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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I have had RSD now for 11 months. It started out in my ankle after I injured it at work. I have had three nerve blocks done. The first one worked wonderful, the second one I was in more pain than I was before I had the block, and the third one put me out of work because after I had it, I could barely walk!!! After the third block, I have had nothing but pain down my entire left leg instead of just the left ankle and my left side of my lower back is in pain all the time and I get bad back spasms. Last month my other foot started having the burning pain, from the top pad of my foot to my toes. Now two weeks ago, I started having burning pain and sensitivity in my left arm between my shoulder and elbow. I have been seeing a PM doctor for ten months now. She isn't a "work comp" doctor, she has regular patients, but this is who my work comp allowed me to see (there were a lot of other physicians permitted besides her). Anyways, since this is work comp, I wanted to get my own outside opinion because I don't feel like I am getting any better, only worse. So I drive to Chicago to see one of their "top" doctors of Pain Management. First, they ask you a question and don't give you time to respond, ask you questions that if they would have just listened in the first place they wouldn't be asking these questions. (I say they because I had two interns first come in, then the doctor). So he proceeds to tell me that yes, I have RSD in my left foot but the back pain and the burning pain I have in my other foot and arm are not due to RSD spreading because RSD doesn't spread. He told me that because I have the pain in the RSD foot, that any pain I get now, I am protecting it so it wont start hurting like the RSD foot, and thereby causing myself these problems. I have "given" myself chronic pain because of that. I told him I use my exercise bike twice a week for fifteen minutes, I use my therapy band three times a week like I did in therapy, and I walk at least once a week. He told me I needed to do more than that, that I am just not walking enough and that I need to walk everyday and keep moving. Again, I tried to explain that I do keep moving...it's not like I am sitting around doing nothing! I cant sit around because if I stay sitting, I get stiff and cant move and then I am in a lot more pain! Not to mention the stabbing pain I will get in my back if I stay in the same position for very long. I left that office more frustrated than when I came in!!! So, my question is this....how many of you have had your RSD move from one limb to a different part of your body? I have a girlfriend who has had RSD for over twenty years and she has it in all of her limbs and her back! I just cant believe that this is one of the top doctors in Chicago!!! (or so I was told anyways!)
Jonathan, that is one of the things that they were telling me, that I am putting to much pressure on the other foot and my gait is off because of the ankle injury, that is why I am getting the back pain...etc. That came from my pain management doctor out here. The one I saw in Chicago is the one who said that I am babying anything that may hurt and that's why I am getting pain like I am in my other foot and arm. Like I said, the pain in those two limbs are burning, not muscular. Jonathan, I MAKE myself use the exercise bike. I had to use it in physical therapy so I will use it at home. I just don't have any resistance to it. I know if I want to at least minimize the pain, even if it is the slightest, I will deal with the pain from the bike to just be able to keep use of my limbs and not end up in a wheelchair!

Faithmom, I totally agree, it seems like we know more than they do...which is sad.I truly appreciate the feedback!!! FaithMom, I know you reply to a lot of posts and for that, I want to say thank you!!!
Hi. My husband was diagnosed in 2003 witin Rsd in his foot ankle and it moved up his leg then to the other foot leg then to his hands then to his arms and even his face and head. It really makes me mad when physicians who think they know it all make foolish diagnose because they are just guessing or getting their info from the internet and too proud to say they don't know! It can spread to other limbs. Sometimes you can guard a limb from being touched because it hurts so bad but that doesnt mean you will guard the other limb unless it is hurting as well. Find another doctor if you can. One who knows what he is doing! My husband went through so many doctors (14) until he found one that was compassionate and really aware of Rsd and its dibilitating symptoms. I was at my wits end when I was going through this with my husband. It is sad that so many people are suffering at the hands of doctors who refuse to admit they don't know everything.

