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 06-17-2012, 01:51 AM #1
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Quote:
Originally Posted by Hampster63 View Post
Thank you sooooo much. You really did make a big difference. I will try to stress less and keep up the hopes of improvement. You really hit the nail on the head in covering all my displeasure. Your suggestion to focus on other activity goes a long way, and it does work because at times I am able to just turn off the pain mode and just push thru. By the way what do you do and where do you work? I don't think I remember you says what it is you do. It sounds exhausting and physically draining, how do you do it????? Again, thank you and I will keep you posted.
I'm an assistant store manager for a big box retail store. It is a very physical job and I am literally on my feet for 9+ hours a day and am lucky if I sit 30 minutes during that entire shift...usually just a minute or two at a time to check sales, email, etc. And that doesn't take into account the fixture moves, putting out product, etc which are all very taxing on me physically.

The good news is that in my 2 weeks now back at work I've been able to work in all of my departments and do projects and it seems to be going okay. I obviously have to do things differently since I need to use the walker but the important thing is that I can still DO them. I actually did a couple of "carry outs" for customers and "carried" their vacuums and steam cleaners to the car...by which I mean I put then on my walker and pushed them out there. I'm making it work. It's still frustrating because I was so much faster and could do things so much easier before...the walker is a real pain. But it is what it is. The more I do things, the more efficient I will get at doing them this new way.

I honestly don't really know how I am doing it...i just keep pushing through. I really love my job and what I do so that helps...and when I am working there are so many other things to focus on besides the pain that I really don't feel it until the drive home (it's an hour commute now for me).

I'm still playing with the best way to use the various treatments for work. I've been wearing the TENS all day at work but I've still been getting bad flares and swelling at the end of the day. Today I wore a lidoderm patch on my ankle instead and am wearing the TENS now that I amx home. This may be the better way to go. My pain levels are higher at work but with the lidoderm patches on I don't seem to go into those flares. I've been wearing them on my arms every day and they seem to help with the pain there. I don't know...I keep playing with it.

Yesterday and today were my first closing shifts since I've been back and both were unfortunately late nights where we didn't get out until 1am and 12:30am. So I'm pretty tired and I think my strategies for closing shifts, weekends, project days, and meeting days will all need to be a little different. Thankfully my body is adjusting to the physical activity well and after two weeks I'm not really feeling any soreness anymore and it's just the RSD that I'm dealing with.

Sorry...I tend to babble a bit this late at night...
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Old 06-20-2012, 04:18 PM #2
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Hi everybody,
I hope you are all progressing towards wellness. This is just a brief hello to say that I am back. You have all remained close to my hearts. This is a wonderful forum offering hope to those who thought it once impossible, including myself. I am very grateful for all Ballerina's work and her inspiring spirit which has spread through all of us. It has indeed kept me going through the most difficult times. God bless all and may healing come soon to every single one of you.
Warm regards, hope and peace,
Nick
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Old 06-20-2012, 09:34 PM #3
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Default not working

still not working for me...so depressing as I continue to deteriorate. I really need this to work!

Debbie
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Old 06-21-2012, 02:48 PM #4
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Default Please keep trying

Quote:
Originally Posted by debbiehub View Post
still not working for me...so depressing as I continue to deteriorate. I really need this to work!

Debbie
Dear Debbie
Do not give up. We may not all be built exactly the same but we're all from the same factory, we're all human. Our individuality and the time course we've endured our conditions necessarily have a bearing on variables such as electrode positions, current density, length and frequency of treatment, etc.
I hope to apply tDCS for tinnitus. In the studies there are many individual factors why some respond and others don't. Maybe given the correct protocol, we are ALL responders, all healers. So maybe it is our task to try out different protocols until we hit the right one. There lies hope.

It would be interesting to learn what works for whom and for someone to tabulate the data as a cross-reference guide. My own experience has become more severe and gives me no choice but to give it a big try. How long have you been using tDCS, with what equipment and what protocols?
Please don't despair, the science is solid and I think we can all be responders,
no matter how resilient the condition appears to be.
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"Thanks for this!" says:
catra121 (06-21-2012), Joydee (06-21-2012)
Old 06-21-2012, 04:18 PM #5
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Quote:
Originally Posted by debbiehub View Post
still not working for me...so depressing as I continue to deteriorate. I really need this to work!

Debbie
Hi,

I agree with what Nick Allen said. As can be seen by fellow board
members who may have expected to hear how my daughter is coming
with her trial using TDCS nothing has been posted. This is due to
Murphy. Everyone knows Murphy, he or she is that hidden element which
seems to make things go wrong even when we humans try to make them
go right. It has been sixteen days since beginnig first protocal but
Murphy and his law has seen to it than nothing runs smooth. First of
all at consultation time my daughter suffered a migrane so Doc Fugedy
gave her two treatments, one designed for the headache and she
was to proceed with one protocal for her CRPS. Then she had some
problems with burning since the Doc first advised just water so she
started using Saline. However as treatments proceeded she kept
having headache,s. She E-mailed the Doc but both played E-mail tag
or phone tag, unsure if both.

