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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 11-03-2012, 05:40 PM   #1
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New member/RSD/spreading to my face :(

Hi everyone. So this is my first post. I want to say that I'm happy I can have other people to talk to that know what I am feeling!!! Thank you!!!! I have had RSD for 9 years... 8 of those years it was only in my left leg from knee to ankle.. It spread around my ankle and the right side of my foot and now it's spreading like wild fire. It's in my right arm hand and shoulder area and now the heat is going up my neck. Does anyone have RSD in the face? My ear and right eye feel like I'm being stabbed with that damn hot knife. What will happen to my face?? I can cover how ugly my leg is...but my face? Will it get blotchy and red and blue and purple and swell up etc...????? Please help. Does anyone else have this in their face??

Last edited by Sissymom14; 11-03-2012 at 05:41 PM.

 
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Old 11-10-2012, 12:09 PM   #2
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Re: New member/RSD/ spreading to my face :(

I have had RSD for one year and 8 months. It started in my right arm and then spread to the right leg and foot and my right face. It soon spread to the left arm,leg and foot and my left side of my face.
It doesn't show at all. I don't think you have to worry about anything bad happening. Just the pain seems to spread.

 
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Old 11-10-2012, 01:30 PM   #3
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Re: New member/RSD/ spreading to my face :(

Has the rsd in your face effected your hearing at all?

 
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Old 11-12-2012, 05:22 PM   #4
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Re: New member/RSD/ spreading to my face :(

Quote:
Originally Posted by Sissymom14 View Post
Hi everyone. So this is my first post. I want to say that I'm happy I can have other people to talk to that know what I am feeling!!! Thank you!!!! I have had RSD for 9 years... 8 of those years it was only in my left leg from knee to ankle.. It spread around my ankle and the right side of my foot and now it's spreading like wild fire. It's in my right arm hand and shoulder area and now the heat is going up my neck. Does anyone have RSD in the face? My ear and right eye feel like I'm being stabbed with that damn hot knife. What will happen to my face?? I can cover how ugly my leg is...but my face? Will it get blotchy and red and blue and purple and swell up etc...????? Please help. Does anyone else have this in their face??
hi, i am new to the site. i just posted about my ear.. have had constant pain that wont let go in right ear.. have you had any test done on your face or our you going by just how the rest of your body hurts too. my right hand just gets blotchy looking and big toe is dark color... but my ear...

 
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Old 11-12-2012, 05:25 PM   #5
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Re: New member/RSD/ spreading to my face :(

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Originally Posted by gillmor1 View Post
hi, i am new to the site. i just posted about my ear.. have had constant pain that wont let go in right ear.. have you had any test done on your face or our you going by just how the rest of your body hurts too. my right hand just gets blotchy looking and big toe is dark color... but my ear...
do you have ringing. my have started to ring but then stops... what does that mean..

 
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Old 11-12-2012, 06:29 PM   #6
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Angry Re: New member/RSD/spreading to my face :(

Hey. No tests just going by what the rest of my body feels like. I don't have any ringing but I have sharp knife stabbing like I have in my leg (my leg is where it all started and its the worst there) it's weird where it hurts too. Like far behind my ear and same with right eye it's like deep in my lower eyelid area. This sucks I do consider myself I guess fortunate in a way being jr took 8 years before starting to spread opposed to your year and a half but I just hate this so dang much bin starting to loose my mind!!!

 
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Old 11-13-2012, 06:33 AM   #7
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Re: New member/RSD/spreading to my face :(

I been staying in bed. i been putting heat on it. i go to ear specialist in two weeks. cause i am concerned about my eardrum. i have read where it can turn it grey and black. so i figure by going to specialist he can tell me what he sees. how has your vision been. mine has been getting worse. i also have hard time walking straight. one doctor was concerned about MS. i just didnt want to hear it.. i have enough going on. i used to be so active and a true athlete when younger, when this hit. and all meds. i gained so much weight with this. i have stopped alot of different meds just cause of weight gain. every med effects people different.

 
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Old 12-10-2012, 06:06 AM   #8
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Re: New member/RSD/spreading to my face :(

Quote:
Originally Posted by gillmor1 View Post
I been staying in bed. i been putting heat on it. i go to ear specialist in two weeks. cause i am concerned about my eardrum. i have read where it can turn it grey and black. so i figure by going to specialist he can tell me what he sees. how has your vision been. mine has been getting worse. i also have hard time walking straight. one doctor was concerned about MS. i just didnt want to hear it.. i have enough going on. i used to be so active and a true athlete when younger, when this hit. and all meds. i gained so much weight with this. i have stopped alot of different meds just cause of weight gain. every med effects people different.
I don't want to tell you not to fear an MS diagnosis but AT LEAST if it were MS, that disease is better understood and commands more respect in the medical community than CRPS, so I imagine the trajectory of your treatment would take shape in a way that is currently impossible with a CRPS diagnosis.

If it gives you some peace of mind, I have had multiple brain and spine scans to rule out MS. I have definitive established CRPS and I have ear ringing, significantly worse hearing than I used to, and vision problems mainly in that my right eye is always exhausted and doesn't want to do its job and I am incredibly sensitive to light.
Since CRPS messes with our nervous system, it is very possible to have these odd symptoms that have nothing to do with our original pain sites.

There are, as you likely have read or been told, many types of spread and I myself have experienced a variety of them. I bring this up because there is a chance that you can arrest the symptoms in your face- and the sooner you address it aggressively, the better your chances.

I have had burning and "gunshots" spread throughout my entire body and some has stayed and some have dissipated and only return when I am in a severe flare.

Do you have a doctor who really understands CRPS and is willing to prescribe you whatever you need to make your life better?

If I start a flare in a new area, I have either a sympathetic block, trigger point injections, IV or oral medication adjustments, and specialist evaluation of new pain areas to determine if I am dealing with a new injury, spread, or deferred pain.

The ear ringing and vision problems are worse when my pain is worse or when I tired. Unlike my joints which are permanently damaged, my ears and eyes and even my burning face, are generally just psyche's way of warning me I am having a severe flare and need to see my CRPS managing physicians as well as take a serious break (which isn't hard to do when you can't see, hear, or move on your own

If you are interested in for excellent medical care, I m

would be happy up share my medical team's info.

Don't be afraid to find out if something else (like MS or MSA) is going on. It is hard to treat a disease if you don't know for sure what it is.

It isn't like CRPS is any walk in the park, either.

After hitting rock bottom I decided if I can't get rid of this disease, I can at least figure out a way to live my life as fully as possible while rolling with the punches. If I have the ability to get out of bed on the morning, I do so with a grin on my face- but if I can't get up, I just accept the opportunity to write, read, or catch up on a favorite show, depending on my eyes and ears.

I really hope that your new face pain goes away. It sounds like you need a nerve medication bumped up, but of course that is what the doc is for.

Just out of curiosity, as it relates to spread, are you on a form of opiate?

Lots and lots of luck, love, and holiday cheer headed your way.
Keep is updated if you are feeling well enough.

 
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