You are not alone! Your symptoms are real and it is unfortunate you already have to deal with the pain and other symptoms without someone making it so hard for you just to get through the day. If you cant walk or move then rest and excercise when you feel better. Dont push yourself too hard or you will pay for it the following day with severe stiffness or muscle fatigue. Just take one day at a time and manage your pain as best as you can! Love yourself and find a doc who cares. There is one out there for you! Dont get discouraged even if you are dealing with doctor DREAD! You will get better....promise. :)
[QUOTE=JohnathanM;5163890]you are exactly right! I investigated it when I got home and found out that not only does is spread but that it more often than not does!!! He was a Work Comp doctor so that explains a lot :)[/QUOTE]

That's why I said, the sad thing here is that he isn't a work comp doctor. This is supposed to be a "top" doctor in Chicago at the Rehabilitation Institute of Chicago! For him to make that statement made me realize that I was NOT going to go back to see him or do his intensive three week therapy!!!
Jonathan, you are doing the work comp thing like I am. Believe it or not, my PM doctor who I have had from the start has impressed me the most...and this is who work comp sent me to!!!! The only thing messed up with her (and not sure if it was her or the rsd) was that when she did the two nerve blocks, it messed me up. Her partner did my first one and it was great! So, after everything is all said and done, and the work comp case is settled, I think I will stick with my PM doctor that I have now. She has been very knowledgeable and very compassionate!
She is a wonderful doctor who has been so understanding! This doctor sees other patients, she isn't like an occupational health doctor who they sent me to the first six weeks of my injury. I hope you're doing well Jonathan! Keep on moving!!!
Ask about aqua therapy instead of physical therapy. I go Wednesday for my evaluation and start my aqua therapy on Thursday. I'm excited to see how this goes. PT was making me hurt worse than when I came in there....but, I did increase my range of motion doing it! I don't want to lose the ground I had gained. Friday I got the call that work comp denied paying for the aqua therapy stating that doing PT in water is no different than the PT I already had so they refused to pay. So...I made a call to my lawyer. "Miraculously", aqua therapy was approved today! haha!!! So glad I have an attorney!!! I will let you know how it goes.
Hi, I just had to write you both and explain my situation. I was diagnosed with RSD in left knee down to foot 2/2012, though pain started in October 2011. It had already started to spread to right foot by then but docs blew that off and just concentrated on left leg. From knee down was freezing cold and hurt so much.. Couldn't have covers touch it, being outside in cold weather made worse. I was just miserable. I had one lumbar sympathetic block done that february which helped a lot, including starting lyrica which really helped with burning and allodynia. I tried get him do more blocks but he was stubborn and said since it helped why do more? From 3/2011 to 8/2011 my arms started hurting.. Can't figure out which one first because had surgery twice on right arm in may and July 2011.. Last one 3 months before RSD pain was noticed in my left knee. (I still wonder if right arm may of started it all because pain didn't go away but I had just had surgery! And except for surgeries failing to repair bicep tendon no one noticed any color changes, etc) anyways last year arms started to hurt so bad, weakness, burning in forearms, dropping things, mottling down both arms just like noticed left leg. By August last year I was using cane all time from RSD in left leg and my forearms and both hands on fire. I was able talk my pm doc into two more lumbar blocks by December but think too late by then, they didn't help with pain. I tried to get him do stellate ganglion block to help with upper body symptoms but was blown off there too.. My medical insurance ended in December.
So what I am trying say is YES RSD does spread. I am unsure exactly what started first arm or left leg. I do know my left hand is one that gets cold at times, when they are not burning hot and extreme red and swollen (which is all time!) I started sweating from forehead down right after RSD started and it has become worse.. What does it mean? I don't know, except did not have it before. People at church last night thought I was going to pass out the sweat was just dripping off me.. And I live in Alaska and 40 degrees outside, no reason to sweat like that!
