Hi MominPain

You sound a bit furious!! If I can be so bold, if I were you, I'd honestly try and find a way to deal with the frustration of having to explain CRPS to every PT, OT and doctor you come accross. Sadly, this is normal and you will have to do a serious amount more of it before you are through. I know it is frustrating - I have been doing it for a year now and it is beyond tedious. However, that is the harsh reality of having this condition - nobody has heard of it, nobody knows anything about it and you get utterly fed up feeling that you are the only knowledgable and sane voice out there.

It used to make me really angry until I learned to accept that its just how it is. The anger was making me feel worse (and it was only me feeling worse - the nurses and docs just walk off oblivious since you are only one of umpteen patients they will see). It is a waste of your precious energy and resources to keep getting angry and frustrated about something that you can't influence. Once you give in to it a bit and grudgingly accept this as a fact, you will feel much better - I promise! I am not saying that its right but you need to invest your energy in yourself.

Try not to get too down about the blocks apparently giving you no demonstrable therapeutic effect. It is very easy (I know because I've been there) to build up all of your hopes for the next procedure or med or specialist visit. You hope that this will be the one that works, that you will be cured of this awful thing, that you will meet a doc who "cares" and can fix things for you. Eventually after weeks or months of this you realise that whilst it is important to be positive about all of these things, you can't build up all your hopes before each appointment just to have them dashed. Again. it uses up too much emotional energy and makes the pain and your mood worse. You need to find a way to go into all of these visits with an optimistic but realistic attitude to save yourself the rollercoaster effect.

One thing I would say too is that you may be better to have a more hard-hitting package of meds at least in the short term until you come to terms with the diagnosis and things settle a bit. I am not advocating taking medication for the sake of it but anti-convulsants, anti-depressants and strong opiods are used for treating neuropathic pain because they really can work!

You may find that something stronger will actually manage the pain for you better than your current regime. To a large extent if you can stop chronic pain from getting worse by blasting it with meds that work for you and by ensuring that your mood is OK then you have a better chance of preventing it all spiraling downwards and becoming worse. Like you, my pain has never been constant - it came and went every day and it has also changed in nature over the last 17 months. I have found a set of meds that work for me. Getting better relief from the pain helps improve your mood which helps the pain in an upwards and positive cycle. Don't wait until you are depressed and the pain is getting worse before you seek help - then you really will seem like a desperate drug seeker!!!

I don't know if I said before but there is evidence that alpha-blocking drugs can be effective for dealing with the colour and temperature changes in CRPS because they dilate the blood vessels. I was prescribed alfuzosin (brand name Xatral) which is licensed for treating benign prostate enlargement (in men obviously). It verged on amazing for me - the temperature increased and the colour changes became less dramatic. The vascular changes can become irreversible so it really is worth pushing to try a drug like this. In the short term it increased the swelling and my leg felt unbearably hot but that settled in a few days and I have had no other apparent side effects from it. Its worth looking into this aspect.

I know this is long but I hope that the info helps.