If you are part of a family where pain management is a big issue you might be interested in a one day conference that is coming up in Melbourne in April.

Arthritis Victoria have arranged some excellent speakers to deliver the most up to date information about pain and how it is best managed.

Presentions

• Dr Malcolm Hogg, the Head of Pain Services at Melbourne Health will talk about the current understanding and science behind pain in our bodies, why we experience pain, and the different levels of pain we experience.
• Professor Michael Nicholas will talk about managing your pain and will provide practical strategies and methods on how to manage your pain.
• The final presentation will be focusing on communicating your pain – how to communicate effectively to health professionals and others about the level of pain you are dealing with.
• The day will conclude with a panel discussion with experts from the day, where you are able to ask questions.

Date Sunday 1 April 2012

Time 10.00am to 4.00pm

Venue Melbourne Convention Centre, Melbourne

Cost – includes lunch

• $20 AV members
• $30 non-members
• $10 carers

Enquiries  telephone 03 8531 8000 or 1800 011 041 (toll free for country callers)

Registration
Program Administrator, Arthritis Victoria, PO Box 130, Caulfield South, Victoria 3162
Fax: (03) 9530 0228 Email: programs@arthritisvic.org.au

Click here for Pain Conference Informaton Sheet.

I’ve had an interesting comment on my recent blog post about chronic fatigue that has got me seriously thinking about what is on my bathroom shelf. Here is the comment from Matt.

“I think that a lot of chronic fatigue syndrome (cfs) is caused by exposure to hydrocarbons. In my case minor dizzy spells induced by levels of 4-6ppm formaldehyde produced cfs and sleep disorder symptoms.”

I googled formaldehyde to see if there were potential exposures that would be specific to my teenage daughter.

I found that formaldehyde is used in “cosmetics and personal care products, such as cleansers, fingernail varnishes and hardeners, shampoos and conditioners and toothpastes” as well as dozens of other products.

At a quick count my daughter uses 15 different products. Not sure yet which contain formaldehyde but I am certainly keen to find out.

If you are interested in finding out more about the commercial uses of formaldehyde you will find a worryingly long list at Product Safety Australia.

I also noted with concern that Wikipedia Formaldehyde entry says that “On 10 June 2011, the US National Toxicology Program has described formaldehyde as “known to be a human carcinogen”.”

While healthy people might be able to deal with a toxic chemical load it seems logical that bodies with existing health stress may be overwhelmed by additional challenges and shut down.

That’s what it looks like when chronic fatigue syndrome happens – like a shut down.

So I guess if you or your child suffers from chronic fatigue it might be a useful strategy to lighten the chemical load a bit.

It isn’t going to do any harm and hey it might just help.

I suppose in a general sense the message for all of us is – do your homework, read labels and choose your products with great care.

For no reason that I understand my daughter gets hit with periods of extreme fatigue. These episodes make it difficult for her to function.

Being unable to get out and about can lead to feelings of isolation and frustration. Where does this fatigue come from?

Fatigue is an issue for people who suffer chronic pain. I’ve noticed that it is common for parents to report that their children have Chronic Fatigue Syndrome as well as pain issues.

If this is you, I thought you might be interested in some new research into chronic fatigue that just cropped up on the ABC News Website.

“Virus theory for chronic fatigue” by Nonee Walsh (ABC News 6/1/12) explains that the theory that Chronic Fatigue Syndrome was caused by a virus has now been abandoned.

While this isn’t exactly a break through or great news at least one avenue of thought has been explored. Looking at it positively we are one step closer to working out what it really is.

Don Staines, from ME/CFS Australia points to some other possiblities on the horizon.

Dr Staines says it is not all bad news for CFS sufferers though, because of a new study from Norway.

“The whole scene has now changed direction markedly, as they are now suggesting this could be an autoimmune disease,” he said.

The Norwegian study used a drug already in use for autoimmune diseases, reporting it was also effective in treating chronic fatigue syndrome.

