Quote:
Originally Posted by zookester
I'm glad you can manage without meds and wish I were in your shoes to do so!!
The pain of CRPS for me, is the feeling that my muscles are being cut or torn down my thigh, like two hot wires are being touched together from my groin to just below my knee's, random extremely painful lightening bolt pain throughout my legs and never ending burning.. my right leg has been swollen since the day I awoke on the recovery table, it is cold and blue even though it burns and even the slightest cool air to hit my leg causes the hot wire pain to get substantially worse as does the swelling. The skin is so sensitive to the touch that I can't even lightly brush a piece of lint off my thighs etc., and these pains are constant every second of everyday .. So YES, I can tell the difference between the side effects and the pain of CRPS. I am still battling the shame I feel for relying on them - if I didn't I would need a padded room!
So glad you don't require so much and I hope this continues for a very long time!
Just like the symptoms of CRPS are different for everyone our medication choices and tolerance are all also very unique and it takes a ton of patience and trial and error to get a good combo in place.
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Thanks Tessa. It certainly does take a while to get things manageable!
I want to just make it clear that although I don't have the pains you describe every minute, I do have them on a regular basis and daily, and they are hellish, as you know
My problem is that my limited meds are to do with the fact that nothing I've tried so far has had enough effect on the symptoms to make them worth taking. All were tried under supervision of my pain doc and all given a chance to build up and get past the early intolerance issues. Last time I saw her we discussed the fact that my choices for meds are very limited now unless I go the route of opioids - and given my limited experience with them, and with the way my body has reacted to other meds, they would almost certainly rob me of the ability to work in the way that I can at the moment, and more importantly the ability to be the kind of mum I want. I can't bear the thought of that so I have the pain and a clearer head. When my kids have reached adulthood, I'll probably give the opioids a try.
I'm not offended, and I'm certainly not comparing my pain with yours or anyone's. It's not that I don't require much - I wish it were! Although I hate taking meds, I must confess to wishing I could take something that actually helped more. Ironically the low Lyrica dose does more for me than when I was on a high dose. This is a strange disease, and as you say, we (and our bodies) are all very different
I don't think me taking little meds makes me lucky or brave or mad or anything else lol, it's just the way me and my CRPS have worked out for now. I live in hope that me and my doc will find something that works better for me! I'd take that like a shot
Good luck everyone and have a peaceful night x
Bram.