CRPSbe,

Here is an article on the use of Phenoxybenzamine in CRPS. I have not dug up the one on CRPS without pain but it was specific to patients with the autonomic dysfunction/discoloration/swelling after orthopedic injury/surgery. The TREND consortium out of the Netherlands also had written about CRPS without pain at one point, citing it as "rare". We do have at least one member with this situation who's been here for a long time and primarily has motor dysfunction.

https://www.hindawi.com/journals/arp/2013/978615/

CRPS is a spectrum with varying presentations and outcomes. People CAN get better, not always fully, but they do improve. There is no reason to assume Haywired will have pain that intensifies and "settles".

There is plenty of doomsday info out there on CRPS. However, you can also find stories of hope and research based reasons to believe in improvement. I have found for myself that it is better for me emotionally and physically to focus on hope. A persistent dedication to the improvement I firmly believed would come (and slowly did) helped me through many a dark night.

Hang in there Haywired. The cases that were not long lasting and not severe are probably not staying on a forum. Will you recover completely? no one can say, but I sure hope so. Take good care of yourself, keep a clean diet, practice mindfulness, exercise to get that circulation working better and get well! We are here if you need us.

I only told about *my personal experience* with a similar medication. That's all. I'm allowed to do that, surely?

Absolutely. I'm sure your intention is to be supportive and I believe input is valuable whether a treatment worked or didn't. I only became concerned by your statement below which could be interpreted as a prediction for a worsening outcome.

"If you are early-stage, then the pain isn't that intense as it can get, but once the pain has a chance to "settle", you'll *feel* it, TRUST ME on that"!

It is possible pain could come and even stay. But surely projecting that doesn't help Haywired when it isn't even present now. Added stress and worry increases adrenal activity, only adding more aggravating compounds to the mix, a good thing to avoid when possible. If the CRPS is addressed now through first line treatments of PT then hopefully Haywired will improve instead of getting worse.

I am exiting now. Headed to the gym for some of that pool workout I am always harping about.

It is a fact that CRPS needs to be treated well and early, or else the pain can settle and become chronic and you can't get it out anymore. That's just factual.

Not that I ever mean to scare anyone, but it just goes to show how fast you need to find a good physician that is willing to actively tackle this.

Just... you know, the basics of the condition. Everyone can look that up. And better that someone informs you of this than a terrible outcome and an "if only I had known then".

I agree that early identification and treatment is important. Addressing CRPS in a progressive fashion (least invasive first) would seem intuitively to lead to better outcomes than ignoring it. Pain of any kind can certainly become chronic but recent research shows those kinds of hard set pathways don't always have to be the case.

Hopefully all newcomers here will find knowledgeable practitioners to help them get on the road to recovery so they can be part of the 80% of CRPS patients who improve over time.

Here is a nice article on Neuroplasticity and Pain. The good news is it goes both ways, which is why things like mirror therapy can be helpful. I can attest to the benefit of some the suggestions in this article. I even took up piano as way to get my brain focused on something beautiful and involving another body part besides my foot. And you know...it really did help. Everything we can do to stay balanced can help.

painHEALTH | Pain Management | Neuroplasticity

Mirror therapy was a no-no for me as both legs and both arms are affected, so how are they going to do that, even?

Yes, a lot of CRPS when discovered early can be dealt with and people do improve, but that isn't the case for us chronic CRPS patients. And we do exist and I believe we should serve as a definite warning!

The existence of chronic CRPS wasn't disputed. I'm there myself, but fall in the camp of having made many improvements. Also I suppose it will always be possible to point to an instance where a treatment won't work or can't be done or even considered. But that was not the point of my posts.

I was trying (as always) to welcome someone new and provide hope and positive information to that person. And with reason, since odds are in their favor for at least some recovery. I have ended up (again, sadly) feeling I have to defend my position and the new member to a degree and even things like phenoxybenzamine which was discredited without any citation. None of that is why I responded to Haywired. I am here wanting to help. It was pointed out that our forum is more thoughtful and supportive than others out there. I think this is a wonderful and highly valuable thing.

I remember how very, very frightened I was when I first got here. How I felt alone and out of control, not knowing what the future would bring. I remember it was the kindness of others, even those who'd suffered with CRPS a long time, that helped me through that difficult time. And by holding on to other's words "you are not alone" "we're with you" "sorry" "x,y, and z helped me" "read this article on outcomes" I was able to navigate and have patience as I slowly made gains. I enjoy giving that to others, it adds meaning to my own journey. I'd like that to be an easy thing for me to do. As it is I am now tired and we are (again) terribly off topic.

Welcome again to Haywired. Feel free to PM me when you've done some posting. I wish you well and truly have faith that you're going to make it through.

Hugs to all. I am taking a break and turning in for the night.

I think showing personal experience as well as the plus of early care, and the intensity of chronic pain is helpful. Offering insight into ways of mentally and physically dealing with chronic pain may be key to maintain at least activities that may keep the mind and body from sinking into hopelessness.

Hopefully Haywired having read both of your posts will have at least a prospective and a starting point as was stated knowing he/she tried to learn what if any alternatives may be out there. Having insight into ones that worked or those that were not helpful will also be informative.


Gerry

I hope so too, Gerry.

We're all just here to tell of our experiences. No more, no less.

The great thing is getting diagnosed before seeing 6-8 doctors (as is the norm according to many studies) thus giving one the opportunity to try many more treatments in the early stages. Good luck!