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Trigeminal Neuralgia Awareness

Trigeminal Neuralgia Awareness is so important to our people who live with this condition.

The huge impacts it has, not only on the person diagnosed, but the extended family.  Everything changes…..not just coping with pain, but family relationships, dealing with anxiety and depression and feelings of self worth.  Many have to give up work or find acceptance that full employment will no longer be possible.  There is grief, there is anger, there is pain…..

We recently connected with the family that is behind this Instagram account promoting trigeminal neuralgia awareness.  They have been hugely successful in using their account to raise awareness with over 3,000 followers.

Maria who lives in Sydney, has been kind enough to tell us her story and the reason they created their Instagram account.

Hi, I would love the opportunity to connect with your members, via your socials and website, as well as, being mentioned on your monthly newsletter. I wanted to take this opportunity to thank you, as raising awareness is so important. TN sufferers deserve to be heard, and raising awareness is very important to me. Please feel free to reach out. Kind Regards, Maria

This page was started by my
daughter a few years ago, and it was a way for her to educate herself about TN, and be able to support others. My husband suffered a catastrophic work accident in 2016, resulting in the loss of his eye, and facial nerve damage. It wasn’t until we started googling his horrific pain symptoms, and discussions with many Specialists, we came to discover, that TN was not only going to turn my husbands life upside down, but also take us along for the horrific ride. As a mother of three beautiful daughters, all of whom are very active on this page, we’ve come to accept, that the husband, and father that we’ve known, can never be the same. We never realised how many people in the world suffer this debilitating pain, often referred to as the “suicide disease.” The members on this page deserve to be heard, and has shown how important it is for us to raise awareness, and find a cure.

Maria and her daughters post inspirational quotes and information on their Instagram account

https://www.instagram.com/p/CuN1O_tvNFu/?igshid=MmU2YjMzNjRlOQ==

Our Association does not currently have a volunteer to create and manage an Instagram account.  If you are creative and would like to run an Instagram account for us to help raise awareness, please email

membership@tnaaustralia.org.au

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6.4 Pharmacology of Cannabis

FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 6.4 Pharmacology of Cannabis Thomas P. Donia, (consulting pharmacist at TerraVida Holistic Centers in the USA and former Vice President of the American Society of Cannabis Pharmacists.) Medical cannabis has provided a safe and effective alternative for thousands of chronic pain sufferers […]
To access this post, you must purchase TNA Australia Full Member.
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50 ways to live well, despite chronic pain

Do you ever struggle to plan how to live well despite chronic pain?

The following list was taken from resources available on the Chronic Pain Champions website.  The Founder is Tom Bowen

Hello, I’m Tom Bowen.

My chronic pain journey started in January 2009 after surgery left me with nerve pain.

When I first experienced symptoms I had a tough time adjusting to them. I let them control me, instead of me controlling them. They affected my life, my family, my friends, my job, and my activities. No different than others facing the same challenges.  Read More

50 ways to live well, despite chronic pain
What’s in your toolbox?

Google symptoms
1. Take responsibility for your pain
2. Learn about pain
3. Get out of bed and start your day
4. Reduce stress
5. Avoid negativity
6. Challenge and replace unhelpful thoughts
7. Use positive self-talk – stay positive
8. Reduce focus on the pain
9. Be kind to yourself and others
10. Moderate activity – pace yourself
11. Do muscle relaxation
(passive/progressive)
12. Be mindful and grateful
13. Change expectations
14. Journal/write (but don’t track pain)
15. Laugh frequently
16. Breathe deep and slow
17. Reduce use of unnecessary and unsafe
medication

Medication meme
18. Say “I can do this”
19. Maintain good sleep habits
20. Avoid pain behaviors
21. Start moving (walk and other exercise)
22. Smile
23. Listen to music
24. Reward yourself
25. Create a daily plan
26. Modify activity to make things easier
27. Get out of the house – enjoy nature
28. Give and get hugs
29. Be a role model
30. Limit napping
31. Say no
32. Do Tai Chi
33. Take a break from the news and social
media
34. Try easy yoga
35. Don’t allow yourself to be a victim

