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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Have you accepted your RSD/CRPS? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/225293-accepted-rsd-crps.html)

visioniosiv 08-31-2015 04:59 PM

Quote:

Originally Posted by Littlepaw (Post 1167329)

It is only 2015. The century is young. I'm holding out some super genius will bring hope for the future.

LP.

I've read virtually every one of your posts. You're your very own super genius; and you pretty much know it. You just don't own up to it yet. :hug:

happygirlpa 08-31-2015 11:06 PM

I have unknowingly been dealing with crps type 2 for over 5 years. Been to doctor after doctor. Last fall i hit the jackpot with one who diagnosed me with this. Finally i had a name for what i was suffering with. now i know its not going away. Yes its hard to accept. I am content for awhile then get very bored in my little world. Each time i stray beyond its boundary, i am reminded by crps, and get thrown back into the dungeon until i calm down. Its a terrible cycle and i try to escape but keep getting caught. So the trick is to find happiness where i am now. I try real hard to be grateful for the good in my life. I cant look too far down the road because its depressing.

catra121 09-01-2015 08:42 PM

I have accepted my RSD and most of my limits. I continue to push myself...often resulting in flare ups...but I've accepted this as my life. I no longer look for new treatments hoping the next one will be the magic pill to make the pain go away. I've focused more on coping with the pain and managing the pain to a level where I can function and live my life. I live with VERY high pain levels and no medications except Lidoderm patches for the worst flare ups. Sometimes...my flare ups knock me down and I lose my battle with the pain for a day or two...but I'm winning the war and pick myself back up. Had a baby last November so that has created loads of new challenges and after having my pain at a level where I could function with very few flare ups for over a year...I find myself now having to learn my new limits and how much of myself I have to "save" for the baby...meaning I can't push myself as hard at work or in my hobbies...but it's worth it.

I would be open to trying a new treatment if it'ss hown to help others...but at this point I'm living in the now anknow there is no cure at this time...so I just keep on truckin' and living my life as best as I can despite the pain that plagues me each and every second of each and every day. At some point in the future I know I will hit my limit and will nees to go back to trying to control the pain with meds...but I'm trying to put that off for as longs as possible.

Kevscar 09-02-2015 02:31 AM

It needs a study into why pregnancy stops the CRPS or at least makes it pain free and then returns after birth

visioniosiv 09-02-2015 08:58 AM

Quote:

Originally Posted by Kevscar (Post 1167991)
It needs a study into why pregnancy stops the CRPS or at least makes it pain free and then returns after birth

Adaptations of the endocrine system in preparation for new life

cdwall 09-02-2015 10:23 AM

Quote:

Originally Posted by Kevscar (Post 1167991)
It needs a study into why pregnancy stops the CRPS or at least makes it pain free and then returns after birth

Pregnancy can bring on more tolerance from te mother's immune system in order to not reject the baby, who will appear "foreign" to one's immune system. This tolerance extends to accepting one's own body cells that the immune system had previously mistakenly rejected as foreign (autoimmunity).

This is a well known phenomenon even though it's not completely understood biochemically.

cdwall 09-02-2015 10:24 AM

Quote:

Originally Posted by happygirlpa (Post 1167629)
Yes its hard to accept. I am content for awhile then get very bored in my little world. Each time i stray beyond its boundary, i am reminded by crps, and get thrown back into the dungeon until i calm down. Its a terrible cycle and i try to escape but keep getting caught. So the trick is to find happiness where i am now. I try real hard to be grateful for the good in my life. I cant look too far down the road because its depressing.

This is pretty much my life right now too :(

visioniosiv 09-02-2015 11:54 AM

Quote:

Originally Posted by cdwall (Post 1168058)
Pregnancy can bring on more tolerance from te mother's immune system in order to not reject the baby, who will appear "foreign" to one's immune system. This tolerance extends to accepting one's own body cells that the immune system had previously mistakenly rejected as foreign (autoimmunity).

This is a well known phenomenon even though it's not completely understood biochemically.

Sounds like you've got it mostly figured out then, D:)

catra121 09-02-2015 03:41 PM

I didn't actually experience remission during pregnancy...it was the year prior to the pregnancy where I was experiencing less flare ups and had a good handle on my limits. I feel grateful actually that I didn't have remission because having to learn all over again how to deal with the pain PLUS learning my limits as a new parent with RSD...that probably would have been the end of me...

mama mac 09-04-2015 07:11 PM

Quote:

Originally Posted by cdwall (Post 1167066)
I remember Littlepaw (I think it was) using a really good phrase about dealing with this disease. It was something to the effect of, balance acceptance with fight.

I've had RSD now for over 2.5 years. It took nine months to get diagnosed so I've spent about two years trying to wrap my mind around this crazy disease and researching treatment options. I feel like have plenty of fight but I'm running low on the acceptance part. As long as I have some new treatment around the bend, I have trouble not thinking it's my magic bullet to make this nightmare go away. I can say it to myself a million times, and I'm in therapy. But I can't make it real on all levels.

What are your stories of acceptance or non acceptance?

Denise

What a great question! My acceptance and non acceptance are a day to day thing. I'm new to the illness and still cycling around the grief process. I deny, bargain, get angry and depressed, sometimes all in the same day. Acceptance to me is not going to be a final destination, but a place I hope to touch more and more often and at some point reside there most of the time. Acceptance will not be giving up on trying new options. I hope it will just be a place where I'm at peace with where I am at the moment and still continuing to do what is within my power to improve my life and health. ~mac


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