Hi all, I have been reading this board since I was diagnosed with RSD in May, 2007. I have had two ulnar nerve surgeries which resulted in RSD in my entire left limb. I have had most of the symptoms of pain, burning, bluish-red blotching, lots of swelling and now dystonia, which is really leaving my hand weak.

Anyway, I have a symptom that comes and goes depending on my activity and environment. When I get nervous or work hard on an exercise bicycle, my left hand will sweat like crazy. This happened again last night while I was watching a movie with my family. It was an adventure (nothing upsetting) but there was a build up in a scene and my left hand starting sweating so much I had to get a towel to clean up the moisture. It continued for a few minutes so I took a .5mg of Ativan to calm things down. That pill coupled with a changed environment (movie ended) stopped the sweating completely. The same thing happens with exercise, if I work hard on my bike, my left hand sweats like crazy yet I get nothing from the right.

I know I never had this problem before the RSD. So I wonder if this means I still have the RSD in my arm? I get so confused. I saw my hand surgeon last week and he said the RSD has resolved and what I now have is a damaged ulnar nerve. Two days later I see my neurologist and she said the sweating and hand stiffness is from the RSD and that it never totally resolves.

I am really confused. Does RSD flare and calm down or if the pain level calms down (sometimes) does that mean I don't have RSD?

Also, if I am just calmly sitting watching a movie and this terrible sweating starts up without me moving my arm (I have it propped on a pillow to help reduce the swelling) then does that mean the RSD is originating in my spine or brain and not in the peripheral nerves?

Any ideas?

RSD has a mind of its own. There are good days and bad days with it. Sometimes the pain is really bad, other days it seems calmer and the pain is less intense. I've had RSD for 5 years now and have good and bad days like everyone else.

Abnormal sweating is one of the "key" symptoms of RSD. Because of the nature of RSD and it being a neurological thing, it messes with all our bodily systems. We don't regulate our body temps like a "normal" person does, like we used to do. So, an rsd'er can run a low grade temp because of the rsd and can go from being too hot to too cold in a matter of minutes. It can affect blood pressure. A lot of things can work not quite right, because of rsd.

In the case of sweating though you don't have to do a thing with the rsd limb to have it sweat or not. An example from my own experience is with my feet. My rsd started in my left knee/lower leg/foot. It spread very quickly,11 months, throughout my body and it's all over now. Well, like most everyone else, my feet,legs,hands and arms always feel like an ice cube. If I stick my feet under the covers to try and warm them up, they might warm up a little bit but not much and they will start sweating like crazy! The same thing happens with my hands too. I can sit here and feel cold, yet be sweating under my arms.

To have no RSD and be in remission, you are completely pain free with absolutely no symptoms what-so-ever. No skin discoloration, no abnormal skin temps, no muscle spasms, no jerking of a limb(s), nothing. Remission, like with cancer, is a complete lack of any and all symptoms of this disorder. If you have sweating, pain, skin discoloration, spasms, skin temp difference compared to your "good" body parts,swelling etc. then you have rsd.

I hope this helps clear things up for you. Don't hesitate to ask more questions if you need to. I'll do my best to answer in the best way I know how.

Big Hugs,

Karen

Hi coffebean!
You do have a lot of interesting questions here. ok, now first of all once your diagnoised by the right Dr. about RSD there is no such thing as "Your RSD resolving" There is no cure for it and you listed a lot of symptoms, such as the burning, pain, bluish red blotching, swelling, etc.
I too have symptoms come and go also with the amount of activities I do and of course the environment. Sometimes my RSD is not that bad, but when I have a flare, I am in bed hiding from the world, so to speak. It can rear it's ugly head whenever it wants and this is where I'm more depressed, don't want to be bothered and have "those pity parties for myself".
Now, there a 3 types of peripheral nerves; motor, sensory and autonomic.
Some neuropathies affect all three types of nerves, while others only one or two.
3 types of peripheral Nerves: Motor, Sensory and Autonomic.
Motor nerves send impulses from the brain and spinal cord to all of the muscles in the body. This permits people to do activities like walking, catching a baseball, or moving the fingers to pick something up. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps or spasams.

Sensory nerves send messages in the other direction- from the muscles back to the spinal cord and the brain. Special sensors in the skin and deep inside the body help people identify if an object is sharp, rough, or smooth; if it's hot or cold; or if it's standing still or in motion. Sensory nerve damage often results in tingling, numbness, pain, and extreme sensitivity to touch. Then last of all there is the Autonomic nerves which control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion and sweating. When the autonomic nerves are damaged, a person's heart may beat faster or slower. They may get dizzy when standing up; sweat excessively; or have difficulty sweating at all.
You also asked if the pain levels calm down? Yes, by all means our pain level can calm down and then go and do what ever this beast (RSD) wants to do like I mentioned in the above. Well, hope this helps some and please do go to a doctor who will not confuse you by saying, "The RSD has resolved"!! that's like my older pain management Doctor who told me my RSD will burn itself out and all I have to do is wait it out!! I was like you, confused. Once you have RSD you have it, If you don't have it, you don't. With your symptoms that you mentioned with the pain, swelling bluish, red, I am sure you have it. It can go into remission for a short time or even longer, then to return in weeks, months years latter. That is why these blocks that a lot of us had, to try and see if this helps put us into remission, eases the pain and so forth.
Well, you take care and pick out a really good pain doctor who knows a lot about RSD. I wish you all the best, coffeebean.~Love, Desi

