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 10-13-2009, 07:53 AM #1
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Default 1 year and 2 months of rsd

I have had rsd for 1 year and 2 months. Started pm 3 weeks ago. Dr. took alcohol swab touched leg said warm or cold. I really didn't know said do it again, guessed cold then he swabbed my right foot (rsd) warm or cold, I said warm i think. He asked if the bottom of my foot hurt, I said not really. He said I don't have rsd.
I have lived with the burning 24 hours a day. The intense tooth ache like pain, the cramping, and the feeling of my foot being jammed into my ankle all this time. Not to mention the pain of everything touching it, sheets, water from the shower, a six pound dogs foot touching it. Now the s.n.b. Is he doing these to punish me? He put me on stronger vicodin and neurotonin. I still take cymbalta, tranxene, soma, now prilosec because I wake up vomiting.
I crushed my foot august 31, 2008 walking away from my harley. It fell off the kickstand, my toes were down and heel was up. It pinned me for over 2 minutes in this position. No one treated the crush injury just the broken bones they thought they might be seeing. Until foot dr. did mri and bone scan. Was in bed for 9 months. Foot dr. also put me on plavix. It made my foot warm to the touch and not blue. New pm dr. says I don't need plavix just asperin. He didn't even ask why I was taking it. This guy really does seem out to hurt me. I have a call in to foot dr. to see if there is someone else I can go to for pm.
Anyone with rsd in foot please tell me if you think podiatrist or pain man. is right. I won't hold you too it. Thank you all. I am losing my mind and the will to get up in the mornings.
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Old 10-13-2009, 11:57 AM #2
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Default Hi and welcome,

It sounds like you are ready to see a new Dr. If he doesn't think you have the RSDS then odds are he's not going to try and help you with it.