Cat meme
36. Pet a dog or cat
37. Avoid catastrophizing – don’t ruminate
or wallow
38. Be a friend
39. Volunteer
40. Play a game
41. Do art
42. Set S.M.A.R.T. goals
43. Forgive someone (including yourself)
44. Stretch
45. Eat healthy
46. Watch a movie
47. Do random acts of kindness
48. Visit with a friend
49. Meditate
50. Attend a pain rehabilitation program

Download this free E-BOOK Chronic Pain Won't Stop Me

Visit chronicpaincpainchampions to get more information and resources

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Trigeminal Neuralgia Pain Can Ruin a Life

The following story may contain uncomfortable triggers.  For support, contact Lifeline 13 11 14 or beyondblue 1300 224 636

Trigeminal neuralgia pain can ruin a life. The following story was written by Penelope Debelle for SA Weekend – 21 min read November 14, 2014 – 11:41PM See our LINKS page for mental health organisations

The secret agony of jewellery designer and philanthropist Ann Middleton

JEWELLERY designer Ann Middleton was the life of the party but behind her smile lay a pain she could bear no more.

IT was Friday, July 25. Ann Middleton, the jewellery designer whose Burnside shop, Chez Jewels, has a clientele of a certain kind, checked into a luxury high-rise hotel on the Gold Coast. She had a small bag and told reception she would be there for a night, possibly two. I’ll see how I go, she said.

In her room the airconditioning was up too high so she asked that it be turned down. Then she requested a glass of wine and one was brought up to her room. By the time the concierge clocked off 15 minutes later, someone had jumped from the building. It was Middleton.

“She just got up there and … hmmmm …” Brother Phil McMahon’s voice trails off as he contemplates what his sister went through. Middleton had rung him the night before for a chat which had taken on new significance.

“We talked about a lot of stuff actually,” says McMahon, a real estate identity as well known in his field as Middleton was in hers. “She got really spiritual, that was Thursday night.”

On the day, Middleton told the girl who ran her high-end Gold Coast shop, Marina Mirage Boutique, she had to go to hospital because she was in so much pain. Instead, she went to lunch with a client then checked into the hotel.

“It wouldn’t have been impulsive,” McMahon says. “There’d been signals all the way along. She was always saying ‘I love you’. ‘Yes, I love you too.’ ‘No, I really, really do, you know that don’t you?’ That was said in the last phone call.”

Middleton suffered from face pain brought on by a condition known as trigeminal neuralgia. All neuralgias are bad because they involve paroxysms of pain along a nerve. It isn’t the chronica che of a bad back or the searing, localised hurt of an open wound. It is the agonising exposed pain you get fleetingly when the dentist hits a nerve and sends you almost into shock. An instant of it can leave you gasping. Trigeminal neuralgia, which affects the branching nerves that enclose the face — including the nose, lips, ears, tongue, jaws and teeth — is so severe the sufferer feels as though they are being struck by lightning, again and again. The merest touch of the skin triggers blinding pain.

“I’d wake up in the morning, jump in the shower and just the water on my face would set it off,” says Kent Parkin, a real estate agent based in Mt Barker. “I hate to say it, but I can understand why she jumped.”

It is known as the suicide disease because exhausted sufferers like Middleton choose oblivion over the agony of living. Yet her death was a shock to many. She was the epitome of a successful woman with a resume that went back to being a champion ping pong player, touring with the Australian table tennis team in 1971. She became jewellery maker to the elite, our own Queen of Diamonds who led a dazzling life making stunning, extravagant pieces, some of them worth more than $1 million each. She had a large international clientele and made bespoke items from 20 carat topaz gems or pink sapphires or Argyle diamonds or South Sea pearls for royalty in Brunei, Thailand and Malaysia. Champagne aloft, she was photographed with Bill Clinton, Olivia Newton-John and Ian Thorpe, and was a charity regular and a favourite of the ladies who lunch. In 1994 she was South Australian of the Year and in 2006 she received the Order of Australia, a year after she moved from Adelaide to the Gold Coast.

