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 06-26-2015, 09:47 AM #1
whiteaa whiteaa is offline
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I'm sorry this happened to you. I have CRPS in my knees too and it was SO frustrating to not be able to walk. I hope they gave you crutches or some other assistive device for the time being. Sounds also like your doctors may not be the most expert at caring for CRPS. Neither were mine. Here's what I found out that I wish my doctors had told me at the beginning:

DO NOT ICE. On some level my intuition always knew this but I ignored it to listen to my doctors telling me to ice. That was a mistake and made me feel worse.
Move it around in the ways that you can. I know moving is probably scary right now, and kinesphobia (being scared of movement) is really common with this. Unfortunately, the only thing that hurts more than moving is not moving. Like littlepaw said, the pool is a really super helpful way to work out stiffness. The first time I did the pool I just held the wall and took the world's slowest steps in the water for about 30 minutes. It was amazing how much my limp reduced after I did.
I personally have found that kinesiology tape has significantly reduced my pain, swelling, and stiffness. There isn't research on this yet, but anecdotally from myself and a few others it seems to work.
ASK FOR HELP. This was really hard for me at the beginning, but I've found it's a brave thing to do. Let others help you with tasks and ease your stress.
Reduce your stress where you can. I personally sniff lavender and watch movies. Do what works for you!
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Old 06-26-2015, 10:55 AM #2
tlaymon tlaymon is offline
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Thank you so much for your response, whiteaa.. How are you doing with walking and range of motion? It's crazy how you mentioned the ice.. Before I was diagnosed, the last few times I went to therapy, I noticed when they tried icing my knee, I couldn't stand the cold! I had to take it off, it was so sensitive.. I will definitely try swimming! I'm hoping for some answers at my next appt.. It's frustrating that he wants to take the "wait and see" approach.. I can't imagine going 6 more months like this.. I'm trying to stay positive.. I know things could always be worse.. I find it strange that he gave me very little info about RSD.. I pretty much had to research it myself.. Red flag, maybe??
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Old 06-26-2015, 12:41 PM #3
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90 day global means that your insurance paid a flat rate for your surgery and follow up appointments for the 90 days since your procedure. All care at your surgeon should be covered during that period. Perhaps others in the same specialty can't get paid during that time? I am not sure.

definitely try getting in the pool. It will be easier than walking and will get you some much needed gentle movement for that limb.

This is absolutely a big deal. It is hard for others to understand and they are often frustrated, scared and potentially not coping great either. Don't feel like a woosie. Surgery of any kind without complications is stressful and anxiety producing. Why the heck wouldn't you be having a hard time? Having your mobility taken even temporarily is enough to put most people into overdrive. It is hard in the beginning. Be kind to yourself, knowing that you are doing the best you can right now.

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"Thanks for this!" says:
tlaymon (06-26-2015), visioniosiv (06-27-2015)
Old 06-26-2015, 01:46 PM #4
whiteaa whiteaa is offline
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Quote:
Originally Posted by tlaymon View Post
Thank you so much for your response, whiteaa.. How are you doing with walking and range of motion? It's crazy how you mentioned the ice.. Before I was diagnosed, the last few times I went to therapy, I noticed when they tried icing my knee, I couldn't stand the cold! I had to take it off, it was so sensitive.. I will definitely try swimming! I'm hoping for some answers at my next appt.. It's frustrating that he wants to take the "wait and see" approach.. I can't imagine going 6 more months like this.. I'm trying to stay positive.. I know things could always be worse.. I find it strange that he gave me very little info about RSD.. I pretty much had to research it myself.. Red flag, maybe??
With a combination of no ice, prescription NSAIDs, KT tape, pool, and physical therapy, I am proud to say that I have regained my range of motion and ability to walk without a limp (I can even do stairs now!!!). There are still some things I can't do, like grocery shopping, kneeling of any kind, lunging or squatting, but it helps to focus on the gains instead.

Wait and see does not sound like a good plan to me. CRPS is aggressive and I think it is important for us to be aggressive back to avoid spread and worsening of symptoms. Part of the problem with doctors treating this condition I think is that it's so rare and every scientific study I have read on it pretty much concludes with "meh...idk maybe". I think you doing research is a great thing and you should keep doing that and advocating for yourself. As much as our culture treats them like it, doctors are not magical all-knowing wizards. If you disagree with the treatment, let them know and tell them what you think is appropriate. And your body is wise! Listen to it!
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Old 06-26-2015, 08:33 PM #5
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Default Have you tried DMSO?

When my feet were burning hot I used ice and continued to use ice, because it supposedly would help with the pain and swelling. I think I did some serious damage to my limbs.

I wish I had known about DMSO at the beginning of my CRPS journey, unfortunately by the time I purchased it my CRPS had turned cold and DMSO is not usually effective for cold CRPS. If yours hasn't turned cold, you might want to research it.

I found relief from swelling using a Bowen Therapy technique I found on YouTube. It sounds crazy, but it worked for me. Basically, I wrapped special washing crystals in a cotton cloth and tied the cloth to the swollen area for about 8 hours. My husband could not believe it when I showed him the wet cloths. Using this technique I no longer needed ice to relieve swelling.

Quote:
Originally Posted by tlaymon View Post
Thank you so much for your response, whiteaa.. How are you doing with walking and range of motion? It's crazy how you mentioned the ice.. Before I was diagnosed, the last few times I went to therapy, I noticed when they tried icing my knee, I couldn't stand the cold! I had to take it off, it was so sensitive.. I will definitely try swimming! I'm hoping for some answers at my next appt.. It's frustrating that he wants to take the "wait and see" approach.. I can't imagine going 6 more months like this.. I'm trying to stay positive.. I know things could always be worse.. I find it strange that he gave me very little info about RSD.. I pretty much had to research it myself.. Red flag, maybe??
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