Introduce Yourself Here.....

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5 months 1 week ago #29452 by Peter
Replied by Peter on topic Introduce Yourself Here.....

pucksapest wrote: Hi ive just read a bit we all sound the same we all fought the goodfight only to find some so called specialist comes along and starts playing with our meds It doesnt matter that you have been stable for years that you know more than they do about your body that you do all the right things .you try all the new drugs you exercise or work or parent or study basically having a life which is what us poor bastards fight for every day
I can tell you right now the minute you get that letter to see the pain team we all freak we all know whats ahead I recieved my letter the other day and burst into tears .I really would like to know what is in store for me at Fiona Stanely Hospital pain team bearing in mind that the other 2 major hospitals in WA were not good has anyone had any good reviews at all or is it going to be exactly the same ,treated like a junkie and put on the same crappy useless meds with the same shocking side effects. at least if your on opioids you know what to expect


Hi pucksapest,

Welcome to the CPA Forum!

There are some horror stories out there, but there are also many good ones too. I think the best thing for you to do would be to educate yourself and arm yourself with as much information as possible.

One main point in all this is that you have to understand the most important thing with attending a pain clinic of any kind, is your own attitude and outlook. You must be proactive in your ongoing care with the view of effective self-management. Sometimes this also means taking control over your health matters and being the driver of your future.

I think I might be able to give you some information that maybe of some assistance, being from WA myself I can't post clinical information here, so if you would like to email me off-list then I pass on what I have experienced and maybe offer you some alternatives.

Email Address: This email address is being protected from spambots. You need JavaScript enabled to view it.


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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4 months 3 weeks ago #29525 by Michael Mills
Replied by Michael Mills on topic Introduce Yourself Here.....
Hi everyone, I'm Michael and I'm new to this forum. I've been diagnosed via MRI as having Adhesive Arachnoiditis after having emergency spinal surgery in July 2016. That surgery followed a failed brain biopsy for a pituitary tumour the week before. I've been through the wars a bit, medically speaking, since late 2013, and now find myself with this incurable disease and terrible pain. The worst of it is that there appears to be no doctors in Australia who can treat it. I've tried 3, and one even refused to give me pain meds, but seemed to enjoy telling me all about the MRI!! I'm seeing a pain specialist and have spent 2 weeks at Spendelove Pain Hospital on the Gold Coast, and now the meds are losing their effectiveness. I have other illnesses, including peripheral neuropathy, and a bunch of hormonal and functional problems caused by the pituitary tumour. I was coping OK with the disability from the back surgery in 2016, until the Adhesive Arachnoiditis kicked in. I'm really hoping to hear from others who have this condition and learn what they've discovered in trying to access treatment and any kind of help to cope with the awful 24/7 pain. It's great to read some of the posts and see that others have found support and assistance here :-) Many thanks in advance - Michael.

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4 months 3 weeks ago #29526 by pamcarr
Replied by pamcarr on topic Introduce Yourself Here.....
hi Michael, geez you have been thru the wringer! I don't have sam condition, but do have chronic pain so can relate in that sense ..

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4 months 3 weeks ago #29527 by debcom
Replied by debcom on topic Introduce Yourself Here.....
Hi Michael I’m sorry to hear your pain is getting you down but that’s all pain does isn’t it? I’ve never heard of your condition so will spend a little time with dr google & educate myself.
I have had to leave work due to chronic nerve pain - this week I would usually be back at school:( I love my job & it has taken me years to give in to my pain, admit working with pain was just not working in any way. Most days I have half a day ie I’m up at 8am, sleeping again by 1pm, awake at 6pm & back to sleep by 7:30/8:00. For me pain & fatigue are great buddies, they never leave each other’s side!
I’m lucky because I have a wonderful GP & I think because I’ve been seeing him for over 10 years, before I became chronically ill, makes a big difference to our relationship.
Two months ago I had a spinal cord stimulator implant. There is no change yet but the docs at QPain tell me it can take a year to feel change. These bloody nerves are very habitual fellows. I’ve found the staff at QPain excellent but I’m i Brisbane.
Anyway raved enough! I wish you all the best with your journey Michael

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4 months 3 weeks ago #29528 by debcom
Replied by debcom on topic Introduce Yourself Here.....
Hi Michael I’m sorry to hear your pain is getting you down but that’s all pain does isn’t it? I’ve never heard of your condition so will spend a little time with dr google & educate myself.
I have had to leave work due to chronic nerve pain - this week I would usually be back at school:( I love my job & it has taken me years to give in to my pain, admit working with pain was just not working in any way. Most days I have half a day ie I’m up at 8am, sleeping again by 1pm, awake at 6pm & back to sleep by 7:30/8:00. For me pain & fatigue are great buddies, they never leave each other’s side!
I’m lucky because I have a wonderful GP & I think because I’ve been seeing him for over 10 years, before I became chronically ill, makes a big difference to our relationship.
Two months ago I had a spinal cord stimulator implant. There is no change yet but the docs at QPain tell me it can take a year to feel change. These bloody nerves are very habitual fellows. I’ve found the staff at QPain excellent but I’m i Brisbane.
Anyway raved enough! I wish you all the best with your journey Michael

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4 months 3 weeks ago #29533 by Johnno
Replied by Johnno on topic Introduce Yourself Here.....
Hi Michael,

A few of us pains are meeting for a coffee next Thursday at the coffee club at 11am if you want to come along we find meeting and chatting face to face iis comforting as you can put a face to a name

Johnno

as long as I wake up alive I'm happy
Because it could be worse

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