Renee honey, I am so sorry. For me I knew spread was happening without a doctor to confirm it because when it first started to spread I could feel little tingles and then later sharp neuro shocks, then every other pain that comes along with it. First it mirrored to my left foot, then up the leg, then hands, trunk, etc. All in the same way for me. The spread didn’t happen for many years into the disease, but once it made it into my full left leg, the balance of the spread was pretty quick.

With our condition, doctors are very frustrating. Period. They can be so dismissive and since they’ve never felt what we feel, and don’t have scores of folks walking through their doors to tell them about it. I always think it’s interesting how when someone hears that someone has cancer that has spread everywhere and how much pain they’re in, all will stop in their tracks and take note and without delay start treatment, but mention full body RSD and no one knows what they hell they just heard. I’ve taken in numerous papers for my doctors, and again, it’s just glanced at, if at all. I guess I will just keep being an in your face kind of gal with this condition and the medical community. Passive sure hasn’t gotten me anywhere, so not sure what else to do but be assertive and persistent.

I know this is so hard, but try, try, try not to let emotions get the best of you (easier said than done some days) as it will only make your symptoms worse hon. I hope this flare you’re dealing with passes real soon. Rest, take care and be good to Renee.

I ditto what Vrae said regarding getting confirmation from a doctor about spread.. we know the pain/symptoms intimately so we really don't need confirmation. What you may need is additional treatment aimed solely at reducing symptoms (if possible) to those new areas.

My spread happened almost exactly like Vrae explained except that it mirrored to the opposite leg inside of a month and then to the arms 3 months later. My arms have only been involved for just about 2 weeks and started initially with intermittent muscle spasms, then random shocks and then constant burning that hasn't stopped since it began. I can't recall how my leg mirroring began as some of that pain is masked through my SCS thankfully.

Wednesday I will start my first lidocaine infusion on an outpatient basis. We are waiting for insurance to approve a 5 day inpatient infusion that has had good results lasting 2-4 months mostly for mechanical allodynia which would make the winter months much easier for me to handle if it is successful.. I hope it is. Maybe it is something you could also look into or discuss with your PM doctor? Adjusting medications or trying new ones might also be worth discussing. Are you using and medicated compound creams?

I agree too about confirmation. I know its spreading because of the way it feels. I did have one pm dr say it was entirely possible it was spreading and that the sores I keep getting on my body could very well be from the rsd too. But then I have other drs that say they just don't know. It's so frustrating. I do know. My rsd stayed in my right wrist and hands and fingers and elbow and shoulder for about a year a half. Then after my oopherectomy surgery it spread down my right leg to my knee and foot. Then after my hysterctomy surgery it spread to my stomach. Then after accupunture it spread mirrored to to left wrist and hand and fingers and down my left leg and foot. It all started with redness and swelling and a sunburn like tingling pain. These symtoms are getting worse like last night and its starting to feel more like a burning and shooting stabbing pain. I also get terrible spasms sometimes in my left calf and my right wrist and shoulder. I have sores that don't want to heal on my back and in my ears and on my scalp. And the two failed root canals I've had have caused it to spread to my mouth. I've gotten sores in the roof of my mouth and swelling of the gums. It's just horrible. I hate it and it sucks. I've talked to my new pm dr and he said to exercise and take my meds. My husband said that because I think the rsd attacks my weak areas that I should loose weight and that may help take the pressure off my feet. I'm trying but it's hard and I try to walk everyday. I'll check into the suggestions you all gave me and thanks for all of your support. I know you understand and it means more than you know to me that you care so much.

I have it badly in my feet too Renee, it's horrible when they burn so badly and you just can't bear to do anything other than elevate them...the soles go so red and inflamed in the evening on days like this, I can't bear to even put them to the floor, let alone force a shoe on. I really hope yours have settled down a bit now and you're feeling a bit better.

I'm struggling with the cold/hot seesaw today....my feet get so cold and damp feeling in this weather, and once they're really cold I struggle to warm them up at all. Then when I do they just burn like mad. I can't seem to get them happy. I'm tired of fighting with this thing day and night, it's exhausting.

Take care of yourself and keep smiling at any daft thing you can I'll be thinking of you.

Bram.

I have CRPS in right foot, but left foot is starting to mirror also. This resulted from a surgery where the specialist didn't use a nerve block.

Always in a bad temper from pain, and can't walk normally; in fact, loathe to walk at all.

Pain doctor was of no help after many appts spanning half a year; his suggestion was canibus spray and pregabalin.

Is there anything that can be done since my future as a cripple with burning feet is unacceptable.

Most of us have to find what works for us.

Generally this means you have to find a way to not think about the pain. This sounds absurd since the pain can be so severe and so "in your face" but this is usually going to be one of the most important means of dealing with it. Gabapentin might help take the edge off. you need to limit stress since there's usually a close connection. Things like diet can be important but not for me.

Check some of the old threads. I found grape seed extract helped as does Gingko biloba. Staying warm helps a lot. Stay active and get as much exercise as you can tolerate.

there are dozens of thins that have helped me and many more that have helped others. If I can keep my stress levels low I barely experience RSD at all any longer. My hand is still weak and sensitive but it's getting stronger now.

Good luck. Most remissions happen in the first two years so this is when you need to really address the problem. But even after this there is partial remission and learning to live with it.

Also, now that I took a break from the Fear Thread, last night I had those "thoughts" that I don't want to have about what to do when the pain gets so bad and there's nothing that can be done for it. I feel so bad having these thoughts but I did. And then I started thinking about not wanting extra measures taken when I get to the point when this is too much to bear. I think I'm going to keep that in my living will, but want to try everything I can to avoid those "thoughts". Last night it was extremely difficult not to think of them. But I tried to think of my son and husband and how much I still want to do. I want to be with them as long as possible, but when I'm at the pain level I was in last night, I just wanted to make it go away and started thinking of things to do that like jumping off a bridge. I wouldn't really do that, but the thought was there. I don't want to be a downer, but I just need to vent again. Thanks again for listening.

Oh Renee, gosh I’ve been there too, more times than I care to admit. It’s tough because all you want is for the pain to STOP, just STOP, or at a minimum to simmer down a bit. It’s in those moments that you must remember that this too shall pass. The flare will pass and your emotions will settle. And it can be amazing how everything looks different in a new day. However, in the moments that you speak of, its damn hard to look toward tomorrow. I have literally felt at times as though I am losing my mind. No joke, really losing it. I hear there’s evidence to back this up. Something about the discharge of our pain in our limbic system in our brains. Yes, remember those who love you and whom you love, and how devastating that would be for them for the rest of their lives. Gosh, I so understand and wish I could give you a gentle hug and tell you it’s all going to be okay, somehow, someway.

PS.. did you say you're on Gabapentin? That can also be a side affect.

Thanks Vrae. You're right about it passing too. It do feel physcially and mentally a little better today and those thoughts I had are gone. I know they may come back again when anther bad flare comes, but I could never follow through because of my loved ones and the faith I have in God. I know He's with me, but it is very difficult still. I sometimes feel I'm loosing my mind too when I get flares too. And I get terrible panic attacks. It's just awful, but I'm going to try to remember that This too shall pass. My fear is that someday it won't pass, but hopefully that won't happen. That again is where my faith steps in, but rsd puts you through a true test of faith, that's for sure. Thanks again to all of you for your kind words and for lifting my spirits.

As my momma used to say "Don't borrow trouble" lol

Oh those momma's and their sayings, but I think this is a good one.