Also what jewlz said is true, at least has been for me.. Keep moving, do not overdo it! I did aqua therapy in hydrotrac at my pt office for 8 months.. It was what kept me from locking up and pain getting worse. I could barely walk with my cane but could get in water and walk for 20 min and do other exercises for that whole hour that I wouldn't of even tried on "dry" ground. Since December when my insurance ended my left knee will not bend correctly, I can not straighten out leg all way and my muscles are wasting away. I have had to start at local swimming pool to do some of the stretches though it has been harder because water is colder and my leg already has circulation issues.. It's very painful. I also just started going to gym (once so far! been dreading it!) and walked slowly on treadmill. I had to hold onto bars for support and it killed my arms and hands but it helped get my leg moving a bit.. I do NOT want to end up in wheelchair! And I admit the walking I did on Saturday has put me down for two days (I also have lupus and am having flair too). I also do hand and arm exercise, even just couple mins at time..
Sorry if rambled and this is long post.. Yes, RSD spreads, and keep moving or will end up with contractures or in wheelchair but do not overdo it. Just little bit at time.
God bless,
Jennifer
[QUOTE="3kidz;5165519"]Hi, I just had to write you both and explain my situation. I was diagnosed with RSD in left knee down to foot 2/2012, though pain started in October 2011. It had already started to spread to right foot by then but docs blew that off and just concentrated on left leg. From knee down was freezing cold and hurt so much.. Couldn't have covers touch it, being outside in cold weather made worse. I was just miserable. I had one lumbar sympathetic block done that february which helped a lot, including starting lyrica which really helped with burning and allodynia. I tried get him do more blocks but he was stubborn and said since it helped why do more? From 3/2011 to 8/2011 my arms started hurting.. Can't figure out which one first because had surgery twice on right arm in may and July 2011.. Last one 3 months before RSD pain was noticed in my left knee. (I still wonder if right arm may of started it all because pain didn't go away but I had just had surgery! And except for surgeries failing to repair bicep tendon no one noticed any color changes, etc) anyways last year arms started to hurt so bad, weakness, burning in forearms, dropping things, mottling down both arms just like noticed left leg. By August last year I was using cane all time from RSD in left leg and my forearms and both hands on fire. I was able talk my pm doc into two more lumbar blocks by December but think too late by then, they didn't help with pain. I tried to get him do stellate ganglion block to help with upper body symptoms but was blown off there too.. My medical insurance ended in December.
So what I am trying say is YES RSD does spread. I am unsure exactly what started first arm or left leg. I do know my left hand is one that gets cold at times, when they are not burning hot and extreme red and swollen (which is all time!) I started sweating from forehead down right after RSD started and it has become worse.. What does it mean? I don't know, except did not have it before. People at church last night thought I was going to pass out the sweat was just dripping off me.. And I live in Alaska and 40 degrees outside, no reason to sweat like that!
Also what jewlz said is true, at least has been for me.. Keep moving, do not overdo it! I did aqua therapy in hydrotrac at my pt office for 8 months.. It was what kept me from locking up and pain getting worse. I could barely walk with my cane but could get in water and walk for 20 min and do other exercises for that whole hour that I wouldn't of even tried on "dry" ground. Since December when my insurance ended my left knee will not bend correctly, I can not straighten out leg all way and my muscles are wasting away. I have had to start at local swimming pool to do some of the stretches though it has been harder because water is colder and my leg already has circulation issues.. It's very painful. I also just started going to gym (once so far! been dreading it!) and walked slowly on treadmill. I had to hold onto bars for support and it killed my arms and hands but it helped get my leg moving a bit.. I do NOT want to end up in wheelchair! And I admit the walking I did on Saturday has put me down for two days (I also have lupus and am having flair too). I also do hand and arm exercise, even just couple mins at time..
Sorry if rambled and this is long post.. Yes, RSD spreads, and keep moving or will end up with contractures or in wheelchair but do not overdo it. Just little bit at time.
God bless,
Jennifer[/QUOTE]

