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Self Management Navigator Tool – a guide to questions that may need answering

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The painconcern.org.uk have developed a self help sheet to help pain sufferers navigate the questions that you may want to ask during medical appointments

This innovation has been trialled in the UK but the factors involved are universal

You can download the form from the article below, this is a free resource

Self-Management Navigator Tool

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A Matter of Interpretation

Active listen is a skill,  but there are times when even the best of us, can misinterpret what they have heard.

The below article was published by By Carol Levy, PNN Columnist in Aug 2021

I recently read a post in one of the online chronic pain support groups. “Sue” had just left an appointment with her pain management doctor. She was enraged, so angry about the way the meeting had gone, that she went right to her computer and complained about it.

“My doctor asked, ‘What do you think about my lowering the pain meds you’re on?’” Sue wrote.

“How dare he reduce them!” was her response. Sue said the medications were helping her and the doctor had some nerve to ask. All these doctors want to do is hurt us, she wrote, and if it wasn’t for the CDC and FDA, this wouldn’t be happening.

I read her post and was somewhat confounded by her anger. She did not include any information on how the meeting ended. Did he lower her dosage or the number of pills? I could see how upset that would make someone, especially if the drugs were helping.

But he didn’t say, “I am going to lower the level of opiates I am giving you.” He said it in a way that seemed, to me, like he meant to open a discussion.

It reminded me of a difficult crossword puzzle I had just completed. It was so frustrating. I had it all done, but for one four-letter word. The clue was “wind.” All I could think of was “blow,” as in the wind blowing, but the letters didn’t fit.

There was a “C” for the first letter but I could not think of one word that started with “C” that fit the clue. No matter what letters I tried, I could not think of any other answer but “blow.”

Finally, I was able to figure out the word. The answer was “coil.”

“Coil,” I thought. “Oh, for goodness’ sake.”

I was so obsessed with my one interpretation, it never occurred to me to consider another. It wasn’t wind, as in the wind blows. It was wind, as in winding a clock or a windy road.

I think we do this often, and not just with medical people. They make a statement or ask a question that seems clear. But to the listener it carries a whole different meaning.

It’s harder when you’re right there. Reading about it online made it easier for me to see it as the doctor asking, not demanding or insisting. In the heat of the moment, it may well sound like, “I’m not going to help you anymore. I’m stopping the drugs that have been helping you.”

There are crosswords and cross words. Sometimes we have to stop, take a deep breath, and instead of responding with angry or impulsive words, ask for an explanation.

“Are you asking me about lowering my meds or are you telling me you will?”

 If it’s the latter, it may well be the time to be upset. If it’s the former, it’s time to open the discussion.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

 

 

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Chronic Pain – No Longer Normal

Any one living with chronic pain tries to live a normal life.   That idea is really quite absurd because when you are living a life evaluating what you can or can’t do every moment of the day…..clearly you you are not going to fit in the “normal” box

This article was written by By Carol Levy, (PNN Columnist) and I think she describes the challenges really well

A Pained Life: The Blame Game

Do you ever second guess yourself or play the blame game?  I did it again when I found myself doing too much.

While reading, my eye pain from trigeminal neuralgia started to grow and I thought, “Oh heck, I can do one more page.” And with each additional page, I repeated what has become a mantra: “It’s okay. I can do it.”

But of course, I can’t. Not without paying a price.

I finished most of what I wanted to do, my eye pain constantly telling and then yelling at me, “Stop already!”

By the time I gave in and stopped, the level of pain was exquisite. I had no choice but to go to straight to bed, and try not to move my eyes for 15 minutes, if I was lucky, or an hour or more if I was not

I do the same when going outside. I know a breeze, or even worse the wind, will again trigger the pain from trigeminal neuralgia. Any touch to the affected side of my face does. But I so much want to go outside.

“Oh, the wind doesn’t look that bad,” I’ll say to myself as I watch the tree in my backyard swaying from the strength of the wind against it. I go outside, the pain is triggered and I scurry back inside as fast as I can, then wait the 15 minutes to an hour before the pain calms down.

The whole time I lie there and self-flagellate: “I knew to stop, but heaven forbid I should do what I know is right. I knew better. It serves me right.” And so on.

Most people do this kind of thing. “I knew I shouldn’t have eaten that last slice of cake, this stomach ache serves me right.” or “I knew I shouldn’t have made that right turn back there and now I’m lost.”

