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 02-23-2012, 10:00 AM #1
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Confused Rsd?

I was just told by a ortho surgeon yesterday. He suspected it and once he found out I had a metatarsal stress fracture he was sure of himself. He wants more xrays, scans and is starting me on physical therapy.

I am wondering if this diagnosis is true or maybe it could be something else. I wanted some opinions of those with RSD.

I injured my foot about 6 weeks ago. Missed a step coming down the attic ladder and caught the next one with my left foot. It hurt, but I walked it off for 3 weeks and when the pain didn't go away I went to the drs. First they told me I had metatarsalgia since there was no break on the xray and sent me home with naproxyn.

I had no improvement so I went back a week later and was diagnosed with a sprain, put on crutches and given a boot. Prior to this my foot looked somewhat normal. I only had a little swelling on the top of my foot. Once I was on the crutches the pain increase, my foot all the way up my calf was freezing cold to the touch and it was turning purple and red. I went to the ER for the cold and they ran a doppler for clots and said my circulation was fine.

I went back for my follow up the following week. When I took my boot off the dr looked puzzled and concerned. She had no idea what was going on. She sent me down to the ortho surgeon immediately. He mentioned RSD as a concern, but wanted me to go to the ER for further testing since he couldn't get me in for an appointment.

The ER took xrays and diagnosed me with a metatarsal stress fracture and put me in a cam boot and told me I was good to walk. They looked puzzled when I told them that it still hurt so they gave me back crutches.

That day the ortho surgeon called to check up on me and since the stress fracture was diagnosed he said he was sure I had RSD.

The only thing that doesn't point to RSD from what I've seen is that I'm not in severe pain. I do have pain, but it is tolerable. I have all the other ugly stuff, swelling, hot, cold. I also was already taking the highest dosage of Wellbutrin so I was wondering if that and the naproxyn maybe masking some of the pain?

Sorry this is so long winded, I'm just concerned/confused and was hoping I could get some insight.
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Old 02-23-2012, 01:38 PM #2
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Hi jennq, welcome to this forum. You should find that this is a great resource and place for incredible support. So sorry to hear what you are going through with your foot. If your dr is certain that you have RSD, then you guys really need to get working on a treatment plan for it so it doesn't progress. As I am sure you read, early treatment is key!

Your medication could be masking some of the pain. Pain would generally increase as time goes on and you go untreated. Everyone is different in the symptoms they have. For example, I do not have as much discoloring of the skin as others do, maybe it is because some of the treatments I have had - who knows. But I have had it for 20 years now in my face, I developed it in my right hand from a simple accident (twisted it moving a big gas grill) in 2009. Aside from my face, it is now in both hands, left arm, left leg...right leg is questionable.

Not sure if I helped at all, but hopefully others will chime in soon to assist!
Wishing you the best -
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Old 02-23-2012, 01:43 PM #3
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Thank you. I am cautious because he is a younger doctor, but maybe should be thankful that he may have caught it early.

He is starting me on PT and a high dose of vitamin C to see where that takes me. I'm finding this forum extremely helpful (a little scary too ) and plan to use it as a good reference. The more info the better.
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Old 02-23-2012, 01:54 PM #4
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What dose of Vit C? The studies used 1000mg a day at least, for RSD.
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Old 02-23-2012, 02:01 PM #5
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I'm not sure. He said he was calling in an rx for a "high" dose of vitamin C to start. I haven't picked it up yet. More info I didn't know until now. Thank you.
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Old 02-23-2012, 02:06 PM #6
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To be honest...it sounds like RSD to me. Mine started in my left ankle. Started as a sprain and the pain just kept getting worse and worse. I started out walking on it, then limping, then needed crutches, then a wheelchair. Immobilizing it is one of the worst things you can do and that's why it likely got so much worse after the boot (they put me in one of those for a while before RSD was diagnosed). The physical therapy is good...stop immobilizing the leg as much as possible. Don't use any ice.

You are still really early on in the process so treat this as aggressively as possible because catching it and treating it early is the best chance to have successful treatments and to go into remission.

I'm very sorry to hear what you are going through. Pain is a very subjective thing and I can tell you that early on the pain was not as severe as it was several months later. If the meds are helping at all...they could be masking the pain as was suggested above. They gave me vicodin in the beginning and it was totally useless for my pain...which was another indication that is was RSD.

I hope you get treatment and find relief ASAP.
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Old 02-23-2012, 02:16 PM #7
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Quote:
Originally Posted by catra121 View Post
Immobilizing it is one of the worst things you can do and that's why it likely got so much worse after the boot (they put me in one of those for a while before RSD was diagnosed). The physical therapy is good...stop immobilizing the leg as much as possible. Don't use any ice.

I never put ice on the injury, which worked out in my favor because I did read it could make it worse. ER doc said wear the boot 24hrs and the ortho surgeon can't see me for 2 weeks. I took off the boot last night while I was sitting on the couch because it was hurting me more than without it. Now that I you mentioned it I will try and do that a little more. I thought it gave me a little more relief in bed last night, but I woke up just as much.

I've been offered pain meds, but I have a long commute and can't take them. At this stage I'm ok with dealing with it. I am able to elevate it at my desk all day.

Another thing that I was wondering about it showers. I'm finding each day that I have to put the water cooler and my foot turns splotchy blue/purple and red. Almost leopard like. Is this another RSD thing?
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Old 02-23-2012, 02:21 PM #8
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One more question.... I'm going to pick your brains .

I was told that I could walk in my cam boot for the stress fracture as long as I don't feel pain.

Well, the pain apparently isn't going away and I've seen that the more I use my foot the better off I will be. Is this true? Because I will suck up a little pain now if it helps in the long run.
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Old 02-23-2012, 02:33 PM #9
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Cold or cool air/water can trigger RSD symptoms (for some people even warm or hot can do this too). I haven't been able to take a shower in years now because the impact of the water on my RSD areas is very painful. I have to take warm baths instead...which actually helps soothe the RSD pain as well. The splotchiness is definitely normal with RSD.

I know when I wore the boot I thought I was getting a little relief at the beginning...but it's short lived relief because you are not putting as much weight on it and it is protected from other things that can flare the pain (like cold, air movement, etc). It's worse for the RSD in the long run because immobilizing makes the pain worse and makes it harder to recover the function (definitely possible but very painful). RSD is a use it or lose it condition so I would suggest at the very least trying to move your foot back and forth/up and down, etc while you are sitting to keep that movement. You don't have to do this constantly...but as much as you can stand it just to keep you from falling into the vicious cylce where it hurts to move it, so you don't, and because you don't the pain gets worse making it even harder to move it.
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Old 02-25-2012, 05:21 PM #10
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Hi, Jenn. Sorry for what you are going through. It sounds like rsd to me too and I agree you should be thankful for a young doctor that caught it. Not alot of drs know about this yet. Mine started from a fracture in my right arm in 2008. To make a long story short, I didn't get relief until they completely numbed my arm with a nerve block and sent me to pt the same day. i also had my shoulder broken free......sideline..........Anywho, I think this helped to "reset" the nerves in my arm somehow. Don't know if this works commonly, but helped me after other nerve blocks, meds, etc. Good luck and pray all goes well for you. Hugs, Suz66
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