Hi Angelina, Dubious has some good thoughts. Do you have someone who is helping you in this-a family member or good friend. Sometime, it's good to take that person with you on appointments.
It's good you are in pt with experienced person. Sounds like you need a doc taking the lead in your care -experienced in crps. Before making an appointment, make sure they are experienced- ask about their experience and how many patients they have treated for crps -ask if they are board certified-
The autonomic nervous system that goes 'awry' with crps is behind many things. It is the ' fight or flight' response. View it like the acceleration and brakes of a car. The acceleration is the sympathetic nervous system that gets into overdrive and the para sympathetic nervous is the brakes that slows down the car. When they are working properly everything is fine. They do their jobs automatically and keep us balanced. But with crps, they don't work properly, We are in 'overdrive' hence the 'burning' 'fast heart rate' anxiety, OR the para sympathetic nervous system or 'brakes' don't work properly and we can have low heart rate, cold limbs, syncope or 'passing out'
The two systems work in harmony keeping us balanced when they are working properly, but with crps that is NOT the case. If you look at the chart on the autonomic nervous system on wikipedia-it shows what the two systems are involved with.
That is why there are many approaches to the treatment of this disorder. like pt, medication, biofeedback to help us regulate our body responses. relaxation techniques- HBOT that promotes oxygen to the vessels of the body. mirror imagary - and others discussed on this forum. and the more invasive treatments to try and interrupt the 'overdrive' of the nervous system.
As has been mentioned, the invasive treatments have been known to 'spread the crps' but there are others that have been helped by the same treatment. That is the scary part= deciding what to do. Because, I was 5 years in diagnosis, that decision making was not really an issue with me.
I personally feel there is a role of other medications besides opiods. That is why many drs. use anti-depressants, anti=seizures meds like lyrica- anti-anxiety meds- they 'calm down' our nervous system. Like the muscle relaxers are helping you. Opiods have their place to keep our pain levels down which is important, just be careful with them. But the other types of meds also keep our pain levels down. Does that make sense? Just my opinion and the 'approach' of most drs familiar with this.
It is 'natural' to protect our limbs being affected. But very important to keep it moving while not 'overdoing'
It sounds like you are aware of the need for an experienced crps doc to give you direction. The process of finding that 'right' doctor can be challenging, especially if you live in a smaller town.
Have you gone to RSDSA.org? That is a wonderful site with lists of support groups that might be near you. It is a well respected national organization. The had a two day annual convention near me that I attended. Many Drs. spoke, as well as the leader Jim Broatch that I met. That is how I found the local support group that meets once a month at a well known neurlogical hospital.
Hope this helps-Having you been reading maybe old posts here-there are some really experienced knowledgable friends that have posted well documented medical information like PUB MED etc. that are very informative.
I am not that computer savvy when it comes to searches-
How is your leg doing? loretta
P.S. You can buy a blood pressure kit at costco for about $40 that also does your heart rate. I keep track of mine, as I swing between high and low and have syncope.