It’s normal, for everyone but us. Because our lives stopped being “normal” the moment the pain took over. For me, “normal” meant reading for as long as I wanted, even for hours at a time; watching a movie and enjoying the brightness and movements on the screen; walking outside even when the wind is strong; or enjoying the feel of snowflakes falling on my face.

My “normal” for the last few decades has been the exact opposite.

We can’t blame ourselves when normal doesn’t work for us anymore. Our “new normal” is stopping before the pain gets too bad, being honest and saying, “I’m sorry. I can’t do that activity or go with you today.”

To me, my new normal is an awful thing, but the longer I try to deny it, to hold on to my old normal, the harder it is to accept. And it seems there is no time limit for how long you can hold onto the false hope that the old normal will return.

The irony is that the word normal means “standard,” yet everyone’s normal is defined by their own peculiar standards and needs. So, at the end of the day, there is no true normal for anyone but the one measured by their own internal yardstick.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

 

 

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Chronic Pain Infographic

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Many of our learnt reactions have been created from previous experiences, and our brains then program us how to behave.  However we can reprogram our thoughts and reactions with a bit of brain training

Targeted Rewiring
The process of rewiring the neural pathways of chronic
pain requires experimentation, patience, and consistency.
Science-backed techniques,
like those found in the Curable
app, can greatly assist in this
process

This handy Info-graphic produced by Curable gives an insight into the reactions we can change – download from the link below

[Download not found]
We mention the Curable App as one method to help reduce the impact of pain,  there are other apps on the market and we are not endorsing use or purchase

 

 

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Vitamin D Deficiency Linked to Chronic Inflammation

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We are always interested in research which can show what conditions may cause chronic inflammation

Australian Center for Precision Health, University of South Australia Cancer Research Institute,
Adelaide, Australia, 2
South Australian Health and Medical Research Institute, Adelaide, Australia and 3
Population, Policy and Practice, UCL Institute of Child Health, London, UK
*Corresponding author. Australian Center for Precision Health, University of South Australia Cancer Research Institute,
GPO Box 2471, Adelaide, SA 5001, Australia. E-mail: Elina.Hypponen@unisa.edu.au
Received 14 December 2021; Editorial decision 29 March 2022; Accepted 8 April 2022

 

Abstract
Background: Low vitamin D status is often associated with systemic low-grade inflam-
mation as reflected by elevated C-reactive protein (CRP) levels. We investigated the cau-
sality and direction of the association between vitamin D status and CRP using linear and non-linear Mendelian randomization (MR) analyses.

Methods: MR analyses were conducted using data from 294 970 unrelated participants
of White-British ancestry from the UK Biobank. Serum 25-hydroxyvitamin D [25(OH)D] and CRP concentrations were instrumented using 35 and 46 genome-wide significant variants, respectively.

Results: In non-linear MR analysis, genetically predicted serum 25(OH)D had an L-shaped
association with serum CRP, where CRP levels decreased sharply with increasing
25(OH)D concentration for participants within the deficiency range (<25 nmol/L) and lev-
elled off at – 50 nmol/L of 25(OH)D (Pnon-linear ¼ 1.49E-4).

Analyses using several pleiotropy-robust methods provided consistent results in stratified MR analyses, con-
firming the inverse association between 25(OH)D and CRP in the deficiency range
(P ¼ 1.10E-05) but not with higher concentrations. Neither linear or non-linear MR analysis supported a causal effect of serum CRP level on 25(OH)D concentration (Plinear ¼ 0.32 and Pnon-linear ¼ 0.76).
Conclusion: The observed association between 25(OH)D and CRP is likely to be caused by vitamin D deficiency.

Correction of low vitamin D status may reduce chronic inflammation.
Key words: Non-linear Mendelian randomization, vitamin D, serum 25-hydroxyvitamin D concentration, C-reactive
protein, chronic inflammation

 

The full study can be read below

[Download not found]
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Denise Drysdale talks about her Diagnosis with Trigeminal Neuralgia

We are delighted that Denise Drysdale is raising awareness, by talking about her Diagnosis with Trigeminal Neuralgia.

It is also wonderful to hear that she underwent surgery with Dr Ben Jonker who is one of our Medical Advisory Board Neurosurgeons

The article below was written for Woman’s Day

EXCLUSIVE: Aussie TV treasure Denise Drysdale opens up about her year from hell and secret brain surgery

Article from Women’s Day published on Aug 8th 2022

”I haven’t really laughed in over a year – my life had become a nightmare of agonising pain and fear.”

