Originally Posted by catra121

Welcome. I am very sorry to hear what you are going through right now. I have CRPS that started in my left ankle and a year and a half after the initial injury spread to my upper body (arms, hands, back, neck, stomach, chest, etc). Managing the pain can be quite a task and I hope that you are seeing a good doctor with some experience with CRPS.

As far as medications, when I first got the CRPS diagnosis, I was told that often it is about finding the right combinations of medications to help with the pain. I was put on Lyrica, Tramadol (for pain), Meloxicam (anti-inflammatory), and Doxepin (antidepressant to help me sleep). I was also given Lidoderm Patches which didn't help a LOT...but sometimes just that little bit makes the difference between being able to function and not. For almost a year, this combination worked well to keep my pain at a manageable level so that I could still function. I'm not saying this particular combo will work for you...just wanted to give an example of the sort of combination of meds.

I have a portable TENS unit that I can wear while I am walking (clips to my belt and I run the wires under my clothes). This has been the single best thing for me in terms of helping with the pain. It helps keep the pain at a level where I can function well enough to do physical therapy. Physical therapy is such a big part of recovery from CRPS...so you need to do what you can to manage the pain well enough that you can do it. PT is a slow process...don't expect miracles in a few weeks...but it can be key for getting your life back.

Also, as far at physical therapy goes, keep in mind that you need to do this EVERY DAY. Even if you only go to physical therapy 2 days a week, you should make sure that they are giving you exercises that you can do on your own. You should also have a progression of exercises so that if you have a particularly bad day with pain, you can revert to the easier exercises...but you still need to do them every day. CRPS is a use it or lose it sort of condition.

There are also lots of little things that I do to help with the pain on a daily basis in addition to medications and the TENS unit. Heat helps to ease my pain, so I have a variety of heating pads that I can wear, even when I am walking. These include the kind you microwave and the disposable kind you can buy at the pharmacy. The microwave ones are heavy...so if I am having a really bad flare those don't always work...where as the disposable ones are light weight but obviously they cost money to keep refilling my stash. A space heater is also good when I will be in one place for a while because I can get the benefit of the heat without anything actually having to touch me.

Hot baths with epsom salts are good too...this is usually how I try to start my day. Showers are too painful because of the way the water hits my skin...but a warm bath is always good. After my bath, I use an ultrasound heat therapy machine on my ankle for 5-10 minutes. The therapy itself doesn't seem at the time like it is helping...but I find that since I have started this I am able to go longer before the pain reaches those levels of 8-10 where I can't really function anymore. They used an ultrasound machine at physical therapy BEFORE I did an PT and then did the TENS at the end...this is what gave me the idea of getting my own machine.

There are only a couple of shoes that I can wear...after two years with CRPS I finally gave away all my other ones. Trying to find ones that don't aggravate the CRPS is difficult and frustrating...but what else can we do really? Socks hurt but I wear them all the time more as a protection for cold air and breezes (which hurts far worse than the constant pain from a sock). I have over time been able to find things that give me warmth without weight because the warmth helps but the weight hurts. I've tried many things over the years, and so far my favorite stuff is Columbia omni heat that reflects your own body heat back at you. I have their baselayer pants and top...this is huge when I need to leave the house when it is cold outside or if I am going somewhere that the AC is cranked up.

I also have to wear gloves and a scarf whenever I am going to be exposed to cold air of any kind. This includes if I am going to have to get things out of the freezer or fridge.

Also...check out Hooshmand's 4 F's diet. This is something I have been on for a few months now and it seems to be helping. Not sure if it's just because that's how far I am getting with my therapy/treatment or if it is because of the diet...but I definitely feel better and eating healthier can't really hurt.

Everyone has different things that they like and it is just important for you to find what works for you. Learn what triggers the pain and then try to avoid those things as much as possible. If they are things you can't avoid, then try to find ways to offset those bad things (like a heating pad when you need to go out in the cold). Sometimes, you have to choose the lesser of two evils. I've found that it's less about finding that one thing that makes the pain go away...and more about finding all those little things that you can do to make the pain more bearable. All those little things can add up to a better quality of life. But it is a LOT of work to juggle all those things...but you gotta do what you gotta do.

There are a lot of people on here who have been SO helpful. I've gotten so many useful tips and great advice for how to live with this monster. And of course it is always good to have people who can offer support when you need to vent or are frustrated.

Good luck...I really hope that you find some relief soon.