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 12-03-2013, 05:56 AM #1
_dreamer_ _dreamer_ is offline
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Default New here--intro, and a few questions

Hello. I was in a car accident more than 10 years ago. I've had back pain ever since, and I've had MRI's that show bulges, and I had an EMG that showed some damage, but in addition to my back/neck pain, the bottoms of my feet burn like...well, like I can't even describe it. So my doctor wants me to see a dr. at Drexel to see if I have RSD. I've been living with pain for years, and it's the severe burning that kills me. I have no skin changes, except for changes in color--my feet turn bright red when they're bad, but usually only when I'm laying down.

Anyway, my dr. mentioned getting ketamine or lidocaine infusions. I was curious if they still give you your pain medication while you're in the hospital getting the 5 day ketamine infusion. I read about it, and the whole process scared me, but I'm definitely jumping the gun here, b/c I don't even know if I have it.

How do they diagnose RSD? Does anyone know? I haven't had any MRI's, EMG's, CT Scans, etc. for about 10 years. Would the doctor test me again for everything?

My physical therapists does think that I probably do have RSD, but we'll see I guess. It would be nice to know why I have such bad pain, but...I'll be honest, it's not a diagnosis I want, if that makes sense. It's so hard to walk on my feet when they're bad, and they've been terrible for about 3 months now. Pain seems to go up and down, but then I get into a flare for months or even years with my feet, but then I'll have a bit of time where they're a little bit better and I can deal.


Thank you to anyone to answers.
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Old 12-03-2013, 07:57 AM #2
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Hi dreamer and welcome...

Sorry you're here at all obviously, it sounds like you've had a long hard journey already, and we all know how exhausting even a week of this is.

It does sound pretty like CRPS, with the burning pain and the bright red feet (I have it in my feet, and that sounds very familiar!), but obviously I'm not a doc and only an expert can diagnose you.

CRPS is diagnosed by a set of criteria you can find on a good CRPS/RSD website (maybe google 'CRPS criteria'). Basically you have to have some of the following symptoms recognised by a doc:
- pain that is out of proportion for any initial injury, etc.
- changes in skin colour - (blue and mottled, bright red)
- changes in temperature (affected area significantly hotter or colder than the rest)
- hyper-sensitive skin
- skin changes (thin, shiny, scaly, wounds not healing well, etc)
- hair and nail changes
- swelling
Most importantly, the symptoms will not be able to be explained by any other condition or cause. If a doc familiar with CRPS recognises some of these symptoms, and can't see another cause of them, he'll probably diagnose it.

If you are diagnosed it's important to get some pain relief, physio and support. Ask to see a pain specialist, and find a physio who understands the condition - its important not to overdo exercises to the point where you can make things worse, but movement and activity are hugely important - if you don't keep moving, the CRPS can just get worse.

Until you are sure, it's best to work on the assumption that you might have it, so stay well away from ice, or any extremes of temperature on the affected area. Try using unperfumed Epsom salts - a few tablespoons in a warm bath (or wrapped in a damp cloth and placed on the burning) can be very soothing. Try to keep stress to a minimum (easier said than done!) and work on some breathing exercises and relaxation techniques - they really do help, I was sceptical but they do!

Take care of yourself, and I hope you have a better day tomorrow.

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 12-03-2013, 08:13 AM #3
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I too am very sorry to hear of your struggles. I was fortunate to have been steered to a very good and experienced neorologist in dealing with RSD after my accident.
She diagnosed my RSD using EKG along with a nerve contraction test.

I wish you best of luck....
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Old 12-03-2013, 08:26 AM #4
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For a diagnosis you need thre of the four main symptoms here.

http://www.rsdhope.org/crps-symptoms.html
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Old 12-03-2013, 11:41 AM #5
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THey look at your symptoms to see if it fits. The second I told my doctor that I had an accident with my feet and my feet feel like their on fire he said it's probably RSD. I went to 3 other doctors to confirm it and they all came with that conclusion.

Pain is the other symptom that I have but there are many others. There's no test to do that can show that you have it. You've had enough tests you don't want another i'm assuming.

I had 3 nerve blocks that didn't work but EVERYONE is different. I didn't educate myself about RSD which I should have done before doing any other the things I did. I would research whatever it is that they want you to do.

Good luck to you!!!
Heather
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RSD since 8/2005
Originally in left and right foot
Spread in 2006 and Jan 2014
Both legs, arms.
Chronic pain going back to 1992

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Old 12-04-2013, 06:07 AM #6
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Thank you all so much for the helpful information. This is a great website. I'm going to do some more reading. I appreciate the time you took to respond.

Oh...one more question. So when my feet are really bad, is it worse for me to force myself to walk? I mean, I work, so I really don't have a choice. Will that make this get worse if it is RSD?
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Old 12-04-2013, 06:16 AM #7
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One more thing...I was also (a few years ago) diagnosed with Reynaud's disease in my feet.
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Old 12-04-2013, 02:26 PM #8
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I don't know about reynauds disease (other than that it's sometimes associated with or confused for CRPS), but for CRPS its definitely a 'use it or lose it' approach... Keep walking as much as you are able to without making your pain too bad - a small increase in pain is understandable, but a big jump is bad news. It's that old chestnut of 'pacing'.

Just had to get mine elevated with socks off Bright red and hot. You could fry an egg or two on the darn things. Oh well.

Bram.
__________________
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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