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 07-27-2008, 05:02 PM #11
terry terry is offline
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Default Hi Ali

Hi Ali!! I am so happy to hear that you are walking!!!!! You don't know how happy that makes me - you are in my prayers. All the hard work they put you through is paying off. I know it is painful, but it is painful without doing the exercises - so take the pain so that the pain eventually goes away. I wish you well and hope to hear more good news from you. Jesse is doing well. He had a little fatigue and weakness the other day, but I just game him a vitamin C, made him eat and go out and play - I now know that activity is the answer!!!

Keep in touch.
love,
terry


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Originally Posted by ali12 View Post
Hey everyone - I hope you're all having a low pain day!!
Just thought i'd give you a quick update on how the PT program is going. The PT is going ok but boy do they work you hard lol!!
The PT's focus a lot on strengthening my muscles - I have to wear 1-2lb weights on my legs and my arms. I am now managing to walk short distances for the first time in 12 months so I am really happy!! I still have really bad pain (the pain is about an 8 on the pain scale, although it will increase whilst doing PT or walking), hypersenstivity, dystonia, rsd, swelling, colour changes etc etc but i'm able to walk so i'm happier than I was!! I go home on Friday (yay!) but the PT's want me to come back for a further 2 weeks from the 8th September to try and focus more on the RSD, Dystonia and Hypermobility. Once I am back home I will have to go for weekly Physical Therapy at my local hospital and I will be given exercises to do daily to try and strengthen my muscles.
The PT's want me to go and see the Podiatrist tomorrow to see if they can suggest anything to stop my foot from bending out so much, I will also be going to see a Psychologist to talk through my pain and how I am coping etc.
I'll keep you all updated when i can
Take care
Alison
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Old 07-27-2008, 09:00 PM #12
debbiehub debbiehub is offline
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Default Hi Ali

Great to hear you a walking a bit! Keep up the good work and positive attitude! Keep us posted

Love
Debbie
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Old 07-28-2008, 06:26 AM #13
CZZ74 CZZ74 is offline
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Dear Ali, I am so happy u are pleased with your program I think you are being really brave. I am a little worried about your pain going to an 8 level after and during exercise. Its just different from what I have been advised, but Im not doing that great , so I am always open to new ideas. So God bless, I hope the breakthru pain decresases for you. Youre an inspiration! CZ

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Originally Posted by ali12 View Post
Hi Frogga,
Thanks for the well wishes - I really appreciate them. I have just finished the 3 weeks stay in hospital but the physio's want me to go back into hospital for a further 2 weeks from the 8th September to focus more on the Dystonia and RSD. The physio's also said that it may be an idea for me to come back into hospital after Christmas if I am still having problems. The pain is still about an 8 and a half on the pain scale (though it increases when I do PT) but the Physio's said that it may take a while to go down, so I guess it's just a case of waiting and seeing.
I can walk short distances at the moment, about 200 yards at the moment. I tried walking with my mum to a small shopping centre that isn't too far away from the hospital on Tuesday but think I overdid it too much as the pain got worse and my leg started spasming. The physio's said that at the moment I should take things really steadily as my muscles get fatigued really easily. The Physio's had me walking without crutches as they said that it can take a lot of hard work to get off crutches once you are on them.
I have also being given some exercises to do that I need to do on a daily basis to try and build strength in my muscles and get rid of the RSD and hypersenstivity. I am also have weekly Physio at my local hospital.
Sue Maillard (the PT that runs the program) is also going to be discussing my case in an International Conference about chronic pain.
I hope you're ok.
Love
Alison
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Old 07-28-2008, 02:36 PM #14
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Did I hear someone say, that they are walking short distances for the first time in 12 months?? "Oh, Ali, Hun, this is so very wondeful and exciting to hear"!! Thank you for keeping us posted on your progress!! Sounds to me, you have a "GREAT SUPPORT TEAM" going there for you, Allison!! Keep up the good work, and please go at your own pace, which I know you know, how much you can handle at a time!! Much love and prayers going out to you, Alli! ~Lots of Love, Desi
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Old 07-29-2008, 06:45 AM #15
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Thank you all so much for the best wishes - you guys are great!
I'm so happy to be walking short distances again for the first time in 12 months - it's the small things like being able to take myself to the toilet and into the living room that makes a big difference!
I am currently having weekly PT at my local children's hospital and also doing exercises at home. I'm getting on ok with them although they hurt quite a LOT and our springer spaniel puppy keeps jumping on me whilst i'm doing the exercises so we have to put him in another room lol.
I hope you're all ok, i've missed talking to you all.
Love
Alsion
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Old 07-29-2008, 12:24 PM #16
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Thumbs up Hi Ali

Hi that is great your walking now Ali I'm so happy for you. I'm sure it does feel great to able to get around your house some now. I hope you continue to get better and better. I will keep you in my prayers and hopefully your pain levels come down soon. Take Care

Laraine
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