can be very severe and disabling, with significant functional, psychological, and social consequences. Regardless of the underlying cause of neuropathic pain, common treatment goals are to decrease pain and/or improve function.

Last night i was on a web twitter bomb about pain management, I said possibly too much in the eyes of some, and not enough in the minds of others,

In the medical world the are phrases, terms, adjectives which i have learned. BUT they do not really apply to my pain,

  • T1
  • T2
  • T3
  • T4
  • chronic
  • persistent
  • mind/body connection
  • good practice guidelines
  • psychologically complex
  • pain algorithm
  • perceived pain
  • pain toolkits
  • CBT for pain.

this is how my pain looks today! now sneakily i have pain meds IN ME…and 2 cuppas brough lovingly by my husband. oh, and in this picture I am still SITTING in the ensuite -determined that i will make an effort to LOOK decent for my children i have spent an hour and a half getting to THAT look.,,,washing, dressing, makeup, hair, teeth. an HOUR and a HALF…sitting.paintoday

i am NOT medically qualified… BUT i am more than qualified as a PAIN EXPERT.

i do NOT remember the last time i felt no pain… my condition has been symptomatic for about 12 years (with hindsight) and layers on the symptoms as it develops. Once they appear, they stay!

i would like to share with you MY phrases and my adjectives on pain, ones which to ME are real.

  • invisible
  • permanent
  • disabling
  • pain that wakens me every night.
  • pain you  can’t imagine
  • Pain that leaves me mentally exhausted
  • Pain that leaves me physically virtually immobile
  • Pain that has affected my life incredibly
  • neurological pain
  • SHARP pain
  • burning pain
  • throbbing pain
  • unbearable pain
  • pain that makes you cry
  • heavy ache
  • electrical pain
  • fuzzy pain
  • radiating pain
  • pain like a wire brush is in your head.
  • pain where you would love to put your head in a vice for days.
  • structural pain
  • post surgical pain
  • dead limbs
  • weak muscular dragging in legs
  • pain that has had me JUDGED – as invisible takes a LONG time to show and prove… more than 10 years.
  • pain recovery days
  • pain for life
  • incurable pain
  • preparing for extra pain days
  • too much PAIN to MOVE
  • pain that costs you dignity as you will do ANYTHING to try to ease this.
  • pain that changes my professional life to my “virtual” life – one i can live on the sofa
  • pain that overwhelms
  • pain that traps you indoors you end up OFF the invitation lists…isolating.
  • pain that causes cynicism as it often goes with “we can do nothing for your condition”, or “it’s a case of trial and error” – THIS at the pain management specialist WHEN and IF you are lucky enough to get to the clinic,
  • i am NOT a doctor. BUT i know pain.
  • Pain that means a day out looks like THIS. BUT i want those days with my family.So i choose the scooter- not my favourite look but my only option!smiles
  • Pain that causes me to SAY to my pain specialist “if you could REMOVE my legs now and GIVE me wheels, I’d take them”.
  • Pain that makes you spend HALF of daytime hours asleep. not drugged. FATIGUE. Brain pain.
  • Pain that means you can not really call your existence a LIFE without a wry acknowlegment, that it is NOT the life you had, nor you deserve.
  • THAT is PAIN.
  • pain has no boundaries
  • pain has no limits.
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3 comments

  1. Hi, my name is Deb.
    I have Chiari but the neurosurgeon said it isn’t bad enough to do surgery.
    I had to quit nursing 5 yrs ago due to migraines I’ve had all my life, but they got so much worse, then went to a desk job, which I finally lost last year due to constant migraines and pain that you describe here. Exactly the same, but “not bad enough for surgery”. Neurologist said “there is nothing more they can do for me”.
    So I also lay on the sofa or bed with pain meds, no longer driving, no friends, no social life, can only do any kind of activity for about an hour, then I’m done for the day in so much pain and so tired and wiped out.
    I’ve been to every kind of doctor out there, been on all kinds of meds that don’t work, therapy, anti-depressants, the whole shot.
    Just wanted to say thank you for your blog. You are the only one out there that I’ve found that makes me feel like you understand what I am going through. Even though everyone says they do, you know they don’t unless they have felt the horrible pain of the migraines that make you just want to rip the top of your head off and the pain in your neck back and shoulders with this.
    Anyway, I hope you are having a feel – good day todayl
    Deb

    • Deb,
      i feel stupid hitting LIKE, but i meant “i HEAR YE”.
      i had nobody and that’s why i decided to blog.
      i had retire too…way back… i know it’s in the blog somewhere…it was like being a sedimentary rock- once a new symptom appeared, it STAYED.

      and i remember once being in tears to a neurosurgeon…saying “PLEASE…don’t leave me like this. THIS is not a life” – and it was THEN that he decided to do another type of MRI.
      One that measures not the “size” of the chiari, but the “amount of Central Spinal Fluid it is obstructing”.
      It was (when i got there) just another MRI BUT i had an oximeter (wee clip yoke) on me throughout.

      From IT, i was told, this is CLEARLY “attenuating” CSF flow….you need surgery.The scan was called a “CINE FLOW MRI”

      BUT surgery only eased the one type of “headcrusher” headaches – NOT any of my other things….so don’t expect a cure.
      i have a very open relationship with my neurosurgeon, and he HATES chiari, as (being relaistic) there is so little they can do to help us. Other than treat pain 😦

      So hang in there…
      Scream when you need to.
      Helen x

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