In addition, I suppose despite the pain involved there is still humor.
I certainly got a chuckle out of my daughters account of what happened
during one E-mail to the Doc. She had typed out his name but was
using auto correct. She meant to say hello Doctor Fugedy but the
auto correct changed what she typed to "digest" so the E-mail said
Hello Dr. Digest. My daugther quicky sent anorher E-mail explaining
the error to the Doc but when my daugter shared with me the event
I could not help but wonder if when the good Doc first looked and
the E-maill if he thought to himself. I am not a Gastro Doc, rather
a PM Doc.

Of course due to the continued headaches the Doc then reasoned
in light of the problems it might be a good Idea for now to use the
migrane protocal if I am understanding correctly but over one week
end my daughter and the rest of the family went to a family reunion
in the park and since she was out in the sun for hours had a sun burn
on her head so took a couple days off. She has resummed with
the new protocal but with all the delays and dealing with Murphy
it is much to soon to tell anything at this point in time. I however
continue to have faith in the possibilites presnted with TDCS and
complety agree with Nick Allen. My prayer is that everyone will
be responders to TCDS at some future point in time. to all.
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Old 06-21-2012, 04:50 PM #6
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Quote:
Originally Posted by Joydee View Post
Hi,

I agree with what Nick Allen said. As can be seen by fellow board
members who may have expected to hear how my daughter is coming
with her trial using TDCS nothing has been posted. This is due to
Murphy. Everyone knows Murphy, he or she is that hidden element which
seems to make things go wrong even when we humans try to make them
go right. It has been sixteen days since beginnig first protocal but
Murphy and his law has seen to it than nothing runs smooth. First of
all at consultation time my daughter suffered a migrane so Doc Fugedy
gave her two treatments, one designed for the headache and she
was to proceed with one protocal for her CRPS. Then she had some
problems with burning since the Doc first advised just water so she
started using Saline. However as treatments proceeded she kept
having headache,s. She E-mailed the Doc but both played E-mail tag
or phone tag, unsure if both.

In addition, I suppose despite the pain involved there is still humor.
I certainly got a chuckle out of my daughters account of what happened
during one E-mail to the Doc. She had typed out his name but was
using auto correct. She meant to say hello Doctor Fugedy but the
auto correct changed what she typed to "digest" so the E-mail said
Hello Dr. Digest. My daugther quicky sent anorher E-mail explaining
the error to the Doc but when my daugter shared with me the event
I could not help but wonder if when the good Doc first looked and
the E-maill if he thought to himself. I am not a Gastro Doc, rather
a PM Doc.

Of course due to the continued headaches the Doc then reasoned
in light of the problems it might be a good Idea for now to use the
migrane protocal if I am understanding correctly but over one week
end my daughter and the rest of the family went to a family reunion
in the park and since she was out in the sun for hours had a sun burn
on her head so took a couple days off. She has resummed with
the new protocal but with all the delays and dealing with Murphy
it is much to soon to tell anything at this point in time. I however
continue to have faith in the possibilites presnted with TDCS and
complety agree with Nick Allen. My prayer is that everyone will
be responders to TCDS at some future point in time. to all.
That does sound like a lot of craziness getting in the way. I'm sorry to hear that she's been having these terrible migraines. I had AWFUL headaches last year and nothing the doctors tried worked until I was put on the clonidine patches. That still didn't help much with the headaches exactly but it stopped the blurry vision, dizziness, etc which were just making the situation unbearable. They've actually gotten better over the past few months but just started getting them again lately. I would guess that it's the increased activity and pain levels with working...though it could just be the customers too...lol!
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Old 06-21-2012, 04:51 PM #7
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Quote:
Originally Posted by debbiehub View Post
still not working for me...so depressing as I continue to deteriorate. I really need this to work!

Debbie
I keep praying for your success Debbie. Keep at it...
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Old 06-22-2012, 10:40 AM #8
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At work yesterday I had the oddest thing cause my hand to flare and freeze up on me (I literally had to pull my fingers apart with the other hand)...dusting. It was "dusty thursday" and everyone in the store is supposed to dust while they are working. I was the opening manager so I had a swiffer duster and was dusting all the fixtures at the front of the store...guess it was too much for me. Lifting vacuums...fine. Dusting...not so much. RSD is so odd...
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Old 06-25-2012, 11:24 PM #9
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its possible it was a muscle cramp.. in that case stretching would help.. ( ill keep my fingers crossed that , that is the issue...soft hugs
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Old 06-26-2012, 01:36 AM #10
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Unfortunately not a cramp. This happens to me a lot in the past year if I immobilize my hands or arms at all...even if it's just having them in the same position without moving or stretching them (like me holding the duster for extended periods of time or the fishing pole when I went fishing or also if I am stitching and my one arm doesn't move much). It's not just a cramp...it's total freezing and I have to forcibly move that limb usually with my other arm. God forbid it ever happens to both sides at the same time...I'll be a useless mess! I try to be good with this stuff and not let myself immobilize but sometimes with the things like dusting or fishing or stitching I don't even realize I am doing it until hours later when I try to set the duster, fishing pole, or stitching down. Once I know that these things cause the freezing I just have to make myself move the limb every 5-10 minutes. Frustrating how much life changes when you have RSD...even when things are going good you can't stop and take a break from it at all or "forget" you have it and the things you need to do for treatment/therapy. Oh well...things are generally going so awesome...this is just a tiny blip on the radar.
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