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Iolanda: My Pain Story

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I’ve had 3 episodes that have led to very significant and untreatable chronic pain.

Apologies – I may sound vague below but that’s just because with the diagnosis comes pretty significant memory loss so I don’t remember anything about that period, or in fact very little if anything that happened yesterday.

The FIRST  and the worst is neuropathic pain that has come with a diagnosis of encephalitis.  I’ve had damage to both temporal lobes, brainstem, thalamus, hypothalamus, posterior midbrain and regions of both frontal lobes, part of the lateral ventricles however some of this went down with treatment.  I’m thinking that although the scarred cells might not be showing up as anything much in MRIs now there is probably still some type of scarring there anyway causing me so many unresolved problems  (over 20 medical problems still exist)   I’m pretty sure that my central pain is from the damage to the thalamus.

The SECOND is widespread pain that I was diagnosed with in October 2003 when I really strained my arm using a rotary cutter.  What that means is that I have what feels like really really bad Fibromyalgia and heightened sensitivity to pain.  It’s just sore joints and muscles.

The THIRD is daily headaches that I’ve been experiencing each and every day since at least 2003 sometime.

Specifically about my neuropathic pain diagnosis …….

Basically they said the area in my brain which interprets pain is damaged.  It’s difficult to treat this pain because it’s in the circuit of cells around the body

–    Neurotransmitters are inflammed and damaged – the disturbance is in the neurotransmission rather than damage to the nerve cell itself.  This isn’t able to be proven by tests   ie,. misinterpretation of my body signals by my brain
–    The brain interpretation of the circuits of cells around my body is damaged
–    Lowered pain threshold

They said that even if pain related medication were to work, it would probably only reduce my pain levels by 30 – 40% anyway.

I was diagnosed in November 1997 however the pain didn’t start until about 6 – 12 months later.

It started out as “tingling” however after ?  time it worsened until it became a constant burning pain that happens all over my body but mainly on my extremities, especially my legs.  So while I’m sitting and typing this I can also feeling burning pains in my hands that feels pretty bad because I’m “exercising” my fingers and hands with the typing.

I’ve been to a very reputable pain clinic here in Sydney but they were unable to find any meds that could help me.

So far I’ve tried these and none had any effect or else side effects were too bad –

Tryptonal – up to 150mcg
Neurontin/Gabapentin – up to 1,200mcg
Zoloft anti-depressant – dosage made me too spacey, too hungry and neutral mood
Zyprexa – 2.5mcg – stopped because of severe physical fatigue
Tramal – 200mcg
Neurontin – up to 2,400 mcg – actually “phased me out”
Prozac antidep.  (Fluoxetine) – up to 2 x 20mcg  tablets – side effects too bad – including anxiety, concentration problems and increased urinary needs
Avanza antidepressant – helped pain but hunger was astronomical
Effexor – 225mg

I’m still taking the Effexor because whilst it doesn’t help the pain much, if at all, it helps me with my metabolic disorder

Things that make my pain worse

–    physical activity
–    tight clothing – so I wear loose and soft clothes, no bra and no jewellery
–    pressure on my legs when I’m in a sitting position – so I end up using foot stools when sitting on a chair, and lifting my legs when on a recliner
–    sometimes it’s bad enough that I’m unable to “distract” myself in a fulfilling way
–    constipation – pushing faeces results in incredible, horrific pain in my legs for the rest of the day.  Unfortunately I suffer from serious constipation so I’m regularly faced with absolutely horrific pain at least once a week.

Things that help

–    Psychological stability – happiness
–    Elevating my legs and being able to stop them pressing on any surfaces (chairs, lounge etc)
–    Using an electric blanket – even in summer! – the heat somehow helps to “mask” the pain – however my feet are too painfully sensitive that the heat worsens the pain and so I am always sticking my feet into the cool edge of the bed or out of the blanket.
–    I use flannelette sheets because they don’t get “cold” like cotton sheets.  Cold sheets give me a cutting pain.
–    In summer my feet feel bad enough that I use a cool-pack to try to “cool them down” because the burning pain is so intense.
–    It’s psychologically helpful to know that there are others that face similar problems – that I’m not “alone”


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  8. Annette Marie Stuart says:

    lolanda when i starting reading your post it was like listening to myself. Especially the parts about not being able to sit in the usual legs down position needing legs up! and also sadly the loo horrors!
    Recently i have been informed by a top neuro that my cps is from the cord rather than from the brain so gaba and such were not very helpful and narcs sort of are.
    Dont get me wrong the pain never ever leaves me but the sr morphine controls it enough to function of sorts but not all the time and certainly no reliably. i was offred spinal cord stimulation 2 years back only to be rejected as they felt the condition i have underlying isnt stable. i developed cps after post viral cord syndrome….rare and no cure post swine flu 2009.
    The physical extensive disability I am left with I can hack but the cps? its taken me four years to get to where I go with the flow for the most part. For the rest i become a monster retreating to darkness and my pit.
    I have cord damage so eventually was offered a wheelchair except they supplied a manual one that has to be pushed by someone. I cant self propel due to upper limb damage and the cord damage being so high up so……its the couch and the bed 6 days out of 7 except for a wobble on crutches into the garden and on better days to the lodge at the front of my house…where sometimes it looks so tempting….but i love life too much to go. My dog has learned to work with the new me far better than any of my human friends and far better sadly than my partner who seems to thnk any day no Im going to do a Lazarus and suddenly do a 5k run as before. im not a defeatist at all….but i know that all the evidence suggests that they cannot give me a new spinal cord so therefore this is as good as it gets and on good days i sort of ok with that. i just wish that we could all have a pain free hour..just one…till theres a cure my friends.xx

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