Three years ago she began to worry that she was sick. Suffering from abdominal bloating and pain, she thought it might be a food allergy. After six months of discomfort she was diagnosed with uterine cancer and had a hysterectomy. She had a longstanding sensitivity to light and not long after the surgery began experiencing early symptoms of trigeminal neuralgia; an intermittent burning sensation at the back of her head and from the forehead down. Fearing the problem was dental — trigeminal neuralgia can be tricky to diagnose — she had a tooth implant removed. As it worsened, she sought help from a range of medical specialists. In Queensland she saw an eye specialist whose injection into her neck seemed to make things worse. Then she saw an Adelaide specialist who drilled in to try and cauterise the trigeminal nerve.

“She came out of that worse,” says McMahon. “After that, any time anyone touched her she was in quite a bit of strife. It had nothing to do with the cancer surgery; that was unrelated.”

She tried not to complain. Whether you are consumed by dire pain or not, there is only so much someone else can do. For two years she hid it as much as she could, flying to Adelaide to see friends and distracting herself with friends and work and dinners.

In 2001 she had sold Chez Jewels to businessman Robert Gerard but kept working as a jewellery designer and ran the store on the Gold Coast. She was ebullient and full of life and worked hard for charity, even when planning her death. She tried pain clinics and spent time practising relaxation techniques at her friend Olivia Newton-John’s retreat. She tried opiates but they made her sick. The pain was always bad but for the last six months became more intense. Towards the end, there was little else she could talk about, at least to close family and friends. She withdrew into herself. Her first husband, the father of her adored son Jamie, supported her and she would stay with him on Adelaide visits. She socialised but her world was shrinking and at its centre was the pain.

“She loved her glass of champagne, it made her feel better, but in the end that didn’t work either,” McMahon says.

Her affliction is not rare but it is uncommon. An Adelaide oral and maxillofacial specialist sees about 500 people a year with face pain, about 50 to 75 of whom will have trigeminal neuralgia. Interestingly, one way to diagnose it is that, unlike toothache, the pain goes quiet at night and doesn’t disrupt sleep. Ninety per cent of cases are successfully treated with antineuralgic medication like Tegretol. It’s not a cure but keeps it under control. With the other 10 per cent, surgical intervention can help.

It is difficult for sufferers to explain just how bad it is. Kent Parkin spent months thinking the source of his pain was dental, visiting specialists and buying mouthguards hoping it was related to a lifelong habit of clenching his teeth. Nothing worked as the pain progressed from occasional bouts to an entrenched agony that left him pressing so hard on his cheek he broke blood vessels. “You can describe it to people but it’s so hard,” he says. “It’s like an electric shock but it doesn’t stop. I say to people, imagine dissecting a nerve out of your face then getting a knife and twisting it. The pain is so bad they call it the suicide disease. When you do research on the net, that’s how people refer to it.”

He was managing a company that supplied GPS equipment to the mining industry and would sit still in meetings, unable to speak while waves of pain coursed through his face. He tried prescription medication and neural dampeners like Endone but nothing touched it. In despair one day he called his sister who took him to a doctor at Brighton.

“I’m sitting there saying ‘I’m going crazy, I’m just going to bloody shoot myself’,” he says.

He was given morphine, which helped for about an hour. Later that night he went to Ashford Hospital and got a bigger dose that let him get home and sleep. The hospital referred him to a maxillofacial surgeon who the next day gave him a neural block that stopped the pain entirely.

“Before he pulled the needle out I said to him, ‘are you going to be embarrassed if I get out of the chair and kiss you?’ Because the pain just went. It numbed the entire bottom of my face.”

It broke the cycle for a couple of days but by now Parkin was convinced he had trigeminal neuralgia. He was referred to a neurosurgeon at the RAH who ordered an MRI. Parkin tore open the notes and read that there was nothing abnormal to be seen.

“I took it in to (the neurosurgeon) and said, ‘they’ve said there’s nothing’. He holds the film up and says ‘bullshit, they don’t know what they’re looking for. That’s your problem’.”