Thanks Jennifer. I tried the hydrotherapy pool too but water is not hot enough. How did you stand it? Hot tub is perfect at 104 degrees
Hi Jennifer, thank you so much for sharing your story. My problem is I do end up overdoing things! I love to fish, one of my favorite things to do in the summer. I went fishing for just a couple of hours yesterday, just fishing off the pier and sitting on a bench. By the time we were leaving, I could barely walk. I'm still paying the price for it! I'm hoping the water therapy will help! I have heard that RSD causes excessive sweating. I have been reading so much on this crazy disease. The one common theme is RSD is different with every person! I hope you are able to find some relief!
JonathanM- sorry I haven't wrote back. I did have ups and downs with the temperature of hydrotrac. The jets hurt to have them on so I would have to have them turned off which decreased the temperature. Sometimes it was too hot for me, just the heat on my legs would make it burn more. I would also use a styrofoam noodle to hold my arms up to do other exercises.. That became so uncomfortable under my arms and biceps. Just rubbing on my arms was extremely painful and by time I ended do pt in December I barely was able do them anymore. But for anyone trying to get any movement out of there legs I would recommend at least trying the hydrotrac. I have gone downhill badly since my medical ended. If I could restart I would.

Jewlz67- I am sorry you get worn out too. It's amazing how little we do that puts us out for days. Yesterday we (my soon-to-be ex-husband, our 6 yo daughter and I) drove an hour away to go to function with friends. My ex's truck broke down about 20 mins from place we were goin. Because we were on highway and how it would be easier to get picked up, we had to walk across street, onto off ramp and get to top of bridge (and was alot safer than staying in truck because of where we broke down at) it was NOT very far! I am only 40 yo! I was exhausted and have been in bed all day. My legs are on fire. It sucks...I wasn't able to help out at church today because of vehicle situation or able get out bed because had high fever and whole body hurt. I have lupus too so when I overdo it I get double whammy. I'm tryin be grateful right now for what I have instead of what I don't have, but it's not easy. I was also denied SSDI this last week so I have been in depression..I hope your days have been better and have been pain free, or what do we say on this site? Pain tolerant! :)
The really sad part about RSD/CRPS is how little people know about it... Especially doctors and nurses..until my pm doctor told me in his office that it could be RSD I had never heard of it!

We really need get word out there and the correct information! No ice, no intense physical therapy (maybe its worked for some but it's NOT helpful for most) why you DON'T touch someone where they hurt! YES doctors it does SPREAD! And etc, etc...

I have family and friends that refuse to even look up information on it.
[QUOTE=3kidz;5168360]The really sad part about RSD/CRPS is how little people know about it... Especially doctors and nurses..until my pm doctor told me in his office that it could be RSD I had never heard of it!

We really need get word out there and the correct information! No ice, no intense physical therapy (maybe its worked for some but it's NOT helpful for most) why you DON'T touch someone where they hurt! YES doctors it does SPREAD! And etc, etc...

I have family and friends that refuse to even look up information on and been faking for the last 9 yrs. The think that I'm some junkie and needing pills for recreational use. I also know how you cannot stand for someone to touch those areas where the RSD is. My 2 grandsons and 2 daughters are the only reason I try everyday. I just try to overlook those that don't understand.
I am sorry for your diagnosis of RSD/CRPS. I was diagnosed in July of 2011 after my ankle was crushed. I lost my job because of it and all the meds I was continually eating ginger for the nausea. My "angry child" started spreading up my leg, into my hip - horrid, awful burning, pain caused by the feeling of barbwire wrapping around my ankle. Now that it has spread to my left hand, across to my right foot and calf. The burning is like sticking your leg in a fire. I was prescribed a Topical Compound from the Dr. at Mayo in Arizona. They confirmed my diagnosis that my foot dr. feared. After trying nearly everything, and acupuncture 3x's a week since Dec. 27, 2012, nothing gave me relief. I found I couldn't take a hot shoulder as the pain was so awful it thru me off balance and I nearly passed out from the pain. From then on, no more hot showers, no jacuzzi's either. I hope that your "angry child" will be kind to you and your journey through RSD/CRPS isn't as bad as I've experienced. I don't know how to go back and give you a hug as I am new to this, so HUGS to you, lj
Thank you all very much for your responses. Jonathan, the aqua therapy is going both well and horrible! When they have me doing exercises in the deep end of the pool and holding onto the noodle, its not so bad. When they are having me walk the width, not length, the width of the pool, it puts me to tears. Makes no sense to me!!! Getting out of the pool is the worst!!! I feel like i am dragging 200 lbs behind me!!!

