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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi All,
I feel stuck, helpless and confused. I went to see two PM who supposed to know RSD. The first one is a older doc and is the director of PM. First the neruosurgeon saw me and took history and he thought i might have RSD. Then the director doc came and checked me out. He said i don't have RSD. He said, if i have RSD on my hands, i would not able to shake his hand. I was able to shake his hand with pain. He looked for edema. My edema at this point in time has reduced a lot. He was looking for temp and color change. My color change was more blothy red on hands, not blue color yet. However, some time, my feet turn purple bluish or very red. He was looking for hypersensitive to touch in my arms. It was okay for him to touch me w/o causing pain. I think the oral steriod really help with my pain-50% reduction of pain. He said, people don't respond to oral steriod if they have RSD. I said i read something it said some people may respond to oral steriod during the beginning phase. i also mentioned to him my injury was from the IV needle and the deterioration can be very quickly than usual. He could not believe i had it on both hands and a few weeks later, i also started to have symptoms on my feet. He also said it seems i know more than him and i don't need him. So he wants to go back next week again. No dx block. If it is not RSD, what's is? He can't tell me.
Need to go and stop here for now,
Take care!
Okay! I am back. I took a break to see my soap series. The second doc do not want to label me yet. He also does not offer nerve block at this time due to possible risk. He does not want to cause me another problem. He wants me to return in two weeks. He said some people may develop symptoms after trauma. Since i am responding to oral steriod. He said it is a good sign. May be the symptoms may go away. I thought that RSD symptoms will not go away on it's own. He also could not believe that i have symptoms on both hands and then a few weeks later starting to have symptoms on both feet. He said this is not typical. I think i told me that my injury was from a venipuncture and the research state that it can get worse or progress quickly. Any way, he dismissed my concern. The strange thing is that the doc can't tell me what is wrong with me if it is not RSD.
For the time being, i am stuck and don't know what i am dealing with. Even though i told these two doc, i started to have symptoms after the venipuncture trauma. Hopefully, i will know more in the near future.
Any thoughts on my encounters!
Have a nice weekend!
the thing is,when it comes to actual nerve damage,anything is possible to may or may not actually have RSD,it will show itslef more dominantly eventually if it is.the best way to find out whether this symptomology is stemming from a sympathetic issue or neuropathic would be to do the stellate block,really.i have whats called central pain syndrome in my left arm from spinal cord damage to the spinothalamic tract inside my cord,the two(RSD anf CP) are very similar in symptoms(i DO have confirmed RSD in my R knee tho),or more to the pain and intensity level.but CP does not have any visual changes or swelling,just the non stop hellish burning and stinging hypersensitive agony,just like with RSD.

when i first hit my new PM the very first thing he ordered for me was the stellate block just to confirm the Dx of CP and not it being RSD.when i had absolutely no reaction to the stellate at all but did have the horners droop,we knew he hit the right spot but i did not react(no change in pain what so ever) to the block,therefore,that particular upper hell was not RSD and he stayed with the original Dx of central pain done by my NS shortly after my surgery was done.the stellate block is really the biggest type of test to either rule in or out,sympathetically generated pain,which RSD is.i just think in your particular case,it really really needs to be done as a diagnostic test.