At the base of his brain a blood vessel was rubbing against one of the branched facial nerves, wearing away the nerve’s protective sheath. The specialist recommended surgery to insert a piece of Teflon between them.

Parkin went to Memorial Hospital in July 2012. At 6am the surgeon told him they were going in, in an hour. Three things could happen, he said: You could end up with numbness on the side of your face, you could have a stroke, or it could be a complete disaster and you could die.

“At that point in time, with what I’d been going through, as far as I was concerned I didn’t care what was going to happen as long as I got rid of the bloody pain,” he says. “It was just horrendous.”

The surgery worked although not without complications. With staples in his head, but free of the neuralgic pain, Parkin went home. He was relieved beyond comprehension. Days later he was back in hospital after brain fluid began dripping from his nose. He had a spinal tap that reduced the fluid but four days later it began dripping again. He needed more surgery. When the surgeon sewed up the dura membrane that encloses the brain, a tiny pinhole was left, enough to allow fluid to leak out. He was also becoming sensitive to light.

The pinhole was sealed but two days later he began a course of heavy-duty intravenous antibiotics; he had contracted bacterial meningitis, probably a hospital acquired infection. Six weeks later he was attending meetings with a pump in his pocket discharging intravenous antibiotics. He was unlucky, but grateful. Two years later, he is pain free but can’t say the words without a “touch wood” for luck. He has his life back.

“When they say it’s a suicide disease, I can understand it,” he says. “You can’t live with it. The pain is so intense. What are you going to do? Stay in hospital on a morphine drip?”

Those who loved Middleton are left haunted by the thought of “what if?” What if she had hung in there for another week or month and found a doctor who could help? What if she had found some way of learning how to live with chronic pain?

Professor Lorimer Moseley, who works in clinical neurosciences at UniSA and studies the role of the brain and mind in chronic pain disorders, says he understands that some people feel it is better to die than live with so much pain. In his experience, nerve pain often seems to be the worse. This includes trigeminal neuralgia but also testicular neuritis or pain after a motorbike accident that has damaged peripheral nerves in some way. Sometimes stroke victims also experience unbearable full body pain.

After 20 years of research, he is convinced that when people say “it’s all in your mind” they are more right than they know.

“Pain is not like a disease process where you can see the thickening of the arteries or plaque on the brain,” he says. “Pain is the experience that is produced entirely by the mind. That’s a really difficult thing to conceptualise because it feels so strongly that it’s in the body.”

In Moseley’s view all pain, 100 per cent of the time, is produced by the brain as a way of making you protect that part of your body, even when — as in the case of phantom pain in an amputated limb — there is nothing to protect. An entrenched affliction like trigeminal neuralgia is a prime example of pain being produced when there is nothing tangible for the body to protect. From this flows the potentially fruitful step of training the mind not to produce that pain any more.

“I am one of many people around the world who are trying to work out ways to make it do that,” he says. “We need to train the brain to change its mind over protection.”

In a case of trigeminal neuralgia, the aim would be to train the brain to stop reacting to danger messages from the trigeminal nerve. Moseley says progress has been made in changing the way people think about their pain and helping them understand what their pain means.

It is no magic bullet. There is no cure. It is a process of rehabilitation, not a treatment, and involves a team of people including a physiotherapist and a psychologist who can help teach tricks to get the brain coping differently. For the first time, researchers like Moseley are feeling positive about their hopes for those who suffer from chronic pain, and there are many of them.

Living with pain is not a catastrophe that affects just a small number of people. Moseley says it is the nation’s most burdensome health issue, more costly in lost productivity than cancer and diabetes combined. In the top 10 of the world’s most burdensome diseases, chronic pain disorders occupy the first, fourth and eighth place.

Yet with all the guarded hope that pain research brings, there will still be individuals for whom no help will be found. “There are tragedies everywhere,” Moseley says. “Ann is one person but I could reel off 20 people I have known who have killed themselves because of unbearable pain.”

