I got my trial on May 23 and they took it out on May 28 because I was in so much pain from where they put the leads in my back. It felt like I had just had major surgery but with no pain meds to get me through. I could barely move and I pretty much cried the whole time I had it except for the last day. It did start to feel better, which makes me wonder why they took it out. My daughter is 6. And it is hard to get family to understand. You would think they would understand the most because they see you the most. Then I have a sister that thinks she has CRPS now and tells me it isn't that bad and I just need to not show my pain like she does. LOL All I could do was laugh at her. If she really had any clue! But she is not a very nice person.

I'm sorry for all of the physical and emotional pain you are dealing with now, Angelina.

As disappointed as you might be wit the failed SCS trial, I suspect that you may have dodged a bullet on that one. I've just read too many horror stories here about SCS's (or, worse yet, initial glowing reports that turn into horror stories a year or two later) to feel that they are a good long term solution for us.

It's disappointing when anyone doesn't "get" our pain issues. When the person is a close friend or family member, someone who we thought "got" it or someone who we (thought we could) rely on, the emotional toll is so much worse. As traumatic as it can be, I'd rather know NOW, when I'm only on my sickbed, then be disappointed by someone when I'm on my deathbed, when there is no time left for me to find someone who can support me.

Is your medical team working on finding some other options for helping you get a handle on the pain ?

No, as far as I have been told I have been left to myself. I don't know what to do anymore. Plus my doctor just cut my pain meds down which has put me stuck in bed and crying/screaming pain for 4 days. Arggg I am going to have to talk to him and get him to put me back on what I was taking because at least then I had a fighting chance at a somewhat life. But right now I can't do anything. And then yesterday my right leg was in so much pain that I couldn't stand it and it was purple with bruises up and down it, so I am scared that it has spread to my right leg! I am trying to not freak out or stress out about it because I know that will make it worse, but I am scared!!!

Angelina, please please PLEASE find another doctor who has some knowledge and humanity. This is an intolerably cruel situation your doctor has left you in, and he should be struck off

I know a fight is the last thing you want when you feel so bad, but I hope you have a friend or relative who can help you. You can't let this man ruin your life when there is so much of it ahead of you.

Good luck,

Bram

Did he explain why he decreased your meds ?

I could understand if meds were increased for surgery or another procedure that could add more pain, it would be reasonable to try to go back to the pre procedure med plan a short time after.

Is he just decreasing because he has decided that he is uncomfortable prescribing a dose large enough to give you some control over pain, long term ? That is an unreasonable plan.

Hang in there, Ang

He thinks that I will get use to the pain and eventually be able to get rid of the meds.

You need to find a new doc asap! I was told this early in my RSD life. Somewhere O have seen pts rights who have pain. Just a FYI docs can be dinged if they don't treat your pain! Hospitals are REQUIRED to treat pain.