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 01-25-2015, 11:03 PM #1
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Poll Crps

I I have been fighting this for over 2 years now. It took away my walking. Now I'm slowly learning how to walk. It is very slow and very, very painful. It is in my left foot and up my left leg.
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Old 01-26-2015, 11:08 AM #2
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Very glad that you are walking again....keep up the good work.

Last edited by Enna70; 01-26-2015 at 11:10 AM. Reason: spelling
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Old 01-26-2015, 11:46 AM #3
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Walk On - U2

Congratulations. That first step is the hardest - glad you're building momentum
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Old 01-26-2015, 12:10 PM #4
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Hello Survivor,

It is a LOT of work learning to walk again. So strange that the body can even forget. If PT is not helping you please be careful that your gait is not jacked up. It is easy to compensate and cause imbalance and problems. I know from experience. After my first injury and surgery (crutches 5 months) I had to re-learn in the pool. That was immensely helpful for allowing natural foot and joint motion without strain. I found I had to stretch regularly and still do to keep the myriad tendons and ligaments in the foot working. Eccentric exercises were also good once I had enough strength and could safely do them. The achilles/calf complex had really shortened. Listen to your body. Learning to walk again can cause various aches and pains that aren't even CRPS related. A good PT or trainer can help you figure out what causes over use and stress.

Keep up the fight!
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Old 01-26-2015, 11:07 PM #5
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Thanks everyone. Littlepaw, I am starting to work on my gait. It's been a very long and slow process. I am on the treadmill. I still can't put full weight down on my left leg. I am using a walker. Next Monday I will be getting the permanent SCS put in. The trial was great. I am hoping I'll be able to be full weight bearing. Some days I just want to scream about how long this is taking. I'm just feeling overwhelmed with all this right now...
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Old 01-27-2015, 04:12 PM #6
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Quote:
I still can't put full weight down on my left leg. I am using a walker. Next Monday I will be getting the permanent SCS put in. The trial was great. I am hoping I'll be able to be full weight bearing. Some days I just want to scream about how long this is taking. I'm just feeling overwhelmed with all this right now...
It DOES feel like forever, doesn't it? I shed a lot of tears in the last couple of years. It takes as long as it takes. Don't give into the desire to push to full weightbearing too quickly, especially if the SCS makes you feel great. So tempting - but you can really mess up your foot/ankle. Better to have good heel to toe motion with the support of the walker first. As you know it is easy to tear something that is not accustomed to being under full load. I hope you have a nearby pool! I transitioned to a cane for a while, using it on the good side to stabilize the weak - it helped a lot till I could ditch it. My PT also had me do core exercises because my abs and back were not keeping me stable enough (allowing me to "cheat" with a really messed up leg/hip motion) the "bird-dog" was especially helpful with the arm and opposite leg up.

Best of luck next week on the SCS! Hang in there and go scream in your closet if you have to - God knows I did.

Sending Healing Love - Littlepaw
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Old 01-29-2015, 02:02 PM #7
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Thanks. Unfortunately I do not have a pool near me. I know I can't jump into full weight bearing. I just got a knee brace for my left knee, so that will help some with the stabilizing. I go for pre-op tomorrow. I'm feeling torn. My mom just had neck surgery and she was having chest pains. So now I'm sitting in her room waiting for a doctor. She was supposed to come home today, but now we are unsure. Now I wish my surgery was later, because I don't want to leave her side. When it rains, it flipping pours...
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Old 01-29-2015, 04:36 PM #8
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I am glad you are being careful - difficult when the mind is ready but the body is not able. Sorry to hear about your Mom. I hope she is on the mend soon. It sounds like you have a lot of stress right now.

I am sending more healing love....
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Old 01-29-2015, 07:46 PM #9
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CRPSsurvivor,

Thanks for checking in on your journey. We're all on one of those in one way or another.

You are doing all the right things in my opinion. But slow and steady and keep managed expectations.

Getting back to your baseline will likely take some time. It sure did for me. I have CRPS in my right foot. I'd have to say that my physical therapist was instrumental in me knocking this thing back, albeit a somewhat altered gait.

Best of wishes to both you and your mother. My 91 year old mother is in a nursing home and just had a stroke last week (4th one). But she is coming back once again. The power of the human spirit is just unreal. I take my motivation from her.
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Old 01-30-2015, 10:27 AM #10
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Thanks littlepaw and birch lake. My mom went home last night. She hurting but doing ok. Monday she will see her new heart doctor. Monday is my surgery. I am now on my way up for pre-op. I hate this 2 1/2 hour trip. We are spend the night before up there to save time. Ikeep everyone updated...
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