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 01-12-2010, 03:42 PM #1
Swmnupstrm Swmnupstrm is offline
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Default Please, I am so confused -

Tingling/burning/stabbing pain started in both feet in October after starting a walking program.

Tested negative for diabetes.

Neuro and Neurosurgeon checked MRI and stated it is not back related (I have very little back pain), although neuro has referred me to PT. The surgeon opines it is bad walking shoes, stay off my feet 2 months get good shoes, and call him if it is no better.

Ok, I've been off my feet for over a week now, doing PT for back and it's getting WORSE I chatted with someone who has RDS today who thinks this might be my trouble.

Other than the pain, no swelling has been noted in my feet by the neuros or int medicine physician. No redness. I don't notice abnormal sweating just wearing sock around the house. No strength deficit, no reflex deficit.

However, if there's a chance of RSD, it looks like ice and methadone are not good things to treat with, and that's part of what has been suggested.

Any opinions? I can't get in to see the neuromuscular guy until Feb 1, and I am afraid of causing more damage.

Laying in bed at night, the pain eventually goes away and will stay little or none as long as I am on my back or side. As soon as I get up - there it goes again. I do take trazadone 100 for sleep.

Thanks anyone.
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kathy d (01-12-2010), loretta (01-12-2010)

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Old 01-12-2010, 04:07 PM #2
kathy d kathy d is offline
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Default Take it one step at a time

Dear Swmnupstrm,
First of all take a deep breath and try to calm yourself down. I don't even know you but I can tell by your writing how upset you are right now. I know this cause I have been there too. I am sure we all have. Could it be a scaitic nerve running up and down your legs? Or RSD spreading? I'm not sure but if you feel better lying on your left side (I use a pillow for between my legs and it helps a bit) do that and then get up slowly and do whatever you need to do and then lie down again. That sounds like my routine. I am up and down all the time in order to get things accomplished around my house. It takes me so long to get anything done but at least things are slowly getting done.

Also, try taking the sock off your feet. I know I cannot have anything on my feet in the morning as it makes the RSD worse. If it is RSD then ice is the worst thing for it. It messes up the nerve fibers in your body and makes the pain worse. Meth sounds like a drastic pain medicine to take right away. Have you been on it awhile? There must be something less addictive you can take. Funny thing is I take Fentanyl as a patch and other meds and for awhile I was taking motrin and it helped just to take the edge off but three months ago it did nothing. Our bodies change so much.

It sounds like whatever is wrong worsens when you stand up and put pressure on your body. I have the same problem in my right foot/leg. It is a compression problem. I think you might want to lay off the PT or at least lighten it up a bit until you see the doctor on 2/1. Best of luck to you and I hope you feel better soon.
kathy d




Quote:
Originally Posted by Swmnupstrm View Post
Tingling/burning/stabbing pain started in both feet in October after starting a walking program.

Tested negative for diabetes.

Neuro and Neurosurgeon checked MRI and stated it is not back related (I have very little back pain), although neuro has referred me to PT. The surgeon opines it is bad walking shoes, stay off my feet 2 months get good shoes, and call him if it is no better.

Ok, I've been off my feet for over a week now, doing PT for back and it's getting WORSE I chatted with someone who has RDS today who thinks this might be my trouble.

Other than the pain, no swelling has been noted in my feet by the neuros or int medicine physician. No redness. I don't notice abnormal sweating just wearing sock around the house. No strength deficit, no reflex deficit.

However, if there's a chance of RSD, it looks like ice and methadone are not good things to treat with, and that's part of what has been suggested.

Any opinions? I can't get in to see the neuromuscular guy until Feb 1, and I am afraid of causing more damage.

Laying in bed at night, the pain eventually goes away and will stay little or none as long as I am on my back or side. As soon as I get up - there it goes again. I do take trazadone 100 for sleep.

