Hi everyone,

I met with a new PM doc yesterday. When I told him that my last few SGB had helped with certain of my spreading symptoms, he explained that it was impossible for a SGB to impact any symptoms related to my legs and feet! Talk about embarrassed! He explained that often when patients start to feel better after a block in some areas where they are expected to feel better, they will also start to better in other areas that are in no way impacted by the block (like my feet!).

I KNOW that my feet were painful before the last block, I was really scared. I just find it so hard to believe that it was all in my head. And after I walked on them a lot they would go numb - that was NOT in my head, we all know what that numb feeling is with RSD. They were also freezing cold all the time. And my sneakers always felt like they were too tight so I would take them off. My legs used to bother me so I would sit on the end of my chair all the time. After my blocks I swear those symptoms went away for a while, and then I would feel them start to return in 2 or 3 weeks.

Other symptoms that would go away that WERE expected to were the really bad red rashes on my chest and neck and face. Plus most of my fingernails would start growing again on my right hand.

Has this ever happened to anyone else?

My new doc all wrote me a script for methodone (5 mg 3 x a day) for pain. That is a little freaky, but my NP friend told me it should be great for my pain and will have fewer side effects than all the percocet I'm currently taking.

Happy Friday!!

Sandy

Trust your body and trust what you feel. Don't let anyone tell you what you feel is in your head. It might have nothing to do with the SGB after all, who knows, but that doesn't mean you don't feel what you feel. I don't think the doctor was trying to tell you that it was in your head, just that it wasn't or in his opinion couldn't be from the SGB.

I have no experience with SGBs, so I can't help you with that.

i agree i dont think it was in your head.. when you are feeling better then your whole body starts to feel better. i am glad to hear that you are getting good results from your blocks. also when starting methodone do understand that it does take 4 days to build in your system,, so you will take it and then think it is not working take some more or they up your dose and 4 days later you have a whole lot of methodone in your system that can be fatel. i have a couple of friends and family that takes methodone and that was streesed to them about the medician. i hope that is works for you and gives you many pain free days and nights... take care michelle

Pain and feeling pain relief is not in your head, when one is a RSD patient. Keep your chin up, and realize that objectively, your doc is telling you what he knows to be true. RSD is not a black or white disease, or there would be more definitive tests to diagnose and treat this culprit.

Enjoy your pain relief moments, and don't worry about the stuff you can't control. You are not a malingerer, and your doc knows that,too. If he thought you were, you would NOT receive the blocks at all.

I agree with the others- Trust your feelings- they are real. The only thing cetain about RSD is that the pain in uncertain- No one can say anything definate about it because even the doctors don't really understand what we go thru...

Debbie

I agree with everyone here. as usual.

The methadone will help. It's a very small dose.

I don't know what else you take, but I've been on methadone since 1990 or so, and been from 10-15mg/day, up to a 100, now settled at 50-60 mg/day.
With other meds in the cocktail.

I wish you the best with you new med.
At that dose, side effects shouldn't even be noticeable.
The dose I take now, and being less active than I used to be, I need to take Miralax, (Just a little) to well, keep things moving...

Feel Better!

Pete
asb

Thanks guys for your responses! I feel very fortunate to have people that can "relate."

Have a good one.

Sandy (from RI - where it is, of course, raining....)

You know after so many doctors I have heard so many different things from doctors and have experienced too many "flukes" as I call them that they say are not related to either a treatment or RSD. I have also gotten such a range of how I will be in the future that often I feel many of us are a big guess to doctors. There is so much unknown about RSD and since we are all different who knows. I bet if you went to a few other doctors and asked similar ?'s you would get a range of answers. On a side note I do feel when one part of your body really hurts it can cause other parts to feel sore as well for either compensation or it just makes one whole body ache. I hope you get relief from methadone too

Daniella,
My local RSD friends and I call that the "Test Dumby Syndrome" with the doctors actually having to "learn" from us. Even the best of them.

An Egotistical doctor, who "knows it all", is NOT a good choice for someone with RSD.

We need a doctor who accepts what we say, and may not be able to "fix" it, but will still believe us and, "IN us".

Be well!

pete
asb

Hi Sandy,
I think a very good and sensible reason for the absence of your lower body symptoms after an upper body block is that the SGB helped your upper body vascular system as it is suposed to, thereby reducing the swelling and pressure in the tissues, and consequently relieving some of the pressure and symptoms related to that very same vascular pressure as well in the lower body..

What these doctors just don't get and we can feel, is that the vascular system IS conected throughout our whole body so what they do to one area efects the rest.. This same vascular system seems to be one of the the prime spreading systems for RSD. So it works both ways aparently, and that to makes alot of sence dosn't it after all the sympathetic nerves run along side the veins and main arteries, the vascular system.


believe in yrself
Doc's r guessers
They can't feel it
!

S