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 05-25-2012, 07:51 PM #351
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Originally Posted by ballerina View Post
Catra,

You are so amazing!!!!!! You will be back in the saddle in no time.

I guess flares are catching. For the second time in less than two months I came out on the wrong end of a dog encounter yesterday that resulted in a severe injury.

Something is wrong with this picture.

My neighbors five month old golden retriever has been fond of racing out into the street jumping on me and my service dog. I have explained repeatedly to my neighbor that I have a severe neurological problem that effects my balance and would she please restrain her dog. I even went into specific detail as to what my dog has been individually trained to do for me, i.e. help with undressing, opening cabinet doors, balancing me, pulling laundry out of the washing machine. (Her response to that was "I'll have to train my dog to do those things too" as she laughed. She can't even train her dog to sit on command)

The puppy is now as big as my service dog and ran out and repeatedly jumped on my dog and me and it knocked me to the ground causing cuts, bruises and by this morning, purple leg, on fire and allodynia. I cry when I put weight on it. I unfortunately have pretty much a full body response, joints, arms legs, you name it.

When the woman finally came to control her dog she became entangled in my dog's leash which was attached to my waist since I cannot hold a leash. When she finally got loose and grabbed her dog I showed her my pepper spray, (which I should have used on the dog before it injured me) and informed her that if it happened again her dog would be pepper sprayed.

The woman did what she always does-apologized. Big deal! I called Animal Control who immediately remembered my being attacked by a dog deemed dangerous by Animal Control within the last two months. They don't look kindly on service dogs and their disabled owners being threatened or injured by unrestrained dogs. Animal Control immediately sent an officer to the home to explain the importance of leashing the dogs at all times, as well as to explain the consequences should it happen again.

During dinner last evening the woman's husband began banging on our door with his fist. To make a long story short he screamed at us, "What kind of people are you to call Animal Control on a puppy, You are Crazy." He also indicated that it was my fault because I walk my dog past his house which encourages his do to run out and jump on me. It gets worse but more of the same. He suggested that he would inform the other neighbors of my actions.

I feel like I am living on a strange planet.

After a trip to my PCP and consultation with my PM doc I have gone into flare control mode. Also taking a heavy duty anti inflam drug to knock down the CRPS inflammatory response.

Of all the stupid things I have done since my diagnosis, not nailing this dog before it hurt me takes the cake.

I am doing tDCS twice a day for 40 minutes, mirror therapy and epsom salts baths and like Catra, physical therapy. Thanks to Catra's prior posts I have snatched up some of her suggestions for beginning leg PT exercises since my knowledge consists of upper limb PT. Thanks Catra!

I had gotten to the point where my pain level was down to a 2 when I woke up in the morning. How stupid that I let myself become injured by an irresponsible dog owner's dog simply because it was a puppy and I did not want to stir up my neighbors. (particularly since the husband had been arrested for domestic violence) Stupid, Stupid, Stupid!!!

I won't make that mistake again.

Ok Catra, time for us to do some serious damage control!!!!!
Oh my goodness...I am SO sorry to hear about this! I don't know what goes through people's mind these days. It's very simple...leash your pet or keep them in a fenced yard. This is not the first time with this dog either so for that man to be upset with you is just absolutely ridiculous. If I were his neighbor and he told ME about the horrible lady with the service dog who called Animal Control on him...well...let's just say I would definitely have a few choice words for HIM. It is indeed a strange world we live in and I honestly just don't "get" some people.

I'll be praying for your speedy recovery.
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Old 05-25-2012, 08:56 PM #352
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Default ballerina

How awful for you to have this happen. So funny, as I was reading your post I was thinking about my aunt who had the same thing happen to her yesterday only she got bit by the dog. The neighbors dog is very viscious and was charging at my sister and to distract the dog my aunt used some food hoping the dog would go in the other direction but he grabbed her arm instead. She ended up in the ER all day and got 8 stitches from the tear he made. Her arm will never be the same. But she won't mind she's 90 yrs old and at times doesn't even remember what happen to her. My point, you never know what your neighbors dog is capable of so be AWARE next time he may do more then knock you down. This all happen even with a fence seperating them and the dog tied to a BBQ which he was dragging behind him Can you believe it? Anyway I hope you're feeling better soon.

I'm interested in the fact you have a service dog to begin with. You must have had to jump thru hoops to get one, how did you accomplish that? You said he helps you with balance, have you had any improvement in balance since you started with the tDCS treatment? If you have major improvements will you end up giving up the dog? I wish you all the best in your improvement. I hope it continues and maybe someday you won't need help opening a cabinet or getting dressed. Hoping for a pain free day tomorrow.
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Old 05-26-2012, 07:07 AM #353
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Originally Posted by Hampster63 View Post
How awful for you to have this happen. So funny, as I was reading your post I was thinking about my aunt who had the same thing happen to her yesterday only she got bit by the dog. The neighbors dog is very viscious and was charging at my sister and to distract the dog my aunt used some food hoping the dog would go in the other direction but he grabbed her arm instead. She ended up in the ER all day and got 8 stitches from the tear he made. Her arm will never be the same. But she won't mind she's 90 yrs old and at times doesn't even remember what happen to her. My point, you never know what your neighbors dog is capable of so be AWARE next time he may do more then knock you down. This all happen even with a fence seperating them and the dog tied to a BBQ which he was dragging behind him Can you believe it? Anyway I hope you're feeling better soon.