Thanks anyone.
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Old 01-12-2010, 04:13 PM #3
Swmnupstrm Swmnupstrm is offline
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Thanks. I don't have problems with thngs touching my feet. I can sit with an afghan covering them and it doesn't make a difference. I will try ditching the socks and see if there's any difference.
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Old 01-12-2010, 04:51 PM #4
Jimking Jimking is offline
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Quote:
Originally Posted by Swmnupstrm View Post
Thanks. I don't have problems with thngs touching my feet. I can sit with an afghan covering them and it doesn't make a difference. I will try ditching the socks and see if there's any difference.
Swmnupstrm, I'm not a doctor nor someone who suffers from RSD, my wife has RSD in which I've observed for several years. I have a hunch you do not have RSD but I could be very wrong. The positioning of your body with pain relief and as long as you're off your feet the pain goes away is an indicator to me you do not have RSD. It does sound like nerve pain or damage but not a disease. This is just my opinion only. I hope you get to the bottom of this quickly.

jim
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Old 01-12-2010, 05:01 PM #5
AintSoBad AintSoBad is offline
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it may or may not be rsd. it may be neuropathy. I've had rsd since 83, and have used methadone since 1990 or so, why do you say that's not good? It' works so well for me, and many of us. Ice, not so good. You may try warm water and Epsom salt soaks.
Rsd does Not need to present with discoloration, and all the other things other than pain. That yours gets better when you lay down is odd. Ask your neuro to rule rsd out.
I wish you the best!

Pete
asb
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Old 01-12-2010, 05:22 PM #6
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Originally Posted by AintSoBad View Post
it may or may not be rsd. it may be neuropathy. I've had rsd since 83, and have used methadone since 1990 or so, why do you say that's not good? It' works so well for me, and many of us. Ice, not so good. You may try warm water and Epsom salt soaks.
Rsd does Not need to present with discoloration, and all the other things other than pain. That yours gets better when you lay down is odd. Ask your neuro to rule rsd out.
I wish you the best!

