BIY created the topic: Hope vs Desperation - affect on Pain
I know there's a real push these days to involve psychology into pain management treatment and I got to experience why it's so important and how much it can affect coping with pain first hand today.
It was a very crap day for most of the day with what felt like almost unendurable pain levels. For the past couple of months I have shared in my posts how much in 'no man's land' I have been feeling as far as a lack of a treatment plan or coordinated treatment goes. Without being able to tolerate most medications, at times, especially this past week, it has felt like an unendurable blanket of pain so intense that I can't see anything else at the time apart from this pain.
My husband ended up coming home from work to take me to my GP. I found out today that my GP has spoken to my wc case manager and really pushed for me to attend the new pain clinic. I didn't have to worry today about not being believed about my symptoms; he could quite clearly see how much pain I was in. It was really good my husband being with me too because he was able to broach how much he wanted to see something happening as far as getting a treatment plan in place through the pain clinic and my GP was right behind that.
We then went down to the pain clinic and I put in the great long list of registration forms and have an appointment to see the pain specialist on 24th January for an initial consultation where he will put together a treatment plan which he will then submit to wc. We've decided that it's more important at this time to pay for that first consultation ourselves (if wc approval doesn't come through in time) than wait for wc.
And this is where the psychology of hope comes in. It's not been an easy road because I had to do all the research myself finding a pain clinic near my local area and then taking all the info to my GP. But by the end of today, I still have as much pain physically, but emotionally wow! what a difference. Just the knowledge that the wheels have started turning towards some coordinated treatment has lifted off this huge cloud of hopelessness making the pain that bit more bearable to cope with.
In the meantime, I've got a morphine patch on my arm as a trial at pain relief just to tide me over and some panadeine forte just til the patch kicks in in 48 hours. Neither is a good solution long term, especially with the PF and my stomach, but I'm finding this evening that I can relax about it because I know it is only short term and there's a plan about to start at the end of January that is geared not to leave me dangling on these short term bandaids, but a longer term more holistic one is about to be put in place.
I just wanted to share about the difference this made as I know I'm not the only one who has felt in the uncoordinated treatment 'no man's land'. I encourage you to search out what's available and be your own advocate in getting the help that you need. It took a lot of searching, gathering of information and pitching it to my GP to get to this point; not any easy feat when you're in pain and so exhausted from it all; but well worth it.
Mary replied the topic: Re: Hope vs Desperation - affect on Pain
I can relate well to the "desperation". I was fortunate enough to have a GP who pushed to have me readmitted to hospital for pain management in the beginning. While this worked to some extent (lots of medication) it was not the total answer. I also spent a month in a rehab. hospital. That was helpful but I am so sensitized that they had to have me go to the pool at the end of the session because the waves that other people made increased my pain levels too much.
I came home knowing that it wasn't going anywhere in a hurry, although a couple of doctors had told me it would be "better in 12 - 18 months". I think they thought that they could convince my brain to get rid of it. When I was still the same a year or so later, I had to research myself to find something other than just more medication that would help. I found a course that helped me enormously and, about the same time, I was fortunate enough to have another doctor who recognized how afraid I was and suggested that I saw a psychologist. She was extremely helpful too, so the combination of those two things and, later again, the addition of Lyrica has been the best management plan for me so far. I only take Lyrica because I am sensitive to everything else. It takes the edge off and I find that using all the other things that we are taught such as pacing, relaxation etc. all work together to give me what I consider to be a good quality of life.
It definitely falls in a hole periodically, especially in winter, but I don't get so scared any more and I know what I have to do to get back on track.
I have a feeling that in a few more years we may be more organized with pain management. I certainly hope so because at the moment it is quite often very fragmented with everyone doing their own thing while we patients often have to search and search for some kind of management plan. I am so glad for today's technology because without it, I would never have found the information that sent me down the right path.
The one thing that I didn't have to cope with however, was WC. I am noticing that people who have to cope with that as you do Fee, tend to have a much harder journey. That really needs addressing because it is simply not fair.
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
grappers replied the topic: Re: Hope vs Desperation - affect on Pain
Fee I hope the patch gives you some much needed pain relief, it must feel like a big weight has been lifed from your shoulders, but having to do it all on your own should not have happened, I suppose that is the biggest short comings of the WC system.
Once you start at the pain clinic life will slowly turn around, the pain will never go and you know that by know, the fact that you will have a team around you, to teach you the tools you need to cope and maybe a hope that some sort of medical intervention will help control that pain. Just knowing you now have that support changes your perception and mind set, life can only go forward now for the better.
BIY replied the topic: Re: Hope vs Desperation - affect on Pain
Thanks Mary and Don.
