I am so sorry to hear about your struggles & pain. It is never easy watching your world get smaller & smaller.
I've been dx w/full body RSD since 1997 & can sadly relate to what you are going thru. I went the other direction in trying to let others know exactly what I had including what my limitations were. I felt if I educated them (including various doctors) of what RSD is & what my body was going thru then on my really bad days I would get the much needed support....boy was I ever wrong! My flareups would get so bad that I couldn't wear clothes, so going outside the house for any reason was out of the question. I had to be honest with my husband & three kids but most of all I had to be honest with myself & it wasn't easy.
I had to quit letting the doctors try to use me as their "guinea pig"/new & improved methods for every time it made me worse. I fired many drs for being too pushy in wanting to put anything in my body with a high possibility of causing any infections or pain. 'My body is going thru enough turmoil why would i want to risk further complications?' Always got met with, "I didn't think about that" or "you've got a good point"
My husband has a brain tumor w/seizure disorder + our 3 kids were younger with no family even in the same state as us, which didn't leave me with very many options for outside help. I was forced to look into alternative therapies, meds, etc in order for me to function daily. I had them help me not only in massaging oil into my back, grocery shopping, cooking, & yes at times getting out of bed but also in finding alternative treatments. We've spent many hours collecting plants, berries, glacial silt (healing mud) or just at the beach, which all four of them said they felt part of trying to get me better instead of knowing I was suffering and not helping. I'm not saying I wasn't in pain, for many times we had to cut the outing short cuz I was too bad off, so back home we would do puzzles to get my mind off the pain.

I'm not sure if I've helped you in some way or not, for everything is running together & lack of sleep is I'm sure very evident, but I did want you to know I feel what you are going thru...been there done that & this is so overrated!

You are not alone in this, for the internet has helped connect CRPS patients to enlarge their world & give you the much needed support you deserve. If I can help you please don't hesitate to contact me.

Gentle hugs