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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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Unread 03-04-2012, 11:48 AM   #381
ginnie
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Default Hi Mandy

I am glad you posted to us. that is what this site is for. I am sorry for your suffering. I felt your tears. It sounds like you have been through alot not just with the abuse, but with the RSD in your body. Do you have some measure of control in the pain? You mentioned some of the doctors you have seen, don't know alot about RSD. In this country also, many patients know more about it than their doctors do. I hope you get the help you need.

It is also nice to hear about your family. Your daughter and son-in-law sound like good souls, who are there for you. My son is a occupational PT, and has that caring attitude toward me. I feel blessed to have his as you do your family.
I will keep you in my prayers. I don't have RSD. But I do have pain issues, and go to a pain specialist who for the most part is very good to me.
You are welcome anytime to vent, and talk to us. I stayed with NT because of the supprt I received from all the good people here. I continue to come back as often as I can to give support to others that need it. I wish there were a cure for RSD and that people didn't have to suffer with it. Take care, ginnie
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Unread 03-04-2012, 12:17 PM   #382
cinders999
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Quote:
Originally Posted by ginnie View Post
I am glad you posted to us. that is what this site is for. I am sorry for your suffering. I felt your tears. It sounds like you have been through alot not just with the abuse, but with the RSD in your body. Do you have some measure of control in the pain? You mentioned some of the doctors you have seen, don't know alot about RSD. In this country also, many patients know more about it than their doctors do. I hope you get the help you need.