Her brother wonders if maybe Middleton knew too much, that she went to too many doctors and knew so much about her condition that it drove her down. McMahon would try to be positive and tell her she would get better and the pain wouldn’t kill her, even if it got worse. Other people have recovered and he worries that with Middleton, something was missing.

“My mate’s father had trigeminal neuralgia in his 80s and said to his son ‘kill me’. Then they found a tablet that worked,” he says. “A CIB (policeman) on the Gold Coast told me there was a lady, a devout Christian, who had it and she went to (euthanasia adviser Dr Philip) Nitschke then decided no, it’s against her beliefs. Five days later she found someone who helped.”

He is not critical of the medical profession but thinks there should be a central register where people like Middleton can go for up-to-date, reliable information on best practice treatments. She saw so many doctors yet none of them could help her. “She was looking for a Dr House; we laughed about that,” McMahon says. “I can’t explain any of this. It’s a real mystery to me.”

For support, contact Lifeline 13 11 14 or beyondblue 1300 224 636

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Julian Whittaker – Frozen in Fear – Waiting

One of our members has written an article which describes how he feels about the impact that trigeminal neuralgia has on him.

Frozen in fear. Waiting…by Julian Whittaker

All is fine in your world, as if Trigeminal Neuralgia was a myth.

The day is going well, but in the back of your mind you know anytime the evil thing can hit like a freight-train. Pain like you’ve never dreamed possible. Suddenly attacking out of nowhere, like a dozen white-hot electrically charged needles plunging into your face.

Then, almost as quickly as it arrives, it departs, after perhaps 10 seconds, maybe 20 or 30 seconds of agony. Screaming rolling on the floor pain. After minutes you’ve recovered, but you’re absolutely shaken.

The slightest breeze or lightest touch somewhere on your face can set it off, but where, when? That’s where the fear comes in. Expecting it.

Sometimes you wake in the morning frozen, knowing that any movement could set it off. You’re lying on your left arm which has gone numb, but you’re unable to turnover or move a muscle for fear of setting the pain off, (you’ll feel that dead arm all day, and the next too!).

You can just lay there, but you know you have to make a move eventually, aware that the electric-shock needles will then hit you, eventually you have to take a plunge into the pain.

I had a big ‘hit’ today, completely out of the blue, ironically just an hour before an appointment with my neurosurgeon who, 7 months ago operated using the ‘R F Ablation’ technique. This gave me 7 months free of the pain, which was a blessing, but I knew the procedure probably wouldn’t be a permanent cure. In the meantime, I thank ‘Trileptal’ for intercepting the pain. But…

…It’s back.

This is the reality for many of our members who are struggling to understand their pain, have not yet seen a neurologist, or who don’t have an operable option, or who don’t have good pain management plans, and who sometimes, just aren’t believed.

We have to raise our voices, describe, educate, provide information, support and find a permanent cure.

 

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How to Support a Partner with Chronic Pain

The question is often raised at our support group meetings – how can I support my partner with chronic pain.  It is so hard to watch someone you love cope every day with debilitating pain.

Oh if only you had a magic wand.  How many of us go to bed thinking, “maybe tomorrow they will wake up and the pain will be gone”.

Oh course always have hope, but while we wait for a miracle or a treatment that works for our partners particular circumstances, what can we do?

Supporting a partner or loved one with chronic pain is difficult. Whether you’re having to cope with the transition from being pain free, or entering into a relationship with someone suffering from an existing condition, you’re still going to have to learn a whole new set of skills if you’re going to make the best out of what can at times be a difficult situation.

15 Ways To Support A Partner With Chronic Pain

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How to Help People With Chronic Pain or Illness

This article was written by Liz the owner of the Despite Pain Blog .  The article contains links to other content that you may find useful.

Liz suffers from scoliosis (a curvature of her spine) when she was about ten years old. Initially, the orthopaedic surgeon said it was a cosmetic problem and no surgery was needed. But it wasn’t just a cosmetic problem. It started causing chronic back and rib pain when she was a teenager. The scoliosis worsened and when she was eventually referred to see a specialist, he could do nothing to help. Her pain continued to worsen, became constant and eventually, when she was 28, she had to retire from work.

