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Old 02-11-2012, 10:21 AM   #1
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Question Rsd vs raynauds

I am totally confused and not sure who to believe anymore. Here is a little background info.
12/09/2010 ACDF C5-6 C6-7
9/2/2011 Rear ended as a driver
I was pretty much better after my surgery with ROM and strength. Then I was rear ended and back at square one as far as ROM and strength was concerned. Then my hands and feet started getting cold and reddish to bluish. Then same affects to my toes and feet. Then the opposite occurred red and burning and swollen toes mainly and fingers and palms. It hurt to walk at times and I couldn't wear my rings and was losing strength in my hands. OSS wasn't sure what the situation was. He sent me to a vascular surgeon who said it was RSD. Then I did more research and needed to find someone to treat the issues. Found a physiatrist that is knowledgeable with RDS. Not so easy. Finally did and went to the appointment. He felt it wasn't RSD due to similar symptoms in both hands and feet. He said that it generally affects either the right or left but not both at the same time. He felt is was Raynauds. He feels an EMG is warranted and will try a Stellate Ganglion Nerve Block to see if that helps. Any thoughts about where to go or what to do?

 
Old 02-11-2012, 04:00 PM   #2
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Re: Rsd vs raynauds

Quote:
Originally Posted by frenchfri1003 View Post
I am totally confused and not sure who to believe anymore. Here is a little background info.
12/09/2010 ACDF C5-6 C6-7
9/2/2011 Rear ended as a driver
I was pretty much better after my surgery with ROM and strength. Then I was rear ended and back at square one as far as ROM and strength was concerned. Then my hands and feet started getting cold and reddish to bluish. Then same affects to my toes and feet. Then the opposite occurred red and burning and swollen toes mainly and fingers and palms. It hurt to walk at times and I couldn't wear my rings and was losing strength in my hands. OSS wasn't sure what the situation was. He sent me to a vascular surgeon who said it was RSD. Then I did more research and needed to find someone to treat the issues. Found a physiatrist that is knowledgeable with RDS. Not so easy. Finally did and went to the appointment. He felt it wasn't RSD due to similar symptoms in both hands and feet. He said that it generally affects either the right or left but not both at the same time. He felt is was Raynauds. He feels an EMG is warranted and will try a Stellate Ganglion Nerve Block to see if that helps. Any thoughts about where to go or what to do?
Hi frenchfri, you remind me of my bs that I have had from all my drs, (ortho,Pcp, neurologist, pt, and pm). I got RSD from knee surgeries. Started in one foot then went to other foot. Creeping up legs but its also in my hands, knees, and creeping up arms. I had the EMG, showed I had nerve damage?? The neuro said I have RSD and neuropathy. The PM Dr says RSD but maybe MS too. Had MRI of brain, no MS. I was like, well yeah duh! I have no MS symptoms. Anyway, I had 4 gang nerve blocks, the1st one worked for 24 hrs. The PM and neuro drs said this was proof of RSD because it worked.(that's what they told me anyway) Oh and I also have bizarre color changes, severe edema, burning pain,ice cold pain, VERY brittle toenails (2are loose) deep ache type pain with sharp pain, and sensitivity. So, I doubt I was much help but it can be a difficult thing to dx. I got the run around too. Don't give up and have the block. The block can help with the dx. Hopefully someone that knows a lot more than I do about RSD will post answers for you. I wish I had sonething uplifting and helpful to tell you sweetie...hang in there and I hope something I shared made some sense. *hugs* Karen

Last edited by hatemyfeet; 02-11-2012 at 04:06 PM. Reason: added on

 
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Old 02-11-2012, 05:49 PM   #3
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Wink Rsd vs raynauds

Thank you for your response. I appreciate any thoughts and personal experience that you have had. So far the temperature changes (hot and cold) color changes (red, blue and white or even black) has not spread past my hands (fingers and palms) and toes and a bit past the joints are affected. I have swelling mainly in my right hand to the point where I can't put my rings on. It is also much worse in the morning. There are times I can't make a fist or hold my toothbrush. Strength has decreased also. I have ridges in my nails but they are not brittle. I have planned on having an EMG not sure if they will do more than one for different areas. I will put a call in on Monday to the pain management. Glad you don't have MS. How long did the Stellate Ganglion Blocks work the other times you had them? How many did you have? Can you describe the procedure and how you felt. I had cervical epidurals and selective nerve root blocks in my neck prior to be fused. I think they are similar just in a different location. Sorry for the rambling. Hope you have a wonderful weekend.

