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 05-31-2008, 12:37 PM #1
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Hi everyone,

Sorry that I haven't been around for a such long time.

I have been to see a new PM dr in London (England) and I have been accepted onto there 3 weeks (possibly longer) PT program - I will start that on the 7th July!!! Me and my mom will be staying in the hotel that is attached to the hospital whilst we are there, as the hospital is 3 hours away from where we live. I will have 2 hours of PT in a morning and then tuition straight afterwards, then dinner and then another 2 and a half ours of PT in an afternoon. I am a bit nervous about starting the course as I know it will hurt a lot but I am excited at the same time because there is a good chance that I will get "better" to some degree.

I am still having the really violant spasms in my leg, I have tried several medications to get them to stop but they just wont! I am still having PT at the hospital where I was diagnosed with RSD at the moment until I begin the 3 weeks PT program and then they will decide how often I will need to see them afterwards depending on how I respond.

How are you all doing? It has been so long since I spoke to you and I have really missed you. I will try and post more often now and will keep you all updated on how I get on with the PT program.

Love and best wishes to you all
Alison
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Old 05-31-2008, 01:48 PM #2
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Hi Alison!

It is good to hear from you! Sorry to hear about all the troubles, but gla youor goin to get some help there. I sure hope it goes well.

I wish I could say im doin ok LOL. Been learnin that I got more things wrong then the RSD here recently, and will be posting up the stuff in a minute. Just wanted to say hi! And give ya a BIG
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Old 05-31-2008, 03:39 PM #3
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Good luck with the program - please let us know how you are doing!

I will be thinking about you....

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Old 05-31-2008, 04:08 PM #4
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Hi Alison!!

Thank you for letting us know!!!

You are in my prayers.

I wish you the best with the new PT!!!

Stay strong and remember that you have many people who care and are cheering you on!!!

Check in as you able and let us know how things are going!!

Abbie
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Old 05-31-2008, 05:52 PM #5
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Dear Ali,

I have been reading this forum for just over a year and I have enjoyed your posts so much. I just feel so positive about the intensive PT you are going to begin in July. You are so young and the studies support such good odds for a total recovery for RSDers in your age group.

You are so brave for someone so young. You deserve this Ali; it is your turn!

Lisa
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Old 06-01-2008, 11:47 AM #6
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Hi Ali,
It's so nice to see you posting. I wish you good luck in your PT program in July. I hope your spasms get better soon so you can get relief. I will keep you in my prayers and hopefully the PT will help so much. Take Care

Laraine
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Old 06-01-2008, 03:06 PM #7
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Hi Alison,
It was good to hear from you. Hope all goes well with your treatment and pt. I know how painful it is, but it's worth it to get the use of your limbs again. I had frozen shoulder, really RSD from breast surgery. I'm so glad I stuck with it. RSD used to be call hand shoulder syndrom. Anyway, I had lot of spasms too , myclonic jerks, and electric shocks through lots of parts of my body and brain. I had been on 3200 mg. of Neurotin to get them nearly stopped. about 2 years and then about a year ago I changed to the new drug lyrica and it worked well for the spasms and better for pain. Was able to reduce my pain meds. I'm not saying I don't have pain, I do but I'm willing to go down on meds to feel more normal.Let us hear from you after you get back home. Don't get discouraged from the treatment-it's very slow. I took pain meds an hour before pt. I also had an hour of massage just before pt.
It's wonderful you have your Mom with you. Loretta Jewell
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Old 06-01-2008, 10:06 PM #8
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Hi there Ali!
I too, am very excited to hear that your excited about going for pt and of course you will be in my thoughts and prayers too. Hang in there sweetie, your going to be ok. Love you, ~Desi
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Old 06-02-2008, 07:07 AM #9
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Ali,

Hi hon, I'm so glad to hear that you will be going into the program very very soon. My fingers are crossed that it will help, and I know that you will give it your all while you are there. Please keep us posted as to how it is going. I know your mom must be so excited also.

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Mary
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Old 06-03-2008, 03:25 PM #10
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Hi everyone,
Thanks for all of the best wishes - they mean a lot!! I will keep you all updated and I hope you are all having the best day possible.
Love and pain free hugs to you all
Alison
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