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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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11-29-2009, 05:16 PM
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Use it or lose it is my mantra. I live by these words, and always overdo it LOL!
A couple of months ago I had my annual physical, which was about 2 years over due LOL. The doctor checked me over thoroughly, and then told me he was surprised by how much muscle was present in my right leg. He thought it would have been much smaller than the last time he checked it out. He then told me that it was still in pretty bad shape so dont get any ideas of going mountain climbing or anything. He then asked me what I thought was the reason it hadnt shrunk up worse. Use it or lose it was my reply. It has been almost 10 years with this monster, and I am getting pretty good at knowing how far I can go with using it. But I still overdo it because my mind likes to finish things, so im constantly pushing the pain envelope so to speak. I remember way back when I found this place, it helped me to figure out my boundaries. It was good to find people dealing with same issues as me, and I know they are looking for the same things I was. This is a scary life changing ordeal, and might take some a few years to adjust to just the changes in their lives. Not to mention what they deal with in pain on a minute to minute basis. I remember how mortified I was to find out that life was permanently altered, and there was nothing I was going to do about it. I prayed for miracles, but found that this place was the miracle. It was what helped me to adjust to my new life, and also gave me a purpose, to help those that I could that found their way here. I dont get on here as much as I used to because I have learned to keep busy, set goals, and enjoy life as much as I can while I still can. It hasnt stopped the spread, or the pain, but has let me see life in a much more positive way. Quote:
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11-29-2009, 08:52 PM
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#12 | ||
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In Remembrance
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I want to say something about my initial post in this thread...
I certainly did not mean to sound cold or uncaring to those who experience the spread of RSD. I know, it can be horrifying, and I didn't mean in anyway to belittle any new folks, or anyone who is experiencing the spread at anytime! But, as most here know, I can get a little rambunctious and come across harshly..? Everyone who's replied has been great. I just wanted to point out that, if you choose to just "sit around", without "getting around", and get out and see some friendly faces, and move your body, it will deteriorate. Depression will worsen, and that becomes a pain cycle that will require more meds. By "Use it", I didn't mean lift weights! In the very painful areas, we should try our best to maintain our entire range of motion, unless a doctor directs otherwise. About the Meds. I occasionally go over with my doctor, what meds can I cut down on, or discontinue? You might be surprised, how many folks I meet occasionally who are still taking "orphaned" meds, that just aren't any longer necessary, or necessary at so high a dose! Thanks, Be good, and remember to eat your vegetables! pete |
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| "Thanks for this!" says: | Sandel (12-01-2009) |
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11-30-2009, 01:11 AM
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#13 | ||
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I'm thinking too about those who are in so much worse shape than I. Some people don't have the option of even walking much less trying to get things done. But we probably all need to do what we can even if that just means a few leg lifts in bed. Unless the doctor tells you otherwise it's almost certainly best to try to do as much as we can. I really hope no one feels worse as a result of anything that's been said here. When you lose some function it can be extremely difficult to get it back as most of us here have some sense for. |
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11-30-2009, 07:11 AM
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#14 | ||
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In Remembrance
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I'm also still very frustrated with the medical services supply system, not knowing enough about this dragon.
Doctors have become "dispensers of cures", which means meds. That they (both the doctors and PT's) don't know, care or have time enough, or get paid enough to find out and instruct especially any "newly diagnosed" patients on how to care for themselves and what to watch for, is infuriating. We look to our doctors often as if they're little gods and they're not. Has anyone gotten their meds from a pharmacy like Rite Aid, and their computer gives you a print out on the medicine? What to expect, watch for, avoid? I'll bet someone, somewhere is working on something like that, for dx's. I know that would be difficult, which is why we don't have it yet, but maybe someday. A doctor just can't afford the time it takes (for ins. payments) to give the kind of service this sort of complicated diagnoses takes. New Health Care? We ought to have, and the doctors should have "difficult DX" classes of something like RSD, or TOS, as compared to a more simple , common type thing. Diagnoses, can often be (in any service type business) the more costly thing, even more than the repair, (I speak of mechanical things). And, something like rsd, well, you know. There are too many "cracks" in the system, that so many people (I was one) fall through. I thank God for some of my luck, not that I got this, but for having good insurance, and Finally, finding good doctors! Life is up and down, and it has "weather". Sometimes it really can be stormy. Sometimes it can be a sunny day. And, usually after the storm, comes the sun. After the dark, comes the light. Sometimes we need to step back, and realize that our doctor, "is not for us". Rather than blame ourselves, and or the disease. Just as I said a re-eval on our meds is in good order occasionally. Hope this finds all well as can be! Pete |
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11-30-2009, 07:25 AM
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Magnate
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do not have this syndrome but want to say, I noticed this thread...
and I LOVE IT! I am in pain due to something going on either MS or fibro or whatever else the dr wants to say... either way spasm pain... pain always... I work full time on my feet managing a McDonald's... and my mom sometimes says I need to quit..well I would love to.. as I have five kids and busy busy life... too busy....ok... but sometimes the less I move the more I hurt... so I am thinking if I ever quit I would be in trouble... I know I could my carcass use less hours... but we can not afford that... anyhow.. my point.. I am in pain enough for tears too many times in life... but then I pull self together and stretch with some yoga...and move what I can... feel if I move less and less I would curl up in pain worse... hugsssss, and I know too... everyone I understand when you just can not... I think point can be even if you can not do much moving.. exercise etc... to do a bit...take good care of yourselves.. hugss,sarah
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. KEEP SMILING, LIFE IS TOO SHORT TO WEAR A FROWN!! . |
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12-01-2009, 02:39 AM
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#16 | ||
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Hahaha! Yep! That's what whe all deal with. BOO! All I can say is "Walk A Mile in My Shoes" I would be MORE than happy to share my pain with them for one hour. I don't want to scare them by giving it to them for any longer! Sorry for your frustration and hurt...
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12-03-2009, 12:36 AM
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#17 | ||
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Hope all is well. 
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12-03-2009, 12:41 AM
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#18 | ||
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P.S. Just kick me in my "good" butt please! Haha!
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12-04-2009, 12:27 AM
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#19 | ||
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I'm still doing a little more but the pain is up a lot. Yesterday I mulched a few leaves and repaired a kitchen cabinet drawer. Also I took care of several little odd jobs.
The doctors always tell me not to worry about the pain so I'll try this a little longer and will take some of the pain killers if it gets to be too much. It feels so good to get things done that I can stand more pain. |
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| "Thanks for this!" says: | AintSoBad (12-04-2009) |
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12-04-2009, 12:55 AM
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#20 | |||
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I tend to view my energy and painlessness as a bank account of some sort. There is only so much of either. My ex used to get so mad at me if I would go for a walk or go sit at the beach and not do the dishes. I would always tell him that I knew I could do one thing before my pain would be out of control, so did I want to do something enjoyable or fold all the clothes? He seemed to think that if I could do one I could do the other. (This doesn't mean that I wouldn't take care of the house... but sometimes you have to pick and choose or you will be miserable.)
And if there is something that I really really want to do, I will rest up beforehand, take meds preventatively, and be ok with being worse off the next day. I call these my "Disneyland days"- as in Disneyland is so worth the next day pains. There was one day when I was in high school that it snowed here in SoCal. Really snowed. And I knew that the next day would hurt like crazy, but I ditched school with my friends and went and played in the snow. The next day was not so fun, but I don't remember that day. I remember playing in the snow with my friends and having literally one of the best days of my life. Lynns |
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