[AZ-Di]

Hi all! I know this subject has already been beat to death at various times,
but I'll ask anyway.
My RSD/CRPS introduced itself in a BIG way after surgery. I mean looking back I had EVERY classic symptom to the max. That's probably why I got a relatively
early diagnosis. 5 wks. didn't seem quick at the time for sure.
Many nerve blocks, P.T. and meds. later now the original wrist & hand are still contracted and about 30% movement but the swelling is gone and pain is managed because I only get break thru pains & burning.
NOW, the pain & redness is going to my foot & lower leg on
the same side. It has been very gradual and at first I was in denial that it
must be unrelated to CRPS/RSD.
NOW QUESTION: If this is spreading why would it be so gradual when the
original site was so sudden & dramatic? Is it because I already take mega
Vit. C & other meds?
I asked my P.M. Dr. & she says it's a possibility, but while I can still walk
she seems to still concentrate on my arm.

P.S. Bram hope you're hanging in there. I visualized your "druggie" impression
& hope you don't have to be that way for much longer.
If we were all in the medical profession I'd say we were cursed with this
monster to teach us compassion (I know it was a rhetorical question).

[~Sage~]

Di, as I was reading it, I said, "Oh, crap!" I'm sure you know how to assess whether it's RSD, so go with your own Dx.

My guess would be that the original site was where you experienced trauma while the spread site is coming on much more gradually because it's really brain and nerve issues, not trauma.

Remember though. I'm back here because I made it to remission so do not let a day go by that you choose to accept your fate, but instead, concentrate on being in remission.

[Nanc]

Hey Di! It is sometimes so hard to tell if it is spread or something else. If you do suspect that it is spread, then push the issue with your dr. I have had this for 23 years. It started in my face but I did not experience spread until 2007 (venipuncture). Then I hurt my right hand and it spread there and mirrored over to my left hand. Then my left shoulder joined in...then the right...then down my left leg. Anyway, the PM dr I went to at the time was doing right side SGB's. I told him several times about the left side issues. He said he didn't think it was RSD, sent me to an ortho for my shoulder and sent me for an mri on my back (thought that was causing the leg pain...it wasn't). I ended up having a bone spur removed from my shoulder and while I was in recovery, the ortho told my husband that he thought the spur wasn't causing the pain it was the RSD. Great, thanks for making things worse doc! I knew it was RSD spreading and I was right, it was. I did not return to that PM dr, I found a new one and he confirmed it. I have had spread happen very quickly in some spots, like in my hands, and gradually in others.

Maybe the vit C you are taking is helping, I don't know. I cannot take it so I am not sure how it works.

Wishing you the best,
Nanc

[Nanc]

Originally Posted by ~Sage~

Di, as I was reading it, I said, "Oh, crap!" I'm sure you know how to assess whether it's RSD, so go with your own Dx.

My guess would be that the original site was where you experienced trauma while the spread site is coming on much more gradually because it's really brain and nerve issues, not trauma.

Remember though. I'm back here because I made it to remission so do not let a day go by that you choose to accept your fate, but instead, concentrate on being in remission.

Hi Sage! Can I ask how you went into remission? I mean no disrespect, but simply concentrating on remission will not make you go into remission. Of course positive thinking will help us get thru each day, but for it to get us to remission??

[moosey2me]

Originally Posted by Nanc

Hey Di! It is sometimes so hard to tell if it is spread or something else. If you do suspect that it is spread, then push the issue with your dr. I have had this for 23 years. It started in my face but I did not experience spread until 2007 (venipuncture). Then I hurt my right hand and it spread there and mirrored over to my left hand. Then my left shoulder joined in...then the right...then down my left leg. Anyway, the PM dr I went to at the time was doing right side SGB's. I told him several times about the left side issues. He said he didn't think it was RSD, sent me to an ortho for my shoulder and sent me for an mri on my back (thought that was causing the leg pain...it wasn't). I ended up having a bone spur removed from my shoulder and while I was in recovery, the ortho told my husband that he thought the spur wasn't causing the pain it was the RSD. Great, thanks for making things worse doc! I knew it was RSD spreading and I was right, it was. I did not return to that PM dr, I found a new one and he confirmed it. I have had spread happen very quickly in some spots, like in my hands, and gradually in others.

Maybe the vit C you are taking is helping, I don't know. I cannot take it so I am not sure how it works.

Wishing you the best,
Nanc

Sorry it spread..Makes you worry about doctors..Do you have faith in the new doctor?What does vit..C do????Thanks..Hope you are better than you were..Have you tried the stimulator?

[Hana]

Originally Posted by Nanc

Hi Sage! Can I ask how you went into remission? I mean no disrespect, but simply concentrating on remission will not make you go into remission. Of course positive thinking will help us get thru each day, but for it to get us to remission??

I have also had this for 42 years and it does go into remission, but can also come back,with AVENGENCE as you know. Many of my treatments and surgeries confused the picture for the first 20 years. However, I did have good years and times of function. My experience with Sympathectomies was unbelievable. After a period of "normal respite" aside from the surgical recovery..up to 6-8 months average, it came thundering back worse than ever. I started studying the SNS, and realized that we do have some control over it... no WE CANNOT STOP IT, or CURE... just treat ourselves to as much DE- stressing as we can. It is an excitatory system and everything can be a trigger. I looked to engage the PSNS So, in the times I was in remission stage I was focused on living well and taking care... Started meditation, Tai Chi and yoga. Of course gentle exercise helped too, and guided imagery. All it takes though is a simple bump or twist and we never know which will be a trigger. We each have our own. So sorry Nanc that you haven't had any relief. It is a grueling disease.

May we all have some peace today within our bodies.

Hana