BioBased,

Thanks for this! I was trying to go legit, but sometimes a woman's gotta do what a woman's gotta do! I'm glad this seems to be helping your mood. I could use that too. Mostly I want happy little glial cells. Thanks again for all your help through this I appreciate your wisdom and your insight.

Little Paw, Thanks again! I will look into these tomorrow.

when i first got rsd i had some drs pushing the scs on me after nb stopped helping and i felt that i had to do what the dr told me because he was the dr and the dr knows best. but luckily my husband to get a second opinion and i did and was told there were risks that i wasn't aware told about with my first doc. so i had to make a decision because i had two drs telling me to do two totally different things and i started freaking out. if it wasn't bad enough being in horrible pain all the time from a disease i had no clue what it meant, i had to be my own dr when i have had no medical training in my life whatsoever. that's when i found my voice. my courage. my strength. because like the quote i read said " you never know how strong you are until being strong is the only choice you have." well that became my only choice at that moment. so i took a deep breath, read as much as i could about scs and other options for treating rsd and i found this amazing forum which gave me the insight of others who have been living with rsd. i read and talked to them about what helped them and what didn't and why. and i made wonderful friends here and gained support that i needed so badly because i was really afraid of making the wrong decision. well i decided after serious thought not to do the scs unless nothing else worked. it would be my last resort. that's not say everyone should follow my lead. some people may respond well to an scs. some may not. everyone is different when it comes to rsd. all i know is that i was not ready mentally or physically for such a major surgery. did i do the right thing? i don't know. i take a mountain of meds that my drs prescribe that i'm sure aren't doing my insides very good. but they help manage my pain and i can tolerate them for the most part. i also try to keep moving as much as i can (which isn't much these days) so as not to atrophy anymore then i already have. even typing is very difficult for me but i try a little each day like my dr said for exercise to keep my fingers from completely freezing up. my wrist is already locked up probably forever. and i can't tell you how many times i go back to fix my typos and how i have to stop sometimes because my vision is now becoming blurry from the rsd and meds. so there are good and bad side effects to every treatment but i don't regret my decision for a second. and if i had to do it again knowing what i know now almost five long years later, i would still make the same choice. but that's just me. maybe you may want to try something else. and that's ok too. there is no right or wrong decision (i don't think) when it comes to knowing what to do with rsd. the drs don't even know for sure what to do. they are trying their best to help with what they know but you need to find a dr who really knows how to treat rsd. it's not easy but it is possible. or at least a dr who doesn't make you feel like you have to convince them to listen to other suggestions you may have to treat your illness. or at the very least listen to your feelings and pain and have compassion for you. you should never feel like you have to beg. and you should never be afraid to speak your mind. (calmly of course though, don't ever lose your cool.) remember that drs are there to help you not the other way around. and if they can't, then i would find a dr who can. just keep looking. you will find them. and you will find your voice and courage too. remember, you never know how strong you are until being strong is the only choice you have. remember you can do this!

Sorry RSD ME I did not see your post until today. I have decided I am not willing to try a SCS at this time. I have improved since my diagnosis rather than decline and to me it does not make sense to do such an invasive procedure at this point in the illness. If it gets worse it is an option I will consider. Problem is the docs that I have seen see this as my only option. I will not plead with them again. I will just say thanks and leave. I think that I may have found my voice. I'm looking into some other options. We'll see what comes of it. As always, thank you for sharing your wisdom and experience. I'm convinced that the support that I received from all of you helped me bounce back quickly from a rather negative experience. Hang in~mac

mama mac, i am so proud of you for finding your voice! i know you can handle you drs. just stand firm with what you want to do to manage your rsd pain. it's your body. and if they don't agree, then find another dr. my dr told me that getting complications from an scs was rare and i told him that getting complications like rsd from a broken wrist was rare too but i got that. so to me the least invasive first is best and there are quite a few less invasive procedures you can try and if they don't work the scs will stll be available. i don't want to tell you what to do or what not to do. i am not a dr and it is a very personal decision along with getting several opinions from other drs and people on this forum. but i want to share my experiences with others so that maybe i can help them find their voice. i am so glad you found yours! and when you face difficult drs or other people, just remember that all your friends here on NT are standing beside you in spirit backing you up with whatever you decide to do because we all know how hard it is to live with rsd. more then any dr ever will. i hope you can find another dr who can help you manage your rsd pain better soon. i have a feeling you will. i know you can handle this and again i am so so proud of you! sending soft hugs to you my friend.

Hi Mamma mac,

I wish you good luck with your visit with your new PM doctor.

There have been so many good suggestions that were written to you here from all the caring people on these forums.

IMHO, I feel that for me it's important to have a doctor that does think out side of the box. Researchers from time to time are finding alternative, off label uses for medications and other modalities to treat conditions that are hard to treat and don't respond well sometimes to conventional medications, therapies or treatments.

My PM doctor and I work as a team.

He may suggest things to me and sometimes I research them before I'll try them or not. My dr. communicates with me and he respects my decisions even though he might think otherwise.

He wants me to feel comfortable with what ever choice I make at the time. He is open to looking into something that I might have read about, but after he researches it, the final decision is of course his.

I admire and respect him so much for including me in the process of trying to help my pain get to a manageable level.

Good luck once again and I hope your doctor works out for you

BioBased, I'm really surprised they have not offered you stellate ganglion blocks. I know they are most effective when you first develop CRPS and become less effective later on, perhaps that is why they haven't been recommended? I may be behind on this on research, as I had these SGB's done a decade ago, at that time, they were considered the first line treatment for CRPS. There are quite a few scientific articles on their effectiveness. Also, have your doctors (if they are opposed or you are to opiates) at least tried a trial of catapres or clonidine or an additional or different anticonvulsant? I'm sorry you are having a hard time with the doctors. Some doctors are definitely better than others and it can be very difficult to find the right one.

Meg,

Right now I am grateful that I got little for pain relief, because it drove me to try LDN. I think LDN is a miracle, because very quickly I went from agonizing pain and being unable to walk, to moderate pain and mobility. It saved me from taking a bisphosphate and/or begging for a refill of hydrocodone.

My opinion is that LDN should be the first choice of treatment. It is affordable and has few side effects. I pray every day that LDN becomes available to everyone who could benefit from it.

Sorry I have not been posting lately. I was quite suprised to see this thread come alive again. Vintagewine, thanks for the kind words. I have recently found another PM doc that is a more willing to try different medications. Bio, he started me on LDN!!! I have it compounded at a local pharmacy. It's been about 3 weeks now at a 2mg dose. No side effects. It seems to be calming the burning nerve pain. It does not do much for the crunching bone pain, but less pain of any kind is certainly welcome. I agree Bio, I wish more people were offered the opportunity to try it, with a doctors help. I fought for months for this. I am hoping for continued improvement over time. ~mama mac

Hi BioBased, I'm not familiar with LDN. What does that stand for and how does it help? Does it help with pain, inflammation, nerve pain?? Is it a supplement? Thanks, anything to help. I am having a terrible time unfortunately due to a possible major new medical issue and an exacerbation of my CRPS after a fall, so any distraction is appreciated.