Hi
 

That's great to hear James! What protocol r u using?

My current placement is Anodal electrode on left frontal cortex. reference electrode on right upper arm. I am currently focusing on my difficulty with word naming and other cognitive issues.

Hi
 

Which protocol helped with your muscles?

Deb

I don't have a scientifically proven answer to that but I believe what helped the muscles was making myself use them, getting out of the wheelchair and off of the recliner. I was absolutely miserable and the pain was excruciating.

I would ask Dr. Fugedy what electrode placement is the best for muscles. I have not come across the answer to your question in my research.

As far as my research goes it seems to be the old "use it or loose it" at work here not CRPS just killing the muscles. Wish I had an easier answer to your question.

The best explanation of this process is detailed by Catra's journey, one step at a time, every day no matter what. Misery, yes, effective, yes.

Additionally, I believe depression was a factor. I was so beaten down by being put in the wheelchair by the SCS, a treatment that doctors assured me would be successful since I had a "successful" trial.

Hope this helps!

James I tell Deb that everyday, use it or lose it. Thank goodness she has to go to work everyday, it gets her out of bed and moving. If she was a home body her pain would have her on the couch all day. She just can't get past the god awful pain to push on. She's a trooper and a great friend and we push each other.
Question for you, do you know why some crps people have a balance problem and others don't? I've seen a lot of posts about having control over balance, why is our balance system effected? I was always told my short circuit of central nervous system caused my imbalance but when I see rsd people have the same thing I have to assume mine is also from rsd. Does anyone know why?????
We fixed Debs machine problem I believe, but we both still have not seen any improvement at this time. Will keep up the good work and pray for some kind of improvement soon. Thanks all.;)

I've only ever heard one theory on the balance issue and never seen anything to back it up (haven't looked though either besides a search online to see if the balance problems I was having were in fact related to the RSD). The theory says that because of how messed up the signals are that are coming from our brains (with the pain signals and all that) that there is a slight delay in the signals to "move" going to the RSD side, causing the imbalance. This makes some degree of sense to me because my RSD is in my left foot and I tend to fall to my right side...the rest of my body is moving forward with the motion of movement but my left foot is ever so slightly behind which causes me to fall. I have no idea if this theory is backed up by any sort of proof and would definitely be interested in hearing the "real" answer...but figured I would share this little theory anyway. I cannot for the life of me remember WHERE I read this btw...I read it back when I was in the midst of the worst period of time last year with spread and seratonin syndrome and all that. Many of my memories from that period of time are just GONE. But when people ask about the balance issues that's usually what I tell them and it seems to be something they can understand and wrap their heads around. Not that I want to be spreading false information...I really don't know whether this is the real reason for the balance problems or not...but it's an interesting idea...

Last night I had my first major flare up in my arm since I've gotten the pain relief in that area. I am pretty sure I know exactly what did it too. I went to the grocery store and didn't pay attention when they were bagging things up. The idiot bagger put all TEN of my Vitamin Waters in ONE bag. That has never happened before in the many times I have bought them there. They always use 2 bags (5 in each) and that's never been an issue. He even double bagged the one bag with ten so it's not like he was even saving bags. I do not know what he was thinking. I carried that bag into the house with my left hand and that's the one that had the flare last night. I should have rebagged it before carrying it in...hindisght is always 20/20.

Anyway...it was a really BAD flare. Arm turned cold, pain at level 10 (plus 100), swelling, etc...I was actually crying which doesn't happen often anymore from the pain. But I sucked it up, got myself a Lidoderm patch (the pain was so bad applying it I thought cutting the hand off would have been less painful), wrapped it in the self stick first aid tape (LOVE this stuff...doesn't stick to my skin at all), slapped a heating patch on, and used my flexible wrist brace. I haven't worn this brace in over a year but did not want to wake up with my wrist in a wack position, plus it helped secured the heating patch and stuff. I like the flexible ones though because they still allow me to move the wrist and hand, just limit the movement. I actually was able to sleep a solid 6 hours last night even with the flare. This morning it is better. Still worse than normal but after taking a hot bath and using the ultrasound it's not too bad compared to normal.

I'm keeping my TENS off the ankle today so I have it available for my wrist throughout the day. It's more troublesome to try and use on my wrist because even at twice their normal size my wrists are still tiny...but it's worth going through it when I have a flare like this. And hopefully by the end of the day I will be back to "normal." Right now I have nothing on the wrist though and have been working on some PT exercises with it.

As much as all this sucks though...still some positives. First, prior to tDCS there is no way that overnight my flare would have calmed down so much. Second, no way prior to tDCS treatments that I would have slept 6 straight hours with a flare like this. Third, one really bad flare in ONE of my arms in several months...that really is not bad at all considering how things used to be.

It was a horrible reminder though to be continually grateful for the lower pain levels I've been having now for the past month or two. I'm sure I feel the flares worse now because of that. When you live with the pain always at a high level there is a sort of acceptance that comes with it. Now...it's different when the pain gets that high...especially when it comes on suddenly as opposed to a gradual increasing throughout the day like normally happens with my ankle or my hands when I am doing various activities.

Sorry it's not the best news but wanted to share the experience with you guys. Flares still do happen and it's still important to be careful and be ready to deal with them whenever they come...no matter how agonizing that may be (like was the case with putting that darn lidoderm patch on...hurt like heck but once it was on it did help). I'm glad I bought more heating patches on my last grocery shopping trip...would have been a different situation if I didn't have any on hand...

Amazing Catra
 

You are just so inspiring. You made my day again with hope of some improvement with the tDCS. I wish everyone could be as upbeat as you are when it comes to getting past the pain. Most people would have curled up in bed or the couch for the day with your pain level but you pushed on to the bath, pt. the patches and still had the ambishion to write on here. AMAZING. So sorry you had to go thru all this. Wish we could all take a little piece of the pain to make it go away. Did you use the tDCS machine also or do you plan to? Is this when you return to using the machine as a booster? I really am praying that you feel better soon and that along the way some good comes out of my treatments. Fell Better Catra you deserve it.:)

I have continued to just do the two treatments a day at 20 minutes each. I don't alter that in any way when I have a flare up...just continue as usual. Every once in a while I may miss a session because of my schedule or if my boyfriend is off for the day...but that is a VERY rare occurance. Otherwise it's twice a day every day...which is why I think I continue to see the improvements with the sleep and the reduced sensitivity continues to travel up my arms (sort of in the reverse path of the way it spread).

It's easy to give in the pain and not do anything but harder to suck it up and do what I need to to address the flare ups of pain...but I know I need to do it. If I let myself get away with not doing it once, it will be easier to not do it the next time. The results I think show that this is all worth it...but I admit that sometimes in those moments of pain where it is so bad you can't see straight that it takes a LOT to make myself do what I have to. I try, in those moments, to remember the wheelchair and how helpless I was...that's usually the best motivation to push through the pain because as I recall even when I was useless and not able to move I wasn't in any LESS pain.

Good news is that the pain is definitely returning to its normal levels right now...which is a relief. The swelling all seems to have gone down and the burning pain is MUCH better. Thanks for your kind words Hampster...but I wouldn't want anyone to have to take on any of my pain. We all have our own to deal with and I am so grateful that this is no longer an all day every day occurance with the level 10 pain...because it was for a really long time. Slowly but surely...things are getting better. :)

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!!!!!