CRPS and My Virtual World

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2 years 1 month ago #29706 by Canjam
Replied by Canjam on topic CRPS and My Virtual World
Hi Everyone, not sure if anyone is still around, but I wanted to jump on and say hi.

I have just read through the whole thread and felt I got more understanding about CRPS than what my medical team have explained. Thank you for sharing all your stories. I was under the understanding that it’s not permanent and yet I take it that isn’t correct, it just may be.

I was recently diagnosed with CRPS after a simple carpal, cubital and guyon’s release made my symptoms far worse. It was only after I saw a pain specialist that he stated my presurgery symptoms were already consistent with CRPS. I’ve taken to getting off all the meds that I’ve been prescribed as the pain is still there regardless of meds and the side effects were huge for me.

Would love to hear how everyone is still going, what’s working for you, what doesn’t etc. my pain specialist has me reading a book that I have to admit, contradicts everything else my hand therapist and surgeon has said otherwise I had the option of the spinal cord stimulator which has freaked me out a little.
Thanks for reading!

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2 years 1 month ago #29709 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Canjam
Well I’m still around and will reply more fully as soon I can. I am in my eleventh year of CRPS so I guess I am an example of it not going away- sorry to tell you this. . Crps is different for every person in terms of symptoms and the extent of impairment or disability that can result.. one question though can you tell me the name of the book you are reading?
I look forward to talking more soon. Best wishes Josie

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2 years 1 month ago - 2 years 1 month ago #29711 by Canjam
Replied by Canjam on topic CRPS and My Virtual World
The book is Manage Your Pain by Dr Michael Nicholas, Dr Allan Molloy, Lois Tonkin and Lee Beaton. It is an interesting read, just hard to work out whether to follow the book or my therapists/surgeon.

I prefer to know how others are going instead of having false hope. Sorry to hear it’s still going on for 11 years strong though.

Look forward to chatting.

Normally we edit out any reference to Drs names on the forum but seeing as it’s a positive addition and we all may get some self help by reading it.
Thank you Carjam maybe one of the other moderators May edit the names but I think I’ll leave it alone.

Cheers
Johnno
Last edit: 2 years 1 month ago by Johnno.

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2 years 1 month ago #29714 by jo.m
Replied by jo.m on topic CRPS and My Virtual World
Hi
I have been managing CRPS since 2014 and although the symptoms are horrid I have now reached a stage (after much treatment) where some days are better than others and some days can be bearable.

My symptoms became apparent after I had nerve burnings of my cervical spine and the first few years that followed were horrendous. I luckily had a great team looking after me and after working on GMI training, hydrotherapy with GMI, physio, connect therapy, neuropathic pain relievers, psychology treatment and Reflexology I have reached a much better level.

I have read the book you mention (as I use to work with one the Dr’s mentioned) but honestly have found the things I have learnt in the last few years more helpful for me. However, I think everything is worth a read or a try as we all react differently to all treatments and it’s more important what works for us as an individual.

I have been down the road of a spinal stimulator trial too but after a not very successful trial for my cervical area I decided not to proceed.

I’m happy to discuss CRPS with you further so feel free to message me if you want to.

Welcome to our forum

Jo

"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none

When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"

Annie - The Movie
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2 years 1 month ago #29715 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi again Canjam
Thanks for the details about the book.
I have read that book in my early years of CRPS and I took a real dislike to parts of it-in particular where it talked about 'being afraid to move in case you did more damage' which I saw as irrelevant to CRPS pain -we are afraid to move/do too much because of the extreme pain that it can cause, there is a fine line as to how much we can do before pay back which in my case is paroxysms of severe shooting pains in my foot and leg. I do not know of any book on general pain management that addresses CRPS pain. One book that I really like is called The Pain Book by Philip Siddal, Rebecca McCabe and Robin Murray, it is an Australian book that my pain management clinic recommended. I like this book because it really address all aspects of how chronic pain affects our lives, our families and relationship, etc and offers some good advice and ideas.

It is important at this early stage of your CRPS onset that you do what feels right for you, a stimulator is a serious step to take and the trial and operation is invasive. I have had mine for 5 years and have no regrets (although it does not stop all the severe pain but I seem to have less episodes). My decision to go down that road was based on the fact that nothing was helping my pain in any way at all –medications did zero, I was depressed and desperate for something to change.

I think it is important to learn as much as you can and do as much as you can to maximise your movement but not flare you pain through the roof, also try not to have unrealistic expectations. On the plus side things can improve and not all days are bad (keep that in mind during a pain flare) CRPS is unpredictable and no one can forecast how it will affect you in the future, this is hard to grasp and not something we are comfortable with-I like certainties, who doesn’t. Pacing is also important and it is good to learn about this from a Physio or OT who understands CRPS, there is actually quite a lot to it and it needs to be tailored to the individual. If you are happy with your specialist be guided by him/her.
You can also private message me if I you want to talk further.
Let us know how you progress, as you can see this topic is coming alive which is a good thing as CRPS is a lonely disease and we need support.
Best wishes
Josie.
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2 years 1 month ago #29721 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hi Canjam, I also have crps. I have had it for 7 years now, but it took 19 months to get diagnosed.
Mine started in my right hand, which at the time, I thought was cramps from writing, or arthritis.
I've found that I received different views from various people in the medical profession. It can be so confusing.
I found that forums such as this, gave me guidance and support that I hadn't received from the medical profession.
I am on meds, which keep me reasonably stable, but flare ups still happen and I can still over do it.
Learning to pace yourself is a tricky thing, which I still have to work on.
Hope you're doing ok.
Rosie.

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