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Old 01-13-2014, 09:43 AM
Brambledog Brambledog is offline
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Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
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Liz, that's very brave to talk about your bipolar and depression, I can't imagine dealing with those alongside CRPS, so I can only talk from my own point of view...

I would guess that every single one of us on this forum has gone or is going through some form of depression as part of dealing with our CRPS. It is a condition that is rare enough not to be understood (or believed) by far too many medical professionals, half the time our own doctors don't understand how it works, and we are in unrelenting pain nearly all the time - pain which cannot be controlled by normal pain relief medication. Even opioids are largely ineffective for most CRPS sufferers. Yet CRPS does not (allegedly) affect our expected lifespan. We could live to 80+ with this pain every day. I think it's fair enough that coming to terms with that sentence involves some mental anguish and depression.

Anti-depressants are available to us, along with counselling etc, but I've been lucky enough to avoid the meds, and came out of the other side of the really dark patch myself. I'm aware though that that dark patch might have been less dark and over quicker if I'd had some medical help at the time, but equally it might not. I'm not sure either way tbh. I think the counselling and the pain management course helped, along with knowing that I wasn't alone with my feelings and fears.

Everybody has different ways of dealing with this both long term and day-to-day. Mine are about positive thinking, distraction and keeping busy (mentally if not physically ), along with my hour a day of CRPS management....I do stretching, gentle exercises, massage and then meditation. It helps me feel in control, and keeps my body in some kind of condition. Not like before CRPS, but better than I was after the first year of it. Through the day I use breathing exercises to cope with pain spikes and stress.

My way isn't perfect, and it's not for everyone, but it's the best I've come up with so far. I struggle with a lot of pain meds anyway, so relief from much of the physical pain hasn't happened for me. I deal with it as best I can, and I think that's all any of us can do. Most days are OK, and better than they used to be. I hang on to that thought, and try to be glad for what I can still do rather than dwell on what I can't. I think that was what I was doing in the bad times early on....concentrating on how much I'd lost and wondering why it had happened to me, and if I'd ever be able to do all those things I wanted to. That kind of thinking is dangerous long-term because it just makes you feel hopeless and afraid. I try to stick to the day-to-day thing...one day at a time, and finding my smiles where I can in the day.

I can't give you an answer on how to deal with the overwhelming fears and feelings that come with this disease at times, but I'd just say to look for the good things whenever you can - lists are good for that, because you can objectively look at the good stuff you still have. I did the good/bad list, and it helped me - the blank page was scary, but once I'd started, and got some of the worst crappy stuff down on the bad side, the good side filled up ok, and better than I thought. It made a difference.

The pain is the thing that we have to find our way with. It can be so overwhelming, and frightening, and you just want it to stop. Lessening my stress has helped me cope with the pain better, and that's where my little daily hour of routine makes the difference.

Experiment with different things yourself and try to find things that make you feel even the tiniest bit better. Watching a film, listening to favourite music, eating chocolate (lol, not too much!), driving out to see a lovely view, being with someone you love, doing a hobby, making music, doing a craft activity or something else that keeps your hands busy.....all these sorts of things can help. Even if it's a tiny amount, 4 or 5 small things in one day can make you smile instead of cry.... I used I cry a lot

Sorry this turned into such a ramble

Take good care of yourself, and I hope you find some good things to help you in the fight. You are always worth fighting for.

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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