As she welcomes Woman’s Day into her Gold Coast home, Denise Drysdale is not only jumping with joy but her irrepressible sense of humour is back with a vengeance!

It’s been a long time coming for Denise, 73, who, in her first interview since vanishing from the spotlight, opens about her harrowing health crisis and life-changing brain surgery.

“It’s great to be laughing again. I haven’t really laughed in over a year – my life had become a nightmare of agonising pain and fear,” confesses the two-time TV WEEK Gold Logie winner.

For the past 13 months the usually upbeat star had been grappling with the immensely painful facial condition trigeminal neuralgia (TN).

In May 2021 “Ding Dong” experienced her first TN flare-up, something she says she’ll never forget. Describing the pain as “unbearable” and “searing”, Denise reveals it became so intense she struggled to breathe.

“It was like a white-hot lightning bolt that would shoot across my face. The tiniest thing set it off, like smiling, brushing your teeth or hair, or blowing your nose.”

The star says the agonising episodes became more excruciating and frequent, and she would experience around five attacks a day.

So bad did things become, Denise struggled to get up in the morning.

“I would inch myself up slowly, so as not to trigger it off. There were times I’d burst into tears, fearful of when it would next strike,” she says.

“Stupidly, I thought it would work itself out. I’m a stoic person and very little rattles me. I was hoping it would just go away, but it didn’t.”

Feeling increasingly anxious, Denise says she withdrew from life, stopped seeing friends, turned down work and holed herself up at home, dreading the next agonising spasm.

“It became so debilitating that I bit the bullet – I was referred to a specialist, who diagnosed trigeminal neuralgia.

But worst of all? “I couldn’t remove the cork from a bottle of bubbly!”

Following Denise’s TN diagnosis, she underwent regular acupuncture therapy, which provided some pain relief but was not a cure.

“In September last year I was taken to a Gold Coast hospital by my eldest son Rob, who found me writhing in agony.”

At times, Denise admits she sunk into a terrible depression. “I feared the crippling pain was going to be my life. That I couldn’t go out, couldn’t have fun with friends, couldn’t smile, couldn’t cuddle my grandkids or go to work.”

Denise kept her painful ordeal quiet for fear of being seen as a hypochondriac.

“I seemed to be lurching from one medical horror to the next, and thought people would be sick to death of hearing about my latest malady.

“To know my two boys, Rob and Pete, were worried sick upset me,” she says, noting that when her eldest grandson Bodhi, 10, remarked, ‘Nanny, I wish you weren’t in pain,'” she burst into tears.

Denise was told by her TN specialist that brain surgery was the best bet in terms of finding lasting relief.

“The notion of brain surgery terrified me. But I’d tried everything else, from medication to an array of other treatments. In utter despair I agreed to fly to Sydney to undergo the surgery, which I did in June.

“The surgery lasted two-and-a-half hours, and it left me with a small scar at the base of my head near my right ear, which is now healing beautifully. Dr Ben Jonker, my neurosurgeon, must have learned sewing from the nuns,” she chuckles.

“From the moment the anaesthesia wore off, I felt different and there was no pain. I couldn’t believe it.  Over a month on still no pain. I’ve got my fun-filled old life back.”

Indeed, Denise has emerged from a complete nightmare and is confident in saying there’s a sense of normalcy again.

“My energy is back and it’s fabulous to play with my grandkids, Bodhi, Xavier and Heidi. To cuddle my darling fluffball Mr DD. To be back in the kitchen cooking for my family. To be enjoying life again.

“My message to anyone suffering horrendous pain is go and see a doctor. Don’t put it off. If you’re diagnosed with TN, do your research – there are some terrific support groups that provide invaluable assistance – and try to find the best neurologist you can.

“There’s no need to suffer in silence. I learned that lesson the hard way.”

 

Denise Drysdale talks about her Diagnosis of Trigeminal Neuralgia

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Member Story – Sarah Wilkinson

I was diagnosed with Trigeminal Neuralgia when I was 25 in 2020 and have been experiencing a milder version of  the pain from as early as 2016. I can recall having a slight pain, an aching/ throbbing sensation that would begin in my ear and spread to my jaw. This recurring pain resulted in visits […]
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