It is also nice to hear about your family. Your daughter and son-in-law sound like good souls, who are there for you. My son is a occupational PT, and has that caring attitude toward me. I feel blessed to have his as you do your family.
I will keep you in my prayers. I don't have RSD. But I do have pain issues, and go to a pain specialist who for the most part is very good to me.
You are welcome anytime to vent, and talk to us. I stayed with NT because of the supprt I received from all the good people here. I continue to come back as often as I can to give support to others that need it. I wish there were a cure for RSD and that people didn't have to suffer with it. Take care, ginnie
Thanks Ginnie, I could do with some extra prayers at the moment. I have very little control over the pain today, neither the breathing exercises nor the tai chi seem to be helping much at the moment. I think it's just one of those days we all get, where nothing helps. I can guarantee banging your head on the wall doesn't help (I tried it earlier ) That old wives tail about 'stubbing your toe to get rid of a headache' just isn't true!
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Unread 03-04-2012, 12:22 PM   #383
ginnie
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I am praying for you right this minute. Never think you are alone. I wish there was a way to reach you and let you know I care. I do have angels that help me keep in line in my own life, I will send one around to see you and visit awhile. I wish there was a way to take away your pain. If you can, go to Virtual Choir. It is on Google. It consists of 2,000 voices around the world who come together in song. For a minute, it will fill you with awe. Just maybe for those minutes while you watch, your pain will deminish. ginnie
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Unread 03-24-2012, 12:46 PM   #384
garnbev
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My name is Beverly and I feel and broke my right ankle in 3 places 4 years ago. Almost immediately after I had surgery I knew something was wrong. My foot stayed swelled, purple, cold and hurt all the time. I couldn't stand the pain for it to lay on the bed or for the covers to touch it. The Doctor that did the surgery told me that since I didn't have insurance that he couldn't refer me for therapy. So I didn't have any and 4 years later I still have not had therapy. I was sent to different doctors each saying that is was RSD. I finally was sent to an Neurologist, who was the greatest doctor I have ever met. He looked at my foot and said yes it was RSD. He put me on all kinds of different meds and even tried the nerve blocks. ALL failed, he put me on Morphine and it took the edge off the pain, the RSD had already taken over my entire body. I also found out the the muscle in my stomach has split from the bottom of my rib cage to the top of my pelvic area, and when I go to lay down my stomach sticks out through the split. I was told nothing could be done. So he finally wanted me to try the nerostimulator. I tried the trial one in January of this year (2012) and it helped a lot with the pain. The end of February I to the Spine Center and had the surgery to have the permanent one put in. I am now having cramps and muscle cramps everywhere in my body. I have headaches, my neck hurts and I feel sick to my stomach all the time. It's hard for me to eat anything (not that I couldn't stand to loose some weight). My husband has went with me to the doctors and he has heard what they all have said, but he said it is hard to believe that the RSD can take over my entire body. I have had a doctor from the spine center say that it doesn't take over your entire body. I don't know what to do, all I know is that I KNOW my own body and how it feels. I am still taking morphine 60 mg 3X day, neurontin 800 mg 4X day Xanax 1 mg 4X day and clonidine 15 mg 3X day. Along with all the rest of my regular meds that I have to take. I have tried to walk and all I do is fall down my legs are like noodles, and if I turn down the stimulator then the pain comes right back. I use the stimulator 24 hrs a day. The spine center said that out of all there patients I am the only one that uses the stimulator 24 hrs a day. Everyone else uses it about 50 to 60 % of the time. I can only sit up for about 4 hrs then I have to lay down. I only get about 4 hrs of sleep and I scream out in my sleep if I move at night, I am tired, and cry all the time. I have had several broken bones before and I just don't understand how this time was so different and I ended up with RSD. That's in a short version my story.
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Unread 03-25-2012, 08:05 AM   #385
catra121
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Originally Posted by garnbev View Post
My name is Beverly and I feel and broke my right ankle in 3 places 4 years ago. Almost immediately after I had surgery I knew something was wrong. My foot stayed swelled, purple, cold and hurt all the time. I couldn't stand the pain for it to lay on the bed or for the covers to touch it. The Doctor that did the surgery told me that since I didn't have insurance that he couldn't refer me for therapy. So I didn't have any and 4 years later I still have not had therapy. I was sent to different doctors each saying that is was RSD. I finally was sent to an Neurologist, who was the greatest doctor I have ever met. He looked at my foot and said yes it was RSD. He put me on all kinds of different meds and even tried the nerve blocks. ALL failed, he put me on Morphine and it took the edge off the pain, the RSD had already taken over my entire body. I also found out the the muscle in my stomach has split from the bottom of my rib cage to the top of my pelvic area, and when I go to lay down my stomach sticks out through the split. I was told nothing could be done. So he finally wanted me to try the nerostimulator. I tried the trial one in January of this year (2012) and it helped a lot with the pain. The end of February I to the Spine Center and had the surgery to have the permanent one put in. I am now having cramps and muscle cramps everywhere in my body. I have headaches, my neck hurts and I feel sick to my stomach all the time. It's hard for me to eat anything (not that I couldn't stand to loose some weight). My husband has went with me to the doctors and he has heard what they all have said, but he said it is hard to believe that the RSD can take over my entire body. I have had a doctor from the spine center say that it doesn't take over your entire body. I don't know what to do, all I know is that I KNOW my own body and how it feels. I am still taking morphine 60 mg 3X day, neurontin 800 mg 4X day Xanax 1 mg 4X day and clonidine 15 mg 3X day. Along with all the rest of my regular meds that I have to take. I have tried to walk and all I do is fall down my legs are like noodles, and if I turn down the stimulator then the pain comes right back. I use the stimulator 24 hrs a day. The spine center said that out of all there patients I am the only one that uses the stimulator 24 hrs a day. Everyone else uses it about 50 to 60 % of the time. I can only sit up for about 4 hrs then I have to lay down. I only get about 4 hrs of sleep and I scream out in my sleep if I move at night, I am tired, and cry all the time. I have had several broken bones before and I just don't understand how this time was so different and I ended up with RSD. That's in a short version my story.
Oh Beverly...I am SO sorry to hear what you are going through. Sounds like it has been just an awful time for you these past few years and (as is often the case) I am appalled by the lack of care you received early on that might have prevented most of this especially since the doctors diagnosed you and knew what they were dealing with. How awful. Many people with RSD have been made worse by the spinal chord stimulators and I don't think I would ever risk that...but then on the other hand I do know what it is like for the pain to be so awful and to be so desperate for relief that you will believe just about anything the doctors say without doing your own research on it to find out if it's really the best option for you.

One of the members on here, CRPSjames, was made worse by the SCS and he has found amazing relief from tDCS treatment. The equipment only costs about $300 and you can do the treatments at home. I just started this a month ago and I too have seen some improvement already, as have others. There is a thread on here about it and I highly recommend reading through it. It's many many pages long but I know when I read it, it filled me with great hope that here was something that was not invasive, has little to no side effects, can be done at home so no travel to and from doctor's offices, and it is incredibly affordable and people who found no success with anything else are seeing great results. This may be a good option for you after everything you have been through.

