Unfortunately, I believe missing SOME outings is just something we have to get used to. I have a tough time getting some friends and family to understand that it's not just THAT day. To go out on a Friday, I have to make sure that I really take it easy Wednesday and Thursday for there to be any hope of getting showered and dressed for a Friday outing. If I do that and take extra meds, I can usually plan that Friday outing. It does sound like my doc is more generous with the needed meds for me than what you are dealing with. I've still missed outings when I've planned well, but then my ride falls through. If I have to drive, I can't use my pain meds. I have a very difficult time getting dressed without meds....and many days just CAN'T do it. It stinks missing out on fun times with family and friends. I feel like if I could just wave my magic wand and "appear" at the outing, at least I'd feel a little better with the distraction from pain that socializing can bring. My magic wand would also have to have me be bathed and dressed, because it would be too depressing to enjoy the event if I was there with my greasy hair in a bun, wearing my smelly nightgown. I'd frighten people away.

It stinks to lose out on fun occasions. It's ANOTHER loss that comes with our condition.

I get the feeling from your post, though, that you are missing out on even more events then would be necessary if you had adequate pain control. That REALLY stinks.....and shouldn't be happening. I spent many years in a similar situation. It makes you feel even worse...as if RSD weren't crappy enough ! It might be difficult finding the right doctor, someone who "gets" it, by those docs are out there. It took years for me.......constantly made to feel worse by the "it's not RSD, it's all in your head" and "I hope that you don't think you are getting any narcotics from me" comments and attitudes of several so called health professionals. It's a VERY frustrating journey. I'm relieved to be in a decent, though not perfect, place now. I hope that you'll be able to get here too.

You need to get in touch with your doctor to see what the heck he is thinking ASAP. RSD pain doesn't decrease just because he might be uncomfortable prescribing pain meds long term. I'd tell him it's HIS job to find the right med mix OR refer you to a doctor who knows more about RSD and is comfortable helping you manage your pain. Your doc might be done doing testing and unknowledgeable about newer treatments like ketamine, etc......that doesn't mean he gets to let you go inadequately treated.

I have this fantasy life that someday I'll feel good enough to be able to work again, at least part time, so I could work as a patient advocate and go to appts with people suffering from inadequately treated pain and be clear to the doc exactly what the patient's homelife and suffering is like and demand a better pain management plan. I'm not usually a passive push over, but I've felt run over and greatly misunderstood on soooo many doctor visits. Being in pain and dreaming of my bed instead of being stuck in the doctor's office became my focus. It was so hard to explain myself and stick up for myself. I dreamed of having an assertive advocate to stand up for me.

It is difficult to find the right doctor and the right doctor patient relationship. I think you should try to discuss this with your current doc and see how much he is willing to work with you.....and for you. After that discussion, you'll have a clearer idea of if you need to change docs. If it comes to that, try to be clear with this doc that it is his job to help you find a doc who can help you manage your pain if he can't.

Good luck. I'm sorry that you are dealing with this.