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 08-17-2010, 10:35 PM #1
Dubious Dubious is offline
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Default CRPS/RSD II Suffers - a little help here!

Alright, I have a question for the few of you, or all of you for that matter, out there whose CRPS/RSD was started from a nerve injury.

Mine of course, was as a result of a surgery and resultant nerve damage. I had an area of skin that was originally numb, seem to over the last 2 1/2 years get some but no where near all feeling back, but now in the last 1-2 months increasingly is burning, much like the recurrant burning pain in my hand that has been there since right after the surgery.

Does anyone have any insight on this??? What does it mean....where does it go???
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Old 08-18-2010, 12:57 AM #2
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At least yoou have come to the right place to ask questions....everyone has different symptoms at different times. My RSD came from a bout with an internal MRSA infection. I was diagnosed after no one could tell me why my leg that had the infection would not stop burning and tingling. I still had the pain from the infection even though it was completely gone..after about 5 different neurologists and a year later they finally diagnosed me...then came the year of MANY experiments of drugs and complete and utter chaos...the "cocktail" is not completely right, but for right now it helps. I am going into my 3rd year and the RSD is spreading...I can always tell when it is beginning to go somewhere else in my body because I have the tingling and burning, so from my experience it may be spreading in your body also....I hope this helps a little
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Old 08-18-2010, 09:21 AM #3
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Hi Dubious,

It may not be the RSD spreading. Instead it may be that the nerves have regrown (although admittedly nerves regenerate quite fast so this may not be the case). As nerves grow back they are generally sensitive and painful. Similar to patients who have first degree burns and lose their nerve endings they can be in severe pain as the nerves regenerate. If this is the case (and even if it is RSD then desensitisation and trying to use that area as much as possible is important.

I'm not sure if this is any help but it may mean it's not RSD spreading.
and hope it calms down soon.

Rosie xxxx
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Old 08-18-2010, 10:25 AM #4
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I have gotten a great relief from burning pain with Lidoderm and Flector patches. For areas where I can't stick a patch (like in my hair on the back of my head) I use Voltaren gel. There is also a stronger version of the Voltaren gel (I forget what it's called) that comes in liquid form, but I don't like it because it runs all over the place when I try to apply it.

The patches can be cut up and used a piece at a time. Lidoderm patches are only supposed to be used for 12 hours on and then 12 hours off, max 3 at a time.

Good luck, Sandy

Quote:
Originally Posted by Dubious View Post
Alright, I have a question for the few of you, or all of you for that matter, out there whose CRPS/RSD was started from a nerve injury.

Mine of course, was as a result of a surgery and resultant nerve damage. I had an area of skin that was originally numb, seem to over the last 2 1/2 years get some but no where near all feeling back, but now in the last 1-2 months increasingly is burning, much like the recurrant burning pain in my hand that has been there since right after the surgery.

Does anyone have any insight on this??? What does it mean....where does it go???
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Old 08-18-2010, 04:44 PM #5
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Quote:
Originally Posted by cindi1965 View Post
At least yoou have come to the right place to ask questions....everyone has different symptoms at different times. My RSD came from a bout with an internal MRSA infection. I was diagnosed after no one could tell me why my leg that had the infection would not stop burning and tingling. I still had the pain from the infection even though it was completely gone..after about 5 different neurologists and a year later they finally diagnosed me...then came the year of MANY experiments of drugs and complete and utter chaos...the "cocktail" is not completely right, but for right now it helps. I am going into my 3rd year and the RSD is spreading...I can always tell when it is beginning to go somewhere else in my body because I have the tingling and burning, so from my experience it may be spreading in your body also....I hope this helps a little
I have RSd for 1 1/2 years, started in my finger after sprain, treated first time with physical therapy (lots at home, all day) and DMSO, it started in my left foot about 4 months ago and symptoms have began in right foot. went to DR, he prescribed Lyrica (hard to take during the day). Dr should have to try it before prescribing it. Ive started back on DMSO 70% in roll on applicator and have already bagan to see change in pain level. Try this. It works and only side effect is bad taste in your mouth for alittle while. Its pretty inexpensive and can be bought at any health food store. Google research, there is quite a bit. Hope this helps someone.
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Old 08-18-2010, 04:44 PM #6
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Quote:
Originally Posted by Dubious View Post
Alright, I have a question for the few of you, or all of you for that matter, out there whose CRPS/RSD was started from a nerve injury.

Mine of course, was as a result of a surgery and resultant nerve damage. I had an area of skin that was originally numb, seem to over the last 2 1/2 years get some but no where near all feeling back, but now in the last 1-2 months increasingly is burning, much like the recurrant burning pain in my hand that has been there since right after the surgery.

Does anyone have any insight on this??? What does it mean....where does it go???
If I am understanding you correctly the nerve damage you are talking about is the common type that happens from any surgery that you get from around the incision area. Some people can take several months others can take much longer if this is the nerve damage you are talking about. Also it depends where what part of the body you had your surgery. Some areas have many more nerve ending that have been cut so these area like hands, feet take longer to heal due to the amount of nerves.

If you are talking about a major nerve no 2 people heal at the same rate. A major nerve may or may not heal. Nerves are very difficult to predict how they will heal. I have been fighting a major or at lease to me a major nerve problem for almost 4 years. My Drs. can't tell me if or when it is a wait and see after having a few surgery's to try to fix. Each week the pain is getting worst and covering more area of my arm.

Good luck with your nerve problem.

Dennis
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Old 08-19-2010, 04:51 AM #7
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Quote:
Originally Posted by hurting View Post
If I am understanding you correctly the nerve damage you are talking about is the common type that happens from any surgery that you get from around the incision area. Some people can take several months others can take much longer if this is the nerve damage you are talking about. Also it depends where what part of the body you had your surgery. Some areas have many more nerve ending that have been cut so these area like hands, feet take longer to heal due to the amount of nerves.

