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 10-26-2006, 09:37 PM #1
hideej76 hideej76 is offline
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Smile Specific Questions To Ask The Doc??

Hello Everyone!! I want to give a big Thank You to everyone that took there time, and responded to my last post "How Fast Can RSD Spread"? I really appreciate everyones responses and advice!! Means alot to me!!

Anyhow since my post, I have been doing some what better...Still am expierencing the burning/stinging/shock like sensations here and there all over my body, but the pain doesnt seem as intense as it was a couple of days ago...

So, I see my Neuro-Pain Dr this comming Mon...I am curious to what I should ask him as in certain or specific questions regarding my RSD case...I know a few people had mentioned if Ive ever had blocks done..The answer is no..Is this something I should mention to him? When I was was diagnosed with RSD back in the end of August, he put me on steriods for 5 days (dont take them anymore), Neurontin 300 mg every 6 hrs, Ketamine 5%/Lidocaine20% compound to apply twice daily, and physical therapy with the Fluidotherapy sessions...Blocks were mentioned by him, if the Neurontin and therapy wouldnt work...Do you think that I should ask him about a different med, antidepressants ect?? I have read that many ppl with RSD take antidepressants, at this time I do not..Yes, I have more mood swings then I ever normally did before being diagnosed!

Any suggestions from anyone out there that had ideas of what to ask my Dr I would appreciate..My b/f is going with me to the appt so he can talk to and ask questions to the Dr as well...He wants to hear first hand what the Dr suggests ect...He has been very supportive and wants to get more involved with my RSD case...I am very thankful for this, the support I have from him, helps me so much!

I am hoping that the burning/stinging/shock like sensations are nothing, that possibly could be a side effect from the Neurontin or just something simple...All I know is I never had anything like this before happen to me...I will know more when I get to the Dr..Cant wait till Mon, thats for sure...Will feel alot more relieved when I find out for sure what is going on with me!!

Take care all, and thanks again!! Your a great bunch!!

--Heidi
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Old 10-26-2006, 09:46 PM #2
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are u getting any relief from the meds your taking? cause there's like a million and one different kinds/combos they can try. blocks seem to work pretty well in the beginning, but ya never know till u try them. there's also like other injections and infusions u can try.

hm... maybe we should start a treatment/medication page...
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Old 10-26-2006, 11:37 PM #3
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Well, I was started on the Neurontin the end of Aug when I was admitted to the hospital...I noticed a change in the pain that I was having about 2-3 days after starting the Neurontin when I was in the hospital...To be honest, almost felt like I did a complete 180!!! Seriously, I was able to start walking better on the leg that I had the RSD, wasnt really limping anymore, and could almost complete pressure on it...I mean, of course there was still pain present, but felt amazinly ALOT better...At discharge, my Dr continued me on the Neurontin..I have been taking it since...So, I guess to answer your question, "am I showing relief from the medication"?? Yes, I would say I am..But, what I am concerned about is, is it natural to be getting the pain else where in my body? Its just not in my foot/leg anymore..That is where the major pain is, and seems localized, but Im getting burning/stinging/shock like sensations other places throughout...So, is the Neurontin not doing its job that is should be?? See Im new at this whole RSD diagnoses, so Im still of course full of questions!!!

Im just curious to what type of questions ect I should bring up to my Dr when I see him on Monday...I mean of course, I know what to tell him as to what is going on with my body ect...But, as for different type of treatments, medications ect to talk to him about, Im not sure of...

Im still feeling as of right now, my goodness so much better than I was back in August!! The pain that I expierenced then, I cant even explain...Ive never expierenced such pain in my life!! Ive been through to this day 14 surgies...Including, 10 piliondial cyst surgies, 2 tonsilectomies, apendectomy, and lumbar laminectomy L5-S1 (being most recent...Aug, 06)...The pain that RSD, and everyone knows on this board what I am talking about is the most unbelievable pain ever imaginable..Being through numerous surgeries in my life, the RSD pain has been the worst..

Anyone with suggestions to help me out, so I can go in prepared to talk to my Dr...Greatly appreciated!!

--Heidi
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Old 10-27-2006, 07:06 PM #4
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rsd can have a mirror effect, because of the nerves... so its common to get the same pain on the opposite limb or area on your body. and then also any kind of trama from a mosquito bite, needle prick, or surgery or broken bone can cause a spread.

for me i get a lot of extra pain in my shoulder because my shoulder muscles are over compensating for not being able to use my hand and lower arm like normal... so there are things like that too...

as far as questions... u might wanna make a list of like your main "complaints" about how your feeling and see if your doc can come up with a way to help minimize those. you can mention that ur talking to all of us and hearing about other drug therapies and blocks and infusions and see if they'd be willing to try that with u or if they'd be helpful in your case... it also depends on the types of things you're willing to try as well. not everybody wants to be trying a bunch of new meds or doesn't want to go to the hospital to have needles injected in their spinal area or neck.... (they do give u mild sedation and locals for those!)

do u know if your doc has many rsd patients? the amount a doc knows on rsd and the treatments can also depend on whether or not he's a private doc or in a bigger clinic like at a university... in my personal experience the docs i've seen in the bigger clinics are more up to date with the newer and experimental treatments and are more willing to use them then the private docs (they like being involved in the research aspect of it).

i hope all that helped!
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