[AlishaE]

I was recently diagnosed with CRPS type I in my left leg. It was triggered by knee surgery last September (I knew something was really not right by October) and it spread to my entire left leg this summer.
My question is....
When it spreads to another limb does it just happen all of a sudden? Are there small pains that increase and then boom it's there? Or do you wake up one day and know that it's in another limb?
This is all very scary to me and I try not to think about it spreading more but it's hard not to sometimes.
Thanks! Alisha

[Russell]

Alisha,
All I can go by is my own experiences.
My RSD (or CPSD) stared in my left wrist and has spread up my arm, shoulder, neck, left side of my face and now it's turning north and also my left leg.
The symptoms were different each time it spread but the pain and sensitivity was pretty much the same. The more I read the more I realize that there's really no set pattern for this monster. We just end up with close to the same painful fire and ice.
So sorry to hear of your battle with this monster but at least in here you're not alone...

[6kiddos]

I am interested in the answer to your question also. I have noticed the pain is moving up the back of my heels to lower leg lately. Not sure if it is spread or not. I am pretty sure it has spread to my ankles though. I have burning in both places already. =( Sorry about your diagnosis. THis is NOT fun. On the other hand, it felt good to finally figure out what was happening to me!

J

[AintSoBad]

I think, it happens a bit differently for everyone, Alisha.

For me, It started in my left arm and between my shoulder blades, and up (Thoracic Outlet Syndrome). Then, it crossed over (after a few years) to my right upper quadrant.
Then, after a couple more years, it went to my left leg, and quickly to my right, and then it was full body.

So, No, it doesn't happen 'suddenly', but sometimes may surprise you. So, I'd go with the small pains, and then one day you'll realize that it's invading elsewhere. Others will chime in with their experience, I'm sure. I've had this for 28 years, and I sorrily believe that if you have it, it's already in your body.

I'm sorry to say, that it's possible that it will spread, since rsd is really quite like a short circuit in our sympathetic nervous system. Short circuits do spread.
But don't concentrate on that!!

Concentrate on What you CAN do!! And, all the blessings you have.
It can always be worse!

Exercise, eat right, and get good pain relief, from a knowledgable doctor. It's a circle, without proper pain relief, you can't exercise!
I was taught early on that it's a 'Use it or lose it' type of disease.
I agree with that.

Hope you're well!

Pete


asb

[yellow]

For me, it started in my left knee and then spread to my right as well after arthroscopic surgery on the left knee. It started gradually, where I thought the pain in my right knee was just from overcompensation after the surgery for awhile, but I soon came to realize after the pain kept getting worse that there was something wrong. At the time I didn't have the diagnosis of RSD so I didn't understand that my pain could spread, but eventually and gradually (over the course of maybe 4 or so months) the pain and symptoms in the right caught up to the those in the left.

Now I'm experiencing just the burning pain up and down both of my whole legs. I think that eventually I will probably have all of the RSD symptoms throughout my legs, and the spreading is happening a bit differently this time.

So I agree with what others are saying, that it happens differently for everyone and can even happen differently for different cases to the same person. Those are my experiences, though, and I hope it can be of some help to answering your question!

[Jerie]

My Rsd started in my R leg and when the burning pain began in spread to my thigh went to my shoulder and within a week it spread all over my body and in my lungs and on my face. I also had my R hand and lower arm swell up one day and then disappear the same day. Sometimes when it gets really cranking i can rub my eye lid and send myself off the edge, or better yet when it is in my groin, wiping gives a whole new definition to the phrase hot pants. The Dr. thinks I am a crisis baby. It scared the heck out of me how fast it spread. The new thing today? My blood pressure has been high. I have chronically low blood pressure, or I did until lately. I have never had it read that high before even though it was only 130/84 today. Nothing the doctors would care about, but it surprised me. Twice this week it was high. Took it tonight still high. I am overwhelmed, this is scary stuff. God bless you and sorry for you too.

[Karen67]

Originally Posted by AlishaE

I was recently diagnosed with CRPS type I in my left leg. It was triggered by knee surgery last September (I knew something was really not right by October) and it spread to my entire left leg this summer.
My question is....
When it spreads to another limb does it just happen all of a sudden? Are there small pains that increase and then boom it's there? Or do you wake up one day and know that it's in another limb?
This is all very scary to me and I try not to think about it spreading more but it's hard not to sometimes.
Thanks! Alisha

Hi Alisha, I also had knee surgery (both knees) but mine started in my right foot and then went to my left foot, both ankles and now here I am 7-8 months later and it has started in both of my hands as of about 1 1/2 months ago. So, just like everyone else on here, it is different for everyone. I am so sorry you are having to go through this sweetie. But please know that you have a very large and caring group of people on here that understand EVERYTHING that you think and feel. So if you ever need to whine, cry, or just get mad, we're here. Karen67

Hi, AlishaE:

I had RSD in my left knee since August 25, 2001, when I was struck and injured by a car while crossing the street on a crosswalk. Within a matter of days, my RSD started moving all the way down to the bottom of my left toes and all the way up to the middle of my left thigh. It stayed like this for years. My severe chronic RSD pain is controlled very well by my Duragesic (fentanyl patches) and MSIR (morphine sulfate immediate release capsules), so I thought my RSD would stop spreading. I was so, so wrong... Years later, my RSD moved all the way up along my spinal cord from my left leg to my brain. Then, from there, my RSD moved to my right leg and to both my arms. Finally, my RSD started moving (through the nerves or blood vessels?) to some of my internal organs, such as the gastro-intestinal tract (nausea, gagging, no appetite) and lungs (breathing cold air, more asthma attacks). I had seven left knee surgeries. I do not think the surgeries themselves triggered the spread, but the poorly done physical therapy (bad physical therapists in a physical therapy mill), the poor post-operative pain control (the physical therapy mill seized my MSIR capsules and my fentanyl patches; if I had known my rights at that time, I would have called the cops for theft of my painkillers), etc.

Of course, everyone's case is different. Not everyone's RSD spreads; some RSD patients (such as my best friend) had the chance of seeing their RSD cured... but it cost her over U.S. $ 50,000 and a trip to Germany.

It seems to me that the RSD patients who posted messages in this thread had their RSD spread much quicker than mine. I wonder if it is my painkillers (I now take four different painkillers: Duragesic, MSIR, Tambocor, Inderal) that slowed down the spread of my RSD. I think one of Dr. Schwartzman's documents contains an answer to this question so, when I have time, I will take a look at it.

[Vrae]

[QUOTE=AlishaE;809407]I was recently diagnosed with CRPS type I in my left leg. It was triggered by knee surgery last September (I knew something was really not right by October) and it spread to my entire left leg this summer.

So sorry to hear this. For me R foot/leg (knee down) back in 2004. Woke from back surgery w/ RSD in these areas and RSD was most pronounced in my foot/ankle. Slowly it started to encompess the entire leg.

It took years but as it started to spread to L foot the RSD would send tingles / signals in my L toes. gradually it started to get more pronounced in my left leg / foot and within six months or so from there I started feeling that "tingle" in other random areas all over my body. Those "tingles have turned to pain and the areas are still random from the belly up. I have felt it in the back of my throat, fingers, belly, arms, eyes, face... it seems no area is off limits. It seems the worst of it will always be the original area of right foot / leg, but when it attacks everywhere at once, it is relentless. I wish I had better news. I pray it does not go anywhere else for you.