 
Old 02-11-2012, 06:08 PM   #4
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Re: Rsd vs raynauds

Quote:
Originally Posted by frenchfri1003 View Post
Thank you for your response. I appreciate any thoughts and personal experience that you have had. So far the temperature changes (hot and cold) color changes (red, blue and white or even black) has not spread past my hands (fingers and palms) and toes and a bit past tyhe joints are affected. I have swelling mainly in my right hand to the point where I can't put my rings on. It is also much worse in the morning. There are times I can't make a fist or hold my toothbrush. Strength has decreased also. I have ridges in my nails but they are not brittle. I have planned on having an EMG not sure if they will do more than one for different areas. I will put a call in on Monday to the pain management. Glad you don't have MS. How long did the Stellate Ganglion Blocks work the other times you had them? How many did you have? Can you describe the procedure and how you felt. I had cervical epidurals and selective nerve root blocks in my neck prior to be fused. I think they are similar just in a different location. Sorry for the rambling. Hope you have a wonderful weekend.
No problem frenchfri, (love that name) my blocks were for my feet. Wont your blocks be for your hands? If so, they are not quite the same. I had 4 blocks all for my feet. They put in a iv and gave me fentynal and versaid. (sp?) Then put some type off needle or something in my spine and shot the medicine in. They also used some kind of xray to make sure they were in the correct placement. Cant tell you much more because I was loopey luney tunes from the meds. Only the 1st block worked in my mind. The other 3 only gave me relief for about 10-12 hours. If your block is for your hands it is a bit different than what I had. I really hope someone who has had that type will see this and tell you what it is like. Hope that helps even if just a little. Karen

 
Old 02-17-2012, 09:53 AM   #5
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Re: Rsd vs raynauds

hi fr fri, i do think we have chatted before on another forum here? anyways, karen gave you some really great info. and she is very right in what they do for the upper extremitys IS a bit different than for the lower ones only because in the lower spinal, that ganglion is right there running in and out of the spinal cord. but above c 8 nerve level, it is still within the neck area running along both sides of the trachea.

the stellate like i mentioned runs along BOTH sides of the trachea, so in order to actually try and block one side, they DO have to more than likely end up doing one side one day and the other another day. at least that is how it was at my PM clinic anyways. they inject that stellate with some type of medication that blocks ONLY the SNS signals. and as i said, both sides of that stellate just happen to be sitting right up against your traches. so they do have to inject kind of into your neck area? its not as bad as it sounds. they numb you up, and after a few minutes simply inject there and wait to see what happens in YOU. once that area whether lower or upper just gets blocked of ANY and all SNS signals running thru it/ to it, it would kind of show whether or not what you have is being generated/fed by the SNS itself, or possibly something else. once those signals are just blocked and if your pain or any outward type symptoms actually go down/away AT ALL, it is a positive for some type of sympatherically fed pain syndrome, most likely RSD/CRPS. if nothing actually changes, it does not always mean that this is not in reality any relation to the SNS, it just may not have taken well for alot of different reasons. but using the flouroscopy pretty much assures that the PM will indeed hit that 'right spot. while it is not the 'perfect test' it does help to ID what components are making up your overall pain process. but ANY changes while blocked(pain,color,swelling among other signs/symptoms), which is if i recall right, about six hours or so in duration for the actual block to run, tho your relief can go beyond that(and that is what is hoped for) it would show at least 'some' SNS involvement.

just look up what our SNS actually governs just to see if there is anything else you may have as an actual symptom or that is being affected that you just do not know about or not feeling at this point too. anyone with RSD just should know what IS governed by our SNS.

just so you know, your physiatrist is very WRONG in how this crap can sperad. it can spread to just about anywhwere and NOT ONLY stay on one side(trust me here when i say that even the specialists you really 'think' know it all, when it comes to RSD and certain other more obscure types of syndromes, they do NOT always even know for sure what is even possible). it is becasue the SNS unlike our spinal or other nerves are capable of kind of running back and forth to an from any given part of the SNS ganglions, unlike 'regular nerves" can'? they simply DO share the same level within the chain. this is how a pearon can end up with what is referred to as a 'mirror spread': ending up basically with what you just have on one particular extremity also 'showing up' in the opposite extremity in about the same exact spot. this is a huge risk whenever we have to also have any surgical procedures on the RSD affected area. any surgery has to include a symp block to assure this does not occur. this was actually told to me by my really knowledgable(thankfully for me) on RSD orthosurgeon before he ended up doing two seperate surgeries ON my RSD knee.

