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-   -   Is There Such A Thing As Mild CRPS? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/134539-mild-crps.html)

lefty 10-06-2010 01:21 PM

Is There Such A Thing As Mild CRPS?
 
Okay, I just came back from PM office for follow-up appt following my ganglion block in August. I was told prior to today that he had wrote in his report that I didn't have CRPS. Well today he said nothing about not having it but is saying that I have Mild CRPS...?

He perscribed a topical medication to use that is to come in the US mail. He then went on to say that in six weeks we will talk about doing another ganglion block if medication doesn't work.

The CRPS was seen by hand surgeon during injection for Carpal Tunnel, back in March. My injury date to left hand was Feb,2010. Surgery for ulnar bone shortning was July 2009. But I believe that I've had this condition prior to March.

Is there such a thing as mild CRPS? Can't find anything that comes close to it on the internet.
Thanks Lefty

RNcrps2 10-06-2010 02:40 PM

Lefty, Your situation sounds familiar. My Dr. denied i had CRPS until it was too late and was diagnosed by a pm Dr. with chronic CRPS. I would imagine your Dr means right now you have CRPS but the signs and symptoms are mild. I know at times my symptoms are worse than others but even so CRPS is acute (early on) or chronic (think its over a year). Early on the blocks help them determine whether it is sympathetic mediated pain. If you have good results, decrease in pain, than it shows you have sympathetic mediated pain. If done correctly and someone has little to no relief from a block they call it sympathetic independent pain. Sounds like the Dr.(which like many) denied you had CRPS than after your block you must have had some relief and now he is calling it mild CRPS. Not sure what the average wait is between blocks- i had them every 2 weeks for 4 blocks altogether. I know i was told some have sympathetic mediated pain but not all symptoms to classify as CRPS. When i looked it up i found crps and sympathetic mediated pain are synonomous. Anyone know?? There are topicals such as lidoderm patches that help with nerve pain. momof4

lefty 10-06-2010 05:26 PM

Quote:

Originally Posted by RNcrps2 (Post 702075)
Lefty, Your situation sounds familiar. My Dr. denied i had CRPS until it was too late and was diagnosed by a pm Dr. with chronic CRPS. I would imagine your Dr means right now you have CRPS but the signs and symptoms are mild. I know at times my symptoms are worse than others but even so CRPS is acute (early on) or chronic (think its over a year). Early on the blocks help them determine whether it is sympathetic mediated pain. If you have good results, decrease in pain, than it shows you have sympathetic mediated pain. If done correctly and someone has little to no relief from a block they call it sympathetic independent pain. Sounds like the Dr.(which like many) denied you had CRPS than after your block you must have had some relief and now he is calling it mild CRPS. Not sure what the average wait is between blocks- i had them every 2 weeks for 4 blocks altogether. I know i was told some have sympathetic mediated pain but not all symptoms to classify as CRPS. When i looked it up i found crps and sympathetic mediated pain are synonomous. Anyone know?? There are topicals such as lidoderm patches that help with nerve pain. momof4

Thanks for that information. I guess I'll what happens when this medication comes in the mail. I wish I didn't have to wait so long before getting another block! My first block in August. Going in my pain level that morning was at a 4, after the block in the recovery room it went down to a -3. The longest period of relief was for two days and my level of pain at that time was a 1. How I long for those two days. I just hope that he writes the mild CRPS in his report. The medication is a cream, and while I was waiting to be seen I heard him tell another patient about this cream. I can't remember what the name of it is but it starts with a (P). I wonder if this is something new on the market...I'd rather not be a test subject, but he kept telling me that I would like the way it's going to make me feel. I showed him how red my hand was (had a flare up in the office...it was pretty cold there) and he said it was normal for my condition. I just can't take this pain any more. I asked about Topomax, and he said first he wanted to see what this cream does.

