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 04-11-2010, 05:28 AM #11
finz finz is offline
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Lisa,

What concerns me about your post is that you say your doc said if this doesn't help nothing will.

To the best of my knowledge, that is just plain wrong !

The SCS does work for some people, which can be important to remember because many of the success cases are not still posting here. Maybe you can ease your pain with a SCS

There have been many posters here who have unfortunately found it has made their condition so much worse. That is a serious consideration.

There are other options out there. It concerns me that your doc wouldn't mention them and totally discounts them. HBOT and ketamine might not be realistic options for you (or many of us) because of insurances refusal to pay, but there is also the implantable pain pump. Look for posts by Lost Mary....she is having great results from hers
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Old 04-11-2010, 08:41 AM #12
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Since I messed my post up I will rewrite it and I am sorry about the mistake. I was told similar as you by a doc but it was wrong cause then I went for other opinions and was given many other less invasive options. I am not sure what treatments you have had but could you go for another opinion? Sorry again about my post. I have to proof read more.

Last edited by daniella; 04-11-2010 at 02:01 PM.
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Old 04-11-2010, 12:05 PM #13
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Quote:
Originally Posted by daniella View Post
I agree about the statement about the scs if it does not work nothing will. I am not saying to do the scs or not to do it. I will say that the pain doc I saw at UCLA told me that was my only option and after another pain doc there were others that I could and should try first. I am sorry if you stated this but what have you tried before this? Could you go for another opinion? Feel better

oh, I have said and typed things before that really sound desperate and end of the line for me.. it just plainly comes out wrong! I hope this what you possibly mean't by that statement..it may have been what was in your heart at the time, which one of us have not been there before?? Or it may be what the dr. said or implied..the bottom line is we are never with out hope or intervention..our greatest determent is money and the lack of medical knowledge, and Dr.'s... the hop in our hearts and determination far our exceeds the support, medically that we receive..thankgoodness we have eachother to clearify and bounce our sad, ill hopeless feelings off eachother..as lets face it..we have a huge painful monkey on our backs..and we can't shake it..no matter how we try...it's going to be ok..one day at a time and please... never give up hope on trying..as our lives are priceless and we only get one shot at it..so do your best as well we all should..and when you are at a loss..come to us..just don't ever feel you are out of options!!

Many painfree hugz....

Kathy
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Old 04-11-2010, 01:34 PM #14
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[QUOTE=keep smilin;643105]oh, I have said and typed things before that really sound desperate and end of the line for me.. it just plainly comes out wrong! I hope this what you possibly mean't by that statement..it may have been what was in your heart at the time, which one of us have not been there before?? Or it may be what the dr. said or implied..the bottom line is we are never with out hope or intervention..our greatest determent is money and the lack of medical knowledge, and Dr.'s... the hop in our hearts and determination far our exceeds the support, medically that we receive..thankgoodness we have eachother to clearify and bounce our sad, ill hopeless feelings off eachother..as lets face it..we have a huge painful monkey on our backs..and we can't shake it..no matter how we try...it's going to be ok..one day at a time and please... never give up hope on trying..as our lives are priceless and we only get one shot at it..so do your best as well we all should..and when you are at a loss..come to us..just don't ever feel you are out of options!!

Oh I AM SO SORRY! I am going to correct what I meant on my post. I meant I agree with the other poster that the doc who made that statement to you is wrong. That is why I went to explain how I was told what you were about the scs but did not do the scs and ended up trying less invasive and was given other options in treatment. I agree we can never give up hope.I know a girl who it took trying many different treatments but she is in a really good place now with her rsd and back to living life. I am so sorry again. I have had lack of sleep for many days in a row and high pain. I have to proof read.
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Old 04-11-2010, 08:31 PM #15
Lisa in Ohio Lisa in Ohio is offline
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[QUOTE=daniella;643135]
Quote:
Originally Posted by keep smilin View Post
oh, I have said and typed things before that really sound desperate and end of the line for me.. it just plainly comes out wrong! I hope this what you possibly mean't by that statement..it may have been what was in your heart at the time, which one of us have not been there before?? Or it may be what the dr. said or implied..the bottom line is we are never with out hope or intervention..our greatest determent is money and the lack of medical knowledge, and Dr.'s... the hop in our hearts and determination far our exceeds the support, medically that we receive..thankgoodness we have eachother to clearify and bounce our sad, ill hopeless feelings off eachother..as lets face it..we have a huge painful monkey on our backs..and we can't shake it..no matter how we try...it's going to be ok..one day at a time and please... never give up hope on trying..as our lives are priceless and we only get one shot at it..so do your best as well we all should..and when you are at a loss..come to us..just don't ever feel you are out of options!!

