Dear Audy,
Ugh, my hands are killing me. This is the most frustrating sort of flare that I know, I can't escape the pain and I can't make it better...grrrrrrrrrrr.
This is a short clip I recorded last night to try and show you what it looks like when this happens. It's kind of hard to tell, I guess, when you don't know what my hands normally look like. My skin texture is altered, it is shiny and smooth...I have no idea about the science behind why that happens, but I would really like to! My range of motion is very limited and they are kind of puffy. It's hard to describe, but to me they just look odd.
When I mention that I take more drugs to help when the pain flares, I am referring to Di-Gesic. This doesn't stop the pain, but it takes the edge off and makes it a little easier to deal with. It also completely spaces me out so I hold off taking it for as long as I can and try not to use it two days in a row.
Sorry for the sidestep from my RSD story into current events. I have two more installments involving a jaw dislocation and how the pain moved into my hands. I'll record and post these as soon as I am able.
Love & Waiting,
Caf
6 comments:
ack!
that's sucktastic!
I hope you feel better soon!
Spoons!
Soli Deo Gloria
I completely understand your pain. It is a daily reality for me too. Hope your flare passes quickly
Hi there sweetie! Have you ever tried lyrica for your pain? My mom takes it and it has helped her. And I am sure docs have thought of this, but maybe not..have they ruled out scleroderma? Have been thru the tests and possible dx a few years ago for autoimmune diseases.
I spoke with a man whose wife had RSD in her hand and her doctor prescribed washing dishes as a treatment, well sort of ;)
She was to fill the sink with warm water and go through motion exercises in the sink. Many times during a flare people would suggest getting in the tub (cause my lower leg couldn't fit in the sink, lol). So maybe you could try the warm water sink idea to help you through your next flare.
Hugs.
Oh, hon, I so feel for you. :(
I have CRPS in my leg which began as an Achilles injury and now involves my foot, ankle, lower AND upper leg. Blasted, evil disorder it is, too.
I take Lyrica (pregabalin) and Zytram (tramadol) for the pain, which don't make me spacey but do help make the pain bearable. I live in Canada so the drug names might vary for you. :)
Anyway, I want to say something in particular: I ACKNOWLEDGE your pain, your CRPS. I can SEE on the video that certain waxy, almost plastic looking appearance the skin can take on. For me, having people recognise that something is happening to me is very important, but it is so hard as - I'm sure you know all too well - CRPS is too often a largely invisible disorder.
Know you're not alone!
Hugs and better days to you.
lisa
I just found your blog and saw the video of how your hands were reacting to the RSD today and hate that it is a hard time for you right now. I to have RSD, mine is in my left foot. As you know, there is never an easy answer to ease the pain, sometimes heat helps, sometimes it ice. Are you on daily pain meds? I take 3 morphine a day along with supplemental oxycodone for my pain to keep my under control as best I can. If I'm late taking my meds I pay dearly for the delay, nothing will touch it after it gets past a certain point.
I recently had my 3rd foot surgery (11.19.08) and I'm now taking physical therapy and it is actually helping me with the pain as my range of motion has increased and I'm more aware of my posture when I walk and try to keep my gate aligned. Maybe there is a P.T. you could do for your hands?
Thank you so much for sharing with the world the visual of how this disease can affect your body.
Good luck to you, I will keep you in my prayers.
Kim
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