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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Old 07-19-2010, 09:15 AM #1
RUReady RUReady is offline
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Default Daytime/Nightime?

The post by Pacugirl about the heat made me think of this and I wanted to get some opinions...Which do you prefer the daytime or nighttime ? I have RSD on entire left side which also effects my left eye , so I of course prefer the nighttime due to the sensitivity in the eye . But I think I would rather it be dark anyways , not sure if it is part of depression or what , but I cannot wait for it to get dark everyday and I prefer the overcast dreary type of days . I used to be the get up early , work till dark type of person . I think some of this comes with the things associated with daytime and the sensitivity we have to them - the noises , heat , brightness , etc. , hope all are well and take care !
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Old 07-19-2010, 12:13 PM #2
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Hi RU.

Great post! I, like you, have it on the left. Entire left leg/hip/butt and I think it's spreading to my left sholder/arm.

I prefer daytime. I need sunshine and warm temps. This past winter in MD almost killed me. (six feet of snow). I would go to a tanning bed during the winter just to get the warmth and sun. I would just sit in my comfy chair on a heating pad under a giant electric blanket on high, all day.

Unlike you, I can't handle rainy, dreary days. I can "feel" bad weather several days before it arrives. Sometimes it pretty much cripples me. My husband says I have a Barometer (sp?) in my *****. Hmm, maybe I should become a weatherperson!

Hope you get lots of responses. I am curious to see how others deal with this.

Thanks,

Kim
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Old 07-19-2010, 02:03 PM #3
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I am the same with you guys. I thrive for at night time. I hate lights, I always ask to turn them off. Also, nighttime is quieter because my right ear rings all the time.

These are sooo interesting!!!! I am exactly with you RU!!!!

Hannah
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Old 07-26-2010, 02:01 AM #4
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Default Nights

Quote:
Originally Posted by RUReady View Post
The post by Pacugirl about the heat made me think of this and I wanted to get some opinions...Which do you prefer the daytime or nighttime ? I have RSD on entire left side which also effects my left eye , so I of course prefer the nighttime due to the sensitivity in the eye . But I think I would rather it be dark anyways , not sure if it is part of depression or what , but I cannot wait for it to get dark everyday and I prefer the overcast dreary type of days . I used to be the get up early , work till dark type of person . I think some of this comes with the things associated with daytime and the sensitivity we have to them - the noises , heat , brightness , etc. , hope all are well and take care !
Like you, I VERY MUCH PREFER NIGHT-TIME. I have no answer, and wish it were not so, but I look forward to dreary, rainy days and nights. Glad to know I'm not the only one. RSD 8 Years - Left Upper Body, Right Lower and Entire Spine. I am 12 weeks post spinal surgery right now. Neurosurgeon says Scans look like a 2 Week Post Spinal Fusion Patient. Slow is better than nothing.
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Old 07-26-2010, 04:37 AM #5
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Hey. For years it seemed like my pain went off like clockwork, starting around 10:30 am and at it's worst my mid-afternoon.

For years I assumed this was tied to the known peaks and valleys of cortisol in the bloodstream, on account of which people with asthma - who need some vaso-constriction on theier lungs do the best at mid-day and are often in trouble at night. I figured that was sort of a no-brainer, where the vaso-constriction of adrenal "fight or flight" responses of acute stress plays on the systemic vaso-constriction inherent in CRPS: except [and at different times from the onset of CRPS/RSD for different people] at the sites of our original injuries and the most "dependant" areas of our bodies, e.g. the feet. By example, no one has been able to get a 20 guage iv line in me in years. When it's absolutely required, such as a scan where a set amount of contrast dye is pumped in a fixed period of time, I just go strait to a "PICC line" planted in a central vein in my arm with an ultrasound assist.

That said, just over the last couple of years - I've been with this since 2001 - the pain is now often at it's worst by early evening, but late night through the morning I'm still okay. Witness the hour of this post.

But if someone can tell me that daily the cycle of cortisol production can in fact gradually shift within some range over time, then I'm completely sold on the cortisol explanation.

For what it's worth . . . .

Mike
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Old 07-26-2010, 06:27 AM #6
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Definitely night time here. Well, let me elaborate. It's not so much that *I* like the night time as that my body does. No matter what I do, I cannot sleep at night. I also feel my best - relatively speaking, of course - in the middle of the night. It's when I can manage to get myself out of bed, try to do some laundry, straightening my home, etc.

When I am able to sleep at all, it's almost exclusively during the day.

Oh, and my RSD is in my leg, from thigh to knee. Below my knee I still have no feeling whatsoever. Initially that really bugged me. Now I thank God for it. I think if my feeling is restored below my knee and I can feel this horrible pain down there, that might just tip me over the edge.
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Old 07-26-2010, 07:40 PM #7
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Default Daytime

Definitely daytime, especially morning. I feel the best then and have the most energy. As the day progresses the pain increases. By nighttime I am exhausted and just feel spent. Plus the pain meds I take have given their all by around 7pm and I'm not allowed to take anymore (hope to change that at the next pain apptmt).

I mentally love rainy and cloudy weather as we hardly get any of that here in Arizona but it physically makes me hurt more.
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Old 07-27-2010, 08:27 PM #8
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Night time. I have always been an owl, but since RSD it seems like I can actually sleep better in the mornings, usually noon or 1 p.m. When I have to maintain a regular schedule, i require a nap at about 5 p.m. and usually sleep the next time that I am able to until 3 p.m. My mother makes me feel terribly guilty about this. She is a complete morning person and has no understanding about this disease. If she wants me to do something, it is always early in the morning and it sometimes causes real pain problems for me. Makes me wonder if there is a link in there somewhere about rhythms that is connected to this beast. Lisa
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