I was wondering any of you have constant burning or just from time to time. Also does the burning jump around from one place to another. I started rsd with deep aching pain, and about a year ago I started getting burning (Like a sunburn) which the Neurontin helps to subside. It seems to be getting worse and feels like a lit match is on my skin and is spreading. I would appreciate any input on this.

Also when you experienced rsd spread, what were your symptoms? Were they internal pains or external swelling or both or something else. And did your dr confirm spread or did they say that they thought maybe but not sure.

I've had some drs tell me rsd can spread without external signs and others tell me that it can't spread without external symptoms and other tell me that they are just not sure. I have both internal and external symptoms in most areas but was wondering what you were told about this.

Thanks again for all of your support.

And my thoughts and prayers are with you all in hopes that you have a pain free night tonight.

I do believe that there is a God watching over us that will help us make it through this pain.

Take care.

I don't know if it shows or not. But its different in everyone remember. Mine is going down my leg to my foot. Its red tonight and swollen like my knee and leg and its all hurting. Deep throb and bee stings all over that leg. Its making it hard to unwind to go to sleep. What little I get that is lol. Don't start winding yourself up now. I wish I could take my gabapentin but there isn't any studies in pregnant women done yet. The idiots put it on the market before they knew if it would affect the baby in utero or breastfed. Oh well. Sorry to take over and get irritated about that. Have a great night Renee and relax and keep smiling. Its hard tonight but I am trying.

Thanks Allanira,

I can't sleep either. I am starting to freak out again about this lousy pain. I had another bad flare up with my stomach tonight and the pain went to my back and down my legs. So I snapped at my poor husband who didn't deserve it. (It was the pain talking, and I apologized, but I still feel bad. RSD sucks. I'm sorry you can't take your gabepentin. I think thats like the neurontin I take and I wish I could do something to help you. Maybe a heating pad may help. I've had mine on all night. I was better this morning, but nights are rough. And please don't be sorry. I'm here to vent to too. Thanks for your info on spread. My doctors don't seem to say much anymore. They just don't know enough, so we're left to figure it out ourselves and i appreciate your input. It sounds similar to my spread. Well, I hope you get some sleep tonight. I have a feeling I will be up watching tv for a few more hours. I'll try to have positive thoughts for all of us. Thanks again.

I tend to think of the "fire" or "burning" feeling as a wave, it starts in the feet and washes up the body to the next site until it stops and works its way back down, this is a rinse and repeat cycle until its controlled with meds.
Sometimes meds dont work and the wave cycle just needs to tire its self out but by this point most people end up in hospital as its too much.

Hi Renee,

I can only speak for myself, and the way your body reacts to the CRPS might be very different. You can read on the web of many different types and rates of spread... This is my experience....

My CRPS started in my left knee. It started as deep pain with burning or coldness with rashes. Then I had a more stabbing pain, and more extensive burning v icy bone pain. That knee is now still very painful, weakened by long term pain, and the muscles are atrophied to some extent. I've done a lot of physio and exercises which I think I have stopped it being worse. The pain is more intermittent now and more a cold bone pain, and is less hot most of the time (although sometimes it can really kick off if I've overdone it). I get less burning pain, as it's predominantly a cold pain now.

It's since spread to the rest of my leg, my right foot and into my left arm, with similar start of symptoms each time. I tend to get a mild tingling pins and needles pain to start with, which gets more frequent and painful, along with a painful ache as though I've banged it. The area also feels cold randomly, and sometimes hot. Then my skin in the area feels scratchy and sensitive more and more regularly, before the red burning type of pain starts - that phase lasts a year or more. I don't get the burning all the time in any area, it comes and goes daily, tending to be worse in the evening. The rest of the time the area feels mainly icy cold and achy.

I've found this pattern repeated each time, and if I get a new area of the tingling on a regular basis, I do tend to panic a bit! At the moment it is over the left hand side of my back far too often for my liking. I do have some CRPS-type symptoms all over the place at random times, like sudden burning stabbing pains in my right thigh for no reason. They don't tend to be about spread, and I think are just about the nerves misfiring as part of the more central part of the CRPS condition.

That's what mine is like, I know others have milder symptoms, and many more have it far worse. I don't generally consider myself a bad case, but some days I could make a substantial case for it!

Good luck. I hope it isn't spread and more just the vagaries of the nerve disruption...

Bram.

Cymbalta has helped keep my burning pain somewhat under control. I do notice if I don't keep on my actual pain med schedule the burning starts up. Also any exposure to cold really flares burning pain.

Thanks Allinira, Brambledog, Madjock and fbodgrl,

I appreciate your replies. My spread symptoms seem very similar to all of yours. I know we are not all the same, but I could relate to all of your comments. I'll talk to my dr about cymbalta and try to stay calm. But this spread is freaking me out. I just wish it would just stop. It seems to happen so sneakily too. Like a very slow progression for me that won't stop.
Anyway, thanks again for being such good friends and hope you all have a good day today.