Dear Karen and Desi,

Thank you so much for your responses. This really helps me understand what is going on here. I have had two doctors in the past month tell me the RSD has "resolved" (neurologist) and "burned itself out" (upper extremity surgeon). Of course this is something I want to hear and believe, yet my body acts to the contrary. I will be okay (not at all back to normal, just not in blinding pain) for a little bit and that is when I think; "oh gosh maybe this nightmare is over". Then, just like you said, five minutes later something or nothing will happen and my arm starts burning, my fingers swell and I can feel the pain right up through my head all on the left side.

I have had an internist tell me RSD never goes away and that I should be on some type of medication to keep the nerves somewhat protected. On the other hand, I had a neurosurgeon tell me to take nothing and let the brain figure out how to heal itself. I have been on a rollercoaster ride for the past twelve months just trying to really sort out what is wrong and how to best "maintain" my nervous system.

I can feel the RSD wanting to spread to my right side. The pain in my ulnar nerve is getting so much worse and my little finger keeps going numb just like it did on my left before the surgeries.

How does this happen to a person? I went in for a simple ulnar nerve release and still one year later I have such serious health problems from this and not even the doctors can agree on what I have let alone a treatment program.

I have to say I have traveled to see a doctor for this in both Chicago and Cleveland and they did not hesistate to diagnose it as CRPS II due to the ulnar nerve entrapment.

Ladies, I can't thank you enough for your input to this post. I thought I was going nuts when out of nowhere my heart will beat wildly or I will start sweating down my left arm only. I really thought I was just developing a general anxiety disorder or something. Yet I never had any of this before that first ulnar nerve surgery and RSD diagnosis.

How do we know what meds are best? Will any of them reset the sympathetic nervous system?

Lisa

It's the unfortunate part about rsd. It never does go away. Even if you go into remission, it's still there and can come back again at any time with or without a "new" injury.

The neurosurgeon is full of bullhockey. LOL Your brain is just as confused as your nervous system with the overwhelming load of pain signals it's receiving.

I'm so sorry to hear your right arm ulnar nerves seem as if they're going. There's no rhyme or reason why rsd happens from a "simple" surgery or any other "simple" injury. I slammed my knee and had a broken kneecap.

One very important point on surgery. Though you don't have rsd in your right arm, you don't want to have surgery on it either because it could very easily spread to your other arm from the surgery. Most any rsd'er doesn't have surgery of any kind unless it's absolutely necessary and unavoidable. Oh, no ice on your rsd limb ever! :-)

Nice to know you're not going nuts or losing your mind! :-D

As for meds. It all depends on your body. We all react differently to all of the meds out there. It usually takes a combo to keep things under control.

Antidepressants help some people with the pain and it also helps them sleep, like Elavil.Then there is Neurontin, Lyrica, Cymbalta and Topomax. There are a lot of people who take neurontin and do fine with it, but I reacted badly.

Cymbalta gave me horrid stomach pain but other people take it and do fine. Topomax a lot of people do well with as well. It's one I can't take because a side effect is weight loss and I'm already very, very underweight.

Lyrica is what I take. It's done fantastic for me and other people, again, haven't reacted well to it at all. It has helped my pain just a little, but the reason I started taking it was to get rid of the numbness in my legs and it has done that. Some unexpected benefits of it have been it stopped my night sweats completely and has helped to cut back on other sweating I have. It stopped the electrical zapping I've always felt from rsd.

The only other meds I take are baclofen, for the muscle spasms and jerking of my limbs. I rarely have any jerking episodes since I began taking it. I take norco for the pain.

It's all a matter of trial and error to find which one works for you and at what dose it takes to get things under control. I take 10mg pills of the baclofen 2 times a day and take 100mg of lyrica 1 pill at night. You start at a low dose and work your way up.

Hugs,

Karen

Karen,

I too did not do well at all on both Neurontin and Cymbalta. I did try Lyrica (50mg) dose about a year ago but I was also on another med and one of them gave me hives, so I should probably try the Lyrica again to see if that will work for me. I have an Epi Pen on hand in case it was the Lyrica.

In January of 2008 I saw a female Internist who said she had experience treating RSD in Oregon when she practiced there. She is adamant about the protocol of taking daily medication to calm the nervous system; her preference for me is Lyrica. I have the 25mg. caps already so it would be easy to try it again. I have not gone back to her since February because I did not want to hear RSD is not curable. She said right off that it never burns out and that I should think of RSD like I would diabetes, and to treat it continuously just like a diabetic would treat their disease. I am now beginning to feel she is correct.

