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 01-20-2008, 10:22 AM #1
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Default Just need to talk...

Heya

Well.. as ever you lot are my "respite" from the real world... I just need people that understand what it's like to live with this. I know I'm alot more severe than many of you.. but I know that you understand..

The last couple of weeks have been mad, I've had exams, through student support I've been supporting a suicidal student who has been very unwell and doesn't trust anyone but me, I haven't been resting enough, my diet has been off, we've been having to increase and increase my medication to stop me screaming at night and to stop me from bursting into tears or screaming during the day, I've been working 23 hour days... and, well.. exams didn't go well... so.... finished Friday..

Since then I have been passing out an awful lot. Over 100 times yesterday. I was screaming, crying, scratching at my face, my eyes, biting myself, pulling my hair out, fitting. I'd pass out, come round, wouldn't know where I was, who I was, what was happening, even who James was! I didn't know I was at uni, lived in Bath or anything at all like that. Fitted 4 times... still passing out all the time.. even in neck brace and tilted I'm just passing out in conversations, in the bathroom, when Yvonne is brushing my teeth.

AGH!!!

help.. I just can't handle this pain and everything like this anymore. My friends and James are amazing but I just can't live like this anymore

Love you all

Frogga xxxxxxx
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Old 01-20-2008, 11:25 AM #2
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oh sweets...i wish i knew what to say. just know i hear you and sen dyou lots of gentle gentle hugs and love.

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frogga (01-22-2008)
Old 01-20-2008, 02:37 PM #3
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Frogga,
I am so sorry about what you are going through ((hugs))
I too wish I knew what to say, but please know that we are here to support you if you need any help.
If you want to chat, I am here.
Gentle hugs and kisses
Love
Alison
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Old 01-20-2008, 03:03 PM #4
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Hi Frogga,

I'm so sorry for your pain and what you are dealing with - if you ever need someone just to talk with - I'm here.

I'm sending you pain free hugs and wishes for a better day.

terry
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Old 01-20-2008, 04:29 PM #5
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You are so awesome - giving help and support to another when you are in such a tough place yourself.

I'm mad at the Drs and the system that can't seem to find help for a smart and wonderful young lady like you.

you are a hero to me always
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Old 01-20-2008, 05:04 PM #6
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Default Sorry

Frogga,

So sorry you have to go thru this- You can always vent here!

I forgot, have you had ketamine and or HBOT- Do you think you are having seizures when you pass out?

Deb
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Old 01-20-2008, 11:54 PM #7
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aww hugs hon.. painless ones..
give me some hints and I will start researching for help, dysautonomia.. the part that makes you pass out what kind have they diagnosed?

I spent the day searchin through the clinical trials but I just don't know where to shorten the parameters, your Dx and SX etc.. POTS yes I think but alot mores going on too.. you can IM me if you like, there are so many promising studys being done now.. I just need to try help you somehow, have you told your doctors how bad it's gotten?

I bet it's a weight off your shoulders to be done the term even if the tests werent great.. mabie you will be able to rewrite them later when you are more stable and can concentrate.. or just leave it and know that you did your best, you are an incredible young woman and I am proud to call you my friend.. we all are here for you hon as I hope you know..

this is a sanctuary isnt it. I am so glad you have James and Ben and others there with you.. it will get better my friend and I will light a candle for you tonight Rosie.. a vanilla one.
Sandra
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Old 01-21-2008, 08:39 AM #8
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Rosie,
Much love and understanding to you as always
Tayla
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Old 01-21-2008, 07:45 PM #9
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Default Frogga....

It's been along time girlie since I have been on here to speak to you. I haven't forgotten about you. In fact, I sent you a private message. You should have it in your inbox on this site.

You were always there for me to give me such good advice with love and support and I would like to do the same for you. I apologize that you haven't gotten any better. Seems like you have been getting worse...

When is your semester over? When do you get a break? Seems like you are overloading yourself...

My thoughts and prayers are with you always...I am always here for you!!

Heather
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Old 01-21-2008, 10:22 PM #10
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Hi Frogga. You're one of the strongest people I know and you should be giving me advice. I read all your posts and never seem to know what to say. This time I believe I do.

You need to think about yourself first until you can get back to square one. Diet is critical probably with this condition so at least try to get your diet fixed back up. Get some rest and exercise and relax once in a while. You can't save the world yourself.

Best of luck. Perhaps no one deserves it more.
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