i do hope this helped some. but ask your phys about what IS mirror spread since he does not appear to have a clue what that actually is that just IS an inhernet risk with anyone who even HAS any form of symp generated pain syndrome. i am sure the PM you will be seeing DOES know about mirror spread. that is probably how you ended up with this in ALL extremitys in the very first place. just a guess. please let us know how things go hon, good luck, marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-18-2012, 06:56 AM   #6
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Wink Re: Rsd vs raynauds

Thank you so much for your reply. I will do some of the research you mentioned. I usually go in with a zillion questions that are written down in a journal along with specific symptoms I want to discuss. I have been on this site for over a year.

I had an ACDF 12/9/2010 on C5-6 C6-7 did well and felt that i was non symptomatic at about 8 months and had great ROM. I was so excited to go back to work as a teacher being pain free and being able to reach and stretch and do anything I wanted. Then I was rear ended Labor Day weekend and set back to square one. The plate/ screws/ and fusion was intact so I was so GRATEFUL for that. But my pain, lack of ROM and additional symptoms were extremely upsetting.

My OSS who admits he in not that knowledgeable feels it is RSD, the PA feel severe Raynauds, Vascular DR. RSD, PM was recommended feels severe Raynauds. Not too have that I don't have a consensus. I am going to go to my Rheumatoid arthritis dr (only have OA not RA) to talk about what he thinks. I value his opinion just had to wait 2 months for an appointment. The PM dr wants to do a EMG to test for nerve damage and then the Stellate Ganglion Block. I have had cervical epidurals and selective nerve blocks prior to my surgery. I just expect them to be done under light sedation and a fluoroscope. I am willing to try anything to help with the swelling, burning and hot/cold changes. Some of my pain and swelling can be coming from my neck (bulge in C4-5). Also have pain in my lower back on the right side and toes on the left foot that go numb. Had a lower back MRI and I go on Tuesday to review. I have a copy of the CD. Really cool to look at. Wish I knew what I was looking for. I understand how to read the cervical MRI's at this point.
Thank you again for your response!

 
Old 03-31-2012, 01:45 PM   #7
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Re: Rsd vs raynauds

Not sure if I ever replied to say thank you for the information. I have had 3 SGB's now. MY PM Dr. goes in from the back not the front. He says it is safer and they can get to the same spot. Not so sure. All that I have read online, they always go in from the front. They do use a fluoroscope when performing the block. They work for a short period of time but not even a week. Wish they helped for longer periods of time. Amazing to see the color and temp change within 30 minutes of the block. Amazing. Wish the change was permanent.The weather also seems to have a part in my temp changes, Anyone else have that affect?

 
Old 04-01-2012, 08:34 AM   #8
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Re: Rsd vs raynauds

sooo glad you had some success, and also a pretty darn certain Dx too. as long as you simply HAVE changes at all, it's usually a positive dx for RSD. the way MY SNS blocks usually "work" on my pain in my knee down thru my foot(i get the lumbar type), esp more lately is my pain IN that knee will tend to really get extremely fired up(after that block runs it's course of six hours) and alot more painful for like 6 days or so and THEN i do usually get it to go down a bit in overall intensity. it does usually last AFTER that 6 day nightmare, for about a month or two after. but this last one i had which was a series of two, it HAS lasted, or helped would be a better word since it never goes away, (but it can be brought down in overall intensities) now for a year at least? but i do think anyones actual 'response" to these types of blocks, as with other types too is a very highly individual type of thing? our own RSD crap just responds how IT decides to respond?

i have never heard of either, having the stellate done from the back and not the front, but who knows, maybe it IS much safer considering that the needle would also be pretty close to that carotid artery? if i remember right, the SNS is kind of running within that carotid sheath? not too certain tho exactly where that true stellate ganglion itself is specifically tho as it actually just sits somewhere along that trachea. so going thru the back probably would be a much safer type of needle placement for this particular type of 'entrance into". there is just alot of other 'stuff' that we simply do have within our rather tiny neck areas, as compared to the rest of the spinal that it does not have, to have to go around or make certain is not simply 'hit' during that type of block. i will have to check into that 'back side" needle placement at some point here just to see about the 'whys" they are even doing the stellate now this way vs the 'old way". there must be some benefit there or it would have been done the same way as always kinda thing? but the important thing here is i do believe this 'good' result would appear to rule out raynauds. just never ever allow ANY PM do this type of block esp, or any other without using that fluoroscope. they just HAVE TO be able to visualize where ANY needle is going in when it comes to any part of the spinal makeup. i am glad they used this on you FF.

