Originally Posted by loretta (Post 955816)

Angelina, I just remembered- the doctor that diagnosed me ordered a tens unit for me along with starting me in pt the next day. I do feel that played a part in my recovery and the insurance paid for it as well as replacement leads. Tens years later, I no longer need it, but it did help me when I was so sensitive.
Also, I feel epsom salt baths have been helpful in reducing swelling. I still use that- can buy larger quantities at costco. loretta

Originally Posted by loretta (Post 955808)

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.

Originally Posted by Angelina55 (Post 955991)

I do not really have that much family support. They mostly think I am "strong enough to handle it on my own" is what I hear the most or that I need to learn to do it all by myself. That I shouldn't rely on others. It is kinda frustrating. I try to get them to understand but I don't think I will ever get them to "get it". My dad is great but he works out of town and he is mostly good with just words and around the house. He doesn't want to go to appointments with me. He will call and check on me everyday, and always tell me that I can do this. He reminds me that he loves me and is here for me. He has come home early a couple of times to help me out. I don't have many friends, being in chronic pain will do that. I have one who is great but she is busy and can't be there all the time. But she is great.
I am looking for a neurologist but I don't know if there are any that are experienced in CRPS or not. I live in a small town in Idaho so finding one could be difficult. I do live near Spokane, WA but I don't know if I can afford the gas to go there all the time. I see one for my migraines so I will ask her. I have an appointment with my family doctor on monday so I will talk to him about it. I think you are right about finding a doctor that will oversee everything. Having one doctor that I can go to, handle my meds. I think that will remove some stress in my life and some chaos. Everything seems so scattered right now that it is crazy to try to follow.
The weekends my pain goes down, but that is because I get to stay in bed and stay off of it and "protect" it. I only do my movement PT in bed. And I don't have to wear pants. LOL So lately my pain has been mostly at a 7 with an occasional jump to a 9, mostly when I have to be in a car or when I try to clean the house. I still get spasms when I forget my muscle relaxers and sometimes even when I take them but they are not as intense. I really think my vitamins are helping because I am seeing a difference in the intensity in my pain. Atleast I am hoping. :)
Angelina

Originally Posted by loretta (Post 956108)

Hi Angelina, Sounds like you have a good 'plan' Hopefully your family doctor or migraine doc will have a good referral for you. Don't be hesitate to ask ahead of appointment if they have knowledge and experience of crps.
Many here can relate to 'going it alone' to the doctor. It always helps me to write down my questions and general well being. That way the doctor gets the 'general' accurate picture. (I tend to gloss over how really bad things are)
Someone also mentioned doing housework in shorter intervals- rest periods. I thought that was great idea. Moving regular and doing the pt and de-sensititizing is the main thing. I'm sorry your pain levels are so high. That is really tough.
How is your little girl? I'm sure she is a huge comforter for you. It is really diffiult for friends and family to understand crps and our struggle with it's various facets. It's ups and downs is confusing to us -let alone others.
Hang in there and let us know what happens when you talk to doctors and find a neuro doc. Hope that goes well. Take care, loretta :hug:

Originally Posted by ginnie (Post 956112)

The emg isn't such a fun test. Personally just with PN, my doc. didn't want to do it either. I would avoid it if at all possible. I so wish that all of us with some kind of neurological pain could be freed of it. See a good neurologist, and someone who knows and specializes in these kinds of disorders. ginnie:hug: