Doc said CRPS may have 'burnt itself out' at original site - any exp or ideas?!
 

Hi gang,

I saw my pain specialist last week, and I was telling her that my left knee (where I first had CRPS) isn't the real problem now. Although my knee is weak and painful, it doesn't really burn like it used to, only every now and then, the pain is more deep and subtle.

It is my left foot that is the drama now, much more pain and burning on a daily basis and it is really affecting my mobility. Luckily now I am back on a small Lyrica dose it is a little better than it was.

The doc said the CRPS may have 'burnt itself out' in the original site. What does she mean and is it a permanent improvement or just a temporary bit of time off? Also, has anyone actually had this and did it last?

Thanks for any ideas :)

Bram.

It is my understanding that CRPS doesn't "burn out". That is old school thinking and terminology from the experts I have followed.

Symptoms can change for better or worse, but unless you achieve an actual remission which is rare, it's still there.

Interesting. My wife has had RSD going on 11 years now and hers has changed. I can not express the pain she had in the earlier days. She had very bad reactions to meds like Lyrica-cymbalta. It took her years to get a diagnoses and took very strong narcotics for at least 5 years. Her pain has changed. She describes it as deep in the bone pain through-out. The difference now is she takes no narcotics. She is clearly in pain and everyone can see it in the way she moves. Those who don't know her can see clearly something is wrong, but her need for narcotics at this time is so much less than those early years. Is there a such thing as RSD burning out, not sure. I once read a Scandinavian research paper on RSD that stated females who are past menopause have a good chance of remission.

When i queried it, she did say it hadn't gone and most probably wouldn't, just that the burning skin symptoms might have diminished. She said even if it continued to be quieter, I would always have to be careful and that the pain could get worse again or the burning return :rolleyes:.

Bram.

It changes you only need 3 of the 4 main syptoms to have RSD they can increase or educe and they can change over time the same with the secondary ones.
I have even been told of a couple of cases who have never had any pain at all lucky bar stewards

I would say the pain and symptoms can and do change over time...but so does our way of dealing with it. My sense of "norm" has changed and so pain that would have probably knocked me unconscious in the beginning of my RSD or prior to getting RSD now just makes me stop, blink, and then continue on. I've also learned lots of coping mechanisms and I think that changes the way I experience the pain. I'm aware of it but it doesn't affect me the same way as it used to.

But the symptoms have changed over time too. In the beginning I had severe pain, sensitivity to touch, and the temperature changes were very extreme. Now the temp changes only come with very big flares. I can also add a lot of other symptoms to my condition now since the spread including difficulty sleeping, balance problems, difficulty concentrating, etc. I've also undergone many different treatments and I think that affects the RSD too and the symptoms.

Sometimes treatments that we think have failed have actually had an impact. I had a lumbar sympathetic block early on (about 6 months after it started) and it had zero impact on my pain. But the temperature changes gradually reduced after that. I didn't connect them right away because the pain was so huge and the temperature changes were just odd. But in hind sight the block did help with that particular symptom.

So...I don't think RSD burns itself out but it can and does change.

That rings very true for me Catra, and makes a lot of sense....thanks :)

Bram.