Ada
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Old 10-13-2009, 12:41 PM #3
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Quote:
Originally Posted by stllaborette View Post
I have had rsd for 1 year and 2 months. Started pm 3 weeks ago. Dr. took alcohol swab touched leg said warm or cold. I really didn't know said do it again, guessed cold then he swabbed my right foot (rsd) warm or cold, I said warm i think. He asked if the bottom of my foot hurt, I said not really. He said I don't have rsd.
I have lived with the burning 24 hours a day. The intense tooth ache like pain, the cramping, and the feeling of my foot being jammed into my ankle all this time. Not to mention the pain of everything touching it, sheets, water from the shower, a six pound dogs foot touching it. Now the s.n.b. Is he doing these to punish me? He put me on stronger vicodin and neurotonin. I still take cymbalta, tranxene, soma, now prilosec because I wake up vomiting.
I crushed my foot august 31, 2008 walking away from my harley. It fell off the kickstand, my toes were down and heel was up. It pinned me for over 2 minutes in this position. No one treated the crush injury just the broken bones they thought they might be seeing. Until foot dr. did mri and bone scan. Was in bed for 9 months. Foot dr. also put me on plavix. It made my foot warm to the touch and not blue. New pm dr. says I don't need plavix just asperin. He didn't even ask why I was taking it. This guy really does seem out to hurt me. I have a call in to foot dr. to see if there is someone else I can go to for pm.
Anyone with rsd in foot please tell me if you think podiatrist or pain man. is right. I won't hold you too it. Thank you all. I am losing my mind and the will to get up in the mornings.
Hi Stllaborette and welcome to Neurotalk,
I am so sorry for your injury and problems with pm. I've chanced Drs. and for good reason. I wasn't diagnosed for 4 years. It's been 14 years now and full body and internal.
Sounds like you could use a supportive Dr. If you go to RSDSA and then type in your zip, a name and number of a local support group will come up. A local group usually are aware of the good RSD Drs. (if plural)
I personally go to a neurologist, psychiatrist and pharmacologist. With the 3 degrees, he is my pm Dr. When I was diagnosed with full body by a neurologist, he suggested I see a psychiatrist to help deal with it. I didn't like his two references and found my great Dr. in yellow pages. He has helped me greatedly. Kept me mobile. When my toes started turning up off the floor, he gave me pooll exercises and they were touching the floor in 4 months.
My RSD came following breast surgery. Had therapy for frozen shoulder. Then remission, then other shoulder-more therapy, then remission. Then injured hand while water skiing. misdiagnosed, went another Dr. -orthopedic hand Dr. who diagnosed me with rsd. tests supported it. Started on hand therapy and hand de-sensitization. Desennsitization is extremely important. I couldn't stand anything touching my hand. My hubby had to cut my food. My hand was frozen solid. Anything can touch me now, and I got partial use of my hand, half paralyzed.
So to answer you question, if you can find a foot Dr. with knowledge in RSD, I always tend toward specialists. I have more than one Dr. I also have a female hormone bio-identical Dr. And an internist.
I really believe if you are not getting results from an educated, caring Dr. it's time to find one. I was misdiagnosed on my hand, and it cost me 50% loss of my hand. I fly back to home state, Oregon and was diagnosed in 1 minute. It wasn't till 9 years after my breast surgery, when I told my present Dr. about my surgery and systems, he told me that was the beginning of my RSD. I still remember the Dr. shoving me off to a rehab.Dr.
On the desensitization, get 5-6 plastic bowls and put coffee grounds in one, rice in one, cotton balls, rice in one,different textures or piece of fabric and put you feet thru them and hands thru them. Over time you won't have the sensitivity. My hand Dr. did this for part of therapy and I did it every day .
It's hard, but it time, worth it.Do whatever you can tolerate. For me massage therapy was a lifesaver before pt. I still find it so helpful. At home I do stretches, swim, and anything that helps me keep moving. Biofeedback can be very useful. Please don't give up. I know it's hard to get out of bed some days. But just try to move and stretch. There are even second hand
tools at sports shops to help do therapy at home.
Please don't give up. Just doing a little a day helps you from atrophy and keeps you mobile. Most cities have public pools you can take advantage of- it is easy on the body.
Let us know how you are doing, we really do care and want to support you. Your friend, loretta soft hugs
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Old 10-13-2009, 09:02 PM #4
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Hi StiL
It really depresses me to see more people plaqued with rsd,,,I agree with the others,,go to a new dr,,,ive been down that road,,one,,,they wont listen and its always a oneway conversation,,,2,,they get affended when they think that i might be onto something,,like knowing ive got rsd,,,,i went thru a dozen dr;s all saying things like ,,its all in your head,,to its a foot bone spur,,,,arthritis,,,one said it was sun burn,ive been thru so many podiatrist,,i cant even count them anymore,,,,,,,In my opion,,a persons body tells you when theres somethinbg wrog,,,,and like alot or people here on this site,,I knew 3 weeks out that i had rsd and i didnt know then what it was,,,i went thru so many,dr's in 3 weeks then one told me to look it up on the internet,,he didnt want to get involved,,none of them do,,so right now,i have no pm dr im seing no one ,,its costed me thousands for nothing,,i was finally dignoised with rsd 2 monbths ago,,,,,after 6 months of dr;s to please catch it early ,,like blocks and meds to stop it,,,there are some good dr's out there,,,you must keep on going,,and movement exercise is a must,or it will wither away,,,,with the nerves shorting out,,and no movement,,the limb will disapear,,it can be[to a point] by exercise be over ridden by excerise,,,,swim ,walk, stationary bike anything,,and keep looking for a dr who cares and knows what he is doing and will listen to you with empathy,,,and most of all,pray to theAlmighty,,,,,,,,,,,bobber,,,,,,ps,,,,,,,,sorry about the rambling,,just wanted to let you know,that your not alone,,,,,,,
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Old 10-13-2009, 10:13 PM #5
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Thanks, I guess I am lucky that my podiatrist found it on my first visit and confermed it more with nuclear bone scan and mri. He thought it was time to send me on to pain man. After treating me for 9 months. I'm going to call him and go back to him since he knows how bad I hurt and I will see if he can suggest a different pm. Maybe some of this problem is due to not being treated for rsd for 6 months after injury, but at least I have my foot dr. Thank you all.
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Old 10-14-2009, 05:16 PM #6
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Hang tough. I know it's hard but you'll get the right medication mix eventually probably. Since you haven't had the disease long there's still a good chance it can be put into remission, too. I guess two years marks the point at which very few people get good remission.

Good luck.
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