“It is probably the best evidence that anyone has come up with ever in this,” Dr Staines said.

So maybe 2012 will be the year when those suffering from chronic fatigue see some solutions emerging. Fingers crossed.

I want to arrange some training and support for parents who support a child living with chronic pain.

Apparently there is research showing that how we parent can influence our children’s perception of pain.

I am curious about how we track down this type of valuable information and make it accessible and practical for parents.

These days there is a lot more known now about pain and how best to treat it.

How best to manage pain medications and side effects is also practical information that could help parents.

Maybe parents who are better informed will feel more confident to manage flareups at home and so reduce the demand on emergency departments.

There really is information that can help parents care for a child experiencing chronic pain.

I wonder what we can do to make that more accessible? Is this something that interests you?

I’ve just found a story on the ABC News website about the Dalai Lama and I thought his words might be relevant to worried parents everywhere.

“He was then questioned by another woman, who wanted to know how to focus on happiness when she is worried for her disabled daughter’s future.

“[My teacher once said] when we face unfortunate difficulties, we should analyse that difficulty’s nature,” the Dalai Lama said.

“If there is a way to overcome it, then no need to worry. If there is no way to overcome it, then there is no need to worry.”

Source: ABC Online, 17 June 2011

Dalai Lama photo thanks to Ted Lipien on Flickr.

Thank you Glenn of OM4, who is a custom designer of business websites.

Today Glenn inspired our group of young people, all with varying degrees of joint problems.

He showcased to our our children their employment opportunities in the new online ecomomy.

Computers and the world wide web have opened the doors so widely that there is now no limits on our kids future.

This is a special time and this generation have a chance to grab the opportunity with both hands.

The computer does not discriminate no matter what your physical capability or where you live – you can earn your living online.

Glenn is a self taught entrepreneur of the computer business world and he has the talent and passion to help point our group in the right direction.

The next session will certainly be another eagerly awaited event.

We thank you Glenn and Julia & a special thank you to Jenny Geelen (herself a successful online business woman) and Michael Black who welcomed us into their home for this first event.

It’s exciting that the internet has opened up career options for young people with conditions that cause pain and fatigue.

This is the theme of a workshop we are having this week-end for several of the teenagers who attend the hydrotherapy groups at the Kidz Clinic.

We are hoping this will be the beginning of a project that explores the new online economy and the different careers that are emerging in this global marketplace.

There are new career options emerging because of the possibilities of the Internet aren’t as well understood by traditional career advisers.  It is also true that even existing careers can take on new forms when combined with specialisation in niches.

Working to earn an income online also mean much more control over the work environment.

Joint pain often puts teenagers at a disadvantage in a traditional working environment, whereas there are quite a few options when it comes to putting together a working environment that is based around a computer.

My husband Glenn and I will run the group. We run an online business, and hope to share some of our insights with the group.

How do Dads stay connected and  feel involved when their children are in pain?

Each family will have a different approach.  Let me share with you how my Hubby stays connected.

Now before I tell you what he does I will describe him.   He is my big strong Italian man with a soft centered heart who idolizes his living puppet girls (we have twins with Ehlers Danlos Syndrome).

My husband ensures he has uninterrupted time every week night at 7pm to watch Home and Away with his teenage girls and they talk about just the general stuff that happens in the show.

This is their time and it is a really special time in our family.

One of the Dads downloads popular songs for his daughter’s iPod and his daughter chirps up and says don’t forget Dad, you also do MySpace for me too!

One of the Dads is a carpenter and he builds all the dream pieces that his daughter wants in her make believe fairyland world.

One parent is a Step Dad and he teaches his son the drums.

Dads play an important role in every families life.  If there are health challenges that role becomes even more significant.

Hey Dads – you are treasured more than you know! Take a moment after reading this article and think about what it is that you may be doing.

What can you do to create that special bond in your family?

Rona Chiera -Moore River