I've had crps for just over 2 yrs. now. I know it's bad but it keeps getting worse. It surprises me when I have the "worst day yet" b/c each time this happens, I assume it's as bad as it will get. And then it gets worse. Higher pain, higher burning, more muscle cramping... When does this rotten disease peak? I really need this to level off somehow....

Goodness knows I think we'd all like t know the answer to that one... I've had mine just under 2 years as well.

I think it is the scariest part of CRPS - the terrible question of 'how bad will this get?'. Most days I don't want to think about it, so I just hope that I am one of the lucky ones. Mind you, I don't feel lucky now!

Take care, and I hope the progression of your CRPS stops very soon. It is a frightening condition to have.

Bram

I am sorry you are having such bad days lately. I will say a prayer for you to get some relief. Hold in there.

Yeah, that is a tough question! I have had RSD/CRPS for just over 22 years now and wonder the same thing. I was lucky enough to be in remission for many years and when I came out of remission, it still stayed in just my face. Then in 2009, I injured my hand and the spread began and it is now throughout most of my body. Unfortunately mine is still progressing. But everyone is different.

I hope and pray that yours stops progressing and you get some relief!

Nanc

Sorry you are enduring this awful disease. I certainly didn't feel lucky but now I've seen how much worse it can be for some others on here. I've had it only 6 months in my left hand & wrist but does feel like it is trying to "spread" up my arm except the loss of function is still just in my hand & wrist.
The only thing I can think that may help prevent the spreading is 500 mg. Vitamin C every day and the nerve blocks about every 2 weeks. I have had 12 of those so far.
Sure hope it gets better and not worse!

Mine has continued to spread since having a hip replacement in 2003, very scary,my only advice is live in the moment bc that's all anyone has


Deb

There seem to be long and short term trends. I got better starting at about the 4 year mark and was much better (60% better) by about the 5 year mark. Then I injured my ankle and went downhill fast and continued downhill for years. All this time the RSD has spread with each new little injury or insult but the overall condition has not always been downhill.

I've had CRPS type II for 8 years after a venipuncture nerve injury to the sensory branch of the radial nerve in my right arm during a blood donation. I've had two spreads, both overnight. First was to the rest of the upper right quadrant of my body, which occurred 10 months after the initial injury. Second occurred 2 years after the initial injury, and affected the rest of the right half of my body, head to toe.

Since then, the last 6.5 years, it's been stable and hasn't spread further. Hasn't gotten too much worse, but hasn't gotten better. I consider myself very lucky that I can work and do most of what I want to do. Weight gain and fatigue has been an ongoing battle, but pain/discomfort is generally under control with warmth, meds, reasonable activity, biofeedback techniques, and keeping overall stress in my life to a minimum as much as possible.

Looking back, the first three years were horrible, espcially with the uncertainty of it all. The past five years have been much better, mostly because (1) I'm just used to the right half of my body feeling different than the left half, (2) combination (gabapentin/Cymbalta) and dose of meds that are effective, and (3) I know what works to keep flare-ups in check, and what else I need to do or not do to keep everything manageable.

I hope everything works out for you,

Ann

Hi Ann! I had to reply to your post when I read that you had a venipuncture nerve injury from donating blood cause your CRPS II. I had the same thing happen in 2006...you really made me think about things here for a minute. I went to a blood drive at work, as I had done many times before, and the girl drawing blood had difficulty placing the needle and went right thru the vein and hit the nerve (lateral antebrachial cutaneous nerve). I just pulled out my records from this incident, and realized that I completely forgot the date this happened. I developed RSD in my face in 1991 and in my left arm in 2006. My spread really started after I hurt my hand in 2009...so additionally, it is in both hands, feet, shoulders, left leg, abdomen and head.

Thanks for posting and making that light bulb go off for me!
Nanc

Ann, or anyone else that got a needle nerve injury and crps spread later, what exactly where you feeling in the first 10 months before the first spread? Did you have local crps symptoms from the start and was it really bad, or did the pain go away those 10 months and then suddenly come back? Is there anything you'd recommend doing during that timeframe to stop/delay the first spread?