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 06-09-2012, 11:35 AM #381
reluctant@thetable reluctant@thetable is offline
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It is in a spray can from a pharmacy I think. I use a Rite Aid pharmacy. I bought it awhile ago to have on hand if I needed it to clean a wound for my grandson. So when this came along I found it handy to keep with the tDCS unit so if I needed to add more liquid I had it without having to get up to get water. I don't know if I'm doing anything wrong by mixing water and the saline. I never heard there was any reason not to use saline. I find doing treatment in the evening so much easier. It's the best time to do it when the day is done and there's no pressure to get something else done. Just turn off the rest of the day and sit and relax. I do it when there's a program on tv I like to watch. Sitting and relaxing for your daughter is probably why she falls asleep. If she's not watching tv and she's meditating she's got to be doing the best possible plan for the tDCS to do it's job. Lots of luck to her and your family.
Hampster, you brought up an interesting topic that I've been concerned with. Since tdcs is also used to deliver medicines in the same manner we are using it, I read the label on all of the over-the-counter types of saline solutions. The spray saline, the eye drop saline, and the nasal saline all have a number of other ingredients in them including various preservatives. I did not buy any of them because I didn't want any of the other ingredients passing into my body.

I spoke with the pharmacist about this. He told me that in order to get pure saline- the kind used for wound irrigation or the kind used in IVs- I would have to get a prescription. I protested about this knowing that normal saline is just water and salt. He said that was state law. I asked if he, as a pharmacist, could prescribe it for me. He said in the state I live in, pharmacists aren't allowed to prescribe anything. In other states, pharmacists can prescribe. (I'm getting used to frustration.)

So my dear husband, quite on his own, found unadulterated saline (the kind I would have needed a prescription for at the pharmacy) on Amazon. I ordered it up without any difficulties.

I don't know if all of the preservatives should be a concern but I assume that is one of the reasons the medical field uses the saline that does not have the additional ingredients on patient's open wounds.

Don't know if I'm making unreasonable assumptions but I figure if it's my brain I'm working with, I'd better be extra careful. That's also why I don't use my tap water because it comes from the well and I'm not sure what's in it (our area is known for high levels of arsenic).

Perhaps I'm being overly cautious...
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Old 06-10-2012, 02:25 PM #382
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Hampster, you brought up an interesting topic that I've been concerned with. Since tdcs is also used to deliver medicines in the same manner we are using it, I read the label on all of the over-the-counter types of saline solutions. The spray saline, the eye drop saline, and the nasal saline all have a number of other ingredients in them including various preservatives. I did not buy any of them because I didn't want any of the other ingredients passing into my body.

I spoke with the pharmacist about this. He told me that in order to get pure saline- the kind used for wound irrigation or the kind used in IVs- I would have to get a prescription. I protested about this knowing that normal saline is just water and salt. He said that was state law. I asked if he, as a pharmacist, could prescribe it for me. He said in the state I live in, pharmacists aren't allowed to prescribe anything. In other states, pharmacists can prescribe. (I'm getting used to frustration.)

So my dear husband, quite on his own, found unadulterated saline (the kind I would have needed a prescription for at the pharmacy) on Amazon. I ordered it up without any difficulties.

I don't know if all of the preservatives should be a concern but I assume that is one of the reasons the medical field uses the saline that does not have the additional ingredients on patient's open wounds.

Don't know if I'm making unreasonable assumptions but I figure if it's my brain I'm working with, I'd better be extra careful. That's also why I don't use my tap water because it comes from the well and I'm not sure what's in it (our area is known for high levels of arsenic).

Perhaps I'm being overly cautious...
Yikes... I had no idea life had to be so complicated when it comes to water. I guess we all better get the right recipe and make our own. Great idea getting it on Amazon, that's my route at this point. Thanks for making me think about it, I guess those added ingredients can play a major role. Have you had any improvement in the use of the tDCS? I have a new protocol to start using. Lets see if my left brain cooperates.
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Old 06-10-2012, 04:43 PM #383
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Yikes... I had no idea life had to be so complicated when it comes to water. I guess we all better get the right recipe and make our own. Great idea getting it on Amazon, that's my route at this point. Thanks for making me think about it, I guess those added ingredients can play a major role. Have you had any improvement in the use of the tDCS? I have a new protocol to start using. Lets see if my left brain cooperates.
I'm not sure if the extra ingredients make any difference but I'd rather err on the safe side than take a chance with my brain.

Now that I'm placing the electores on the correct areas (one of my duh moments), I'm not sure if my improvement is related to the tdcs treatment or weather. Overall, I definitely feel better. I'm waiting to draw conclusions until the next major storm or barometer change. That's what I've been having great problems with.

I hope you're new protocol and left brain cooperate.
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Old 06-12-2012, 06:31 AM #384
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I'm not sure if the extra ingredients make any difference but I'd rather err on the safe side than take a chance with my brain.