And about another surgery. I couldn't agree more. I do not want to ever have another surgery, let alone one on an upper extremity. But I am not going to be that lucky. Unfortunately, I have a huge enchondroma (bone tumor) in my right ring finger that has eaten away almost all the bone. I just had another set of x-rays last week and it is still growing, so the three doctors I have seen want it removed and then filled with bone from my hip...can you imagine how bad that would be? That is just new sights of RSD just waiting to happen. Anyway, I have seen a doctor at the Cleveland Clinic who said they can do the surgery without spreading RSD but the nerves have to be "cyto" protected. Meaning I need to be on Lyrica, Kepra, Cymbalta, or whatever else to alter the brain chemicals along with a SGB to the right side. This of course is no guarantee, but if I do proceed with surgery, Cleveland will be my first choice.

RSD really does change how I live and function. It is so scary sometimes. I can tell I am in a bad flare and that is when I can't sleep, I get so anxious with the pain so high and I do sweat like crazy. At least I know I am not the only one. It sure seems that way when I see doctors around here. Most have not seen RSD before so it is a guessing game regarding the best treatment plan.

Cleveland is absolutly correct! There are precautions that can be taken to keep the rsd from spreading and blocks are the top one. I'm so sorry you have a bone tumor though and it's done so much damage. I wish you easy surgery to get it removed and a speedy recovery with no complications! *gentle hugs*

Unfortunately a lot of doctors have no clue what it is or how to treat it and other docs know a little about it but have no idea what to do about it. Docs like that end up blaming the patient when they don't "get better". That is so wrong.

RSD certainly is life changing but getting proper care and doing all you can to keep things under control with meds, pain, spasms,etc. Making sure you keep moving but most importantly....realizing that rsd isn't the end of life nor the end of the world. It seems you are changing your thinking for the better but we've all gone through the stages of grief when we got dx'd. It's all a part of it. We're all here for you and you are definitely not alone with anything you're experiencing no matter how odd it may seem to you now. :-) I hate the sweating part the most. It's always gotten worse around "that time of the month" which is why I'm sooooo glad lyrica has stopped it. I still get to feeling a bit overheated and then feel too cold but that's just rsd. We can't regulate our body temp like we used to. Once I was dx and then started researching, I knew that rsd is the reason I ran a low grade temp in the beginning of it all. At the time it happened I didn't know but when I did it felt so good to know I wasn't crazy it was just rsd! LOL

Hugs,

Karen

I was injured almost 3 1/2 years ago. About a year after the injury (herniated disc L4-5) I started to have pains in both of my legs. Sometimes I even notice my legs seem cold even when the rest of my body is not cold. About 2 months ago I had a bone fusion on L4-5 and now the pain is still in my right leg, but worse in my left leg. Since the surgery I have an area of my upper thigh on my left leg that is now numb and tends to have a burning sensation from time to time. This area can also be very sensitive from time to time as well. The pain that I feel in my legs is constant....I feel the pain around the clock and it's painful! My dr. just started me on Neurontin this week and hoping it will have a good affect on me. Besides the Neurontin I am also taking percosets which I've been taking for over 3 years for my back pains, etc. Does it seem possible that I have RSD? The only dr. that I've been seeing on a semi regular basis is the orthpaedic surgeon. He is in Massachusetts where I used to live, but now reside in FL. Fortunately I have finally found a pain management center here in FL that will accept my Massachusetts workers compensation claim so hopefully I can start to get the care I need...sorry for making this post so long...it's just been a very long road that has been very frustrating for me. I've been out of work for 3 1/2 years now due to the back injury, and all of the pain that I've been experiencing. Looking forward to hearing any thoughts that anyone might have on this. Thanks!

Hi Weso18 and welcome to the forum. I am so sorry you are having so much pain. I would suggest you copy your question and start a new thread with it because I think your question is burried too deep in this thread and most folks won't see it. I know you will get some good responses from experienced folks here at the forum.

I have been at this for just over one year. I had two ulnar nerve surgeries in my left arm five months apart and it was just too much trauma for the area and I developed a nasty case of RSD. Along with viewing the threads on this forum, if you haven't already you may want to look at the RSDS.org website for some great RSD information. That site really helped me when I was first struggling with the diagnosis. A few of the articles were written by two doctors who specialized in RSD (one in Chicago and one in Cleveland) so I scheduled appointments and have seen both. It was well worth the trips and the education.

Keep researching and you will find the answers.

I understand the confusion. I wastold by a physical therapist in Feb 2007 that she thought I had RSD and she told me to talk to my doc about it. It wasn't until after I saw my hand specialist that I was officially diagnosed with it in June-July 2007 and he said it was caused from the previous dr doing surgery wrong. I didn't even know what RSD was so I came home and started researching it online...then I went into denial. Mine isn't near as bad as some on here, but it does seem to be moving to the right hand as well. I have yet to see a PM, but will probably start PT again in a few weeks after the cast comes off (had unavoidable surgery 5 weeks ago). The only med I'm taking consistently right now is Vicodin, and that's just been since surgery.

I do wish you the best and will keep you in my prayers. I'm still fairly new to this "disease" or "condition" whatever they call it, and really wish it truly did go away...but it seems that's just not gonna happen unless God chooses to intervene. Good luck with the meds and finding a better doctor...let us know how it goes.