3kidz, I understand completely what you mean with doing the little bit wiping you out! Just to take that long of a drive would be murder on me! I've had to take an hour drive before and when we got to our destination, i could barely walk! Like you, I try to look at the positive side of it that says, it could be worse. I am thanking the Lord for the small things. I thank Him that I am still able to walk, even though it's alot slower, I can still do it! I thank Him for the good days for when the pain is tolerable, I thank Him for the grace to get through the bad days when the pain is not tolerable, and I thank Him for this site and the people who have been such a blessing to me! This is so helpful having this site because you are speaking to people who KNOW what you are dealing with!!! So I thank you all for being a part of my new online family! Also, I have joined a site on FB that explains RSD. I added it to my favorites so people can see it and if they want to know more about it, they can.
[QUOTE=jewlz67;5162278]I have had RSD now for 11 months. It started out in my ankle after I injured it at work. I have had three nerve blocks done. The first one worked wonderful, the second one I was in more pain than I was before I had the block, and the third one put me out of work because after I had it, I could barely walk!!! After the third block, I have had nothing but pain down my entire left leg instead of just the left ankle and my left side of my lower back is in pain all the time and I get bad back spasms. Last month my other foot started having the burning pain, from the top pad of my foot to my toes. Now two weeks ago, I started having burning pain and sensitivity in my left arm between my shoulder and elbow. I have been seeing a PM doctor for ten months now. She isn't a "work comp" doctor, she has regular patients, but this is who my work comp allowed me to see (there were a lot of other physicians permitted besides her). Anyways, since this is work comp, I wanted to get my own outside opinion because I don't feel like I am getting any better, only worse. So I drive to Chicago to see one of their "top" doctors of Pain Management. First, they ask you a question and don't give you time to respond, ask you questions that if they would have just listened in the first place they wouldn't be asking these questions. (I say they because I had two interns first come in, then the doctor). So he proceeds to tell me that yes, I have RSD in my left foot but the back pain and the burning pain I have in my other foot and arm are not due to RSD spreading because RSD doesn't spread. He told me that because I have the pain in the RSD foot, that any pain I get now, I am protecting it so it wont start hurting like the RSD foot, and thereby causing myself these problems. I have "given" myself chronic pain because of that. I told him I use my exercise bike twice a week for fifteen minutes, I use my therapy band three times a week like I did in therapy, and I walk at least once a week. He told me I needed to do more than that, that I am just not walking enough and that I need to walk everyday and keep moving. Again, I tried to explain that I do keep moving...it's not like I am sitting around doing nothing! I cant sit around because if I stay sitting, I get stiff and cant move and then I am in a lot more pain! Not to mention the stabbing pain I will get in my back if I stay in the same position for very long. I left that office more frustrated than when I came in!!! So, my question is this....how many of you have had your RSD move from one limb to a different part of your body? I have a girlfriend who has had RSD for over twenty years and she has it in all of her limbs and her back! I just cant believe that this is one of the top doctors in Chicago!!! (or so I was told anyways!)[/QUOTE]
Oh yes it can spread. Began with it in my left leg then down to foot, over to right leg with just pain no color changes/swelling then had stimulator put in March 2015 woke up with rsd in my right arm/shoulder/hand. so don't let them tell you it can't. i've heard to take 500 mg of vitamin c everyday is supposed to help keep it from spreading. don't know whether this is true or not but figure it won't hurt me will keep immune system up if nothing else. I'm sorry you are in so much pain. gentle hugs





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