Now that I'm placing the electores on the correct areas (one of my duh moments), I'm not sure if my improvement is related to the tdcs treatment or weather. Overall, I definitely feel better. I'm waiting to draw conclusions until the next major storm or barometer change. That's what I've been having great problems with.

I hope you're new protocol and left brain cooperate.
This is encouraging! Are you keeping any kind of a pain journal to track your progress as you go through the tDCS treatments? I found this very helpful is assessing how I was doing through the tDCS process. Even when I got flares during weather changes, they were less severe and lasted a shorter period of time. I wouldn't have really noticed some of those changes if I hadn't been tracking them and writing things down. I'll keep my fingers crossed that this is just the first small sign of great things to come.
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Old 06-12-2012, 06:42 AM #385
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Well...I survived my first week of work! Yay!!

I was pretty much too tired and sore after each work day to really DO anything but that seems to be fading a little. When I got home yesterday I actually made dinner...so I had enough energy for that. I'm a little sore this morning but nothing like I was last week after my second day and I was just as active today at work as I was then. So far I have been able to do all the different tasks and work in all of my different departments without any trouble. And...again...the team of people I am working with really are wonderful so I am thrilled at how everything has worked out.

The only bad thing at all really is that I have had a terrible cold since Friday. I have today and tomorrow off work so I plan to get some rest and try to recover from this thing so that I'm refreshed and ready to go on Thursday. Also...since the cold started I have noticed some additional swelling in my arms and ankle...but between the TENS on my ankle and the lidoderm patches on my arms I have surprisingly not gone into any really bad pain flares despite the swelling. It's a real pain in the backside to get ready in the morning and "suit up" but clearly it has been working out.

Oh...and did I mention I did a couple of customer carry outs over the weekend? Carried a vacuum and a steam cleaner out for a couple of customers out to their cars. By carried I mean I lifted the things, put them on my walker, and ROLLED them out to the car...but hey...it works, right? Go me...
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Old 06-12-2012, 11:54 AM #386
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Well...I survived my first week of work! Yay!!

I was pretty much too tired and sore after each work day to really DO anything but that seems to be fading a little. When I got home yesterday I actually made dinner...so I had enough energy for that. I'm a little sore this morning but nothing like I was last week after my second day and I was just as active today at work as I was then. So far I have been able to do all the different tasks and work in all of my different departments without any trouble. And...again...the team of people I am working with really are wonderful so I am thrilled at how everything has worked out.

The only bad thing at all really is that I have had a terrible cold since Friday. I have today and tomorrow off work so I plan to get some rest and try to recover from this thing so that I'm refreshed and ready to go on Thursday. Also...since the cold started I have noticed some additional swelling in my arms and ankle...but between the TENS on my ankle and the lidoderm patches on my arms I have surprisingly not gone into any really bad pain flares despite the swelling. It's a real pain in the backside to get ready in the morning and "suit up" but clearly it has been working out.

Oh...and did I mention I did a couple of customer carry outs over the weekend? Carried a vacuum and a steam cleaner out for a couple of customers out to their cars. By carried I mean I lifted the things, put them on my walker, and ROLLED them out to the car...but hey...it works, right? Go me...
You are such an inspiration to follow on this thread. Keep up the great work and let us always know how you are. Question for you, did you ever find any problems with tDCS whether you used water or saline to treat? I assume you are still using the treatment but where do you place pads at this point? We all want to be in as good a shape as you are someday. Love to read about your days. Have a great day Thur. and let it be pain free.
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Old 06-12-2012, 02:37 PM #387
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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.

As far as saline...I just used what I got at the pharmacy. I might try it with just water given the above discussion but I've never noticed any issues with it. I do make sure the sponges are thoroughly soaked though...so except for the first few times I didn't have any issues with burning or anything either. I feel like once I got the hang of it, it all feels like second nature now. I feel lucky that the second electrode placement worked out so well for me.

Also...so far I have still been able to do two treatments a day but Friday, Saturday, and Sunday I will be working the closing shifts (2pm-11pm) so I think I will only be able to do one on those days. I don't expect it will set back treatment at all...but I will let you guys know if I experience any difficulties with the change in treatment schedule.
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Old 06-15-2012, 06:34 AM #388
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I am so blessed. I hope to be back to work in the near future. I have been spending just about eight hours a day conditioning myself.

Now that tDCS has eliminated some of the symptoms that landed me in the wheelchair I have been building up my strength and tolerance for activity. I never would have believed this last January, but now I am tending a vegetable garden!!!!!!!!! Last week I transplanted some sun flowers that I had started in small pots. About 75 of them. I have planted them everywhere I find a space. Sunflowers are so cheerful and tenacious, and start out small but persistently quickly grow despite the heat and scorching sun. They represent my journey from recovering from the devastation cause in my body by the Boston Scientific spinal cord stimulator. Most people do not recover from spinal cord stimulator induced spreads of neuropathic pain and in fact, they become worse over time, losing more function.

