Different things work fior different people my RSD is so severe because I have been shot (lets just say more than once please)I have tried everything since 1968 where I could be one of the guinea pigs .being given Sea Snail venom ,Lion Fish Venom ,Hole drilled into brain and it goes on and on . Medication takes the edge off for me so I can survive . Meds are serious and I have always taken as prescribed . Some people do not do well with medications for many reasons .Often they get anti Medication because they can no longer get medications due to mistakes made ior just where they live .I don't attack SCS or the Pump or any other so please I understand how bitter people are about meds when red Flagged especially . If you could just worry about your own treatment and let others do what they will maybe some anger will dissipate . I understand that you are "Just SAy NO" or meds made you sick or your faith doesnt allow meds and trying to get cured without meds is your choice and I applaud that .
I think most of us would do all we can to help another so please allow us our choice if it is medication .It is scary to think people instead of being behind me in my succesful 44 years with RSD would deny what has been working since the 1980s (I went over 15 years without meds but my quality of life was gone .
I can't believe I would feel I need to write this here and I pray that whatever your choice (at least in the USA we have that freedom ) and may you choose what is best for you
Sincerely rsdno

Amen to that RSDNO! You said it right. We are all different and what works for one of us may do nothing for another...I agree. We all need to be as educated as possible as to what our choices are and then we need to make a decision based on what are needs are. But it is really nice to be able to vent to each other here (as most people without rsd just don't get what we got through each day to survive), find out what other people around the world have done to try and get rid of rsd or get it into remission, and then for us to receive support from one another is a great thing...at least for me. Since I have full-body rsd and some other fun things it is close to impossible for me to go out and be social so I can be social here with all my rsd friends!! I have met some great people on this site. But like in talking to anyone physically or in cyberspace I always weigh what everyone says carefully. When I am having a bad day I get online here and find others having the same issues. It is a great place that offers support almost instantly.

You have had rsd since 1968! Wow. You deserve the Medal of Honor for fighting for so long. You are my hero!!!!! Best of luck to you and keep up the great work!
kathy d

Thank God for the voice of sanity.You are unbelievable to have lasted 44 years with this. I tried drugs and they made me ill but I agree the quality of life is pretty poor now. Do what works.

I wasnt sure if I wrote a thread on this but my 44 years with RSD doesnt mean I am in begtter or worse pain . With RSD we all l.ive in the now the Future I guess remission(I was RN only rsders that I knew who went into Remission one for 7 years another for 22 years and suddenly the remission was over talk about a heart break . I think there is something with pregnancy the mothers body needs to be in good shape for the baby and the body helps . Please understand I was just a RN only saw a couple cases though I was mostly 5 or 6 months in another country the Nurse at huge construction sights then I would work a week or 2 so nurses could take their vacation . RSDers please remember we all hurt in this instant (I dont want to sound corny like you are my Sisters and brothers in pain
Gentle Hugs
rsdno

rsdno
I completly agree with you, everyone is diffent and should have the right to choose their treatment without fear of ridicule or other peoples comments. I myself am medication free really only because of a very low tolerance of meds. Personally it suits me and am happy to not take medication. But in saying that I do not look down on people who do take medications to help. Each to their own, we should support each others choices and not pass judgement.

Hi. I totally agree with the former but not necessarily the latter of your assertions.

Put it this way: If you had posted about a particular drug or treatment you were using, and someone was aware of a recent study or official warning that clearly hadn't made its way to you, wouldn't you want to know about it?

And to those who say that this is a "support forum" on account of which information shouldn't be shared if it will cause anxiety, I'm sorry to have to disagree. Yes, we are all here to support each other, and anyone who doesn't feel that way had better give them-self a long look in the mirror. But sometimes, and only sometimes, being a friend requires that we say something knowing that it will likely be painful to hear.

Mike

PS And for what's it's worth, I suspect a good many of the people who know me would be surprised at how often I hold my tongue.

I think this topic is a very important one.

1) We are here to support each other

2) Everyone responds differently to different treatments

3) We may have made personal choices and can describe out personal choices, but that is not a prescription for other people's personal choices.

4) I want to know what other people have experienced and what led to their medical choices (decisions) and how they responded to their treatments.

5) I am intelligent enough to respect the views of others, but retain my right to select the therapies which I choose based on my response, my physician's input, and whatever research I have found.

6) I expect that others have the intelligence to separate personal preference expressed on a forum, knowing that this is a condition which manifests differently in each person and responds differently to identical treatments in each individual.

7) I would not want to feel that we need to censor responses to the degree that we cannot present our own viewpoints on how our treatments have affected us, or our choices about treatments, but do agree that we are not physicians and cannot tell others what they should or should not do.

Thank you for bringing this topic up.

Aloha,
Jenny

Hi Michael
I should have been clearer by other peoples comments I should have specified negative comments. When I was on medication I recived quite a few unkind comments from people usally around the amount of medication I was taking and I don't think they were particularly helpful. But yes I agree if someones comments had new information on medication I think most people would be happy to hear it. I am always happy to try new medications cause you never know if it will help, although I am med free a the moment thats not to say in the future if there are any advances that I would be open to try a medication. I think everyone is so diffrent and you can never tell what will work for someone.

I agree! We definitely need to respect each other's choices in treatment (or no treatment). Sometimes other issues rule whether or not we can take meds for RSD...or even a simple headache.

rsdno...I appreciate your comments and really just saying it plainly. You've been dealing with this monster all my life...that's amazing and sad at the same time. But obviously you know Where to find the strength you need to get through each day. I'll be praying you continue to be strong.