Her back pain was chronic and disabling, but she lived with another pain condition that is just as debilitating. Trigeminal neuralgia, which causes severe facial pain. For an unknown reason, the trigeminal nerves in her face send pain signals to her brain.

In 2017, she was also diagnosed with the autoimmune condition, coeliac disease.

She has lived with chronic pain for most of her life, but try’s to keep smiling.

Click here to find out more about Liz.

10 Suggestions on How to Help People with Chronic Pain or Chronic Illness

If you have a friend or relative who lives with chronic pain or a chronic illness, the following suggestions are ways in which you could possibly provide physical help and support.

1. Believe Them

Believing them is the most important and supportive way to help people with chronic pain or illness.

Believe them when they tell you about their pain or illness. Believe them if they tell you that their life is difficult and that they’re struggling to cope. Believe them when they say their pain is off the charts. Believe them when they say they feel depressed. Please, never doubt them.

They need your empathy and understanding and that starts by letting them know that you believe them.

2. Listen to Them

Listen to them. Really listen.

If you ask them how they are feeling, please listen to the answer. There’s no point in asking otherwise.

Tell them that you are there if they want to vent. Many people feel they can’t or shouldn’t do that so tell them that you don’t mind listening.

They might say they’re fine when you know they’re not. So say, “I know you say you’re fine, but it’s okay to be honest with me.” If they still say they’re fine, don’t push it. Some people simply don’t like talking about their health or they might not be in the mood for opening up.

Never repeat what they tell you – if they feel comfortable enough to talk to you, don’t betray them by repeating what they say to others. You’ve gained their trust so don’t lose it.

3. Learn About Their Condition

Try to learn about their condition and how it affects them so that you understand more. I’m not suggesting you need to learn enough to obtain a medical degree, but if you learn a little bit, it will let them see that you are actually interested rather than being there out of a sense of duty.

4. Empathise

Empathise with them, but don’t tell them you know exactly how they feel. You might get an occasional bad headache, but that’s not the same as living with trigeminal neuralgia or chronic debilitating migraines. Even if you suffer from the same condition, everyone’s experience is different so, in reality, you don’t really know exactly how they feel. Empathise and tell them that you appreciate that their life can’t be easy.

5. Be There

Living with chronic pain or chronic illness can be a lonely life. Sometimes people just need a friend so give them your time.

They don’t need or want to talk about their pain or illness all the time. They don’t want pity or sympathy. Nor do they want to be treated with kid gloves and they do not expect you to be a nursemaid. They want to feel normal, do normal things and have normal chit-chat with you.

They need distractions from their health. You could share a meal with them, help them with a hobby or just sit with them to play a board game or enjoy a movie together. You could take them for a drive, go for a walk or take them shopping if they’re able. If you do this, please go at their pace so they don’t feel as though they’re holding you back, otherwise they will feel guilty. Talk about other things, including yourself. Talk about your own troubles if you have any because they still care about what’s going on in your life.

6. Help with Appointments

Offer to take them to their medical appointments. They might need your help getting there or they might be grateful for some moral support or an extra pair of ears during the appointment.

7. Offer Practical Help

Living with chronic pain or illness is debilitating, therefore simple tasks are often more like huge, possibly impossible, chores. They might be grateful for your help with some basic housework, making a meal or doing some shopping. Or perhaps you could help by picking their kids up from school or walking their dog occasionally.

But be tactful about how you offer your help as it may be construed as criticism.

For example, don’t tell them that their house needs to be cleaned. Instead, tell them that you realise that some chores must be extremely difficult due to their pain or illness, and you’d be happy to help out with something they find too difficult.

Try to offer help in a way that it’s easier for them to accept. For example, say, “I will be at the supermarket tomorrow, so it will be easy to pick up some shopping for you while I’m there.” That way, they know that you are already going to the supermarket, so you aren’t going out of your way just for them.

Offer help but try to understand if your kind offer is turned down. They might feel embarrassed, or they may still want independence so if they repeatedly say they don’t need or want your help, accept that and back off. Rather than be upset or take offence, simply tell them that you’re there if they ever need you.