Take care. This is an excellent forum to ask questions, seek out advice, or even just to vent when you need to. We all understand what you are going through as we live with this monster on a daily basis to one degree or another. I am so very sorry for all that you have had to suffer through.
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Unread 03-25-2012, 09:51 AM   #386
ginnie
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Default Hello Beverly

Welcome to Neuro Talk. I am sorry that you suffer with this RSD. I don't have the same condition, but I do understand what the illness is, and have empathy for what you endure. There are alot of folks on NT, who will be here for you. More research needs to be done, thats for sure. I don't even think the doctors really know what exactly triggers it. It seems it begins with some kind of trauma to the body. I hope alot of people respond to you. The SCS has helped many to cope. I wish there were answers to this Beverly, that it would just clear up and go away. I am glad you found some doctors willing to help you with it. I will be thinking of you, and keeping you in my prayers. ginnie
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Unread 03-27-2012, 10:15 AM   #387
garnbev
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Default Thank you so very much for the information.

I will look into the information that you gave me. But, since I am in a lawsuit, I have to do what the doctors tell me to do. You see I fell in a hospital, there was something on the floor that made me slip and fall. So nobody wanted to do anything because of it. My lawyer is the one that sent me to the doctors that I am going to now. Right now most of the time I just stay in the bed, the headaches have gotten so bad I can't stand any light at all. I will try and visit the website as much as I can. Again thank you for the information.



Quote:
Originally Posted by catra121 View Post
Oh Beverly...I am SO sorry to hear what you are going through. Sounds like it has been just an awful time for you these past few years and (as is often the case) I am appalled by the lack of care you received early on that might have prevented most of this especially since the doctors diagnosed you and knew what they were dealing with. How awful. Many people with RSD have been made worse by the spinal chord stimulators and I don't think I would ever risk that...but then on the other hand I do know what it is like for the pain to be so awful and to be so desperate for relief that you will believe just about anything the doctors say without doing your own research on it to find out if it's really the best option for you.

One of the members on here, CRPSjames, was made worse by the SCS and he has found amazing relief from tDCS treatment. The equipment only costs about $300 and you can do the treatments at home. I just started this a month ago and I too have seen some improvement already, as have others. There is a thread on here about it and I highly recommend reading through it. It's many many pages long but I know when I read it, it filled me with great hope that here was something that was not invasive, has little to no side effects, can be done at home so no travel to and from doctor's offices, and it is incredibly affordable and people who found no success with anything else are seeing great results. This may be a good option for you after everything you have been through.

Take care. This is an excellent forum to ask questions, seek out advice, or even just to vent when you need to. We all understand what you are going through as we live with this monster on a daily basis to one degree or another. I am so very sorry for all that you have had to suffer through.
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Unread 03-27-2012, 10:21 AM   #388
garnbev
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Default Thank You

Thank you Ginnie I can use all the prayers that I can get and I appreciate them all. Prayer has been the only thing that has kept me going. Right now I just stay in the bed, I can't handle the light because of the headaches that I have now. I will try and check the website often. Again Thank you.

Quote:
Originally Posted by ginnie View Post
Welcome to Neuro Talk. I am sorry that you suffer with this RSD. I don't have the same condition, but I do understand what the illness is, and have empathy for what you endure. There are alot of folks on NT, who will be here for you. More research needs to be done, thats for sure. I don't even think the doctors really know what exactly triggers it. It seems it begins with some kind of trauma to the body. I hope alot of people respond to you. The SCS has helped many to cope. I wish there were answers to this Beverly, that it would just clear up and go away. I am glad you found some doctors willing to help you with it. I will be thinking of you, and keeping you in my prayers. ginnie
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Unread 04-02-2012, 12:23 AM   #389
Hillbilly_Dave
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Default Taking Deer with a Motorcycle...out of season.

