I would like to extend my sympathy to whgat you went through. The neurologist I am seeing said a lot of what you just heard with one exception, he was very sympathetic to my having crps.
He said right now the best to offer was a list of ms drugs that have been prescribed for CRPS. LDN was is one of them. But he is willing to work w MY needs. Wish you had that too.

Oh mama, I know what you are feeling.

My PM doctor supposedly trained Dr. Chopra, but will not offer me much of anything Dr. Chopra green dot listed. So far I have gotten neurontin. It doesn't cut it.

After waiting months to see this doctor he told me to "doctor shop" to find someone to give me the bisphosphonate infusions. Someone "might" give them to me.

I feel as if none of the people know squat about CRPS, because if they did they would know a CRPSer likely does not have the wherewithal or the energy of the unafflicted to be hunting down doctors. I have limited energy.

I believe that because there are no set guidelines for treating CRPS the doctors are afraid to be "experimental," which often translates into no treatment.

It infuriates me to read what others got or are getting here for treatment, when I have gotten literally nothing, despite seeing many doctors. One doctor told me he might give me lidocaine or topical ketamine. "Maybe in a couple weeks." I never went back. I needed help right then, not in a couple weeks and certainly not "maybe." Perhaps if he had helped me cut the pain then I could have made better progress.

Mama, I was warned never to google by multiple doctors. "Never." You have to wonder why researching your illness could be wrong.

What has helped me the most is the LDN I am using to self-treat. And before anyone gets upset about it, let me add this, I contacted one of the big CRPS doctors by email who did not admonish me or lecture me for going down this path when he responded. Although, he did offer to see me in his office. If I had the wherewithal I would go.

PT is another positive. Epsom salts baths. DMSO. NOW MSM and arnica cream.

Bio Based,
Thanks much for your reply. As if the illness is not frustrating enough, we have to add problems with access to doctors that are willing to treat the illness in a creative, individualized way. There are no drugs approved for this illness so anything that is done does not have solid research to back up efficacy. Nerve blocks are known to not be very effective, except for people diagnosed very early, yet they widely used and paid for by insurance. SCS units shown to be no more effective than ketamine infusions and are far more invasive yet they are being pushed like the only option. I've been to Southwestern Medical School, one of the supposed best PM doctors in Dallas and now this yo-yo in east Texas. Most of these people's worst nightmares seems to be an informed patient that knows there are other options. Excuse the rant.
No judgement on the LDN. Chopra states in his video that it can be purchased in India, with no script, at a low cost and it can. The problem is the mg. I'm glad you found someone qualified to help.
I've been in PT for months and it has helped. On Lyrica but not working well enough to justify the side effects. Last 2 docs have agreed on this. I'm taking magnesium as suggested by Chopra. Epsom salt OK but can tell much difference.
Thanks for the support and suggestions. I guess we just keep trying. Here's to a good tomorrow! ~mac

hi mama. i'm so sorry you are going through this. when i was first diagnosed with rsd i went through something similar. the things i have learned in the past four and and half year of living with rsd and dealing with drs is this:

1) learn to be your advocate. don't just do whatever the drs tell you to do. i'm not a dr and know i need drs to help me manage my rsd pain, but i have learned to get more then one opinion to confirm i had rsd and before making a decision on how to treat my rsd.
2) after i get several opinions, i research all the options out there and that were given to me on how to treat rsd and weight the pros and cons.
3) after i weigh the pros and cons and see what risks are involved i look the for the least invasive treatment to try first and make sure i am comfortable with that treatment.
4) i make sure to bring pamphlets about rsd and pass them out to all of my drs so if they don't know what it is, they can educate themselves on it and pass it on to other patients who have rsd so that they can educate themselves on it.
5) i never let any dr get away with telling me that rsd is all in my head. i kindly disagree, hand them a pamphlet, leave their office. then i cross them off the list of drs that i want treating me.
6) i never accept a dr trying to scare me into getting a procedure done that i don't feel comfortable with by for example telling me that if i don't do it by a certain deadline there will be no way to manage my pain.
7) i never let a dr tell me that should be treated the same as fibromyalgia. rsd has visible symptoms as well as widespread burning pain where fibro has no visible symptoms and widespread aching pain. though i have both, i know by reading and by experience that they are totally different and treated differently.
8) i always make sure i know the costs involved in procedures suggested because i was told that some procedures are very expensive and may be a motivator for some healthcare professionals to want to try them.
9) i never let any dr treat me like a lab rat. i am a person who has feelings and is very sick and want to be treated with respect and compassion. if this is not possible, i walk away.
10) i never stay with a dr who says that rsd doesn't spread especially with surgery when i know by reading and educating myself that is not true. i also know because i have had my rsd spread and it is very obvious. you just know when it happens.
11) if a dr asks me how i feel or that i look fine, i tell them that i feel like crap all the time because i am in constant pain from my rsd and that i may look fine because of all the meds i take to just be able to get out of bed, shower and make the trip to see that dr. i don't go back to drs who say things like this. they should know that with rsd you never feel good and looking fine doesn't mean you feel fine.
12) i always follow my gut. even if i am not a dr, there are some things i am wary of like the scs. some people swear by it saying it has helped them alot. some people say it didn't help and had too many complications like twisted leads and dead battery packs. i am not saying i will never try it, but it will definitely be a last resort for me. for now the pain meds and antianxiety meds i take along with a home exercise program doing mild stretches to try to keep my hand and wrist from completely atrophying work best for me.

i hope that whatever you decide mama, that you find a good dr who can provide some relief for your rsd pain soon.

Mama,
I followed Chopra on the LDN.

I bought the 50mg pills as he advised, put one in 50mgs of distilled water, put this in the refrig until the fillers separated. Shook the mixture. Put it back in the refrig to let the fillers settle again. Done. I started with a tiny dose and built up to 4.5mgs. There are YouTube videos showing how to do this. I may drop down a bit, because I have read that 4.5 is a good dose for those at 150lbs or above. I weigh less.

My mood is dramatically better. I no longer sob all day long.

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.

RSD ME,

I think that we just need to copy your post and give it as a guide to the newly diagnosed. Thanks for taking the time to write all of that down for me. So many good suggestions and words of wisdom. I need to develop your courage in dealing with these doctors. When I walked in and said I didn't want a scs and he said that is the only recommendation he had, I should have said thank you, BYE. Instead, I find myself trying to convince them that there are other options, almost begging. I begin to feel desperate and then just horrible.
I am so sorry we all have this illness, but I am so glad that I found all of you. Thank you. :hugs:

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.