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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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08-01-2007, 09:45 PM | #1 | ||
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Junior Member
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I'm curious if others experience differences in skin temp. During the day my affected arm is cold and then it gets warm to red hot in the evening. It doesn't seem to matter if I'm up or down during the day but both are indicators of increased pain
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08-01-2007, 11:26 PM | #2 | |||
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Hi Mark
It is nice to meet you. Sorry that it is under RSD conditions though. Anyway..you asked about temp changes. Yep! I have them all of the time too. It seems worse (as are all of my RSD symptoms) in my right foot and leg, where my RSD first started. When I say worse, I only mean that the colors are more vivid, and the temps are more.....erm...what is the word I need here? Not drastic....but...uncomfortable, maybe? Noticeable? Hmmmm. Maybe I will be able to figure out what would work best there. LOL I have noticed that more often than not, my foot (and hand) will be RED when it is feeling hot. I am talking.....cherry red. Fire engine red. You know...red. LOL. That is also when I am most liable to have the more severe swelling. When I am cold...well, that is when things get really weird. I can be a dusky dead palish whitish bluish color...or I can be a more normal color with pink and purple worked in, or I can have all of that because I am mottled. There have also been a few times when I have had a freezing foot, and look down and it is a more subdued reddish purplish color than the very vivid knock you out red that comes with that fever type feeling. Isn’t RSD Fun? LOLOL I most always have a purplish tinge around my scars on the inside (from arch down towards big toe) of my foot where my last ortho cut a nerve in my foot to try to get the pain to stop. Yeah...well...that kinda sorta backfired on me...and then he dropped me like a hot potato! LOL. But, I think that the weird purply color that is most always around that area has to do with that last surgery and the nerve getting all messed up. I don’t know for sure, as no doc has tried to explain it to me....this is just what I have come to think in the over 10 years that I have been contemplating this stuff. LOL It doesn't matter time of day, or if I am up or down when it comes to the temp and color changes. Although if I whack my foot or hand, I am sure to get color changes...and all kinds of stuff going on (besides just the pain, pain pain!). Anyways...You aren’t along with the temp changes and the color changes. That is one of the big things that docs look for in making the clinical RSD dx; temperature changes and color changes...along with the PAIN, of course. I am glad to meet you, and I hope to see more of your posts around here. I am glad that you found us! Take Care, Jose
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08-01-2007, 11:35 PM | #3 | |||
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The last trip to the ER was an eye opener for me. The doctor that examined me discovered that my whole rightside was colder than the other side.
I knew my leg was, but never in my wildest imagination would have thought it could be affecting the entire side of the body. He said it is advanced stages of RSD, and not much he could do but try to keep me comfortable. I hate when they say that LOL. So it is possible and more
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08-01-2007, 11:43 PM | #4 | |||
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Magnate
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I posted here about the barometer change and my RSD flaring. I had a cold hand and foot the whole time.
I too am glad you found the forum, Mark and hope you stick around. Ada |
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08-02-2007, 12:43 AM | #5 | |||
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Hey mark! Welcome! yup, as the others said, this is so normal! Today when I went to physical therapy and I have a brand new tens unit that my PT was working with.. and I sqaid to her.."Look at this?" here, my hand.. mainly all of my fingers on my right hand were a deep purplish-blue and so cold!! Today, as I was talking to a friend on the phone, I was messing around with my tens unit and instead of shuting it off, I switched the entire way to the highest setting and it felt like someone had just ripped my entire right arm off!! LOL I was so afraid to turn it back on, but did. It helps reliev some of the pain. I am so glad my hubby gets his for free, but never uses it! so sad!! he has neurapathy and said he hates the way it makes him feel. My PT worker told me to keep it on and get used to it.. I GOT USED TO IT ALL RIGHT!! LOL welcome again Mark.. sorry you have RSD love,Desi
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08-02-2007, 08:08 AM | #6 | ||
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Hi all,
Has anyone ever had a Theromgram? If so it is very interesting to see that the temporature changes we feel are not just a feeling but a reality. I had a Thermogram as a diagnostic tool requested by Workcover and the differences were extreme with some areas of my body being & degrees colder than others. I will see if I can post the pictures onto the site. It is certainly an undeniable way to confirm diagnosis. There was never any query from WC after this was done. Cheers Tayla |
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08-02-2007, 01:19 PM | #7 | ||
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Although I am sorry that you have RSD, you have found a wonderful place for information and understanding. Best regards, EJ |
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08-02-2007, 04:48 PM | #8 | ||
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Member
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I used to have a really bad time with color changes and temperature changes.
This is my second time with RSD. This round, when I first got hurt, we switched my high blood pressure medication to clonadine as it was supposed to help RSD. I was on it for about a year and a half. I still had a nearly full bottle of a high blood pressure med called norvasc from a couple years ago... expiration date showed it was still good. I asked my family doc if I could try going back on the norvasc till I used it up. Within 2-3 days of switching from Clonadine to Norvasc.... my color and tempertures returned to normal. No more purple/red hand and arm, no more hot and cold. And, no more keeping a glove with me EVERYWHERE for when the hand got cold. I used to take a 10mg tablet once a day. But, we found that using a 5 mg tablet every 12 hours works better for the color and temperature. Norvasc has REALLY made a big difference. Even the shiny skin has resolved. My hand used to look really really shiny, now not shiny at all. So, I think it is worth giving one of the blood pressure meds a try if you can without having your blood pressure go down to much. Never thought I would be happy to have somewhat high blood pressure - but with RSD, having high blood pressure does make more medications available to try. It has helped the swelling in that hand too. Jules Last edited by daylilyfan; 08-02-2007 at 04:55 PM. Reason: for clarity |
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08-02-2007, 07:47 PM | #9 | ||
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Junior Member
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I appreciate all of the words of support.
Interesting, I have been on Clonidine forever. Since I haven't had the opportunity to talk with others that have hit this horrible lottery, I have another question. I'm curious if others' pain is like mine, not the type of pain, a knife jabbing repeatedly into you or being electrocuted over and over again. Oh, the joy. Instead, I'm interested in how you pain onsets and cycles. I have always described my pain in terms of waves. It is always rolling up and down. It just depends on how high it gets, how long it stays up, and when will it be up again. I know this has no real point, but I just curious?????? Mark |
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08-02-2007, 09:18 PM | #10 | |||
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Mark, this pain does when and where and "wherever" you are and doesn't care when it hits you!! I can be sitting there calmly watchig t.v. and wham.. all of a sudden, I'm down for the count! Also. I did notice when I am stressed, anxious is where it hits out of no where too!! take care! Love, Desi
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