Although I would not recommend a spinal cord stimulator to anyone who suffers from CRPS due to the high risk of spread tDCS may be an effective treatment for those CRPS folks who have had developed spreads from stimulators.

My family thinks I am a little nuts. At a family cookout I was being quizzed about why I didn't just plant four or five sunflowers. Didn't want to go there with the whole family so I just said, "because that is how many seeds were in the packets, pass the potato salad please."

Everybody here knows why I did it. Right????????
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Old 06-15-2012, 07:39 AM #389
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I am so blessed. I hope to be back to work in the near future. I have been spending just about eight hours a day conditioning myself.

Now that tDCS has eliminated some of the symptoms that landed me in the wheelchair I have been building up my strength and tolerance for activity. I never would have believed this last January, but now I am tending a vegetable garden!!!!!!!!! Last week I transplanted some sun flowers that I had started in small pots. About 75 of them. I have planted them everywhere I find a space. Sunflowers are so cheerful and tenacious, and start out small but persistently quickly grow despite the heat and scorching sun. They represent my journey from recovering from the devastation cause in my body by the Boston Scientific spinal cord stimulator. Most people do not recover from spinal cord stimulator induced spreads of neuropathic pain and in fact, they become worse over time, losing more function.

Although I would not recommend a spinal cord stimulator to anyone who suffers from CRPS due to the high risk of spread tDCS may be an effective treatment for those CRPS folks who have had developed spreads from stimulators.

My family thinks I am a little nuts. At a family cookout I was being quizzed about why I didn't just plant four or five sunflowers. Didn't want to go there with the whole family so I just said, "because that is how many seeds were in the packets, pass the potato salad please."

Everybody here knows why I did it. Right????????
I definitely get it! Sounds a lot like me...I've planted TONS of flowers this year and love walking out into the backyard and on the deck and seeing all the pretty, cheery flowers everywhere. My boyfriend gets it too...but he still laughs and teases me. I have all sorts of grand plans for the back yard and how I want to make MORE flower beds. I even bought a perennial garden book for Illinois and have started plotting out what I want to do next year.

I'm so happy to hear that things are going so well for you James. I think you are doing the smart thing trying to condition yourself with the activities before jumping right into the working. That's what I tried to do while I was off when they wouldn't let me back at first and I think that things worked out better for me because of it. If I had just gone back right away I don't think things would be going as good as they are right now. I tried my best to simulate the activities I do at work...but of course there's only so much you can do when you aren't actually AT work. Still...thanks to the conditioning and the work I did to build up my endurance I really haven't had any trouble being on my feet for 9-10 hours a day at work with little to no sitting during that time. Well...my feet were a little sore the first couple days but that was bound to happen...they've adjusted already.

I am so excited for you though. I'm doing a happy dance for you. Keep up the great work!
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Old 06-16-2012, 10:51 AM #390
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I definitely get it! Sounds a lot like me...I've planted TONS of flowers this year and love walking out into the backyard and on the deck and seeing all the pretty, cheery flowers everywhere. My boyfriend gets it too...but he still laughs and teases me. I have all sorts of grand plans for the back yard and how I want to make MORE flower beds. I even bought a perennial garden book for Illinois and have started plotting out what I want to do next year.

I'm so happy to hear that things are going so well for you James. I think you are doing the smart thing trying to condition yourself with the activities before jumping right into the working. That's what I tried to do while I was off when they wouldn't let me back at first and I think that things worked out better for me because of it. If I had just gone back right away I don't think things would be going as good as they are right now. I tried my best to simulate the activities I do at work...but of course there's only so much you can do when you aren't actually AT work. Still...thanks to the conditioning and the work I did to build up my endurance I really haven't had any trouble being on my feet for 9-10 hours a day at work with little to no sitting during that time. Well...my feet were a little sore the first couple days but that was bound to happen...they've adjusted already.

I am so excited for you though. I'm doing a happy dance for you. Keep up the great work!
Kudos to you both. We just love hearing about the great strides you've made. You both deserve the tremendous improvement and feeling of pride in what you have accomplished. Great job. BUT, how is it possible that Deb and I have had no change what so ever? What are we doing wrong and what can we do to cause some kind of change? We're sticking with it and don't want to or plan to give up, but we are both very discouraged and disappointed. I guess we put so much hope into the treatment and are so hurt that it's not going like we envishioned. We're both thinking we're just not placing the pads correctly or not treating often enough or just using the wrong protocol. We're only on our second placement but is it the right one. Who knows? I'm even questioning do I use water or saline, is the placement tight enough. How critical is it having the pads in the exact spot? We are really at a loss and are keeping our fingers and toes crossed for the moment. I really am so happy for you both to have had the treatment work for you and you are able to make such changes in your life for the better. Goooo potatoe salad.
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