Oh I AM SO SORRY! I am going to correct what I meant on my post. I meant I agree with the other poster that the doc who made that statement to you is wrong. That is why I went to explain how I was told what you were about the scs but did not do the scs and ended up trying less invasive and was given other options in treatment. I agree we can never give up hope.I know a girl who it took trying many different treatments but she is in a really good place now with her rsd and back to living life. I am so sorry again. I have had lack of sleep for many days in a row and high pain. I have to proof read.
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Old 04-11-2010, 08:41 PM #16
Lisa in Ohio Lisa in Ohio is offline
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Maybe I need to clarify a bit more. I am entangled in Ohio's w.c. system with the additional complication of a self insured employer. Every treatment that is proposed has to have an approval from them, which can take months. It has really delayed treatment. This month they refused to pay for my Cymbalta that I had taken for over a year, so I spent a fun-filled weekend detoxing. Right now the only treatment that is being allowed is medication, Trazadone, Flexeril, percocet, Oxycodone, Avinza, Protonix, Tylenol Arthritis, and some others. I just received some devastating news about my daughter and my stress and anxiety level is high. I just gave up and cried all through church this morning. Anyone who is in this system and knows of a better way to get treatment, your advice and wisdom would be so appreciated. Right now I feel like a junky, and probably am severely hooked. I am so grateful to all of you and how kind and willing you are to share and help. I just feel like I have found a group of God's angels.
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Old 04-11-2010, 09:03 PM #17
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Quote:
Originally Posted by Lisa in Ohio View Post
Maybe I need to clarify a bit more. I am entangled in Ohio's w.c. system with the additional complication of a self insured employer. Every treatment that is proposed has to have an approval from them, which can take months. It has really delayed treatment. This month they refused to pay for my Cymbalta that I had taken for over a year, so I spent a fun-filled weekend detoxing. Right now the only treatment that is being allowed is medication, Trazadone, Flexeril, percocet, Oxycodone, Avinza, Protonix, Tylenol Arthritis, and some others. I just received some devastating news about my daughter and my stress and anxiety level is high. I just gave up and cried all through church this morning. Anyone who is in this system and knows of a better way to get treatment, your advice and wisdom would be so appreciated. Right now I feel like a junky, and probably am severely hooked. I am so grateful to all of you and how kind and willing you are to share and help. I just feel like I have found a group of God's angels.
Oh dear Lisa..You have found us..God's angels... I gotz the peach wings..I like that color.. Please..hang in there..We all have days and times like that..Just give yourself time to pull back from the meds if need be..It takes time and patience and you are allowed to cry..You have every reason to cry..You like us all are a victum of the cruel system.Not being allowed to be on treatment, meds which you desperately need for your illness cuz some crock says..nah, I don't think we'll approve it.... blah, blah, blah buddy!! Bottome line is you are very important..you are loved and you deserve to feel good..please, allow yourself time and refrain from being hard on yourself..your body is going thru a ton... let it go..get a good nights rest and call on us..we care and were earning our wings so listen closely for the bells... One never knows..they are awared at all times of the day and night!!!

Hugz my friend..

Kathy
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Old 04-12-2010, 07:52 AM #18
daniella daniella is offline
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Hi I am sorry for your struggles. Some meds like Cymbalta which I am on you can get a form from the company and have your doctor fill it out. If you are unemployed or have a limited income they give the med free to you. Many other meds do this too. I was not told this by many docs and then one just mentioned it out of the blue. I think you can even go online and print the form for your doctor to sign. I wish I had more answers or help for you but wanted to mention that. I am sorry about your daughter. I am here if you need a friend. Hang in there and feel better
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Old 04-12-2010, 08:12 AM #19
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Daniella...........

Hon, welcome to the brain fog/sleep deprived/what did I just say ? club. We've all been there, done that. No harm, no foul

Lisa............

Do you have a lawyer working for your case ? I don't get how they can refuse the Cymbalta after you've been on it for a year. Then again, what in the WC mess makes sense......

When I started on Cymbalta, it was originally denied, but after a note of medical necessity from my doc they did approve it. Did your doc try that ?

I know lessening your stress is easier said than done, but at least be cognizant of the fact that your pain is going to be worse while you are dealing with extreme stress. Try not to feel hopeless. As the situation improves, stress levels go down, and pain goes back to only it's normal range of horrible I hope the issue with your daughter is not too serious or that you can find some kind of solution
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Old 04-12-2010, 09:06 AM #20
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Sorry Lisa. I am also WC, I know how evil it can be. Penny wise but pound foolish to the max. I also have a teenage daughter, I love her death but she knows how to make me nuts at times. This board is truly a wonderful place where we all derive much support from one another.

I recently tapered down off my ALL my opiods. Then I discovered that my pain was severe and I wasn't that much of a hero, so I tapered back up, but to a lower level. I find that I am not crying all the time like I used to and seem to be taking my breakthru meds less often - generally just when the weather is turning. Opiates for me are really downers. They work fairly well (but not all the way) on my pain.

I really hope that WC decides to play fair with you sooner rather than later. Do you have an attorney?

The best of luck to you. And please stick around....

XOXOX Sandy



Quote:
Originally Posted by Lisa in Ohio View Post
Maybe I need to clarify a bit more. I am entangled in Ohio's w.c. system with the additional complication of a self insured employer. Every treatment that is proposed has to have an approval from them, which can take months. It has really delayed treatment. This month they refused to pay for my Cymbalta that I had taken for over a year, so I spent a fun-filled weekend detoxing. Right now the only treatment that is being allowed is medication, Trazadone, Flexeril, percocet, Oxycodone, Avinza, Protonix, Tylenol Arthritis, and some others. I just received some devastating news about my daughter and my stress and anxiety level is high. I just gave up and cried all through church this morning. Anyone who is in this system and knows of a better way to get treatment, your advice and wisdom would be so appreciated. Right now I feel like a junky, and probably am severely hooked. I am so grateful to all of you and how kind and willing you are to share and help. I just feel like I have found a group of God's angels.
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