I'm interested in the fact you have a service dog to begin with. You must have had to jump thru hoops to get one, how did you accomplish that? You said he helps you with balance, have you had any improvement in balance since you started with the tDCS treatment? If you have major improvements will you end up giving up the dog? I wish you all the best in your improvement. I hope it continues and maybe someday you won't need help opening a cabinet or getting dressed. Hoping for a pain free day tomorrow.

I am fortunate to have a young cracker jack neurologist on my treatment team who is one of the docs who suggested a service dog early on when I was experiencing such severe balance issues thanks to the CRPS rogue autonomic system issues. I was initially resistant to this for a variety of reasons but eventually decided to apply for a dog. What I quickly learned was that I could have a five year wait to get one, or I could shell out from $40,000 to $60,000 to get one sooner. Given that so many of the breeds that are routinely used for service dogs are "cancer factories" I saw both options as too risky (In addition to the fact that it was out of the question financially.)

Since both options were not the best I kept digging and discovered a non profit group that teaches folks with disabilities to train their own dogs. I was skeptical because I had such severe limitations, but since I have had extensive experience with training dogs I kept learning. What I discovered is that people who have no arms, people in wheelchairs, even people with speech impediments have successfully trained their own dogs.

Like everything else related to my journey with CRPS intensive research has always paid off.

The result is Tootsie. It wasn't easy, in fact it was at times overwhelming.

My balance has greatly improved while on tDCS. Many of the more miserable autonomic system symptoms compliment of CRPS are totally gone. I am puzzled as to why I have not yet licked the balance issue but I am confident that I will.

The one thing I am obsessed about is beating the odds, beating the system, beating the insurance companies, beating SSDI, beating the doctors, beating the CRPS menu of treatments that have little hope of helping and great risk of making me worse, beating every road block, etc., etc., etc.

Having a service dog is a small but effective weapon. If I attain remission or even partial remission (not sure what that means but it sounds good) I will still be reliant on her. One of the things she does for me is to keep people away from me when I am in public. It is amazing, but when I was only using a cane mothers would look on as their children ran crashing in to me. People would run into me with carts, etc.

I do not under estimate the effects of being bumped into by others. Even though I limit my outings in places like Walmart, when I do go, no one comes near me now. Mothers grab their children, even people I know just smile or wave and keep on going. It used to be that people I knew would stop to chat and invariably try to hug me or pat me on the shoulder. Additionally, people go out of their way to steer their shopping carts in another direction.

I don't advocate that everybody with CRPS should consider a dog or even that they train their own. Training your own dog takes a major commitment of time not only to do the training but to learn how to do it, in addition to keeping up with the training on a daily basis. You have to be highly disciplined because training must happen every day no matter how much pain you are in.

Will there come a time when Tootsie races across the room roused from a deep sleep by a fork I have dropped on the floor. Probably never because she has been highly trained to not only respond to that, but it is her work and she loves it. I do hope that there will come a time when I routinely pick up things that I drop.

In addition to many symptom reductions thanks to tDCS I have also experienced a drastic decrease in the frequency of dropped items. Could tDCS put Tootsie out of a job? I used to think that CRPS was job security for her. Now I am not so sure. At any rate giving her up would never be an option even if I was cured tomorrow.

Wow Hampster, you ask some good questions!

What ever you do do not give up your tDCS treatments! If one electrode montage doesn't work there are more to try!!!!!!!

Hugs to you!

Last edited by ballerina; 05-26-2012 at 08:41 AM.
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Old 05-26-2012, 09:59 AM #354
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Wink ballerina & tootsie

Quote:
Originally Posted by ballerina View Post
I am fortunate to have a young cracker jack neurologist on my treatment team who is one of the docs who suggested a service dog early on when I was experiencing such severe balance issues thanks to the CRPS rogue autonomic system issues. I was initially resistant to this for a variety of reasons but eventually decided to apply for a dog. What I quickly learned was that I could have a five year wait to get one, or I could shell out from $40,000 to $60,000 to get one sooner. Given that so many of the breeds that are routinely used for service dogs are "cancer factories" I saw both options as too risky (In addition to the fact that it was out of the question financially.)

Since both options were not the best I kept digging and discovered a non profit group that teaches folks with disabilities to train their own dogs. I was skeptical because I had such severe limitations, but since I have had extensive experience with training dogs I kept learning. What I discovered is that people who have no arms, people in wheelchairs, even people with speech impediments have successfully trained their own dogs.

Like everything else related to my journey with CRPS intensive research has always paid off.

The result is Tootsie. It wasn't easy, in fact it was at times overwhelming.

My balance has greatly improved while on tDCS. Many of the more miserable autonomic system symptoms compliment of CRPS are totally gone. I am puzzled as to why I have not yet licked the balance issue but I am confident that I will.

