Macquarie University online Pain Management Course

Just been having this exact conversation with my co-facilitator of a course we are running starting next week!!

All these courses and support groups need a large consumer input. We are the ones who know what it is like to live with chronic pain, or any other chronic condition for that matter, so we are the best placed to support others. If governments put more money into self-management courses and support groups, they would save huge amounts of money which could then be recycled back into the health system. The problem is that politicians are not educated in this field, so they need to listen to those who are!

Mary

It is always difficult to get politicians to listen to anything that isn't going to get them immediate votes.

Agreed!

I have been signed up for the next round of this which I'm looking forward to.

I have after 18 months been given the diagnosis of fibromyalgia after 2 doses of dengue fever nearly two years ago it has been hell since.

I have just had a referral to get a ketamine infusion done which I am hoping will help. Im just going crazy and want to go back to work but its not possible. The last two days have been hell just spent in bed because I'm in so much pain.

I am going to ask to get a higher dose of endone even though this is a slippery slope but I need some relief.

Thanks for listening.

David

It's great that you have been able to get into the course David. It's not a cure, but it will certainly be of help to you to manage better.

Regarding the Fibro. I have a friend with Fibro who found great benefit from a heated pool. Even just floating around on a noodle should bring you some relief. My friend eventually graduated to doing a bit of walking and some gentle exercises. Trying to do a hydro session is not a good idea because it stirs everything up way too much. But just floating at first and then gradually walking for a couple of minutes may be of help.

You may be able to find a physio who is familiar with the needs of people with Fibromyalgia and can help you. Meanwhile I will contact my friend and ask her exactly what she did do, because she is doing very well now. It took time, but it worked for her. She also had the help of a very good physiotherapist. I will find out what she did too.

Mary

Thanks for your reply Mary.
I live on the gold coast and I have a gym right across from where i live. I did go and ask if they could give me access to their pool without joining the gym.
I happened to meet the most judgmental and rude young lady who looked me up and down with disgust. I must say I am not obese by any sense but have put a bit on in the stomach with the use of lyrica. Well it took all my strength not to punch her out or at least start a verbal attack which I am very good at and alway win. But I just walked away, probably good because I might have been arrested.

Thanks for the good advice I will continue my search for a heated pool.

Hi David,

I have spoken with my friend and I have her permission to copy and paste her suggestions, which are basically what she did.

"To start with, it depends on what sort of fibro you have. Some people are very sensitive to touch and pressure and if that is the case, the pool is no good because the water pressure is so much greater than air pressure. Also, the water HAS to be at a therapeutic temperature, at least 32 degrees, but preferably 34 to 35. This means most public pools and swim centres aren't warm enough. Hydrotherapy pools are at hospitals, some large physio practices & rehab facilities.

To start with, most ppl with fibro only go in for a few minutes at a time until their body is used to the water. Any movement in water uses 8 times more muscle strength than on land although it seems to be easier. So "start low, go slow" is the mantra.

Gentle movement is the best, definitely not general aquarobics classes. Some places have gentle aqua for arthritis or seniors, which can be ok once you are used to the water.

The main benefits for fibro are strength and flexibility, it's not an aerobic activity by any means.

A lot of the fibro ppl at my pool just walk and do gentle leg exercises with/on a noodle. I have a program of exercises designed by my physio who specialises in rehab."

This may get you started. If you don't move a little - and I stress a little at this point - you will have even more pain. If you have any specific questions, I can get the answers for you. My friend also ran a Fibromyalgia support group for some years, so she knows her stuff.

Mary

Thanks Mary for your research and reply.
I was not aware that there is differing types of fibro??

My pain doctor gave me this diagnosis only recently after suffering with chronic pain for over 18 months. The only catalyst to all of this is I had two bouts of dengue fever whilst I was working in south east asia.

I kept explaining to all my doctors that the pain radiates out from my bones just like the dengue pain. I think this is why it has taken so long for them to come up with some sort of explanation. Of course it has just gotten worse now and it is in my hands and fingers.

I looked up hydrotherapy pools yesterday and there is one at the Alamanda hospital here on the gold coast so I will contact them and see if they will let me use it. The information about not over doing it in the pool is great advise as I usually end up back in bed just going up the street to do the shopping. This week being one of the worse I have upped my Endone taking so I will ask my doctor for some stronger pain relief next week even though this is the last thing I want to do but I am getting little relief now as my body has gotten use to the opioid medication.

