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Hope vs Desperation - affect on Pain

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5 years 6 months ago #11751 by BIY
BIY replied the topic: Re: Hope vs Desperation - affect on Pain
Hi Red,

Thanks for the encouragement and recommendation of the book. I'm so glad you have found the Ian Gawler program so helpful. Yes, I was pleasantly surprised about the emphasis on positive affirmations too.

A tip I've found helpful is to do a 'select all' then 'copy' from time to time as I'm writing a post so that if the computer is feeling hungry, I at least have most of the post on the clipboard and can just do a 'paste' into a new post with most of itrescued. I do a lot of posts on my phone so it is not so easy to do it in a notepad first so find this method has saved me a lot of grief :o

I feel for you having to go initially through wc then having to go elsewhere, plus also the cost to yourself. I actually resigned from wc within 6 months of injury cos I found it so stressful dealing with them. However, after several years of my condition getting worse and us finally being so financially strapped that we nearly lost our home, I applied to reopen it....and that was nearly a year long battle in itself! OMG, no wonder I'm so exhausted from it all; fast forward several years and I'm still fighting for settlement! ....and treatment.

Can feel the patch is starting to reduce the pain a little, got a stinking headache and feel queasy, but I'm guessing that's probably from my body getting used to the morphine. Hoping that will settle down and just 'going with it' ATM and not stressing about any side effects.

Far from malingerers Red, I reckon we all with CP have done more things to help ourselves than 20 normal healthy people would have done in a lifetime combined :)

What wc and other injury organisations don't get is who would want to on purpose stay in this injured, limited activity state if they had a choice!

Hugs to you,
Fee xo

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5 years 6 months ago #11766 by Eliza
Eliza replied the topic: Re: Hope vs Desperation - affect on Pain
Well said Fee I'd rather be at work earning a decent wage then sitting at home in pain and misery! I'm wondering why you haven't tried the patches before? I thought you were allergic to all or most medication? Why have you been suffering so long Fee? I just got 4 more sessions approved for the pain psychologist, so I'm thankful for that though some hydro-therapy,physio, massage and home help would be good! I think nsw w.c has just passed the worst laws in the so called lucky country! -:((((

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5 years 6 months ago #11772 by BIY
BIY replied the topic: Re: Hope vs Desperation - affect on Pain
Hi Eliza,

It would seem with this CP journey it is a lot of stumbling in the dark and feeling your way through.

When I first started at the short term pain management program earlier this year, the pain specialist said to me that I had to stop looking for a cure as he had seen too many people waste years of their lives doing so. Also, because I'd had adverse reactions to so many medications, he said that medication wasn't going to be an answer for me either and therefore the thrust of the pain management program for me was to be using Acceptance Commitment Therapy, Mindfulness, pacing, goal setting etc and any further interventions were discouraged. However, the migraines were daily and extremely painful when I began the program so a concession was made to trying the Botox which has helped bring down the daily headache, neck and shoulder pain and decreased the frequency of the migraines.

I can understand where they were coming from because it was based on the theory that by the time you end up at a pain program, you usually have tried just about all that is available, but nothing much has worked and thus you've ended up at the pain management program to learn how to cope with living with that.

So the above combined with my own problems with tolerating medication without adverse side effects plus an addictive physiology which leads me to build up a tolerance to dependent potential type medications quickly needing more and more for the same effect made me steer clear of something like morphine patches. So I know it can only be a short term answer as with the PF and NSAID because they've already wrecked my stomach in the past from long term use.

I have really given it my best shot this year trying to implement all the CP psychological tools without extra intervention for my jaw pain. But to give you an idea of the pain levels I've been living with, at the moment I have a morphine patch combined with taking 2 panadeine forte, 2 neurophen and 1 paxam (muscle relaxant) and still have pain in my jaw.

The only way I have been able to have some degree of management over the jaw pain is to refrain from talking, but even that is not working now with flare ups triggering from less and less amount. It only takes 15 minutes of talking for my jaw to go into spasms now. And, I have started to have difficulty eating even though I eat soft foods; the nerves inside my mouth are all so hypersensitive now that even temperature or sweetness sends pain shooting up into my gums and jaw.

I really took on board to stop looking for outside interventions and gave my best shot to using the psychological tools on their own, but what I've ever so slowly come to realise over this year that stopping looking at other possibilities for outside interventions and just using not talking as a pain management tool comes at a very big price...and that is loss of quality of life.