there are just so many really strange and freaky types of neuropathic pain syndromes out there that can occur anytime you have suffered actual nerve damage.if it is not actually RSD,there are alot of other things it could be ya know?it may not even be an actual real 'syndrome" at all but just the after effects of significant nerve damage.the main thing here is finding ways to try and manage the pain aspects of whatever this is that is causeing your symptoms.any real dx is merely secondary to pain treatment.knowing what it is tho would make treatment a bit better if you know what the real generator is,so getting that stellate,in my opinion,really would be the best next step for you.i wish i had better info for you.i do wish you lots of luck with this.marcia
I understand fully how confused you must be.. You know I have RSD in both hands and in both feet... I have no problem shaking the drs hands.. expecially in the beginning.. I don't always have the swelling.. I don't always have the redness and I don't always have the burning.. My symtoms can come any time they want.. It has a mind of its own.. AS for the block.. All that is used for is to determine if the source of the pain is sympathetically-maintained or sympathetically-independent. Pain relief following a sympathetic nerve block is evidence of sympathetically mainained pain that may respond to additional sympathetic never blocks . I think its important to distingusih from SMP and SIP because it impacts the approach for treatment.. In the early stage for me, I didn't have all the symtoms of RSD. Thats what made it so confusing for the drs.. I actually had them stick me with a pin and had no problems with pain.. A yr later.. everything changed.. I think this is what makes it so difficult to dx.
I suggest you discuss you fears and concerns with the dr.. Its so important that you are comfortable with him.. Don't get discouraged.. Theres alot of drs out there that do know about RSD. Usually the younger one do know more because RSD is now taught in MED school. Yrs ago it wasn't..
My thoughts are with you..
I think Neuropathy and some symptoms of fibromyalgia and MS. I only say this because with my symptoms they tested me for all of this stuff. I am not sure because I do not know all of the symptoms but I know ulnar nerve neuropathys can cause hand symptoms like rsd...who knows this crazy disease. We are here for each other though and at least we are here to help and brainstorm. Good luck...Nikki
I agree with you.. I was also tested for the same.. I can see the hand thing.. But I think she has it in her feet to.. Thats what kept confusing my first dr.. I kept telling them.. I have the same pain in my feet.. and they would say.. you don't have any lumbar injury and thats what controls you feet.. Well, I feel like going back and saying.. guess again buddy, your wrong.. Iam not losing it.. lol lol.
I would love to contact all the doctors that have said to me...
" That's what all junkies say"
" Your pain is not going to go away until your wc case is over" ( in writing )
My therapiast was telling me a story about her dad telling a patient she was not going to do something through suggestion and then when she needed to do it for necessity to live she was unable- got the hint all in my head
I am not going to replace your medicine should it "happen" to become lost, stolen, eaten by your dog.
Pharmacists are crazy- I just go to one- you just got this filled you have to pay full price. You are store jumping ( yeah another CVS all the same friggen computer)
Not to mention my friends that is the hurtful part!!! Will not bring that in because that just makes me want to cry!!!
Ignorant people suck!!!
Yeah I am sure I am going to learn about the legs soon and all the lingo.
Remind me to tell you what's going on I cannot talk about it no-not really ready but I have to share and if for nothing else to help someone else...
For right now Jaxobean just needs my space !!! Hugs:angel:
You take all the time you need girlfriend.. lol. I am not going any where... I was just reading an article about People with RSD and WC.. Iam not dealing with WC but I hear so many of you who are.. It said something in lines of this.. Bcause RSD is misunderstood. there re drs who are not familiar with it. and they perceive the symtoms to be in our heads. and that RSD is related to many cases of WC.. because of that.. the DRs view the pts that they are crazy and its all in their head. Which causes alot of stress with the pt. and leads to delay in DX and treatment. and also leads to more psychological problems on top of pain..
I just that was interesting.. What do I know.. Its true when you think about it.. There are so many people who abuise the system, take advantage of WC .. it hurts the people like us who really have a problem.. and this is why WC fulls around so much in approving treatments etc.. This whole system is so messed up... I wonder if anyone on WC can file a suit against them for delaying your treatment...
My medical bills are payed through auto insurance.. They stopped paying it for almost two yrs.. My lawyer filed suit against them. Can't wait to see how it turns out...
Shellygod ( michelle)
Thank you all for your contribution! Michelle, you are right. I think the doc are confused because i had it on both hands to begin with. It further complicate the matter when i mentioned my feet sort of going through the same process. I really think i will need to have the stellate block to rule out or in the RSD although there is risk involved. They had already rule out carpel tunnel. If problem comes from my neck, my coworker told me i should not have the skin change-extreme dryness and blothy red. I am so frustrated. Even though i try to seek help from all these doc, no one seem to take me seriously except the first doc who dx me in 1/2 hour. His partner is a bit more conservative and insist to have the MRI done for my neck before he offers me a block.
Well, May God bless us all. I know that we are going through different stages with this mess. I am glad we are here for each other.

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