Hi everyone
I have CRPS 1 for four years now in both my shoulders down to hands. I got it from rotate cuff surgery . I am 50 and now feeling like my life is over from all this pain. I had the scs implanted it never helped so I finally shut it off. I been on all pain meds ( well a lot ) I been on a lot of nerve medication!! Right now I'm on topamax 100 4 times a day , and morphin 15 mg 3 times a day . I am in serve pain in my right shoulder ( I believe it's because that's where I had the surgery done 4 years ago so my RSD is worst on my right side) it's like bone on bone . My hands feel like needles stabbing them. I try heating pad , steroids ( they took 5 days for a little relief) my pain doctor told me today theirs nothing he can do except another steroid ( which doesn't do crap or Advil) can anyone please help me ? I need help I'm so desperate I'm so much pain!! I been using a heating pad and it's not working either .
Thank you
Ps I live in the cold area so I been staying inside but I'm sure this hasn't help either. Has anyone idea about the cbd oil ? Thinking about this too.

There isn't too much that I can say other than keep trying more options until you find something that does work. My PM has pretty much given up on me as well, so I am going to start searching for yet another PM. If your doctor has run out of ideas like mine has, try going somewhere else. Like many others here have told me, a set of fresh eyes might have some other ideas.

As far as the CBD oil, someone has told me that it did help them, but I have not tried it myself.

I came to the realization a long time ago that for myself...there is no magic pill that will take away my pain. Instead...I focused on regaining function...which meant finding things that helped "enough" to get me back to living my life. I have a bunch of things that help a little...just a very little...but added up give me just enough relief to be able to work, care for my daughter, go out, make dinner, etc. It's quite frankly exhausting doing all these small treatments and tricks regularly...but the alternative for me is being miserable, in pain, and couch bound with nothing to do but think about how much pain I am in. Regaining the function and taking back some part of my previous life makes it a lot easier to cope with this awful pain.

Here's my list of things that I use:

1. Hot baths with epsom salts every day...sometimes twice a day on bad days.
2. Ultrasound treatments on any flare up areas or where the pain is the worst.
3. TENS unit on my ankle (initial RSD site) when I know I'm going to be on my feet a lot.
4. Four Fs diet...I am not super strict but there is a noticeable rise in pain levels if I stray too far from it.
5. Quell pain relief device (just started using this a month ago and it helps)
6. TDCS treatments (I did these daily for a while and now do once a month maintenance treatments)
7. I wear gloves to get stuff out of the fridge, if I might possibly touch anything cold, and always when I go out even in summer to prevent flare ups.
8. I wear a scarf for the same reasons.
9. I have a play list on my ipod and earbuds to help when there are noises that flare up the RSD or if I'm in a flare up.
10. I weigh and measure just about every activity I do because over the last few years I have learned just how much I have in me before the pain reaches the point of flare up...it's important to know your limits but takes a while to really get a handle on the balancing act...and it doesn't take much to throw it out of whack...
11. GET SLEEP...this is so key...find some way to get at least 6 hours of solid sleep a night because it makes a HUGE difference in my ability to cope with pain (tDCS treatments did this for me)
12. Use any and all assistive devices needed to make going out and functioning possible regardless of Your age or pride...I use a walker and have since I was 26 now because of my RSD. Gives me a place to sit, a way to carry things, helps with my balance, takes weight off my legs, and keeps me from getting bumped into as people give me much more space than if I am just using a cane or nothing at all...life changer.
13. I keep moving...always...even when resting and laying down I do ankle exercises and hand exercises...simple stuff but if I stop and hold something for example my hands can become frozen and locked where I can't move them and the pain is excruciating. PT exercises that I could do at home were and still are key to regaining and keeping the fuction I've gotten back.

This is what has worked for me. I still have terrible pain...but I work full time, had a baby last year, and have regained a semi normal life. Its not the same as it was before...I have huge limits on what I can do and it takes every ounce of energy every day to keep it up...but it's worth it. I am not my RSD and I won't let it ruin my life.

I hope you are able to find the right doctor who can help you. There are lots of treatments out there...unfortunately none that were right for me so I had to take a different approach to everything. Maybe some of those things I mentioned can help you...none help a lot with the pain...but it all helps a little...just enough to make it possible for me to live my life...

Unfortunately it's a matter of finding a balance between medicine and mental will....Nothing will take the pain away, and I too live in a colder climate area, at least for a large part of the year. I also found throat a heatcanexcacerbate my pain as well as cold so you might want to see if it could be making your overAll pain worse even if it feels better in the short term. Assistance what you are doing during th day, even things like folding clothes or distinguished be making your pain worse!
I hope you find relief soon, and know we are always here and ready to lend emotional support when you need it!