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 08-15-2007, 10:31 AM #11
Barb2406 Barb2406 is offline
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Default you may have missed an important clue!!!!!!!!

Welcome Dp,

You said you had a diagnosis from a scan of stress fracture. This is a high probability of where your RSD started.

I too had fractures which was how my RSD started. The only discoloration I have had is some redness and mottling when I have either been in the tub or in the cold.

I was diagnosed at the Cleveland Clinic by DR Michael Stanton-Hicks a well known RSD doc. I have also been diagnosed in San Diego at a rehab clinic, sorry but the name escapes me. While in the process of finding a new PM Doc when we moved back to PA. I saw a PM Doc at my local hospital. She told me she wouldn't treat me as I didn't have an dicolorization therefore no RSD.

I have been with BT 1 and now 2 since 1999, I used to post alot but now I mostly lurk and read, but when I read your post I felt I had to post back and let you know that your symptoms are so much like my own, especially after you added that you had swelling along with the pain. I don't remember who said it but my pain is bone crushing, then almost nonexistant then extreme stabbing pain and it took me till last year to develope burning pain, I still haven't had any allodynia. Just to inform you I am 8 to 9 years into this and I still get blocks when the pain is overwelming. Please continue the blocks, they do help.

God Bless and good luck'
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Barb2406

Knowledge is power!

RSD since 1999 right foot and ankle from fracture of 2 bones, after stepping in a hole at an apartment complex while visiting a hospice patient. Again hunting for a new PMD.
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Old 08-20-2007, 12:10 AM #12
dillypooh dillypooh is offline
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Thanks everyone and Barb I know another Barb that states "Knowledge is Power" on another forum which I won't mention and I think she is the most braviest person in the world
Ok back to my point.
Actually I had a bone scan and it showed possible stress fracture.
And also it showed an uptake in my second toe which was something...something to RSD.
Now I dont have a clue how I got a stress fracture but that's what the test implied. Now please help on this. You say the blocks will tell if you have RSD. Does this mean when they hit the nerve and put the meds there are it relieves the pain that I have it? Sorry to be so stupid.
I get another one Thursday thank God because my foot is swollen and it hurts so bad and it is now goin up my leg. Thanks guys.
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Old 08-20-2007, 03:59 PM #13
wakegirl wakegirl is offline
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Default bone scans

every rsd/crps specialist i have seen have said that bone scan results are inconclusive without further testing. as some others have mentioned block results are far more significant.
in college i had a flare and went to see a local neuro who had me do a bone scan and when those results were inconclusive he told me it was indicitive of a non rsd/crps related problem. from what i have read about bone scans the use in diagnostic testing for rsd was basically the idea that soft spots were indicitive, has anyone had a pain specialist tell them what exactly the relationship between a bone scan and diagnosis might be? i have had a few scans over the years and the results have never been exact...i have always wondered what they were looking at and why the results very so much.
anyway back to your symptoms (sorry i am good at getting sidetracked) as someone discussed i only have significant color changes following introduction to warm or cold water or hot and cold packs. i did have obvious temp changes when my before block and after block extremity temps were compared 3-8 degrees. most of the time i have only minor swelling. the most obvious symptoms i have always displayed was the rediculous amount of pain any amount of touch would induce. back in 1990 when i first displayed the symptoms most of the doctors i saw thought that nerve damage was the cause.
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Old 08-21-2007, 10:05 PM #14
dillypooh dillypooh is offline
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All of your comments really help me and I so appreciate all of you.
Other than the pain management doctor that I see what other type of
doctor should be treating me? A neurologist I am guessing. I had one that
diagnosed my RSD also but I really didnt like him.
Hope everyone had a fairly good day
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Old 08-22-2007, 10:12 AM #15
Barb2406 Barb2406 is offline
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Default Why do you think you need another Doc???

DP,

This is the only forum I belong to and I am not very brave especially when it comes to pain. It must be another Barb.

Just to give you a little info, a stress fracture can happen from bone thinning as from osteoporosis, or in athletes from over use, such as shin splints or by poor diet.

You said you had uptake in your toe from your scan, Dr. Stanton-Hicks says this is a clear indication of RSD. Please don't take this as my saying it, just the Doc, I don't want to have everyone come down on me.

You said when the nerve is injected (believe me when I say,"you don't want your nerve hit at all", I had it happen once and it makes RSD pain seem like a walk in the park) and that isn't what is injected it is the area around the nerves and during a block this gets flooded with medication and if you have RSD it should give you relief for a period of time, everyone is different as to how long your relief lasts.

What makes you think you need more than one Doc? If you are satisfied with your PM Doc and you have a primary care doc why would you need to pay another doc?

Good luck with your block on Thursday and hopefully your relief will last longer with each block and you will go into remission for good. It would be wonderful to know someone that actually went into permanent remission.
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Barb2406

Knowledge is power!

RSD since 1999 right foot and ankle from fracture of 2 bones, after stepping in a hole at an apartment complex while visiting a hospice patient. Again hunting for a new PMD.
.

Last edited by Barb2406; 08-22-2007 at 10:16 AM. Reason: spelling
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Old 08-22-2007, 10:43 AM #16
JOAN_M JOAN_M is offline
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One doctor is enough if you are getting what you need from him. i use my pcp and that is all. he listens, he gives me what i need, he does not push me to do anything i do not want to do, and he believes me. AMEN
joan
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Old 08-28-2007, 10:40 PM #17
dillypooh dillypooh is offline
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Thanks guys I wasnt sure about the doctors. I am seeeing my Pain Management doctor right now and he is giving the sympathetic Nerve Blocks.
The first one worked about 3 weeks but this one didnt work. I think it actually made it worse. Not only hurt my right foot but all of my right side hurts now, Especially my lower back. Wonder how many of these injections can they give you? Oh and I was asking about using another doctor because I didnt know if I should be taking some type of meds. for the condition to help me out. Oh and by the way all day today I poured sweat. Even when I was inside. It was horrible. Of course this has been happening for months but today just seem to be the worst and my cheeks stayed red as bllod like I had a sun tan. Is this a part of RSD?
Thanks for listeneing.
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Old 08-29-2007, 03:29 PM #18
Barb2406 Barb2406 is offline
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Dp,

Your PMD should order any meds you need for RSD including any antidepressants.

You can have as many blocks as your doctor and insurance company will allow. I have had RSD since 1999 and I was informed by my PMD that I could start getting blocks again at my next appointment if my pain increases between now and then.

How about giving us a list of your meds, so we know what you are on. Ok?
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Barb2406

Knowledge is power!

RSD since 1999 right foot and ankle from fracture of 2 bones, after stepping in a hole at an apartment complex while visiting a hospice patient. Again hunting for a new PMD.
.
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