If you are talking about a major nerve no 2 people heal at the same rate. A major nerve may or may not heal. Nerves are very difficult to predict how they will heal. I have been fighting a major or at lease to me a major nerve problem for almost 4 years. My Drs. can't tell me if or when it is a wait and see after having a few surgery's to try to fix. Each week the pain is getting worst and covering more area of my arm.

Good luck with your nerve problem.

Dennis
Hi Dennis,

I have CRPS 2 not from a surgery it was from an accident and all the nerves that got damaged due to broken bones that could not be repaired and titanium had to be inserted and bone taken out. But as I was told the night of the accident in the ER that the bones that broke where going to rip up my nerves and I would suffer the rest of my life, they wanted to do a surgery that night and I was afraid because I was in a rural area and the hospital looked like a post office. That was a big mistake, I often wonder if I would of let them do that surgery just to remove the bone chips if I would of got RSD and be in the position I'am in today. I only explain this because that was the beginning of the RSD. After several surgeries, RSD procedures and PT most of the pain is controllable and I don't take much pain medication I have really cut back. But the one pain that never goes away and here is what might me happening with you. In the area where I have the most nerve damage and when it gets very humid as it has been this summer the pain becomes intolerable. So for me it's the humidity that just makes it worse, my arm swells from the heat and then it just starts and never stops.
I do use ice which I know everyone says no ice but it helps me when it really swells. Hope you feel better..

Gabbycakes
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Old 08-19-2010, 07:33 AM #8
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Hi Dubious,
I had a compressed nerve which caused those symptoms and more. Had surgery and was told it takes 1month to heal 1" of nerve so mine if it worked(I was told that compression release does not always work) would take 7-8months to heal. After surgery i had feelings of bugs crawling under my skin but the burning had backed off. At 6months PT started resistance exercises & my arm began all over again-burn, ache, turn color and temp, sensative to touch and cold and if it is too humid outside. It was then that they realized i also had RSD before surgery-but i would still have done the surgery to try and relieve the nerve. My pain Dr. said unfortunately it is vicious cycle- the nerve damage will continuously irritate the RSD-he was right because now i have full body CRPS.
Sorry to hear of your injury. It sounds to me like your nerve or the RSD is acting up. momof4
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Old 08-23-2010, 10:15 PM #9
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Quote:
Originally Posted by RNcrps2 View Post
Hi Dubious,
I had a compressed nerve which caused those symptoms and more. Had surgery and was told it takes 1month to heal 1" of nerve so mine if it worked(I was told that compression release does not always work) would take 7-8months to heal. After surgery i had feelings of bugs crawling under my skin but the burning had backed off. At 6months PT started resistance exercises & my arm began all over again-burn, ache, turn color and temp, sensative to touch and cold and if it is too humid outside. It was then that they realized i also had RSD before surgery-but i would still have done the surgery to try and relieve the nerve. My pain Dr. said unfortunately it is vicious cycle- the nerve damage will continuously irritate the RSD-he was right because now i have full body CRPS.
Sorry to hear of your injury. It sounds to me like your nerve or the RSD is acting up. momof4
Hi momof4,

I tend to agree. It has been 2 1/2 yrs now since the onset of the "beast." The new (old) area "de jour" that is now on fire (again), is a patch on the back of my shoulder and shoulder blade that was originally numb but strangely, intensly painfull post surgery and had dissipated for awhile. Much of it seems to be as a result of posterior cord or axillary nerve damage, primarily, but I do believe other nerve bundles are a mess too. Since trying to spread the SGB's out (got them up to 4-5 months between), suddenly that "area" is now burning up again something fierce. No reason at all for that. Original areas of my arm and hand that early on were just beyond miserable pain-wise, are now hurting, aching and burning all over again too.

Wow....this is just simply the gift that just never stops giving....isn't it?

While they still help....I painfully worry, just how many SGB's can we ultimately have???
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Old 08-24-2010, 06:29 AM #10
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Quote:
Originally Posted by RNcrps2 View Post
Hi Dubious,
I had a compressed nerve which caused those symptoms and more. Had surgery and was told it takes 1month to heal 1" of nerve so mine if it worked(I was told that compression release does not always work) would take 7-8months to heal. After surgery i had feelings of bugs crawling under my skin but the burning had backed off. At 6months PT started resistance exercises & my arm began all over again-burn, ache, turn color and temp, sensative to touch and cold and if it is too humid outside. It was then that they realized i also had RSD before surgery-but i would still have done the surgery to try and relieve the nerve. My pain Dr. said unfortunately it is vicious cycle- the nerve damage will continuously irritate the RSD-he was right because now i have full body CRPS.
Sorry to hear of your injury. It sounds to me like your nerve or the RSD is acting up. momof4
I apologize for not responding but my husband and I have been dealing with his mom who is very sick with cancer, dealing with chemo side effects. We decided and she wanted to come and stay with us. She is coming beginning today. I have been very sad so I haven't had the head or time to post. But yes I have been feeling misreable. I just saw my PM doc just yesterday. We also talked about the PN (Periphal Neuropothy),sorry spelling) which I quess I just kind of ignore most of the time. Just don't want to deal with it. Anyway just as a FYI all my doctors have been so against nerve surgery as he stated it rarely,rarely helps a condition like mine. We wants to try a series of 3 SGB which I had many in the beginning. But he is doing it with ultra sound guidance, which is a first for me, and just wants to try and get it under control that way. I am going to stay as positive as I can.

I will tell you this it is much less humid today finally and I can tell the difference already.

Gabbycakes
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