New Member - This is my story

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8 years 2 weeks ago #12248 by Peter
Replied by Peter on topic New Member - This is my story
Hi Angela,

Welcome to the Chronic Pain Australia Forum. As you will have noticed, you have indeed found a group of people who actually do care about you and your pain. We also know that it's real.

Angela, after reading all the comments made by you and the information offered by the other members, I can say you have been very well informed.

Please, I urge you to reconsider going to a Pain Clinic, because in the opinions of those of us who have been to them, you truly need to go. You will learn so many more skills and no, you don't need to have drugs if that is your wish. But you could be surprised at the effect small amounts of the 'right drugs', could have on your life. The drugs you take for band-aid purposes, could be a complete waste of time, when the correct drug may give you a lot more relief, even if used as a 'first-aid' relief only.

Please give it some thought, because they have a lot of information that would be of great benefit to you.


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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8 years 2 weeks ago #12258 by BIY
Replied by BIY on topic New Member - This is my story
I have to say Peter, I agree with you totally.

I have been limping along for most of this year not using any medication and trying just to use the pain management psychological tools with a gradual further and further decline of energy and activity until most of my days for some time have been spent on my recliner watching recorded programs because I was in just too much pain and too fatigued to do anything else.

As you also know, my not using CP pain assisting medications was not by choice, but because of severe adverse side effects to all that I tried. I held off trying Norspan patches (sort of morphine) up til a couple of weeks ago because I did not want to go down that road of heavy duty, potentially addictive pain relief....but my goodness; what a change I can feel in myself with having my pain levels reduced from it. At last I have found a medication which does have side effects, but not as bad as the others I have tried and I am going to work through these when I visit my GP today to see how we can work with mitigating these as much as possible. These side effects are worth working though because the medication is having a positive effect on my pain whereas all the others just gave me side effects and no pain relief.

But I can honestly say now, that in my experience, if you can find medication to help reduce pain levels combined with a pain management program that educates on non-medication tools to deal with the residual pain, then I reckon that is the way to go. To me, I think if one's pain levels are so high; then it needs this combination approach. I now see a light shining where for months there has just been the darkness of unrelenting high pain levels. And I can now see that with the Norspan reducing the levels, I will now have pain at a tolerable level to start reintroducing those pain management tools I learnt earlier such as pacing, graduated activity plan, Acceptance Commitment Therapy, Mindfulness and distraction. I was not able to implement these when my pain was at such high levels and my quality of life actually got worse and worse.

I know this is not going to be an easy road back to some kind of quality living as I am totally exhausted to the bone from living with those high pain levels for so long, but now, with the Norspan patches, I am really thankful to have been taught the tools at the pain management program that can help me find the road back to more than just sitting in a recliner watching tv all day too tired to even have a shower or get dressed some days.

So I really encourage you to check out a pain management clinic Angela...really what have you got to lose if your life is so isolated and activity level is so low already? It's not a quick fix; nothing is with CP...it is baby steps over a long period of time, but gradually, hopefully building to more than life in a lounge-room on a recliner or a couch.

Hugs, Fee

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8 years 2 weeks ago #12272 by Mary
Replied by Mary on topic New Member - This is my story
You have hit the nail on the head Fee. It is a rare person who can manage chronic pain without some kind of medication. If you can find one that helps with minimal side effects, then that enables you to take part in pain management programs and, eventually, find your life again. It may be a slightly different life to the one that you had before, but it is a whole lot better than having nothing at all except pain.

It is really hard to participate in those programs without at least taking the edge off of the pain first. I don't mean to make this seem easy because it isn't, but once you get the idea behind it, everything seems to make more sense. Also, a lot of fear dissipates and that in itself will lessen pain levels.

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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8 years 2 weeks ago #12408 by Red
Replied by Red on topic New Member - This is my story
Hi Angela, welcome to this wonderful forum.

You have received such great advice, I hope you are inspired to follow, and find a Chronic Pain Clinic. Life is plain miserable, if you are in pain. You owe it to yourself to improve the quality of your life. I was also against strong pain killers for myself. I have finally accepted that I have a much better quality of life, if I use medication to support the other tools I use to help manage pain ( meditation, rest, saunas etc). So, I read your post and thought I think i understand where you are coming from and I don't take narcotics.

Narcotics won't help neuropathic pain, but others meds do. I am on a small dose of an antidepressant, and a large dose if an anti convulsant (both works for neuropathic pain), and also regular Panadol and an occasional codeine. I have had a few courses of ketamine and life is looking so much better. So, if it is the thought of being caught on a merry go round of drugs frightens you, please be reassured there are medications that may be tailored to help you and you are in charge of what you take.

All the best x

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8 years 1 week ago #12417 by kebsa
Replied by kebsa on topic New Member - This is my story
i really d hear myself when i read your description f not wanting to rely on medications- i was so desperate to avoid using opiates that i opted to have my leg amputated- needless to say it dd not solve the issues (central nervous syste windup etc) i honestly wish that i had been sent to a good multidisciplinary pain unit a long time sooner- there is no magoc cure to chronic pain, just ways to deal with it and medications and surgery are a very small part of it. beware too though iof some of the alternative and paramedical practioners who will see you as a source of income ( something you already suspect by the sound of things when you say Ca ching) for instance, how much can a chiropractor alter the alignement of your spine when such a large portion has been fused with harrington rods! the fact that you have scoliosis and have had such surgery tells you that tyou have alignment that is less than normal - don't get me wrong i have used chiropracters and found them useful but often there is no fix it solution just ways to manage things and i think waht myself and the others are trying to say to you is that the multidisciplinary pain managemt units are the best option to achieve this- the added bons is that most are in the pulic hospital systems and therefore not expensive options. i have been going to the pain unit now for around 20 yrs in total and i am very grateful for there help! i honestly do not kow how i would have gotten through the past 20 rs without them. i had had pain promblems for along time before i got there and have developed other issues over time that have added to my pain but they have been there to help me deal with it

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8 years 1 week ago #12422 by GarfieldRules
Replied by GarfieldRules on topic New Member - This is my story
Hi Angela and welcome to this wonderful forum. It really sucks when you have to deal with chronic pain all the time. It never goes away. Other people just don't understand how your life really is. You are certainly in the right place. We are all here in the same boat. We certainly understand how you feel. I don't have the anwers for you regards your pain. I can only offer support. No matter how much pain you are in never give up. Try your best to have some sort of life. I know its real hard but if you give up you have nothing. You will find so many wonderful people here who are more than happy to support you and be your friend. Take care of yourself. xx

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