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 03-08-2016, 04:54 PM #11
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Thank you all so much for being so supportive (and dealing with me complaining) I have been reading your comments as you posted them, I have just been having trouble posting a reply. It seems like any time I go to reply my brain just stops working. It's honestly pretty difficult to think to reply now I just don't know why. I feel like im.. Emotionless(?) Like I'm dissociating again. Which I have a problem with. I know I need to get a therapist or something like that it's just that only therapist that I trusted doesn't take my insurance Any more. And I don't think I'm am to go through the whole explaining my entire life to some one again, especially since they usually dismiss alot of things that happened in my life. It's like they don't want me to trust them. I know there was something I wanted to say, but I can't remember. Hopefully I remember soon so I can add to this.

Once again. Thank you so much all of you, I'm finding a way to tell my mom about it, I just have to find how to explain it.

Sent from my Nexus 7 using Tapatalk
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Old 03-08-2016, 06:25 PM #12
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Dear Kitty,

There is a big difference between complaining and sharing. I think you really needed to let some of that out. This is a safe place to come and do that. We understand and support you. It does get frustrating and the sadness and losses are real. They need a voice, you can't hang on to that stuff all the time.

Please know that we appreciate how hard it is sometimes to open up about things. Most people can't really understand what it is like to go through so much. Even I can't understand just what you're going through, but I know what it is to have your life irrevocably changed by tragedy. We can at least help you carry your burden by understanding what serious loss is like. Come and share sometimes. It's okay.

Thanks for checking back in. It is good to hear from you. But please don't worry about giving a perfect response.

If you decide to work with a therapist, there is no need to re-hash your whole life. They can help you deal with the now and only visit your past if a specific belief from then is impacting you currently.

Sending enough hugs for the day and through the night,
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Old 06-20-2018, 12:40 PM #13
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Default Dear Kitty I live in Holland and have more or less the same problem but i have found

Dear Kitty please dont give up I know how you feel and had more or less the same problem but I have managed to walk again by excercising a little but more everyday which took me a long long time and I have a a very strict dieet and i dont eat gluten anymore
I started whith walking 6 steps a day outside and after 3 days of doing this i walked 9 steps and after another 3 days of doing this 12 steps and so on.When I could walk 60 seconds I added 10% after 3 days and so on.
It was hard but i succeeded. I also rest every afternoon one hour and a half and during that i listen to the cd from louise hay, how to heal yourself or you can heal yourself ( i am not sure because i have the titel in dutch)
That is very helpful against depression and gives you hope again !
I would advise you to find out if you have allergies or if the pain gets worse write down what you have eaten the day before so you can find out if you have a reaction to food.
Also did you know that 33% of the people who suffer from crps do not tolerate gluten?
Also did you take many antibiotics in the past?
Crps can be caused by a leaky gut and/or candidiasis.
You can find out all about a diet for those 2 things on the internet.
Do never give up it can get better but you will have to do it yourself.
I also have had many relapses but then i start all over again.
You are stronger than this disease.
Love
Lia (from Holland)
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Old 06-26-2018, 04:35 PM #14
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Hi Kitty,

Everything you said is so true with the depression. I got hurt in a work related accident October 2017,in December on my birthday i was diagnosed with CRPS of my right hand since then workers comp has given me little to no treatment and is fighting me every step of the way even after seeing four IME’s i get this monster of a illness is depressing i had to start seeing a therapist again. And i get the age thing im a few years older then you i am 22 now who also had a job and now i have to figure out what i can do with one hand because its travaling and its scary not knowing your future or what you can do or beeing deemed disabled so young it sucks! 2016 i had cancer and please im only comparing my battle with cancer to the crps battle so please i hope no one gets offended but my cancer battle i feel like now looking back on it compared to this basically 24/7 pain where even ambien dosnt help me sleep was so much easier. But kitty dont lose hope you are such a young strong woman and we will all find our way in life it just might take a little longer for us. If you ever want to talk ill be here since i just found this site thankfully! Stay Strong ❤️
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Old 06-29-2018, 05:42 AM #15
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You are allowed to vent! But seriously!!!

I will be having this "monster" coming September 23 years. It's been quite a "journey" to say the least.

I personally really don't like talking about it and getting it all to the forefront, it's nice and buried in my mind, and I prefer it stay that way. I just deal with my disability day to day, take it one day at a time. IMMHO that's the best you can do.
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=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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