Really.....you guys are the BEST. I think I would lose my mind for good (and not want to find it) were it not for this forum. Gymjunkie, you expressed my feelings verbatim. It is already tedious trying to explain this disease to everyone who treats me. I've only had it for 6 weeks. I had some basic brochures I had printed out from RSD.org that I would hand out to people. I found them describing the disease very vaguely....almost inoccuous sounding. I ran out and haven't printed more.

The last time I went to one of the hospitals for my injection, I had to fight with the nurse to understand WHY I needed a numbing med before my IV. "I AM NOT A WIMP, I said.....this is about how my dysfunctional sympathetic nervous system perceives pain, I said......it's already spread to my right foot.......I do not want it in my arms/hand too. Look at my purple and blue feet. Would you???" I MADE them page the doc twice to approve it. I had already called his office the day before MAKING SURE it was available to me. Apparently, he didn't get the memo. AND (I may not have mentioned this) despite having an allergic reaction EVERY FREAKING TIME they've injected me before, they waited until AFTER my injection to give me the Benadryl. It only made the rash worse and itch like crazy. I even reminded them before my injection to give it to me BEFORE the injection. I don't know what they're putting in my IV and not. I assumed one of the meds was the Benadryl. Then, they only gave me half the dose until the doc was convinced the rash was, indeed, bad enough to warrant the full dose. I didn't know THAT until they had let me suffer and itch for 15 minutes, wondering to myself why the Benadryl wasn't working this time. $^%$ idiots.

I do NOT want to be bitter and angry. I would LIKE to suffer with this wretched disease with grace. I would LIKE to be treated with respect and compassion by the medical profession. I would LIKE to be able to support and help other people suffering from this and be an advocate for us.......ESPECIALLY since I still have my mobility right now.

So, thank you all for your support and advice. I allowed myself to be put on the Lyrica thinking I would attack this from the medicinal perspective as well. I've had such a bad reaction to it, as I do MOST meds they try me on (I always HAVE been super sensitive to them), that I feel stuck with just dealing with the pain.

So....that brings me to my next question (probably a separate post in itself).....is it bad for this disease to "suffer" with the pain if I can cope with it??? Will that make it worse??? or spread???? I don't have such severe symptoms MOST of the time, so I usually just take Advil and deal with it. Should I be trying to numb it all together to calm my SNS down??? I really HATE taking pain meds. They make me sick and constipated. I HATE them. BUT, if taking them around the clock for a few months might settle things down in my body, I'm willing to do it.

Oh, and I will mention the med you mentioned to my doc.......perhaps my psychiatrist on Friday (next week) as HE is nice and caring and takes the time to LISTEN to me (and NOT while searching ebay at the same time.....yes indeed.....my Pain doc looks at ebay up until the moment he's ready to give me the injection. I USED to think it was funny, until I realized I can't ask him legitimate questions about my condition because he won't look at me). #!$& !@@ holes!!!!!

Thanks to all!!!

Hi MominPain
I know that you aren't keen to take lots of drugs and you don't like the side effects - nobody does. However, if you want my honest opinion, it is not worth doing "suffering" and getting along with basic meds if taking stronger stuff is actually managing the pain properly. It depends on whether you are "suffering" the pain and getting by rather than properly managing and controlling it - only you can reflect on how you feel and answer that one.


I read your posts on the reaction you had to Lyrica - again, if I can be brutally honest, your reaction wasn't that bad!! I know it probably didn't feel like it to you but a bit of postural hypotension honestly isn't a big deal, its unlikely to do you any harm so long as you get up carefully and if I were you I would persevere for a few weeks at least to see if it passes. I am also very drug sensitive but often the side effects pass.

You need to dig deep and accept that none of the medication comes without side effects but a bit of experimentation, living with the side effects and patience can reap huge rewards. You will eventually know what balance between effectiveness and side effects is acceptable to you. However, I would really urge you not to give up too easily. I have been fortunate to get very good pain control but it has taken over a year. I have stability and what I regard as very good control in terms of the pain such that I am able to work, my mood is completely normal and I have a life and hobbies, albeit now as a wheelchair user.

My own personal view is that you should throw as much as you can at this in the early stages to try and get good pain control. If you read the clinical stuff on the physiology of emotion and pain it is pretty apparent that the more control you get over the pain, the better your emotional state will be. It gives you the best chance of restoring movement and normality. Cross the drug tolerance bridge if and when you come to it but what is the point in worrying about it now? It may not happen to you.

I have struggled with sickness from oral opiods but the patch based ones have been excellent - both buprenorphine and even better, my current one which is Fentanyl - I was given free rein by my GP with both drugs to increase/decrease the dose until I got a level that worked for me. A 50mcg/hr fentanyl patch does the trick and that dose has been working very well for me for a few months now. I also take a base of 4 grams of paracetamol per day plus Cymbalta which works very well for my neuro pain but only at the full 60mg dose (30mg did nothing). I take laxatives every day to deal with the constipation. I don't like it but its better than being in pain.

Nobody is a hero for suffering the pain. If the meds no longer work for you then that is different but you need to persevere with some of these drugs. My advice is be prepared to give them a bit of time, accept that you need to experiment and sometimes you also need to take additional drugs to combat the worst of the side effects.

Just my thoughts and I am sure not univerally accepted but pain management is very individual.

Hi MomInPain,

I agree with what GymJunkie said, if I was you, I would try some of the medications that the doctors offer to you to see if they work for you - if they don't, then I would come off them and then try something else. I know you hate taking the medications, I think everyone does but IF it stops you from being in so much pain and the benefits outweigh the side effects, then I would probably have to choose taking medications.

At the moment, I am not on ANY medications. Non of the meds have worked for me and I have tried all of them - the only one that offers me relief is Ketamine but I am only allowed to take it when the pain gets really bad as my doctor feels that it could affect my hormones due to my age. I've been told that my pain is Independently Maintained which means that it basically has a mind of it's own and the meds probably wont work in my case. The Doctors also believe that the RSD could have spread into my brain and Spinal Cord which is why nothing works for me.

For me, I feel better off the medications. The pain hasn't changed at all and is still between a 7 and 8 on a daily basis but I don't have to deal with some of the side-effects that the drugs have. I also don't feel as drowsey which means I am able to do more things when the pain isn't too bad.

Everyone is different though and I would really advice you to try most of the meds and then if they don't work for you, come off them. My Doctor told me to give the medications a month to work and then if they don't seem to be helping, to call him and he will tell me how to wean off them.

I know you hate taking medications, I did when I was taking them but IF they are helping you and the side-effects aren't too bad, I would take them as you don't deserve to be suffering in such bad pain! Please be prepared though to have an open mind and if one med doesn't work for you, ALWAYS be positive and think that the next one could work!! The way I saw it when non of the meds worked for me was that I was one step closer to finding the drug that would help reduce my symptoms!!

Take care of yourself and if you have any questions, please let me know. Please keep us updated when you can!!