Thanks again RNcrps.

bari.o 10-06-2010 10:00 PM

NSAID patches & cream
 
Lefty, I can't answer your questions about "Mild CRPS," but here's some info on the prescription cream that may have been prescribed for you. My PM doctor prescribed Lidocaine patches - brand name is Lidoderm 5% - and also a cream. Both are topical NSAIDS, non-steroidal anti-inflammatory drugs, like Advil. They've been used in Canada for a few yrs, but were just recently approved in the US. The advantage is that the medication goes directly to the inflamed areas, bypassing both the stomach & liver.

I've found the patches to be very helpful with pain relief, but like Advil or Tylenol, they haven't corrected the problem, they just offer respite. My PM doc suggested that with daily use the inflammation might permanently disappear. I won't hold my breath, but wouldn't that be nice?

As for the cream, I was to alternate it with the patches. It's called Voltaren Gel (diclofenac sodium topical gel 1%). I've ended up not using it for a few reasons.This cream is especially helpful for folks with arthritis.

Good luck to both of us!

Bari

Smoke_666 10-07-2010 12:43 AM

Hmm...maybe?
 
I think it's a matter of comparison. Some people have found that nothing helps with the pain. Meds help me live a fairly normal life. I would consider that a mild case. Sad as it is to say, I consider myself lucky that I only have it as bad as I do, and that I didn't get it when I was younger. So yeah, I think there is such a thing...but...without painkillers, it's still hell on earth, mild or not.

bari.o 10-07-2010 09:21 PM

How long?
 
Quote:

Originally Posted by Smoke_666 (Post 702209)
I think it's a matter of comparison. Some people have found that nothing helps with the pain. Meds help me live a fairly normal life. I would consider that a mild case. Sad as it is to say, I consider myself lucky that I only have it as bad as I do, and that I didn't get it when I was younger. So yeah, I think there is such a thing...but...without painkillers, it's still hell on earth, mild or not.

How long have you had it?

daniella 10-08-2010 04:26 AM

Hi. Could you ask the doctor who dx you with mild CRPS now where before he did not why and what changed? I think this condition can vary in terms of how severe and symptoms. This can also change along the way. How is your pain level now is it worse then before your first block? Can you call the office and tell them how much pain you are in? On a different side of mild I think a person can't compare pain feelings to others cause everyone tolerates pain to a different degree. A pain doctor I saw was saying how 2 people can have similar symptoms and dx but one person can feel the pain much more then the other. It is how ones brain processes it. Am I making any sense? I know what I want to say but it is hard to communicate. How familiar is your doctor with RSD? Can you go for another opinion? Sorry this is more ?'s then answers.

stressedout 10-08-2010 06:56 AM

When my Dr diagnosed me over a yr and a half ago he said I had "mild crps" too. There is nothing mild about my pain, just because I have been able to maintain function of my hand by doing therapy every day does not make it mild. I know it can be much worse...thats why I work it every day. I had a compound cream prescribed in the beginning, it helped but not enough for ins. to pay for it. He is seeing alot of physical changes and "progression" lately so now is recommending a pulse radiofrequency ablation. I had blocks last yr that gave me 10 days of relief, it was like a vacation. I had very little pain but the swelling and discoloration was still there. I'm just hoping it works...I'm tired of this.

lefty 10-08-2010 08:50 AM

Quote:

Originally Posted by bari.o (Post 702507)
How long have you had it?

They (deing the hand surgeon, and my private doctor) noticed it in March 2010, after Feb surgery on left hand.

lefty 10-08-2010 09:07 AM

Quote:

Originally Posted by daniella (Post 702580)
Hi. Could you ask the doctor who dx you with mild CRPS now where before he did not why and what changed? I think this condition can vary in terms of how severe and symptoms. This can also change along the way. How is your pain level now is it worse then before your first block? Can you call the office and tell them how much pain you are in? On a different side of mild I think a person can't compare pain feelings to others cause everyone tolerates pain to a different degree. A pain doctor I saw was saying how 2 people can have similar symptoms and dx but one person can feel the pain much more then the other. It is how ones brain processes it. Am I making any sense? I know what I want to say but it is hard to communicate. How familiar is your doctor with RSD? Can you go for another opinion? Sorry this is more ?'s then answers.