My husband and I were impressed when we went to the information evening last week how well rounded their program seems to be and, as well as the things you mentioned like interventions such as nerve blocks, stims, infusions etc, they also heavily support pacing, self management etc including relaxation and exercise and even went as far as diet and vitamins for building your body up.
This was what my husband and I felt was missing from the program I did earlier in the year where external interventions were not encouraged. My husband has been cross for ages that I wasn't doing things like relaxation and hydrotherapy etc at the last program. We both believe that things like this can only enhance the overall wellbeing of the person in pain rather than these things being viewed as an effort to find a magic cure. Recently my husband (God love him; he's a gem) has been rubbing my aching legs at night with a magnesium rub and, even though it doesn't 'fix' the problem of the neuropathic pain in my legs, it sure does give enough temporary relief to help me be able to fall asleep which I was having trouble with prior to this because they were aching so much. And sure, it doesn't keep me asleep all night, but some sleep is better than no sleep and, I think, if you put a few cumulative things together like this, it can only help the overall picture towards a better quality of life.
While these added external interventions don't cure CP, I can only see these as being helpful to building an overall picture to at least giving a body with CP the best chance at being the best it can be within the context of the condition. I'm still blown away by the fact that they include diet and vitamins in their program. Those things, combined with the psychological tools of ACT, mindfulness, goal setting and they even touched on positive affirmations makes me very hopeful about the holistic approach to this pain clinic. It seems to have identified and addressed the holes I had identified myself in the way my pain has been managed so far. I have no unrealistic expectations that the chemical interventions are necessarily going to work given my sensitivities, but I'm just really liking the sound of the overall approach and so is my husband.
I think what we need is a few of our politicians to be personally touched by CP; I'm sure we'd see some massive changes to the system if a few of them had to deal with our everyday challenges...however, we don't want them hit too bad or they'd be too darned fatigued all the time to do much lol!
Or someone like Ian whose been there, knows what it's like, but has a new lease on life with reinvigorated energy How about it Ian? Published journal, book, then politics....sounds great! (well to me at least )
Red replied the topic: Re: Hope vs Desperation - affect on Pain
Hi Fee, just wrote a long reply, but the computer ate it!!!
It's great to hear that after some horrible flare ups you have found such a great sounding pain management program. And I hope the morphine patch helps you and you are starting to feel more comfortable.
The program that you wrote about has so many elements that I practice, believe in or would like to know more about. This last year I have started with Ian Gawler's Mind Body Mastery program and find it really good. If I don't meditate for a few days, I don't feel as calm and am certainly more emotional. I'm impressed positive affirmations have made 'mainstream'!
There is a book about living well with cancer or stopping it reoccurring (if possible) that has many of the same messages in it, with a holistic approach. Especially when cancer now becomes a chronic disease for some people. And CP is part of the disease. If anyone is interested it is a book written by a Professor of Psyciatry, who has also had a few battles with cancer. It is called 'anti cancer a new way of life' by Dr David Servan-Schreiber.
Fee, I think beside politicians being touched by the reality of CP we also need drs and nursing training changed big time!!! The amount of time I have heard patients labelled with 'drug seeking behaviour' is disgraceful. Especially ED nurses, they tend to be harsh and judgemental.
Hope WC get back to you before the appointment date with a positive message. I hated dealing with WC, they would have me in tears every time. I think it is the strong message that they send that they do not believe you, that is really distressing. I ultimately did not receive WC due to the surgeon who did such a dreadful job on my neck. So I deal with QSuper, who have been much nicer. But, they can afford to be, as I pay for everything myself.. And it is well documented all the things I have done to try and get well again.
Peter replied the topic: Re: Hope vs Desperation - affect on Pain
It's so good to see things starting to work out at least a little. The unknown is one of the hardest things for those of us who suffer CP. We just don't know how long we are going to be so debilitated like this, and no one seems to be available to assist us, whether they want to or not.
When you do finally get someone who can say they can help and are able to map out a treatment plan that has logic to it and you can see it will work, then that makes a huge difference to our state of mind, PLUS, it has a positive effect on our pain levels.
We have to remember that pain causes stress. Then the stress caused by that pain, causes more pain. It's a never ending cycle and if we can't break that cycle somehow, then the pain becomes so debilitating that we end up wishing we were dead.
And haven't most of us been there too!!
In the end, acceptance and knowledge through education, is the best way to live with CP. And we get the education from people who can teach us how to self manage our chronic pain.
Great news and hopefully now you'll have a much better Christmas. Maybe you can even chow down on some real food too. Well, gently of course!
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)