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 12-10-2013, 10:45 PM #1
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Default CRPS is Spreading like Wildfire

My CRPS is spreading like wildfire. Like I posted before it started in neck within hours of cervical Radio-frequency ablation then to left shoulder, upper left arm and entire back especially where it was fractured. Early on it spread to hips, entire mouth and ankles but not hands feet or legs (go figure). Ortho told me no blocks, injections or flu shots. However, last week I got real sick with pleurisy and pneumonia. Dr. gave me a choice - hospital or solu-medrol (steroid) injection in buttocks. I chose the shot (wrong answer) within ten minutes I knew this was not the normal pain from the med shot. I could barely walk out of the office (should have taken wheelchair). But not wanting to blame everything on CRPS I assumed it was just the med in the muscle causing pain (DENIAL). It's been about two weeks now and it is CRPS spread-not only to buttocks but to right front thigh and my knee. I am in so much pain and when I try to walk my knee feels like it's going to pop out and the pain sucks my breath away. Weird thing is my right front thigh burns bad but when I touch it or try to rub it I can't feel it. It's numb outside and on fire inside. I knew better than to get the shot but I needed to breath. I don't post a lot cause I never know what to write but just needed to vent. Feel so stupid cause I knew better than to get the shot but since breathing isn't optional I didn't feel like I had a choice. Thx CC
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Old 12-11-2013, 12:21 AM #2
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Hi CC, I'm so sorry you're rsd is spreading. Maybe it will subside a little after a while. I've had spread, but some of it I've found is just temporary because it's just nerves firing off. Other parts of my body I know is really spread because the pain never goes away.
I hope you pain goes away or into remission.
My thoughts are with you. Take care my friend. From your friend, Renee.
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Old 12-11-2013, 03:44 AM #3
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I'm sorry CC, that's so unfair and must be freaking you out Mine seems to be spreading fast at the moment too, for no apparent reason at all, and you do feel like you are being taken over piece by piece... I had the 'why me's yesterday, it just felt so overwhelming.

Don't give up hope, ok? And don't blame yourself for making an impossible decision - hospital might not have been the right answer, and I don't think either was an easy choice. I'd have gone for the shot as well, if that's any comfort. Can us go and see your main doc and ask about some different treatment options, meds, pain relief or treatments? It's not right that you have so much pain.

I know I say this a lot but do some deep breathing exercises if you can, just to calm you down a bit. I use them a lot to get control of the panic or just that tightness from holding on to the pain. They do help.

Take care of yourself and get some help wherever you can. You deserve a break.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 12-11-2013, 11:45 AM #4
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Hi, what helped me when mine spread to my knees and basically disabled me was in the long run doing exercise. If you can do a couple of stretches a day and walk alittle bit outside or swim alittle, you'd be surprised. As soon as mine spread to my legs for the first time, immediately I did lots of strenuous exercise, almost protesting the pain. Worked in 4 days. Still have in original spot for 9 months but at least I stopped a spread. Good luck.
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Old 12-15-2013, 11:53 PM #5
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Don't blame yourself . If you went into hospital you would have had even more procedures done, IVs ,etc that could've been .worse. Use the energy that is put into second guessing yourself and channel that energy into healing and being as active as you can reasonably tolerate. Don't stop moving!
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1999 Chronic spine pain related to Degenerative Disc
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Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
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Woke up in recovery room with RSD Monster.:
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Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 12-16-2013, 05:12 PM #6
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Default Thank you

Thank you to all who took the time to post and for all your caring words. I apologize for not being as active on the boards as I had wanted. I'm on a lot of meds and many times cannot get my thoughts together however please know that I keep you in my thoughts and prayers. I've never met such a caring group of people and because of you all I never feel alone. As RSD/CRPS entered my life my friends just drifted away.

On another note so far the new spread is still here. It's ok as I really expected it to happen sooner. I've accepted it along with the rest of everything and just know that if I do something like walking - that the next day I'm in bed recovering. Once again thank you all for your caring thoughts. CC
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Old 12-16-2013, 05:44 PM #7
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You are very very welcome, take care of yourself and keep in touch when you can. We won't take offence if you are a patchy poster

Friends melting away is a very familiar story to me and a lot of us I think. Amazing isn't it, just when you need them most as well... You are so right, the folk here are amazing, I'm grateful for this site everyday.

Bram
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 12-16-2013, 11:34 PM #8
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Originally Posted by Brambledog View Post
You are very very welcome, take care of yourself and keep in touch when you can. We won't take offence if you are a patchy poster

Friends melting away is a very familiar story to me and a lot of us I think. Amazing isn't it, just when you need them most as well... You are so right, the folk here are amazing, I'm grateful for this site everyday.

Bram
So true...This site is wonderful.I know we all need each another..We all can vent,and for once ,,we really have people that understand us.I feel really bad about it spreading..It seams like a lot of that lately..Just a thought for some of us...I wonder if its because of a stressful time of year..Just a thought..I know each one of us are wired different,but hey you never know..hopefully after the holidays things will look better..Again sorry for your pain..
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