while i DO know raynauds is a vascular type thing too, it just sounds like having that block really worked well to even get ANY relief beyond the like 6 hour duration of the SNS block. the SNS blocks are both a diagnostic tool and to try and hopefully bring down and change at least some of your overall symptoms and pain. from what i have been told, the more often you can just have the blocks done and as early as possible when it is even a suspected possible condition in someone, the better they can work too. or more 'lasting' coverage?

and oh my god YES to the weather being a really solid trigger, at least for my knee esp. anytime there just is any higher than normal moisture content in the air, even when it is a rather 'humid winter day" with alot of snow melting going on that does also place more into the air, i WILL feel that in my knee. and in the summer, between the heat(my knee is VERY sensitive to heat from any kind/source) and the dew points being higher, that too sets off the very same thing, swelling, higher pain intensities along with 'bringing out' what is still some knee damage in that same knee too. have had two dang surgeries on that sucker in 07 and still have some ongoing damage that hits the bones soo much harder(among other things, i had blown my medial meniscus, so i have some bone on bone there too). just a really bad bone aching component. luckily for me tho, my narcotic does help with that bone crap to some degree anyways. just nothing else in that RSD effected area at all really. but my other pain also will react in some icky ways too when the weather simply changes too rapidly. and this particular year has been hell in THAT dept. having like 80 in march??? then the next day like 40s-50s? and i am in Mn for gods sake, known as the "frozen tundra of the north". too wierd for words.

hopefully other blocks will also help with this too. just happy that you DID have a good response at all. some people, despite having the good changes during the six hour blocks and DO have confirmed RSD, don't get ANY "continued/ongoing' help from them at all, so that really IS a great thing you did FF. please DO continue to keep us in the loop hon, marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 04-07-2012, 09:21 PM   #9
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Re: Rsd vs raynauds

Hi FrenchFri.

I have RSD in my feet, and Raynaud's in my hands and feet, so I think I may be able to offer some insight. I can at least explain my perspective, and you can measure that against your experience.

The RSD pain is constant, and it is searing. In the morning it feels like it's painfully burnt and swollen:think of that frightfully red chubby tourist who fell asleep in the sun and now moves like a dehydrated lobster. As the day goes on (starting around noon) it feels like I have burn blisters coating my skin and every little movement is like an action against that blistered, oozing skin. A sock feels like burlap (on burn-blistered skin). When my feet get cold, that feeling is like sitting that oozing, blistered skin in front of a roaring fire. And not being able to leave. That's CRPS.

Raynaud's is absolutely weather & temperature affected: body position, lack of exercise and diet/medication can also affect blood circulation, which affects Raynaud's, but let's not split hairs. If my home is warm I wake up with swollen hands (yes, the rings don't usually make it on), but the colouration is normal. As I sit and type this my fingers are colder than my spouse's, but colour is fine. In the short walk to the subway my hands and fingers will turn orange/red/and blue and feel like I'm holding snowballs if I don't wear gloves or pocket my hands (it's about 7 degrees C here). But it's my baby toes that can take the worst of it: if they are allowed to get cold/wet repeatedly, I will form chilblains (exterior ulcers that are murderous when on toes). I went through 6 doctors and several medications before I finally asked my CRPS doctor about it: he prescribed Nifedripine/Adalat 30XL, I bought Soft Moc's version of those unflattering Australian anti-sex boots and followed the 'allow extremeties to warm naturally (use towels/socks not heating pads/hot water' rule and haven't had the chilblains reappear, so that's major progress. Things that are good for your heart rate: garlic, cinnamon, spicy foods, ginger, onion are all good for combating Raynaud's & preventing painful manifestations.

To simplify: CRPS is all the time and ranges from migraine to 'they're burning me at the stake' level in the course of a day, or minute. Raynaud's is comparatively annoying yet, unless you develop chilblains, then you have considerable pain. Management of Raynaud's is like cactus-care - anyone can do it

 
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