8. Be Inclusive

When people are living with pain or illness, they might not be well enough to attend social events but please invite them anyway. They might not be well enough to come to your birthday party or to meet for coffee, but they also don’t like to feel excluded, so invite them and let them decide.

If they say yes, they might have to cancel or leave early due to their illness getting in the way. If that happens, don’t take it personally. Try to understand that it’s out of their control and accept that their health can be unpredictable. They are probably embarrassed and annoyed with themselves, so a little understanding will go a long way.

9. Don’t…

There are a lot of things you shouldn’t do or say. Here are a few:

    • Please don’t abandon them. Their pain or illness might get in the way, but they still value and want the relationship they have with you.
    • Never suggest that they shouldn’t take their medication or that they take too much. If you have a serious concern that it could be making them ill, suggest they speak to their doctor.
    • Don’t insinuate that they can’t be trying hard enough by telling them that your amazing friend has the same condition but is able to do so much more than them.
    • Don’t minimise their pain or illness by saying things like, “Well, it could be worse…” or “At least it’s not cancer.”
    • Don’t be dismissive of their symptoms or feelings and don’t tell them how
    • they should feel. Their pain or illness is real. Their feelings are real and valid.
    • Never suggest that they just need to give themselves a shake, pray a bit harder, go for a brisk walk or be more positive in order to feel better. Statements like that undermine them and their condition. They are also patronising and extremely rude.
    • Avoid suggesting strange herbal concoctions which are advertised online. Most of those strange herbal concoctions are expensive snake oil cures.
    • And please don’t suggest that they drink a kale and turmeric smoothie to cure their ills. If you do, you might get said smoothie tipped over your head.

10.Bring Chocolate

Unlike kale and turmeric smoothies, chocolate is nearly always welcome. So, bring on the chocolate. Or cake. That works too.

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President’s Monthly Musings – Aug 2022 – Quality of Life

Welcome to my president’s monthly musings article, I hope my perspective helps in your quality of life goals.

We are currently on a weeks break in Evans Head In Northern NSW, one of our favourite places to bring our caravan, and we all need to find a place, could be next door or down the street, to give us a break, even if only for 15 minutes.  The campsite we use  has everything we need and is right next to the beach and with new roads it is a 2 hour trip from home

It is so important to do what you can to improve physical and mental health and this place is a little slice of heaven so it feels impossible to be miserable here

Patrick my husband has always loved the water, preferably the sea but a river or a lake will do.  He has always been a super active man, serving in the British Army for 9 years, competing in marathons, just a few seconds off cracking the 3 hour marathon back in the day.  Then came his Martial Arts period where he achieved a Black Belt in Jujitsu.  Then to challenge himself further, he took up triathlon competing and then competed in the longest day Iron Man challenge of swimming 2.4 miles, 112 mile bike ride followed by a 26.22 mile run.   Not without drama and the devastation of a fall from his bike which stuck his railing in a high gear for most of the ride.  Damn the rain, but he didn’t give up, upset that he didn’t get the time he wanted, but came in under 13 hours.  Imagine the sheer determination that must have taken

When we arrived in Australia in 2002 he was looking forward to competing in the local Gold Coast triathlon scene….but then he was diagnosed with a stuffed hip….so running was out of the question, so he turned to surfing.  Two hip replacements later and the busyness of life, career and family, surfing stood the test of time.  Any time Patrick can get into the water he is a happy man

And then came a whole load of medical conditions that it seems unfair one person has to carry, psoriatic arthritis, peripheral neuropathy, carpel tunnel in both wrists and bilateral Trigeminal Neuralgia.  Of course diagnosis was difficult due to the complexities of other conditions, and  all through these difficult years, Patrick has found his happy place in the water.  Whether he is in pain or not, he gets up and surfs most week days (weekends are too crowded), and if the surf is bad he joins me on my morning walk up the hill, and has recently discovered wake boarding

