I have not had any pain other than minor since I found out I have RSD. My carpel tunnel surgery was 3 months ago. I have a stiff hand that feels more swollen in the morning. I have to squeeze it several times to get it working. I am aware that things usually worsen from 3-6 months. My hand occasionally still turns purple ( mainly when cold)and sweats less often than it did at first. I have burning in both arms and shoulders. My face also burns. Is the face burning called being flushed or is it a sign of spreading usually? I take neurontin also. The burning is random in different areas and has been on different parts of my legs lately. Much worse in both arms.Most people on here seem to have pain as their first symptom.I am just confused about this. It could be that most get the diagnosis later than I did.

I got my diagnosis much later I think...around 6 months...so I wasn't on any useful meds until then. I think it's great that they got you diagnosed so early and onto meds that help with your pain. My pain was bad at first and they kept giving me vicodin...which didn't help my pain at all...but bad as it was it was only a fraction of what I deal with now. I think your experience could be different because you are on the Neurontin at a much earlier stage.

If you feel that there are some new things to be concerned about...get in to see your doctor. Any spread is best dealt with as early as possible. I don't know if what you are experiencing is spread...it might be a side effect of the meds or something else entirely. These are definitely things you want to discuss with your doctors.

Hi murgir

I agree with what catra said above. Also, don't forget that what one person describes as 'pain' might be described by another as 'burning'. Pain is a dreadfully subjective thing, one of the reasons docs always ask you to characterize your pain and not just say it hurts. Ditto on the pain scale out of 10, because it makes you think about your pain in a definite way.

I get some weird symptoms in odd places at times, and I always try to rationalise it and think whether it's a sign of spread or just some random weirdness thrown out there by my misfiring nervous system... (easier said than done ).

I have had a few patches where one side of my face feels like its burning, ditto a patch on my right arm, stabbing pains in my right side, etc. None of these (so far) have turned out to be spread, and the symptoms have faded away or just stopped. CRPS affects your nerves, and they are connected throughout your body, so any part of you could misfire and hurt or have any other neuro symptom, without it necessarily being spread. Just a storm coming in (we've had a lot of those lately!) can give me some shock-type pains in odd places.

I try to hang on to that when I can. This is scary stuff, and we are most of us scared of spread...but often it's just the CRPS playing one of its weird games with me. If it settles into a pattern and is there increasingly, then that might be spread...

This thing is different for all of us. I hope your face and arm burnings are not spread, but keep an eye on them. I always recommend keeping a pain diary, it's a good way of seeing patterns and development.

Take care of yourself,

Bram.

Murgir,
I don't think there is a "normal" with this crazy disease.

As usual, Bram said it very well & I appreciate that because i can't keyboard
very much.

I wonder about many weird symptoms as well. My Dr. & I think it's spreading to my foot even though I guess the spreading most often "mirrors" to the same opposite limb. However, I do not have all the symptoms in my foot.
When my hand & arm were dx'd i had ALL the symptoms to the extreme!

I often feel as if someone has a voodoo doll of me and likes to do weird things to it. (bad humor)

So yes, how does one know what to do? All I know is to keep things moving as best I can & "work" through the pain.

Thanks Bram, Az-Di, and Catra121

I called my doctors office and the nurse called me back. I was taking 300mg of Neurontin after my 6 week check up when I was diagnosed. Then it was upped to 900mg. now it is being increased to 1800 a day over the next 3 weeks. At only 3 months with this I am really scared. I now have the worse burning around my eyes and both arms. My eyes have been blood shot too. My cloths have started to bother me some. OK I don't know why I didn't connect the dots about pain/burning being the same. Just so glad I have all of your help. Thank You all so much.