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Chronic Pain

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7 months 1 week ago #28235 by Paul001
Paul001 replied the topic: Introduce Yourself Here.....
Gday I’m Paul and suffer chronic pain after an accident about 2 1/2 years ago.Diagnosed not long after with CRPS which I’d never even heard of.
I’ve had all the nerve blocks,a week of ketamine treatment,I’ve got a spinal implant and none of it has been able to rid me of the pain
So after trying everything they know without a lot of success,my Dr.now wants to start reducing my pain relief medicine!
At around 100-120mg of morphine sulphate a day(hasn’t changed in 2 years)I don’t believe the dose is very high.Obviously it doesn’t work as well as it used to but it does take the edge off the pain and allows me to get off the couch sometimes and do something.I have explained this to my dr and I’ve even tried myself to reduce my dose but it’s like a trade off-take the pills and be able to do a bit or reduce them and just lay on the couch in pain.Hes tried a few other meds but the morphine works the best.

I’m only 53 with a bunch of kids so I don’t want to spend the rest of my days on the couch!
Thinking it maybe time to find a new Dr...has anyone got any recommendations for a good pain Dr in Sydney ?Any help would be greatly appreciated

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7 months 1 week ago #28237 by Marvinstorm
Marvinstorm replied the topic: Helloe there
Welcome. I am Nick, also new.
I'm sorry you are so unwell, it is very confronting and costly financially and lifestyle wise.
I'm like many others, major back surgery. Fusions - that's all I need to say as someone is bound to have covered it!

You are not alone, I don't know if this helps but we know what CP is like. I think most of is (me included) are ashamed when we are out and about, it's hard work dealing with every day stuff like bureaucracy and the ignorance.
We live in an increasingly selfish world. Whilst we can use it to our advantage, I think technology is to blame. Lack of proper communication.

Keep as well as you can

Nick

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7 months 1 week ago #28238 by Peter
Peter replied the topic: Helloe there
Hi Helen, Paul and Nick,

Welcome to the CPA Forum!

Sounds like you have all been through the ringer.

Helen, I'm with Johnno. Where do we start with commenting on your situation. But then, so many of us have multiple issues and illnesses, which means it will be good for you to keep talking so that some others who are similar to you, can help you with a few tips.

And Nick, those spinal operations must also be terrible to go through and recover from. Luckily I never had them, so I cannot commiserate with you.

The one thing I have learnt over the years, it makes no difference whether you have suffered chronic pain for 2 years or for 60 years. The impact on each of us is different yes, but it is just as debilitating to all of us. I have been going for 57 years and I know many others have been suffering for a long time too, but believe me, there is benefits to starting your journey when you are very young, like I did. I have no memory of what it is to not suffer moderate to severe pain all day every day. So, my brain is conditioned for this and although my pain levels almost never go under 8 out of 10, I have been fortunate enough that my brain doesn't recognise much of this pain as a threat to me, so I can actually ignore a lot of it. Sounds odd I know, but it is true.

To the contrary though, I have burned indelibly on my mind what it was like when I was a kid and the mountainous fear and dread of thinking I was dying and how could I go on with so much searing pain. I will never forget it. It's like a torture.

Those of you who are just starting on this journey, believe me, we are all on your side, because sometimes you have it worse than those of us who have been at it for a long time.

Then there are those of you like Paul who have that accursed CRPS, which I do not have, I really feel for you. That is such a terrible, terrible condition and I have seen so many strong healthy people turned into a mess of disability and insane pain levels. Limbs that go blue/grey and if you so much as breathe on that part of their body, they almost scream with pain.

Paul, you might want to have a look at the Australian Pain Society's Clinical Services Directory: www.apsoc.org.au/public-listing
They have some great doctors on that list, but they also show where they are located and contact details if you click on the 'more' button. Scroll down the page until you come to the list.

I hope all of you find this place a friendly understanding place to come to. We don't have a lot of activity, but those who are active, speak your language and fully understand what you are going through.

Even us moderators suffer just like you guys, so know you are well looked after. There are 3 of us. You've met Johnno and me. Our other moderator is Jo, she is incognito at the moment thanks to out national telco and their inability to get her internet connection working.

Read as much as you can, to help educate yourselves and ask any questions too. We'll try to answer what we can, but remember we cannot give out any advice.

