CRPS and My Virtual World

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5 years 8 months ago #18033 by Josie
CRPS and My Virtual World was created by Josie
CRPS -(Complex Regional Pain Syndrome) and My Virtual World

I often read posts from other with crps who are in a bad place, in that place where I have been, looking to try find the best pain management specialist or one who understands crps, trying to find a way to stop or lower the pain, battling to deal with lost jobs, lost identity and lost self. Struggling with not being able to do all the things you used to do, this may be as simple as finding you need help to shower. I listen to people’s tears and read about their feeling of utter despair and depression, how it is impossible to explain to others. Medicine is miraculous these days but I soon learnt that not everything is fixable but try explaining it to other people who just think it is a matter of finding the right doctor or ‘cure’; so we are up against some very set attitudes. “You’re still on crutches people say” (I have been using them for 6 years) You will be struggling with not just your pain but the attitudes and lack of understanding from some of your friends and family and I think this is an ‘occupational hazard’ of having CRPS, especially as there may not be anything obviously wrong with you, so much pain is invisible, how do you show pain is real, you can’t.

So although the members of chronic pain forums are invisible they are my lifeline, they are the others who understand, the ones who I can talk to without having to explain what it is like or what a bad day is and why I didn’t sleep and why I can’t go out this week and why I can’t walk, why my foot is bright red today, why I am weepy. They are the ones who understand that when I am having a good week and can actually put a bit of weight on my bad foot that this is major achievement but they will also understand that the following week things may not be so good, they will not expect me to be cured. They will understand the depth of my losses and changed life and limitations.

I have had CRPS type 2 for six years following surgery to remove a growth on a nerve in my foot, I am significantly disabled by it and I cannot walk without crutches and use a wheel chair or other similar aides. I suffer from the burning pain but also clusters of severe spontaneous shooting pains that are not controlled in any way by all the numerous medications tried. It took me 4 years to find the right pain management doctor who made the diagnosis and offered some more treatment options. Along this part of my journey I gained enormous help from a very good psychologist who helped me pull my life into some sort of order again. I taught myself not to panic when I have bad pain and developed some coping strategies. I do believe it is possible to find a way of coping with your changed life and this monster called CRPS. I have observed my own attitudes change and been inspired by others who after getting through the first year/s become stronger, calmer people-most of the time!

I still have bad days where I break down and cry but I now have strategies for pulling myself out of this downer and back on equilibrium. I guess I have adapted and come to accept that no one is going to take away or fix my pain, that this is my new reality. I now have a spinal cord stimulator which is the first time I have any means of controlling to some extent my pain, it does not stop me having pain flares or bad pain but it has improved things significantly and I would not be without it.

I am writing this post to open a new topic about living with CRPS and hopefully encourage others to share their experiences and feelings, to share knowledge but most importantly to know that you are not alone.

Josie
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5 years 8 months ago #18038 by Peter
Replied by Peter on topic CRPS and My Virtual World
Hi Josie,

Welcome aboard and thanks for writing this post. Hopefully we will get some comments from some people who suffer this horrid condition, because it is an important discussion to have.

Your main secondary symptoms of lack of sleep, other chronic pain, plus all the stuff with family and friends, loss of those people too, plus your job, independence, marriage and family, have been experienced by many who suffer chronic pain. And it never gets any easier.

So you are in the right place. We know and we care and we do not judge, but accept all who come visit and stay awhile.

I hope the Stim works better for you allowing you more freedom from that crippling pain.


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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5 years 8 months ago #18044 by Josie
Replied by Josie on topic CRPS and My Virtual World
Thanks Peter,

The Stim was working better in the first 2 months but then of course I started overdoing it , as we do.

Rosemary

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5 years 8 months ago #18045 by Peter
Replied by Peter on topic CRPS and My Virtual World
Facepalm!

"As we do." Ain't that the truth! Done that a thousand times and will do a thousand more.

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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5 years 8 months ago #18046 by grappers
Replied by grappers on topic CRPS and My Virtual World
And continue to do every time we feel OK, pacing goes out of the mind

Don

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5 years 8 months ago - 5 years 8 months ago #18047 by Mary
Replied by Mary on topic CRPS and My Virtual World
Pacing is a learned way of life. It is so important, but we will always slip up occasionally, sometimes by choice because we think it is worth it and other times because we simply forget. I think I spent about 3 years "booming and busting", not knowing what I was really doing. I developed the philosophy that if I was having a "good" day then it might be worse the next day whether or not I overdid things, so I went at it hammer and tongs - and always paid the price; sometimes for weeks.

Finally, I had some training, realised what I was doing and once I learned to pace with some success, things evened out quite a lot. I think that about 95% of the time when I overdo it now it is by choice. I also find that for me, if I overdo things by choice, my recovery period is shorter than if I just forged ahead blindly. If that makes sense!

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
Last edit: 5 years 8 months ago by Mary.
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