I'm so sorry...definitely sounds like you are going through a rough period. Definitely sounds like you need a new physician to manage your care, and I hope that you are able to find a good one soon. Until I was able to find the right doctor who was able to help me I just felt like I was stuck in this endless cycle of pain that just got worse and worse while I lost more and more function.

The TENS unit that you have...is it a portable one that you could wear while walking? The one that I was given is portable and I hook it onto my pocket and run the wires under my clothes. This way I am able to get the benefits of it to sort of offset the pain that is increased by the activity of walking. I don't think I would have been able to get to the point I am at now if it were not for this. Not sure how much relief you get from a TENS unit, though. The portable one I have doesn't give me as much relief as I got from the treatments with the big machines at physical therapy...but it is enough to get my pain level down to around 5 (at least before I aggravate it with walking...then it starts to creep up over time).

I had physical therapy at home and I did that until I had used up all my insurance allowed visits. The good thing about having it at home was that I was given a list of exercises to do each and every day...and they are all things that I can do in my house without any extra equipment. In the beginning I made a checklist of all the exercises and the days of the week and my goal was to have 2 check marks in each box every day for all the exercises. When the therapist was there I obviously did them all in one shot...but on my days when I didn't have therapy I was able to spread them out throughout the day and just checked them off as I did them. I don't need to use the checklist anymore, but I do have a routine for doing all of my exercises every day...regardless of whether I feel like it or not. My therapist was wonderful and teaching me the progression of all the exercises. If I am having a bad flare, then I will revert back to some of the earlier exercises but I still do them. Even though I am out of visits, I still continue with the physical therapy ever day and I have seen so much progress in my function over the past 6 months that I cannot imagine NOT doing these exercises every day. I think that physical therapist saved my life because she gave me back that quality of life.

I find that there really isn't any ONE thing that by itself works to help me with my pain. It is more about having a routine and a bunch of small things that all help a little and figuring out how to use those things together to make life more bearable, including coping strategies to help me get through the worst pain. Here's some things that I do that help...maybe there will be something in here that you haven't tried that could help you manage the pain a little better.

I start my day with a warm bath, followed by a 10 minute treatment with an ultrasound machine. After that I usually put on my TENS unit, though I don't normally turn it on right away because the bath and ultrasound are enough to keep the pain around a 6-7 by themselves. I follow the 4 F's diet and I will usually make myself a good breakfast. After breakfast I will turn the TENS unit on and do some exercises.

If I know that I am going to go outside, then I will put a heating pad or patch on my ankle and neck (I have RSD in my upper body too) to protect me from cold air and to provide me with additional relief (because heat helps reduce my pain in my RSD areas). I have a microwaveable heating pad that I normally use...but if my pain level is already pretty high then I will use the disposable heat patches instead as they are very light weight and still provide enough heat to be beneficial. I have spent a while trying to find clothes that can provide warmth without weight and I have fallen in love with Columbia Omni Heat base layer clothing. It has metallic lining in it that reflects your own body heat and that has helped protect me from the cold without having to really bulk up and wear a lot of layers (which can aggravate the pain).

I only have a couple of pairs of shoes that I can wear because of the pain...nothing special but just ones that do not put weight or pressure on the most sensitive and painful areas on my RSD ankle. I work the PT exercises in throughout the day.

I have RSD in my hands and arms as well, and my physical therapist told me that doing activities with my hands that required precision would be good therapy for me. I love to cross stitch and do puzzles so those have worked out perfectly for me. They are painful activities now that I have the RSD in my hands, but since they are things that I enjoy I am able to push through that pain and the function in my hands has gotten much better over time. I still can't do either of those things for long periods...but even just doing them for a few minutes here and there is good for me. I also love to read but the RSD has unfortunately taken away my ability to focus on things like I used to. So instead I listen to audiobooks and I find that escaping into good books this way is a great coping mechanism for me. I am bothered by sounds and vibrations, so when there are loud noises that I have no control over I put in my headphones and listen to music and that seems to help (thanks so much to lit love for this recommendation).

I also try to make sure that when I sit down that I do not let myself sit for long periods of time. I don't necessarily have to get up and do an exercise...sometimes it's just a small thing like getting up to get a glass of water, to let the dog out, to grab a snack, etc. If I am having a particularly bad flare where I feel like I cannot get up and walk because of the pain, I will do some of the ankle exercises I learned when I was stuck in a wheelchair so that I am still moving. I have noticed that if I do not move my RSD affected limbs for a period of time they begin to hurt worse and it makes moving harder and then it's just sort of a vicious cycle. I know I have to alternate between moving and resting, so I try to balance those two things throughout the day.

Also...because heat is something that I find helpful...I have a space heater that I use when I will be in one room for a while. I like it because I can take off the clothing on my RSD areas and get the benefit of the heat without having anything touching me. I also find it helpful during the summer when other people in the house have set the AC cooler than I like it...I can have the space heater on to make sure that the area I am in is warmer so I don't have to be all bundled up.

As I mentioned before...cold is VERY bad for me and causes the most intense pain in my RSD areas. I have gloves that I wear whenever I might be exposed to cold air or a breeze...regardless of whether it is summer of winter. AC is just as bad as cold temps outside for me. So I make sure that I put on my gloves whenever I need something out of the freezer, if I am answering the front door, if I am letting the dog out, if I go out anywhere, etc. Same goes with wearing a scarf...my neck is exptremely sensitive and I need to make sure that it is covered. The fabric touching it hurts (same with the gloves) but compared to the pain of cold air it is something I can live with. This is why I will put a heating patch on my neck if I am going to be outside during the winter or indoors in the AC during the summer...the heat offsets the pain of the fabric touching my neck which in turn offsets the pain I would feel if my neck were exposed to the elements.

I find that with RSD it is often about figuring out what is the lesser of two evils and balancing those things out throughout the day...every day. RSD is such a fight, each and every day, just to live our lives. These are most of the things that I do to help me with the pain. They aren't treatments...but they are all a bunch of small things that add up to quality of life that I would not have without them. I am a firm believer in not worrying about the things that you cannot control and focus on the things you can. I cannot control the weather, but I can control how I choose to cope with it. Another good quote that I like is: Think of the solution, not the problem. When you focus just on the triggers themselves for the pain then you can go mad (been there), instead you need to focus on the things you can do to cope with or avoid those triggers.

I know different things work for different people, so many of these things may not work for you. But I always think it is worth sharing because I learned many of these things from other board members over the past couple years. Little things here and there can make such a big difference once they are all put together. I know we rely on doctors for treatment of this condition, and properly managing the symptoms of RSD is what makes all these other things possible, but there is no miracle cure (yet) for RSD...so we have to do our best to fight for the best life we can possibly have. You sound like a fighter, so I have no doubt that you will do everything in your power to fight this condition and keep/get back your quality of life. Definitely use this board as a resource to give you more weapons to fight your battle. Lots of people on here have experience with various treatments and hopefully you will find one that will work for you. I would recommend reading the thread about the tDCS...that is something that I am very interested in trying and might be something that you could discuss with your doctors.