The one thing I am obsessed about is beating the odds, beating the system, beating the insurance companies, beating SSDI, beating the doctors, beating the CRPS menu of treatments that have little hope of helping and great risk of making me worse, beating every road block, etc., etc., etc.

Having a service dog is a small but effective weapon. If I attain remission or even partial remission (not sure what that means but it sounds good) I will still be reliant on her. One of the things she does for me is to keep people away from me when I am in public. It is amazing, but when I was only using a cane mothers would look on as their children ran crashing in to me. People would run into me with carts, etc.

I do not under estimate the effects of being bumped into by others. Even though I limit my outings in places like Walmart, when I do go, no one comes near me now. Mothers grab their children, even people I know just smile or wave and keep on going. It used to be that people I knew would stop to chat and invariably try to hug me or pat me on the shoulder. Additionally, people go out of their way to steer their shopping carts in another direction.

I don't advocate that everybody with CRPS should consider a dog or even that they train their own. Training your own dog takes a major commitment of time not only to do the training but to learn how to do it, in addition to keeping up with the training on a daily basis. You have to be highly disciplined because training must happen every day no matter how much pain you are in.

Will there come a time when Tootsie races across the room roused from a deep sleep by a fork I have dropped on the floor. Probably never because she has been highly trained to not only respond to that, but it is her work and she loves it. I do hope that there will come a time when I routinely pick up things that I drop.

In addition to many symptom reductions thanks to tDCS I have also experienced a drastic decrease in the frequency of dropped items. Could tDCS put Tootsie out of a job? I used to think that CRPS was job security for her. Now I am not so sure. At any rate giving her up would never be an option even if I was cured tomorrow.

Wow Hampster, you ask some good questions!

What ever you do do not give up your tDCS treatments! If one electrode montage doesn't work there are more to try!!!!!!!

Hugs to you!
Three cheers for tootsie. Thank goodness for the opportunity to have all the options available. She is so lucky to have you as her owner and trainer. Please do not ever give up coming to this thread no matter how much better you get. You, Catra and James are so much help to those of us who lose a little hope once in awhile. Today marks 3 wks. since starting tDCS and I do have great faith that I will get some form of improvement soon. Thanks so much. Have a great Holiday w/e and hopefully you'll be pain free. Hugs also.
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Old 05-31-2012, 12:28 AM #355
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Hi TDCS folks,

Well wish us luck, or more correct wish my daughter luck. She and
my husband will be flying out tomorrow on their way to Atlanta for
a consult with Doc Fugedy. I wish I could go as well. It would
have been nice to meet the good Doc. I had spoken with him
several times and each time I hung up more impressed by his
knowledge. However, my son in law needs help with my grandchildren
while my daughter is away.

I am assuming one treatment will be given and she will come home
with the unit much like in the case of Hampster and Debbie who
continued the trial at home.

to all Joydee
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Old 05-31-2012, 07:19 AM #356
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Hi TDCS folks,

Well wish us luck, or more correct wish my daughter luck. She and
my husband will be flying out tomorrow on their way to Atlanta for
a consult with Doc Fugedy. I wish I could go as well. It would
have been nice to meet the good Doc. I had spoken with him
several times and each time I hung up more impressed by his
knowledge. However, my son in law needs help with my grandchildren
while my daughter is away.

I am assuming one treatment will be given and she will come home
with the unit much like in the case of Hampster and Debbie who
continued the trial at home.

to all Joydee
I will be wishing your daughter luck and sending good thoughts and wishes her way.
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Old 05-31-2012, 04:36 PM #357
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Well it's been over three weeks two times a day and nothing, Nothing works for me! So frustrating
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Old 05-31-2012, 05:38 PM #358
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Well it's been over three weeks two times a day and nothing, Nothing works for me! So frustrating


Oh Deb...I'm so sorry. Please try not to let yourself get too down. Have you spoken to Dr. Fugedy lately to get his thoughts? Maybe trying a different protocol at this point would be in order. It seems that everyone responds to different protocols so maybe this one just isn't "the one." You've got a great resource in Dr. Fugedy so make sure to use him as much as possible. For me, it was my second protocol that worked the best. I was disappointed with the initial results but after two weeks made the change. And I know ballerina has tried out several different ones with varying levels of success. Unfortunately this is not yet an exact science. We're here for you though so if you need anything please let us know.
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Old 05-31-2012, 05:43 PM #359
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Thanks for your response,,,fugedy said to give it 4-6 weeks so I am waiting,,,can I ask what protocol did help u? where did u put the electrodes?
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Old 05-31-2012, 06:03 PM #360
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Thanks for your response,,,fugedy said to give it 4-6 weeks so I am waiting,,,can I ask what protocol did help u? where did u put the electrodes?
I am currenty using the M1 and S2 protocol: cathode over right eye and anode over left ear. Every other week I switch it so that the cathode is over my left eye and anode over my right ear. I do this because I have RSD on both sides of my upper body and I have noticed improvement on both sides.

If Dr. Fugedy said to wait then stay hopeful and keep at it. Many of the best improvements came after a month or so of treatment...and the sleep improvements didn't start until 2 months in or so (and I'm still getting better with that). So keep at it and don't stress. Good things are worth waiting for.
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