Pete
asb
If you are a heavy overpronator in inappropriate shoes, might check out tarsal tunnel syndrome. Especially since it started after initiating a walking program. I would think sciatic or lower back issue would be unlikely to have started simultaneously in both legs. That would suggest a central compression (cauda equina-like) syndrome for which foot tingling would be the least of your problems, to say the least! There are other metabolic conditions that should be explored.
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Old 01-12-2010, 05:49 PM #7
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Quote:
Originally Posted by Swmnupstrm View Post
Thanks. I don't have problems with thngs touching my feet. I can sit with an afghan covering them and it doesn't make a difference. I will try ditching the socks and see if there's any difference.
Hi Swmnupstrm, I'm sorry you are having these symptoms. You have come to a good place. Your symptoms are what I have had, and I have had RSD 15 years. But there are others disorders also. I was misdiagnosed for 4 years. There is a nuclear med test-a x-ray with dye-that confirmed my hand rsd diagnosis. It was a sports injury orthopedic group. Are you in a college town, with major sports teams-like we live in Phoenix Arizona now- They have golf pro's, basketball, baseball, hockey, football thus, all kinds of specialists, very good Drs. I flew back to Eugene, Or (they had the summer olympics trials) track and field. T
We had the RSD Trials for Ketamine here in Scottsdale at the Mayo Clinic.The Cleveland Clinic is well known. You can call RSDSA- the national organization for RSD and get Dr. referrals, give your zip code and get the closest RSD suppport group. We had the annual RSDSA meeting here this spring of '09 It's so important to get a good diagnosis and you can always go back 'home' and continue treatment.
If you have RSD, the physical therapy you already have had may have desensitized your feet. Even though I didn't have a correct diagnosis, I did start physical therapy immediately after my breast surgery. My left shoulder froze up-(it was really RSD) but am thankful for the pt. I have full body RSD now. All the therapy I've had has been good for keeping mobile. I have one hand that is partially paralyzed because of delayed diagnosis and treatment.
My toes started curling up off the floor and my Dr. had me in the swimming pool 86 degrees, counter curling and swimming, and in 4 months, they were touching the floor again and I was walking-That's been about 3-4 years ago.
We are all different, what works for one doesn't work for someone else, please get a diagnosis as soon as possible. NO ICE Reasearch any procedure- you don't want this going full body. Wish you the best. A website I learned a lot from is rsdrx.com then turn to puzzles. It's a list of 146 puzzles or questions with Dr. Hooshmands answers. He is retired now in Florida and turned a lot of clients over to another RSD Dr.
If you give the forum where you live general idea, they can tell you if there are experienced RSD Dr. nearby. Hope the best, loretta with soft hugs
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Old 01-12-2010, 06:43 PM #8
keep smilin keep smilin is offline
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Quote:
Originally Posted by loretta View Post
Hi Swmnupstrm, I'm sorry you are having these symptoms. You have come to a good place. Your symptoms are what I have had, and I have had RSD 15 years. But there are others disorders also. I was misdiagnosed for 4 years. There is a nuclear med test-a x-ray with dye-that confirmed my hand rsd diagnosis. It was a sports injury orthopedic group. Are you in a college town, with major sports teams-like we live in Phoenix Arizona now- They have golf pro's, basketball, baseball, hockey, football thus, all kinds of specialists, very good Drs. I flew back to Eugene, Or (they had the summer olympics trials) track and field. T
We had the RSD Trials for Ketamine here in Scottsdale at the Mayo Clinic.The Cleveland Clinic is well known. You can call RSDSA- the national organization for RSD and get Dr. referrals, give your zip code and get the closest RSD suppport group. We had the annual RSDSA meeting here this spring of '09 It's so important to get a good diagnosis and you can always go back 'home' and continue treatment.
If you have RSD, the physical therapy you already have had may have desensitized your feet. Even though I didn't have a correct diagnosis, I did start physical therapy immediately after my breast surgery. My left shoulder froze up-(it was really RSD) but am thankful for the pt. I have full body RSD now. All the therapy I've had has been good for keeping mobile. I have one hand that is partially paralyzed because of delayed diagnosis and treatment.
My toes started curling up off the floor and my Dr. had me in the swimming pool 86 degrees, counter curling and swimming, and in 4 months, they were touching the floor again and I was walking-That's been about 3-4 years ago.
We are all different, what works for one doesn't work for someone else, please get a diagnosis as soon as possible. NO ICE Reasearch any procedure- you don't want this going full body. Wish you the best. A website I learned a lot from is rsdrx.com then turn to puzzles. It's a list of 146 puzzles or questions with Dr. Hooshmands answers. He is retired now in Florida and turned a lot of clients over to another RSD Dr.
If you give the forum where you live general idea, they can tell you if there are experienced RSD Dr. nearby. Hope the best, loretta with soft hugs
Hello swmnupstrm....

KS here... I sure hope you do not have RSD... but until you see the Dr. on 2/1..I think it be best to take it real easy on yourself...Monuever yourself what ever way you can to elevate your pain..take good notes to share with your Dr.... you may have something totally different than us RSD'ers here... I hope they will be able to give you satisfactory answers quickly and begin treatment.... I wish you well... What ever your diagnosis is..know that we care to hear from you and that we care about you!!! Let us know what they find....

Rest easy! Keep smilin....
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Old 01-12-2010, 10:34 PM #9
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I lean toward agreeing with Jim that you may not have RSD at all. Since the 1st day of my illness,repositioning myself has no affect on my pain at all. Good luck and be sure to keep us all informed
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Old 01-13-2010, 11:02 AM #10
Swmnupstrm Swmnupstrm is offline
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Thanks for all the input. I am located about 90 miles from Jacksonville, Florida and will be going to Shands on 2/1. Just trying to hang in until then. Wondering if I should ask internist for blook workup before I go.
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