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Iolanda: My Pain Story

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”

Ursula Pegg

Ursula Pegg

Please read Ursula’s poetry about CPS.

I am Ursula, 83 years old.  i had a hip replacement in 2004 on the right side, which i call my good side.  the left side is affected by thalamic pain syndrome, also referred to as dejerine roussy syndrome [ed.: also called Central Pain Syndrome].  even many neurologists are not familiar with the syndrome.  it is here to stay with me until i die and was acquired when i was 63, the after effects from a very mild thalamic stroke. all the pills i take only take the edge off the pain.  there is no known cure. it gets worse, as the years go by, and it also affects wider areas on the affected side.  the early focus of mine was the left axilla and the surrounding area, spreading on select areas down the arm and hand, and slowly creeping down the left side into the leg and down.

my neurologist gives me most of the pills i ask for.  i would have been lost through the years if it had not been for the cps alliance correspondence, from where i got most of my ideas of what works and what doesn’t.  i am also a “googler” and research the stuff i take.

in addition to the left hip, my left knee is bothering me quite severely. i hope I can relieve this without a knee replacement, which i would not consider at this time.

at the front is gabapentin, which i have slowly titrated to 3,900 mg per day.  it has no upper limit.

  • i take one lotrel 5/10 for my bp and some cinnamon in the a.m.
  • i take 1-0.5 mg alprasolam for sleep in the evening
  • i take 2 NORCOS a day – they do not offer much pain relief.
  • i take one baby aspirin daily.

i have been mostly housebound.  i read and write a lot.  i have written a lot of poetry.  above all, i have tried to put the suffering of cps into rhyme.

to come to an understanding of the often misdiagnosed syndrome, i have written poems about this suffering and the way it affects our lives.  if you ever have time and, of course, interest, you actually might enjoy the poems giving a broad understanding of what ails us.

Becky Brandt

Becky Brandt

Hi, I’m Becky Brandt. My CPS started 6 years ago after a severe case of Shingles damaged my nervous system. After trying numerous medications and holistic treatments, I found that my best relief comes from oral narcotics, antidepressants and lidocaine patches and cream.  I have completely modified my life to avoid CPS triggers like stress, loud noises, bright lights, tight clothing, heat, cold and vibrations. Other triggers, like changes in the weather & barometric pressure, cannot be avoided and so I have some terrible days where I just try to exist.

As a Nurse/Educator, I’m committed to providing quality CPS information to the medical community, researchers, patients and caregivers who deal with this menacing condition. It is my belief that the CPSF will play a huge role in finding a cure for this disabling disease.

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