I live with, or i suffer from?

[Davek723]

Hi there i used to suffer from CRPS, now i live with CRPS. My condition used to define my life, i was a sufferer . I decided having tried everything that i would change my whole outlook on life. I made massive changes i had to, nothing previously had helped, from treatments to meds i tried them all , without any major long term relief. I decided to work on what i could do , rather than looking for what others could maybe do. I stopped looking for the miracle cure and tried to figure out how i could improve my life. I started to believe that instead of being controlled by CRPS that i would control my condition. I started by figuring out if i could control the things making my condition worse. Commonly known as triggers. I found the main ones being stress, fatigue ( no sleep) other peoples perceptions, depression etc. I then decided to try and tackle these 1 by one.

Heres my results. Before i undertook this i would have 3 or 4 flair ups a month lasting 4 days to 2 weeks. Total bed ridden unbelievable pain imobility etc . In the last 4 years no more that 10 fllair ups lasting more than 2 days. Im not cured its incurable but im massivley better. I am more active , sleep better , cope better etc

And best of all i went from 100mg mst plus liquid morphine and 1200mg of gabapentine plus other drugs which i took for around 7 or 8 yrs to nothing at all.

Yes i now take nothing. It was alot of hard work but i feel so much better. Do i still have pain of course. But i dont let it take over and managing my life means i now have understanding what is causing my pain and how it all begins. So i work on these things . It was so difficult but nothing new is easy to learn . I now tutor groups in chronic pain management which helps massively and seeing people improve is such a buzz . Im not saying every technique helps everyone one but if one thing helps then its great. Ive heard alot of people say mumbo jumbo but stay the full course and take away things that have helped.

I think for me i am very driven and when i do something i throw the kitchen sink at it.

Im very regimental and this probably helped me.

I hope to improve the life of many as i know first hand the struggles.

But change can only happen with lots of effort and determination not to be beaten.

Cheers all

Dave

[kookee]

Hi Dave

Your post is very positive - thanks for sharing. It shows how taking control and trying different things can benefit us hugely. We're all individual and you recognise that. I think Drs, whilst saying they recognise this fact, are limited to using drugs and/or evidence-based practice which narrows possibilities.

Wishing you all the best and keep up the good work,

Kookee

[Spudster1 in reply to kookee]

Hi very nice to hear positively,I too try to stay positive now and find different ways to cope with the constant pain,I have been having a weekly massage that helps for a short period of time and this might seem daft but my dog spud the bond we have makes the pain bearable.

[debsreed in reply to Spudster1]

You're right.....pain is inevitable but suffering is optional. I have full body CRPS lost independence etc etc live in my own so it's tough, but where there is life there is hope! In America we're called CRPS angels and RSD warriors... Made me smile, God Bless fellow angels and warriors!!!

[Davek723 in reply to debsreed]

Thank you for your reply CRPS is horrible but only rarely does it beat me. I gave enough of my life away to it. Not anymore.

Keep well stay strong.

Dont be dictated to by

4 letters

Dave

[nedd in reply to debsreed]

Pain is inevitable but suffering is optional !!!!!!!!!!!!!!!!!!!!

I wonder.

[coolpolitealex]

I'm sorry but I can't accept what your saying because if one is in pain to such a degree that you need to take such powerful pain relief then no amount of mental agility will do unless of course the pain in the first place was not that painful and I know a thing or two about pain.

That said, you can help yourself to a degree by not allowing yourself to focus on the pain and distraction, relaxation etc and of course the side affect's and effect's of powerful pain relief drugs do have their own negatives that can in themselves add to ones pain due to stress tension etc.

You see what you are actually saying is that pain is all in the mind, "yes you are" and if that is the case it makes a mockery of people who wrestle with "Chronic Pain" " everyday" waking them up in the night , muscle, nerve, and spinal pressures, and arthritic pain just can not be controlled by a belief in Angels and such-like spiritual mumbo-jumbo, I wish it was then I would not have to be here.

But if it works for you, who am I to mock it, best Alex

[Davek723 in reply to coolpolitealex]

Hi there. Not sure if my post has therefor came across as i wished having read your response.

I think in my post i did name my condition. Complex regional pain syndrom . I have this full body which is quite uncommon.

There is a pain scale which rates CRPS As one, if not THE most painful chronic pain known.

So i really really do completely understand unimaginable pain.

I have lived through periods you describe of waking up crying when joints have dislocated through either crps or spasms caused through crps. I ve lived with not being touched or having things touch me without unbelievable pain ,lived with not feeling pain when i should and feeling too much pain when there appears nothing wrong.

I have taken massive doses of morphine both tablet and liquid had ketamine injections etc.

So without doubt i can assure you that my pain was and when i have it now very very real and extremely painful.

In my post i mention different ways of coping strategies some which work for me some which work for others. At no point did i suggest these would work for everyone. And niether did i suggest that your or anyone elses pain was all in the mind.

I was attempting to pass on wisdom learned from tutoring people with chronic pain. I tutor licensed studied programs proven to work with chronic pain. I never once intimated i could cure chronic pain . The post was only for one reason to help people. To be honest most of the replies have been positive. So im sorry yours doesnt seem to be .which i totally respect as your opinion.

I cant actually remember what parts of pain management i posted but im positive none of it was spiritual mumbo jumbo.

If you dont believe living your life the way i do and many others do that ive tutored then that again is your perogative.

Your mind is a very powerful tool and if it can be used to help you be less stressed less anxious more relaxed less fatigued less depressed more positive etc etc etc and this in turn helps your pain levels or the amount of flair ups etc then surely that is a good thing.

The imformation i gave is studied by and produced by experts from around the world its proven to help people with chronic pain live a better lifestyle. If you dont agree like i say your opinion does not in any way deter me from my voluntry work helping deliver these course. I could give you a huge number of people who love these courses. The reason being that they dont feel patronised as they understand that i too have a chronic pain condition. .

In no way shape or form have i made a mockery of anyone in chronic pain . I have given my side how i cope and how people can cope . Chronic pain management is not an exact sience or a one size fit all answer but its my belief that you can improve living with your condition and not being a victim or suffering from your condition . I dont think i said anywhere that i dont have any pain or that i have the cure.

I have also posted other stuff on here with almost fully positive reaction.

If my post in anyway suggest anything other than me being helpful then i apologise for that.

Many thanks dave