It was my workers comp pain doctor that did the block, and wrote in his report that I didn't have it. His report was relaid to me by my attorney. But when I went to see him he did said nothing about me not having it, only that it was a mild case of it. Why would he write on thing in his report and tell me something different. I had relief for a very short period of time after the block. Now it's back with a vengence! I showed him how red my hand was, and how it was starting to swell. He said it was a normal reaction to my condition. Stressful things like this really makes me flare up. I can't take this guessing game any longer. I don't know how many cases this Pain Doc has seem when it comes to CRPS, I don't really trust him. But I can't get a different doc because he is already my second workers comp pain doctor.
This condition was seen after they closed my case but before the could make me a settlement offer. So now the CRPS would reopen my case and they would have to start all over again. I hope that makes sense.

lefty 10-08-2010 09:18 AM

Quote:

Originally Posted by stressedout (Post 702593)
When my Dr diagnosed me over a yr and a half ago he said I had "mild crps" too. There is nothing mild about my pain, just because I have been able to maintain function of my hand by doing therapy every day does not make it mild. I know it can be much worse...thats why I work it every day. I had a compound cream prescribed in the beginning, it helped but not enough for ins. to pay for it. He is seeing alot of physical changes and "progression" lately so now is recommending a pulse radiofrequency ablation. I had blocks last yr that gave me 10 days of relief, it was like a vacation. I had very little pain but the swelling and discoloration was still there. I'm just hoping it works...I'm tired of this.

I really understand how you feel. I also do water therapy and keep my hand and arm moving. Before the block I wasn't able to complete a therapy session without stopping because of pain and my hand felt like it was locking up on me. After the block I was able to complete therapy but later in the day the pain would return just enough to remind me that (IT) wasn't done with me yet! I have carpal tunnel in that same left wrist, and cubital tunnel in both elbows that are also painful. I have plates and scews from the surgery that are very painful and can't come out because of the CRPS.

I am sick and tired of being sick and tired!!! At least you had more than one block and they are trying other invasive things to help you. I hope it works for you...good luck.

Smoke_666 10-09-2010 03:25 AM

Seven Years
 
Quote:

Originally Posted by bari.o (Post 702507)
How long have you had it?

Sprained my left leg pretty well in '03 and it started, then got dx'd in 2008. From everything I've looked at, the first year is the critical one. It's done some spreading and the level of pain has increased, but that's par for the course.

Cathy 10-10-2010 02:55 PM

Quote:

Originally Posted by lefty (Post 702620)
It was my workers comp pain doctor that did the block, and wrote in his report that I didn't have it. His report was relaid to me by my attorney. But when I went to see him he did said nothing about me not having it, only that it was a mild case of it. Why would he write on thing in his report and tell me something different. I had relief for a very short period of time after the block. Now it's back with a vengence! I showed him how red my hand was, and how it was starting to swell. He said it was a normal reaction to my condition. Stressful things like this really makes me flare up. I can't take this guessing game any longer. I don't know how many cases this Pain Doc has seem when it comes to CRPS, I don't really trust him. But I can't get a different doc because he is already my second workers comp pain doctor.
This condition was seen after they closed my case but before the could make me a settlement offer. So now the CRPS would reopen my case and they would have to start all over again. I hope that makes sense.

Hi lefty,
I think that if it's timely and you can open your case back up you should. I know w/c drs. and the entire situation of w/c is horrible, but you need to do what's best for you. When I had my blocks my PM did them and it all had to do with the temp in the hand after the shot. Also I had to go straight to the hand therapist from the hospital. Perhaps there was no change in the temperature of your hand after the first shot?

On another level, I would say that doctors in general, don't remember from one visit to the next what they said or didn't say, even though it's all on the computer!!! My primary doc has asked me on a number of occasions...'remind me again why I gave you this med?' And people wonder why you don't go and look for another doc. It's bad enough to have to start over each visit, but to have to start reviewing my whole life to someone totally new is ludicrous to me.

If your hand is looking and feeling worse, please stand up for yourself and make them listen, even if you take pictures of your hand day to day and bring them with you, I would do that. from everyone on this board and in my own case; we only have a certain amount of time before it cannot be reversed. Sending good vibes your way...cathy


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