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 12-31-2013, 01:03 PM #11
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Quote:
Originally Posted by fbodgrl View Post
I get the stuck cramped down fingers in the RSD hand. It is horrifically painful and worse forcing them back out. They stayed in a tucked, non straight position naturally since my 2nd surgery. My spasms are generally in the upper arm bicep area. They come and go. I take flexeril at night and Valium in the day to try and keep things loose.
fbodgrl, I am so sorry hon that you have this so severe. How frustrating. I wish, oh how I wish, they would come up with something that really, really works!! Like cures it. Not just band aides. Good for you that you keep trying. I believe this is all that we can really do.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 12-31-2013, 01:12 PM #12
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Originally Posted by Lottie View Post
Vrae, our stories are similar. Woke up in recovery room convinced I had a shattered ankle!! I do get severe cramps in my toes, foot and calf, what my dad used to call a "charlie horse". Standing and walking , though very painful, usually resolves that. I also get visible muscle twitches that make me crazy. Feels like hot popcorn popping inside my leg. My husband puts his hand on the muscle and puts firm steady pressure on it. I also use heating pad and warm epsom salt bath. I don't do well with Valium, it makes me too weepy . ~Lottie
OH MY GOD YES Lottie, shattered ankle would be EXACTLY how it felt on the recovery table of my discectomy. Went in for a 3 day surgery and was there for a week with a whole new me that I couldn't even believe was happening. I literally woke yelling in PAIN!! And I wasn't talking about my back. It took a couple of years for that feeling to dissipate but has always felt not right, or totally healed. Like it's stiff. And can get very involved in one of these spasms. The sad part is that I have been regressing for a couple of years now in that area. I have had recent feelings like I'm regressing back to the days of it feeling shattered. That too freaks me out. <sigh> It's just all so awesome!

Anyway, hope you're having a good day hon!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 12-31-2013, 01:15 PM #13
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Originally Posted by catra121 View Post
The ultrasound is actually a device. You put conductive gel on the area (I always make sure mine is in a place where it won't get cold) and then you run the device over the area (constantly moving so you don't burn yourself). It's a deeper sort of heat...I don't even really feel like the area gets hot...but it does help. I've found that generally using the ultrasound extends the amount of relief and length of time I get relief after the hot bath with Epsom salts. It especially helpful for me with the spasms.

They used a similar device (bigger...mine is a portable version) when I did outpatient physical therapy and I found that when they did it at the beginning of the sessions that things were easier for me than without it. The routine of ultrasound at the beginning and stim with heat at the end actually did a great job at reducing my pain levels...more than any meds ever did.
Oh wow! okay... I will definitely check this out! Thanks Catra!!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 12-31-2013, 01:28 PM #14
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Hello,did you get my message about your stomache issue,I sent you yesterday ,I have full body rsd stage 3,I have major issues with. Stomache.thers a drug my syke gave me it's an anti depression with some kind of stomache factor in it.you should go on this drug"Remeron"it will stop all the pain ,cramps ,nausea.i tried everything befor this,nexium ,gull bladder removed,gull stones removed.this changed my life,from being bed Reddin in agony with stomache issues.okus all the other problems my rsd gives me.goid luck and let me know how you make out
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Old 12-31-2013, 05:51 PM #15
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I have been very fortunate to find a wonderful massage therapist. I originally met her when she was working as a physical therapy aide at the office I went to for physical therapy and she was in massage school while working as an aide. Now, she is practicing full time and she is is terrific! She is in remission from multiple sclerosis and understands some of the "wierd" nerve symptoms that I get. If you do not find the right person initially, keep looking, ask for references, don't settle for poor treatment. It can be expensive, so I tend to go when my spasms are worst, usually in the winter months.
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 01-07-2014, 07:07 AM #16
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Hi Vrae. I have Dystonia, which is connected to my CRPS Type II. It involves severe spasticity, cramping, contracture, etc. I have a baclofen pump and I take tizanidine too. My muscles have a life of their own. At one point both of my feet were in permanent contracture with my toes curled under and my left foot rolled under where I walked on the outside of my foot. I had surgery to correct both feet. The spasticity, though, is in both legs, arms, neck, chin throat. Sometimes my left leg flies around on its own beyond my control. I have had instances where my hands and arms curl up too. The spasms in my chin throat tongue are very frightening. The whole Dystonia/spasticity thing is crazy odd and scary. Epsom salt soaks, magnesium, baclofen pump and oral, tizanidine are all part of my regimen. I hope you find relief soon.
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- CRPS Type II with migraine, Dystonia and spasticity
- Diagnosis 2010 following
- Injury 2004 L5S1; 2nd metatarsal left foot fracture; left hip fracture
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