My feet were burning so bad last night that it hurt to put my slippers on and walk. They were red and shiny and swollen. My med helped but took twice as long to help. My feet feel better this morning, but it was very scary. I know my rsd is spreading from my wrist to all of my limbs and stomach and this is one instance. When I told my neurologist about this she said it may be the fibromyalgia causing it and my pm dr said he to keep taking meds, exercise and see a person to help cope with the pain. Of course that person he recommened was far away and I already told them I can't take long car trips and they didn't take my insurance either. I wish I could find a dr who would tell could confirm the spreading and help take the pain away. All I seem to get anymore from some drs is blank stares and question marks. They don't understand this disease and don't know what to do about it and that scares the crap out of me. What am I going to do if the pain gets so bad that I can't take it anymore and when my drs say there is nothing more they can do? I'm starting to freak out and have another rsd meltdown. This sucks. Just needed to vent. Thanks for listening.

Hi Renee,

I am so sorry you are in such a dark place this morning with your pain, it does suck!! I wish I could give you an easy answer for the relief of that burning pain but sadly I am also plagued by it in both legs and my arms and other than distraction nothing really seems to help. Sadly, even the best doctor only has a handful of things that might help. If this is a new area of spread then contacting your PM doctor would be your best bet. Dr. Hooshmand and Dr. Schwartzman both suggest that managing new areas of spread just like you would the initial diagnosis is the best way to attempt at putting the new area into remission. So in essence even if blocks, injections, creams, patches etc., didn't work on the initial area of RSD doesn't automatically mean those measures won't work on the new area of spread. Have you discussed with your PM lidocaine or ketamine infusions? I know you are seeing a psychologist are they a "pain psychologist" or more of a traditional psychologist? Can you call and ask your neuro's office for a referral to someone closer?

What are you currently doing to cope? Are you getting some form of exercise in daily even if it is just isometric? When all else fails instead of trying to manage the pain, I instead focus on changing my mood/attitude which includes good comedy, music an good book.. even a great mystery that helps get my brain to re-focus. Shoot.. make a pot of coffee just for the yummy smell.. whatever you can do to get yourself out of the darkness.

Massage in areas that aren't painful to the touch can also be extremely beneficial for both the mind and the body.. and don't forget a nice warm soak

You will get through this.. try not to fear about tomorrow

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.

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.

PLEASE keep me/us posted on your infusion treatment. I am VERY interested to know how that works out. Best of luck with that Tess! I hope you get amazing results!!

I would like to know too Tessa. I hope it helps you. Maybe I'll try it next. Good luck and my thoughts are with you.

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.