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 05-19-2010, 08:36 PM #21
RNcrps2 RNcrps2 is offline
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Originally Posted by hope4thebest View Post
Hi momof4
I was doing warm water therapy and the insurance stopped authorizing it (even though four docs have written in there reports how necessary it is.)

I waited around for approval and it never happened so I have resumed it and am paying out of pocket for it and taking only a half hour lunch and working a half hour later to make up for my warm water P.T. time....(I'm hangin' on by a thread with this pace...)
In trying to get the edema down in my lower limb so they can complete the EMG test and also do a Bier block in my lower leg/foot but no veins are visible..

I have been over zealous with the movements and I've created a huge flare...
I I agree with your doc...gentle movements in warm water is the way to go...but I've been trying to flex my ankle repetatively and it is causing mega pain...
One of my docs said the edema is there no matter what I do because it's what RSD does...
But I'll keep trying.

I'm glad your pain level has been reduced by minimizing movement with your RSD site..I guess we have to find the right balance of movement..

Has anyone taken diuretics to get the edema out of lower limbs and did it work?

Hugs from hope4thebest xox
I found out YMCA has a therapy pool which is warm enough for walking or gentle movement and is much cheaper than copay for therapy.
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Old 05-22-2010, 07:30 PM #22
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Default Dear H4TB

How did your deposition go..??

Keep us posted!!

xoxox Sandy
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Old 05-22-2010, 07:49 PM #23
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I have been with out med for a long time. I am in constant pain 24 hours a day there is no relief. I refused meds one because i don't want to become an addict two they would zone me out like a zombie and i coujldn't function. three it just made me high and never really seemed to work. right now no one knows what to do about it. Yes it does spread and gets triple the amount worse if that makes any sense to anyone. I suffer day but fight to put a smile to get through my day with my kids. I am hoping the neuro has some great ideas because im about to throw in the towel.
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Old 05-22-2010, 11:14 PM #24
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Originally Posted by Momlovetobake View Post
I have been with out med for a long time. I am in constant pain 24 hours a day there is no relief. I refused meds one because i don't want to become an addict two they would zone me out like a zombie and i coujldn't function. three it just made me high and never really seemed to work. right now no one knows what to do about it. Yes it does spread and gets triple the amount worse if that makes any sense to anyone. I suffer day but fight to put a smile to get through my day with my kids. I am hoping the neuro has some great ideas because im about to throw in the towel.
Hi Momlovetobake.

I am sorry you are having a bad time right now. In 10+ years I have tried at least 20 or more types of medications. Some gave me the kinds of reactions you are describing. I just wanted to say, don’t give up. It can take a while, but if you cycle through enough options with a good CRPS specialist, you will eventually find something that works the best for you. It may not be perfect, but it will certainly be better than it may feel right now. Keep trying, things always get better eventually. God Bless You.

Bernclay-
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Old 05-23-2010, 01:58 AM #25
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Originally Posted by Momlovetobake View Post
I have been with out med for a long time. I am in constant pain 24 hours a day there is no relief. I refused meds one because i don't want to become an addict two they would zone me out like a zombie and i coujldn't function. three it just made me high and never really seemed to work. right now no one knows what to do about it. Yes it does spread and gets triple the amount worse if that makes any sense to anyone. I suffer day but fight to put a smile to get through my day with my kids. I am hoping the neuro has some great ideas because im about to throw in the towel.
Momlovetobake
I hope you're neuro is being pro-active for you and trying to find some relief for you pain..that is a long time to be in constant pain and have the responsibility of a family with children.
when is the last time our neuro suggested something new?
While I tritate off Neurontin, I want to see how it goes, but the doc wants to try Topamax next as well as a block behind the knee called a popliteal block for my lower leg and foot..They can't do a bier block because of all the edema.
Have you had a Pain Management doc work with you who might have some different ideas for relief?
Please don't give up on getting some relief

Sandy,
The depo wasn't as harrowing as I thought (unless I'm being naive) ..we have to complete it on another day..it ran into overtime..I felt somewhat at ease because my tale is straightforward and true.."The truth shall set you free.."
I was told I'll be able to read the report when it is available..
Sandy, I hope you doing well and getting closer to feeling even better!
Keep us posted!
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Old 05-23-2010, 11:56 AM #26
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Originally Posted by hope4thebest View Post
Momlovetobake
I hope you're neuro is being pro-active for you and trying to find some relief for you pain..that is a long time to be in constant pain and have the responsibility of a family with children.
when is the last time our neuro suggested something new?
While I tritate off Neurontin, I want to see how it goes, but the doc wants to try Topamax next as well as a block behind the knee called a popliteal block for my lower leg and foot..They can't do a bier block because of all the edema.
Have you had a Pain Management doc work with you who might have some different ideas for relief?
Please don't give up on getting some relief

