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11-02-2008, 07:42 PM | #41 | ||
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Thanks for the reply Karen,
No we have not noticed any real skin color changes. At first I used to see an area by her ankle change color from Blue to white at times but it did not stay one color or the other. Then I realized that the uneffected limb also had that shade from time to time. Are the color changes perminent or do that change back to normal from time to time? Her skin is not sensitive to touch or air. Not yet anyway. It just hurts during the exams when the doc "pokes" her as she calls it (applies pressure to the areas that cause her pain). At first the Doc thought there may have been a slight diff in temp from her uneffected limb but then thought it could be due to the lack or use and circulation in the limb. Thanks so much again for the response I was worried about the emg. Do you think it will show if their is an entrapment. Do you know what nerves should be tested? |
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11-03-2008, 01:51 AM | #42 | |||
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The skin discoloration that comes with rsd is permanent and is always there. It started in my leg/foot and the only time it wasn't a blue/purple color was when I put the leg up. It's been 5 1/2 yrs now and is still the same. My hands and arms are discolored if I let them hang down at my sides.
The emg will show an entrapment or injury to a nerve or nerves. It'll show up as an abnormal reading. I don't know enough about the names of nerves around the ankle or foot to know what to test for or not to test. A thorough emg test will be done at several points in and around the point of pain. What is her pain like? Like, is she always in bad pain or does the worst pain come only when she tries to use or move her ankle and foot? With rsd the pain is always there. It can vary in intensity depending on the weather, activity level, things like that. But it never lets you forget it! LOL Some days it's a real bad pain day for no reason as well. I hope I'm explaining myself well enough. It's hard sometimes to find the words to explain the pain. Using myself as an example, my pain fluctuates all day long. When I wake up it's pretty bad until my pain med kicks in. It goes up and down all day long too and can stay bad if it's raining or there's a cold front coming through. If I do too much I'll hurt a lot more. It is always sharp, stabbing and shooting. Since almost my whole body is affected it moves around. Sometimes my muscles hurt along with the rest of the pain and at times I can feel the pain in my bones. Taking tylenol or advil doesn't help relieve any of the pain at all. I can't help the pain go down by massaging a certain area or by just not moving it. One minute the pain will be ok, the next second I'll be in tears. Does any of that sound like what she goes through? I hope I gave enough info so you know what I mean. With rsd it's a matter of doing extensive testing and ruling out everything else it might be. It's just there are some "classic" signs that the majority of us have that makes it clear it's rsd. I'd say the top 3 are the constant pain, skin discoloration and temp change. You can have rsd without swelling, without burning and without sensitivity. I've found those without sensitivity of any sort are a minority and might not be present at first but will usually pop up about 2 months. It usually doesn't take too long though. Hope this helps you out. Hugs, Karen
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Laugh until you cry, don't cry until you laugh. Living, loving and laughing with RSD for 14 years and counting. |
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11-05-2008, 11:25 AM | #43 | ||
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The pain she feels is constant, pressure ache (7-8 of 10) all the time but intensifies with activity PT walking long days at school even though she uses crutches. Pointing her foot causes more pain and flexing it causes much much more pain. Motrin 600 mg 3 times a day helps take the edge off the pain for 4 of the 6 hour dose. We are trying Lidoderm 5% patches but they don't seem to be helping. May be too soon to tell. We are taking her to the soft tissue doc today for possible nerve flossing. I'm not sure what that is exactly but feel a need to rule out nerve entrappment before we go back to cleveland clinic in Dec. I'm nervous explaining this to the other Mi docs Thursday. I hope they will still be willing to help do diagnostics like emg to also help rule out entrappment/inpingment. |
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11-05-2008, 11:26 AM | #44 | |||
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247Pain,
I am so very sorry to hear about everything that your daughter is and has been through . Unfortunately I don't have any answers for you but just wanted to say that I wish you all the best and really hope you can get some much needed answers real soon. Please keep us all updated. I have RSD in my left leg and right arm, I developed it in March 2007 when I was 12 years old, I am now 13. If I can help you in anyway, please just let me know, I am more than happy to help you and your daughter has I know how scary it can be dealing with such an horrible illness, especially at such a young age. About the colour changes, my leg and arm can go from being the normal colour one minute to being purple, black or red the next. It is pretty scary. Everyone is different and not 2 cases of RSD are the same. I have tried many treatments and not many have worked for me, I have tried so many medications that I have lost count and the only one that has any impact on my pain is Ketamine. It is really scary being on such a strong med at my age. I have been on 2 intense Physical Therapy programs and the first one helped me (I was stuck in a wheelchair for 13 months) but the second one didn't help me at all. Am keeping you, your daughter and your family in my thoughts and please know I am here for you Love, Alison
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12-21-2008, 07:11 AM | #45 | ||
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Hello, Could you please provide me with any information regarding this Dr. My sister has RSD and it pains me to see her in the condition that she is in. My family and I are at our wits end, we do not know how to help her. Her doctor does not seem to know much about RSD. Please provide us with how to reach your Dr. so that they can look at my sister and decide if she is a good candidate for them. Any information is appreciated. God Bless. |
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12-24-2008, 12:40 AM | #46 | ||
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Some people get the "chameleon effect". My hand changes colors without warning from yellow to reds and blues. Usually it's shiny when this happens and sometimes mottled.
It did it most back between about the 4th and 6th years but still does it once in a while. I can't really associate it with much of anything though it seems to be more likely after flares. |
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03-18-2009, 03:11 PM | #47 | ||
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i have never used this forum, so i hope this part shows up........i don't think i have this either.....i had a terrible injury with compartment syndrome as a complication, but i can't believe i now have RSD/CRPS of any kind.....does anyone have an idea for type of doc who would listen????? |
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03-18-2009, 06:22 PM | #48 | |||
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Hello wyldrose,
I copied your post to a new thread just for you, so more will say Hellos -and add their thoughts. your new thread here- http://neurotalk.psychcentral.com/sh...242#post483242
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"Thanks for this!" says: | Curious (03-18-2009) |
03-18-2009, 10:04 PM | #49 | |||
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Magnate
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Hello Sage, and welcome to NeuroTalk!
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03-20-2009, 08:16 AM | #50 | ||
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It's important to remember from a diagnostic standpoint that not everyone with CRPS/RSD experiences significant skin discoloration and/or swelling. I am in this group, although I've had CRPS for 4 years, which is now in the entire right side of my body. I don't experience noticeable swelling, and although the skin on many areas of the right side of my body (particularly my hand/arm/feet/thighs/cheek) often turn red when cold, this redness goes away when I warm up.
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"Thanks for this!" says: | Gojessicay (06-11-2012), linfull (06-19-2012) |
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