Take care!


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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7 months 5 days ago #28240 by Duchess Dolly
Duchess Dolly replied the topic: Spinal Fusion
Hi i am Dolly and i have had chronic nerve pain since i had spinal fusion 7 years ago.
I have been on every pain medication there is . I also had a spinal stimulator put in my back 18 months ago.....i had it put in 5 times and let me tell you when they pulled it out the last time they said it would not hurt i yelled the hospital down......they did not tell me i had so much scar tissue.I still had it put back in.....any chance.....but still nerve pain from waist down.
So back with all the drugs ....nothing really works.
Whoever wrote that no one understands because we have no blood and nothing to see is so right....my children think i am trying to get attention.I am at my wits end my doctor says i am an addict and i need to get off the medications.....but what can i do.
I have no idea.....it just never ends.....you have a good day and make the most of it because you have to suffer for two days after....I am a social person so it make life difficult.
I have lots more to write but this will do for a start.
I would love to speak to anyone.......

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7 months 4 days ago #28242 by Rhonnie W
Rhonnie W replied the topic: Hi I'm Rhonnie
Hi I've just joined this forum after listening to a lady speak on ABC radio this week re Chronic pain

I've lived with neck/shoulder & arm pain for many years
Last year it was so bad I contemplated suicide- I will write to the family /friends who got me by at that awful period.
I have worked 40+ years in the public health system in the main Emergency departments & thought I had a good knowledge of pain until I had it chronically- it's like a sore nagging tooth that just wouldn't go away & nothing was pleasurable except maybe lying down.
When you're in so much pain you live under a dark cloud & can't see any silver linings.
Thank goodness for txt messages & email/phone as this was my only escape- I will write to these people soon as the anniversary of the worst pain I have ever experienced is now & the next 2 months- I understand now it was the ceasing of 1 medication & the beginning of another that I actually was not on any analgesia for approx. 4 to 6 weeks.
I am blessed now that the new medication & a decent physiotherapist has finally worked their magic plus the odd massage
Hope I can help others with this dreaded affliction ( the meaning of this word is disorder, disease, malady, complaint, ailment, illness, indisposition, scourge, plague, trouble, menace, evil & visitation just about sums this pain up ) although I had compassion for anyone presenting to ED with chronic pain - I now have incredible empathy.
All the best in your journey of wellness
with kind regards
Rhonda

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7 months 4 days ago #28243 by Peter
Peter replied the topic: Hello to our Newcomers!
Hi Rhonda and Dolly,

Welcome to the CPA Forum!

Dolly, that is the one thing I never did. I have never had spinal fusion and was warned off of it by my neurosurgeon many years back. Best bit of advice I ever had. But then again, my spine only had disc degeneration. There was no disc material in my L5/S1 joint, so it was going to fuse anyway. I feel for the people who suffer physical trauma to the spine and end up with no choice but to have surgery. That would be terrible.
Dolly, I think Johnno has a letter you can print off to give to your kids to read, which will explain to them exactly what you are going through. Worth thinking about!

Rhonda, isn't it a big shock when you finally end up suffering the same as the people you treat? And I say that with a great deal of charity toward you.

If I had one wish, it would be that they could invent a drug that would mimic a severe case of chronic pain that would last for at least a week and that all health and medical professionals be made to suffer this. Then at the end of the week as they are begging to be given the antidote, you remind them that there are millions of people out there living just like them, but have been doing it for many years and decades. There is an unknown number who kill themselves too, which is incredibly sad! Maybe then they might have a little more empathy toward those of us who suffer this accursed condition.
There are some great clinicians out there working very hard to assist CP sufferers, but they are still far too few. There are many GPs and pain specialists, still thinking it is just a mental disorder that can be fixed with a dose of antidepressants and some visits to a psychologist.

It is so good to have you on board, but for your sake, I wish we didn't. I hate to see anyone riding aboard this particular train and worst of all are those who have had all manner of operations, but then have CRPS on top of it all to suffer. These people are my heroes. How they get through each day is beyond my ability to comprehend, yet they do!

So welcome to you both and I hope you find our forum a good place to chill out in and do some reading. It isn't an overly busy place, but it is a safe and supportive place to drop in and spend some time, when you feel the need.


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
The following user(s) said Thank You: Rhonnie W

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