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 10-06-2015, 06:54 AM #1
Juliek72 Juliek72 is offline
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Default I've had enough

I have only been diagnosed with CRPS in my foot for about 2 months now. In the beginning the pins and needles, swelling and pain was bad. I had a nerve block and ketamine infusion last Tuesday. Since then the swelling has gone down a lot. But the pins and needles have turned into a pure burn as if I have a brush burn that won't heal. Also a knife pain that is going through my foot with throbbing pain. Everyday it seems something is worse than before. I start my auqua therapy today and see doc on Thursday. I'm trying to stay positive about everything but it's tough.

I am also having problems with my family understanding.

I just needed to vent. Thanks for listening and have a great day


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Old 10-06-2015, 08:02 AM #2
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Vent away....my two cents is accept the rough days with the good. The pain days drain us and we need to get through them any way we can.....venting helps....
Hope you are having a better day today.
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Old 10-06-2015, 08:35 AM #3
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Yes Julie,

You vent, do not keep it bottled up. Our Community is here to hear and offer support on the bad days as well as celebrating the good days.

As with a lot of issues, you will get periods of 2 steps forward, 1 step back, but you will make progress - especially with your new treatment regimen.

Hang in there!

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Old 10-06-2015, 08:52 AM #4
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Hi Julie,

Pain is exhausting and wrecks emotional havoc. Recovery often comes in tiny incremental stages, which is frustrating when you wanted to be better weeks ago. But you will make progress. 80% of people with CRPS improve over time. Please do come when you need support. That's why we're here. The simplicity of a kind word and knowing you are not alone has tremendous power. We are with you.

Aquatherapy is great and I hope it brings you the kind of progress you deserve. It did wonders for many of us and is often the best place to start. You will be able to do things in the pool that you can't do on land.

I am going to put my usual plug in here for getting nerve injuries checked out. I know, I know...I say it all the time. But it is the most important rule out and even Dr. Chopra says it needs evaluation. It can cause CRPS all on its own or mimic it. If you do not make progress, there is a peripheral nerve program at LSU. It is one of the few training places for these problems. So if you don't get anywhere maybe consider a consult with those guys. Most people won't need this but for those that do it is life changing.

I'd like to jump in too on mirror therapy which has mentioned recently by some members. I personally found it to be helpful. Functional MRI studies show changes in the brain's representation of the affected limb. Mirror therapy can help combat this. I felt for myself that it was just nice to give my brain a normal looking representation of my leg. There are many ways to accomplish the mirror therapy. I have a mirrored closet door in a bathroom so it was super easy.

I hope you feel better soon. And hang in there, it does get better!
Sending hugs and healing love,
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Last edited by Littlepaw; 10-06-2015 at 11:22 AM.
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Old 10-06-2015, 10:24 AM #5
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Hopefully you won't have a long journey with CRPS, but even if you do, you'll learn coping mechanisms, you'll find meds and procedures that help, you'll learn how to decrease your pain by adapting, etc.

I wouldn't wish this disorder on my worst enemy, but it is possible to find contentment and even happiness in your life.

And if you do go into remission, you learn not to take your health for ranted ever again. You'll know what family and friends you can count on, You'll realize that you're much stronger than you ever imagined, etc.
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Old 10-06-2015, 11:04 AM #6
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hi julie. i'm sorry you have rsd and understand your frustrations. it's not easy to live with and not easy to get people who don't have it to understand what you are going through. i just try to take things a day at a time and talk to people here on this forum. they are amazing people who truly care and understand. sometimes it helps for me to vent too. it's better then keeping it all in. and as time goes on you will learn how to deal with the constant rsd pain and the people who don't understand it. just remember take it one day at a time. soft hugs coming your way.
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Old 10-06-2015, 03:32 PM #7
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Thank you all so much and as much as I say computers and technology has ruined our youth. This kind of thing is an exception. Aqua therapy went well except for me swelling in the pool and the therapist was confused on that but I was able to move around more. This is starting to be my home away from home. God bless everyone. Talk to y'all soon


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Old 10-06-2015, 05:58 PM #8
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If you're experiencing swelling, I suggest you try applying Epsom Salt Lotion after swimming. Morton's seems to work better than Dr. Teal's. You can find it at Walgreen's, maybe Walmart, and if you have Amazon prime, it's available reasonably through that option.
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