I was walking the beach today while he surfed, the expanse of sand practically empty of people, a few gulls and the odd person walking their dog.  I was listening to the sea , waves crashing,  sand sucking, water lapping around my ankles, and I sighed deeply, just letting the moment transport me into happy thoughts

It got me thinking about how our brains fight against us to present us with unhelpful thoughts or remind us of our hard time or our failures.  I have recently been doing some research on Psychology and Cognitive Behaviour Therapy to provide training aids for our Support Group Leaders, and that process has shown me the power of positive thought or happy memories.  It is so hard to be positive when you are succumbing to chronic pain every day, but it may be easier to focus on better times or things that make you happy

We sat with a glass of wine yesterday and recounted some of our high spots things we have done, laughed about our silliness and just revelled in remembering those times.  It was fun and took our minds off the pain and things that have to get done.

Recently when I dropped into our sons house (we live on the same property so that can be a daily occurrence), I noticed he had a rotating file of pictures of himself and his family doing fun things – laughing – living accompanied by the music he is into right now.  I said “wow that’s cool I love that”, and he said “yes it reminds me of how far we have come, and the great times we have had, it makes me happy”, “I keep moving onto the next project and don’t take time to just enjoy the past so this makes me appreciate life”.   Thankfully he is in good health – although he laughingly threatens his Dad not to have passed all the bad genes to him

I don’t suffer chronic pain, but as a family it confronts us everyday, I just wish I had a magic wand…..

So the power of music, pictures, memories all have been linked to positive and happy thoughts which help you cope and improve mental health.  Time to bring out the music you love,  print out some happy pictures and put them on the fridge, or get your tech savvy youngsters to set up your digital photos to scroll your TV.  Take time out to remember happy memories and go to places that just make your heart sing

The sound of the ocean – just makes us happy nothing else matters 

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Presentation by Karen Smith – Her experiences living with Chronic Pain

Karen Smith advocates for chronic pain sufferers in Canada, and shares her personal story in this presentation.

In this video she describes the impact on her, from other peoples reaction to her, when she discloses she lives with chronic pain.  In her case she suffers from a debilitating back injury, but I think her observations are true for all sufferers of invisible chronic pain conditions

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What Patients Need To Know About the Differential Diagnosis Of Facial Pain

The Facial Pain Organisation has released the next presentation from the Conference held in January 2022

The presentation is by Dr Donald Nixdorf and is packed with really useful tips how to communicate with your care providers, and some of the issues that are encountered not only from the patients perspective, but from the clinicians view too

Dr. Nixdorf is a Professor and Director of the Division of TMD & Orofacial Pain. His clinical and teaching interests include the diagnosis and management of chronic TMD pain, headaches and neuropathic pain. His research is focused on the topic of persistent non-odontogenic “tooth” pain, looking at issues related to classification (e.g., consensus building), diagnosis (e.g., development of criteria, imaging, screening questionnaires), epidemiology, (e.g., determining predictive factors, assessing of impact), exploration of mechanisms (e.g., sensory testing, functional imaging), and treatment options.

Dr Nixdorf clearly describes how miscommunication can prevent a positive outcome in diagnosis and treatment

One of his major tips for orofacial pain sufferers, is to create a timeline of what has happened to you

  1. When did the pain start
  2. What medical practitioner have you seen
  3. Have you had the help of a clinical psychologist
  4. What medications have you taken
  5. Did they work and for how long

He was clear that the timeline did not have to be 100% accurate, nor did you need to compile a huge novel.  What is important, is in order for your practitioner to help they need guiding to the bullseye, so when they offer a diagnosis, it is not a scattergun approach

We do know that when dealing with chronic pain it is difficult to remember or organise thoughts, so perhaps when you are have a good day, start the process of recording your journey

Trust is so important when you are on the diagnosis journey, so everything you can do to help your practitioner get to the root of the problem will build trust between you

We have loaded this excellent presentation onto our Digital Outreach and Training /  Video Presentations and urge all sufferers to take the time and watch this presentation.

Watch Video 010

If you are not a member, then head over to the Facial Pain Associations site

Home – Facial Pain Association (facepain.org)