Sandy,
The depo wasn't as harrowing as I thought (unless I'm being naive) ..we have to complete it on another day..it ran into overtime..I felt somewhat at ease because my tale is straightforward and true.."The truth shall set you free.."
I was told I'll be able to read the report when it is available..
Sandy, I hope you doing well and getting closer to feeling even better!
Keep us posted!
Momma...bake..

I am sorry for your pain ..I gather from your post that you feeling somewhat spent and fustrated..I want to address this from another prospective as I am just like you in that I am not able to withstand any medicine either...Cold turkey girl is who I am ...I know what it feels like not to have any drug intervention..we at the mercy of our mean pain straight out but not tied to the effects of the drugs.. kinda bittersweet..and I may be the first to meet our maker and head for the mountain due to my chronic full blown whole body RSD.. but I am happy about being able to place my feet on the floor eachday and feel the love of others..This is a huge process... And I am sorry you are part of it... we are left with the choice of living with a smile or without a smile..allow the smile shine from your heart and be happy as we are not weak..we are strong and we are fighters for what ever tomorrow adds to our plate..I know one thing..the love..you take it with you...but I also want to enjoy it here with you and others here on the NT board and my loved ones in my life as long as I possibly can...Continue to fight and never bend... hold on to that towel...it may come in handy to wipe away tears but they should only be short lived..however..they are important but then be ready to tackle our delimena..RSD.

Hugz, Kathy
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Old 05-23-2010, 08:01 PM #27
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Thanks Bern and Hope I still have not gotten a call from my neuro. I call he office they tell me the records are not there. I call my regular doc i see every two weeks and he says oh i sent it. So i begged him to personally call and im hopingi get a call. I had a pain dr but he was no help he kept naming all sort of other things that were not happening to me. Its rough being in constant pain and managing a family.. I think i went from being alittle depressed to really bad...Everyday iwanna scream. kathy thank you so much for that i needed to hear that. It's a everyday battle to keep it together. My family don't live here and I dont even think they know what im really going through. The only person that hasw great concern is my grandmother and she is unable to be with me. Its just me hubby and the girls. I just want this to be over i so miss my life before this..your right i thank god for getting me through and allowing me to get through my day for my kids and my husband. Thank you all and thanks hope for the post.
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Old 05-23-2010, 09:57 PM #28
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Originally Posted by Momlovetobake View Post
Thanks Bern and Hope I still have not gotten a call from my neuro. I call he office they tell me the records are not there. I call my regular doc i see every two weeks and he says oh i sent it. So i begged him to personally call and im hopingi get a call. I had a pain dr but he was no help he kept naming all sort of other things that were not happening to me. Its rough being in constant pain and managing a family.. I think i went from being alittle depressed to really bad...Everyday iwanna scream. kathy thank you so much for that i needed to hear that. It's a everyday battle to keep it together. My family don't live here and I dont even think they know what im really going through. The only person that hasw great concern is my grandmother and she is unable to be with me. Its just me hubby and the girls. I just want this to be over i so miss my life before this..your right i thank god for getting me through and allowing me to get through my day for my kids and my husband. Thank you all and thanks hope for the post.
Momma..just when you think I have said my peace..I gotz more... we knew that was possible! It saddens me when you said you want it to be over as you miss your life from before..Oh dear Momma..that is a screaming heart..We all know how that feels but you must look past that and admit and believe this is our new selves..our new life and as aweful as it seems we have postives that have risen from our RSD..That is we have become the strongest, most sensitive, heartwarming fighters out there... We are so not done because I swear we were given this chance to live with RSD to help others see that it is poosible and that we do not cave..on no..we live and move forward with a smile for others to see that we will not be pushed over..We will only look forward to tomorrow so we can get up and try again for another wonderful day..Hang in there Momma..as you can see you are loved and we won't allow you to fall....

Hugz, Kathy
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Old 05-24-2010, 01:50 PM #29
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Thanks Kathy...I will remember that.
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Old 05-24-2010, 06:51 PM #30
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Thanks Kathy...I will remember that.
Dear Momlovetobake... Easier typed than done..but never give up..You are loved right here!!

Kathy
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