So if at this new pain management clinic they say they have a couple of intervention options which the pain specialist said he can explore with the oral/facial pain doctor he works with, I will be saying "yes sir, please give it a try!" However, the difference is that I am not going to having unrealistic expectations of total eradication of pain; if they could just bring it down to manageable enough levels that I could at least meet a friend for a coffee and chat...well, that would just be heaven as my world has got so very small and isolated and it is difficult to distract yourself from the pain if you're just in your own head and by yourself most of the time. Interacting with others is not only good for the soul, but it also gets one out of one's own head and interested in the people around you so it's just no longer all about me and my own pain.

I think there's a fine line between between being 'cure' and 'pain elimination' chasing vs still looking at intervention ways that may make the pain levels more manageable to enable an improved quality of life. Ideally I think the latter, combined with the psychological tools of pain management is a good combination because the psychological tools help cope with that left over residual pain that the interventions can't take away. When I think back in retrospect of this year and the sustained high pain levels my jaw has been in over a long term basis, I don't know how I made it through this far plus having the psychological pain and suffering of little outside communication on top of that.

I do not kid myself however that I will be able to tolerate the interventions, but I think they are at least worth giving a go. I'm fairly sure Ketamine is not going to be an option as my oral specialist had made up some Ketamine gel to put on the inside of my mouth for the nerve pain in there, but it made me feel really weird and my husband noticed quite a personality change from the Ketamine being absobed into my system. However, he uses a wide range of interventions.

And I could be totally off the beam here because I might be posting in 6 months or a year that I tried the gamut of interventions and they didn't work and I'm back to square one. But, then, look at the Botox; I know it didn't help Garfield Rules at all, yet has been helpful to me in reducing the migraines to a large degree and that was after trying all the full gamut of migraine medications and a test anesthetic injection into the occipital nerve which did nothing to help.

I am waiting on approval myself for the pain clinic, but will take it to my lawyers to take to conciliation if it's not approved. But I'm going to go ahead with the first consultation myself regardless just to be assessed and see what the pain specialist's overall plan is.

Hugs,
Fee

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5 years 6 months ago #11775 by Mary
Mary replied the topic: Re: Hope vs Desperation - affect on Pain
You are amazing Fee. I really think that you have the worst of it because you can't talk to someone, either professionally or personally. I cannot imagine how hard that must be. If I am really bad, at least I can still sit in a corner and talk. I am like Anne Shirley (Anne of Green Gables); I talk all the time and probably drive everyone up the wall!!

Here's hoping that 2013 will bring you at least enough relief to be able to talk for longer. I agree with you that a certain amount of intervention is needed. Either the smallest dose of a medication that can enable you to pace, do your relaxation, meditation etc. It's hard to do all that when you can't take the edge off the pain first.

I ran into trouble with the pharmacist at a public hospital yesterday. My husband went to pick up my repeat prescription and I still had one box of 25mg Lyrica that they hadn't been able to supply last time. I sorted it out on the phone with the pharmacist before he left but she wouldn't give him the second box of 25mg. AND she "couldn't understand why I needed 3 strengths anyway". He explained that I have worked it out with the Dr. and I have cut back, but occasionally need an extra 25mg but she thought I was mad I think. I wish I had been there but my husband had to go right past there anyway and he was trying to help me out. I am not worrying about it, I will contact the Dr. after Christmas.

I really hope that the new pain specialist has a fresh approach for you Fee. Fingers crossed.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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5 years 6 months ago #11777 by BIY
BIY replied the topic: Re: Hope vs Desperation - affect on Pain
Thanks Mary.

You know, I think some people are in the wrong profession! If they really understood pain, they would realise that all these barriers and extra explanations etc all just adds to the stress...and having to pick something up later only just adds to the fatigue which makes everything an effort anyway.

Hmmm....I think 'pain empathy' training should be part of any course where a professional needs to interact with patients in pain including pharmacists.

Gosh if we all had the energy to band together, we could really change the world for the better as far as CP goes. My mind is willing...but the old body just doesn't want to get involved in the energy something like that would require; bummer!

Hugs,
Fee

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5 years 6 months ago #11780 by Eliza
Eliza replied the topic: Re: Hope vs Desperation - affect on Pain
Mary, I think Fee is amazing too! Fee I'm in the same predicament as you with the physiology to tolerance. And Mary it sounds like we have very similar back/ medication problems...we know our own bodies and how the medication and what doses we need though its hard when you are judged by others... :S

Fee this new pain clinic of yours sounds like it might be the one, I have a good feeling about it for you... :)

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