I have finally arrived at a crossroad...the end of denial about my CRS. I was 'fortunate' enough to get the rare opportunity to legally take a Deer out of season, on a Motorcycle. Messed-up details aside; developed CRS in right leg/ankle below knee. Has been making my life miserable and devoid of fun. Chronically broken toes, extensive numbness, swelling, etc...continued loss of functionality.

Three Nerve-Docs told me that it will eventually take me off my feet without extensive treatment ("yeah...right"...so I thought). Was eventually electrified, irradiated, scanned by cats, poked with needles, prodded, massaged and podiatrically molested in every form. Perhaps like others of us, I grew weary of such further indignities, figured I could "take it", and separated myself from treatment (other than meds).

It has finally came to a point where I have to question my long-term future, to swallow my pride and accept what has happened. And I am horrified at the thought it may be too late and eventually require amputation. Although at this point I am willing to accept it at as well.

Has anyone else ever 'mis-underestimated' CRS?

To the point of self-denial and acceptance of un-needed suffering?
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Unread 04-04-2012, 08:18 AM   #390
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Originally Posted by Hillbilly_Dave View Post
I have finally arrived at a crossroad...the end of denial about my CRS. I was 'fortunate' enough to get the rare opportunity to legally take a Deer out of season, on a Motorcycle. Messed-up details aside; developed CRS in right leg/ankle below knee. Has been making my life miserable and devoid of fun. Chronically broken toes, extensive numbness, swelling, etc...continued loss of functionality.

Three Nerve-Docs told me that it will eventually take me off my feet without extensive treatment ("yeah...right"...so I thought). Was eventually electrified, irradiated, scanned by cats, poked with needles, prodded, massaged and podiatrically molested in every form. Perhaps like others of us, I grew weary of such further indignities, figured I could "take it", and separated myself from treatment (other than meds).

It has finally came to a point where I have to question my long-term future, to swallow my pride and accept what has happened. And I am horrified at the thought it may be too late and eventually require amputation. Although at this point I am willing to accept it at as well.

Has anyone else ever 'mis-underestimated' CRS?

To the point of self-denial and acceptance of un-needed suffering?
I think that many many people underestimate CRPS/RSD and what it can do to us in our lives. It really is absolutely horrific the pain we go through and I think that if you don't HAVE it you really can't truly understand the depths of that pain. Don't get me wrong...there are other absolutely awful things out there and I can sympathize with those people who have them...but just like I think they cannot really understand what it is like to live with RSD I think that I cannot fully appreciate what it is like for them.

At any rate...I have decided to not do anymore invasive treatments. I experienced spread after a lumbar sympathetic block and now instead of just having the pain in my left ankle I have it in my whole upper body. Then...all the meds the docs had me on caused me to get seratonin syndrome...which was just awful to have on top of the RSD pain I have. So...after bouncing around from one doc to the next I finally said enough was enough. I ended up with a wonderful primary care physician who is very compassionate and who is willing to work with me based on what I want...not what will make the doctors the most money.

So I stopped all meds and started physical therapy (at home because I couldn't even drive myself anywhere in the car at that point). It took many months but I ended up with a wonderful physical therapist and eventually I went from being in a wheelchair not able to walk or stand to now being able to walk/be on my feet for hours and hours at a time (not to mention being able to drive and do all sorts of other stuff onmy own too). I got a TENS unit and an ultrasound machine to help me with the pain and I take hot baths with epsom salts too (these are really wonderful for the pain). The only meds I currently use are lidoderm patches and clonidine patches.

Just this past month I have started treatments with tDCS and I am seeing even MORE improvement in the pain and function with this (for which I am very thankful because although I got the function back with the physical therapy the pain levels were still very very high). I highly recommend reading the thread on here about it because it is not invasive and you can do the treatments yourself in the privacy of your own home for very very little cost (about $300 for all the equipment).

Anyway...I am very sorry to hear what you are going through. CRPS is such an awful thing to deal with and everyone is different (responds to different treatments and such). It's hard sometimes to make decisions about our treatment and it is very easy to get discouraged. Basically...the only reason I think I made it so far prior to tDCS is just because I was THAT stubborn (at least that's what my boyfriend says). I really think that physical therapy is the best thing. But you need to find all those little things that help you so that you can DO the therapy (whether that's meds or other things).

Take care and good luck. I hope you are able to find some relief soon.
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