I had a visit with my psychologist yesterday and she is great to talk to and picks me up when I have a visit but I had my last free visit so will have to pay for the rest of the year which is ok because she grounds me a bit which I need.

Sorry for rambling but once again thanks for your info Mary
Cheers
David

I wasn't really aware of the two different types either! I guess it is more that people are different in their reactions to things. I don't have Fibro but I cannot have hands on physio or massage. It feels great at the time, but 20 minutes afterwards I am in agony because it just seems to stir up all the nerve endings. I guess it might be the same with some Fibro people.

I know that my friend swears by a weekly massage because it relaxes both her and all her muscles. She is doing very well at this point and leading what I would call a "normal" life. So am I, but it did take some years before I found a way to live with the pain and get my life back. i still have days that are not so good, but I am finding that I recover more quickly from setbacks than I used to. Much more quickly!

I am glad that you have a psychologist to talk to, especially as you are happy with her. Has she taught you some relaxation techniques? These can help to calm down the chemicals in the central nervous system that maintain the psi and this can help a lot with pain levels. When I was at my worst, my psychologist suggested that I try and do a short relaxation session almost every hour for a few days. Nowadays, I usually try for once/day.

Don't ever apologise for rambling as you put it; that is why we are all here 🙂

Mary

Stereodavid,
Have you looked into any rehab clinics, not drug rehab, but those setup up for people who have long term disabilities and injuries from vehicle and industrial accidents, they usually have indoor heated pools for hydro treatment for these patients, they are run through the public system, and are an extension of the hospitals for ongoing treatment, I attended one here in SA for my physio, as this was the only way to do physio that wasn't causing too much pain, the physio at the hospital gave me the referral to go there. They have all the necessary equipment there as well, from lifts, chairs and all the floatation devices you may need, the physios on hand will help devise a exercise routine if you require one, there is a cost involved, but this works out cheaper if you pay for bulk visits up front.

Secondly, you are seeing a psychologist under the mental health plan to get your free visits, you can get an extension for up to four more, just by filling out another assessment sheet with your GP, it should be the same in each state, your GP should be able to fill you in next time you see him/her.

Don

Hi Don and Mary.

I just finished my tenth visit with my psychologist yesterday with the mental health plan but I do not mind paying for the next few months until I can get a new plan. I am hoping once I get into the pain clinic with the hospital here for the ketamine infusion that they will be able to refer me for some physio. Until then I will keep hunting as I think the water will be great for me. As for rehab this is something I would like to look at after my Ketamine treatment. Don I will check out to see if there is any rehab clinics on the coast thanks for that advice.
I have had massage which is great whilst it is going on but as soon as it stops I am right back to where I started when I began.

I think I have a good team with my GP, psychologist and psychiatrist at this point in time. It does not help that I suffer with Bi polar also which is a vicious circle. But I am keeping my head above water at the moment. I am just praying I can return to my previous work at some time in the future and this keeps the small amount of hope I have alive. Its great to have forums like this to understand that you are not alone and other people are in the same boat. When I began this journey I did feel alone but not any more thank Buddha for that. I do try a lot of the breathing techniques and other relaxation and stretching on a daily basis.

Thanks to you both for encouraging words

You are in a very good place David. The GC Medicare Local has an excellent pain management strategy that is being emulated by others throughout the country!

Mary

Thank you to you all for the good replys.

Mary I know nothing about medicare local could you please explain what that is all about???

Thank you

David

Hi David, Medicare Locals are like the old Divisions of General Practice. They are districts that group together and form various strategies an alliances with each other to provide better health care all round. However, they are about to be disbanded and we are going to have Health Networks (that may not be the correct name!). They will be bigger areas and I have no idea exactly when they will be rolled out or how they will function.

There is a thread here:

https://www.chronicpainaustralia.org.au/index.php/forum/medicare-locals

And if you Google Medicare Locals, you will probably find a wealth of information.

Sorry this is a bit general, but it's Father's day and we are having family arrive shortly 🙂

Mary

These links might help you, David.

http://www.healthygc.com.au/Health-and-wellbeing-on-the-GC/Gold-Coast-Medicare-Local/Our-Activities-and-Programs/Turning-Pain-Into-Gain.aspx

http://www.goldcoastbulletin.com.au/news/gold-coast/littleknown-gold-coast-medicare-local-group-could-be-history-after-prime-minister-tony-abbott-hands-down-federal-budget/story-fnj94idh-1226915356568

http://www.healthygc.com.au/News/Persistent-Pain-Program-Coming-to-Southport.aspx