Hi ellery
I'm sorry you have had such an awful time with this.

For what it's worth your story and symptoms sound like classic CRPS, and in my not very humble opinion, your doctors have been doing you a huge disservice so far.

It is essential that you see a doctor who knows CRPS and can give you a proper diagnosis. Whatever is wrong, you need to get some treatment quickly. I would research some docs in your area and see someone ASAP. The lack of concrete positive test results is pretty normal with CRPS - the diagnosis is based on symptoms seen and reported rather than on tests. There are a few, like a thermographic test that looks at temp differences on your skin, but most docs can diagnose CRPS without that.

With a long-term problem like yours, you have to trust your gut instinct with the doctors you see. Any doc who says pain is 'in your head' is not a doc you should EVER waste your time with again. Keep searching until you find someone you can have confidence in, who makes you feel comfortable and gives you sound advice without patronising you or talking down to you

My own CRPS started after a knee surgery, and I was lucky to be diagnosed only two months in. It has spread from the initial site into my whole left leg, as well as jumping over to my right foot, and then starting in my left arm...such fun. In each new site, it starts as a burning pain, then over time becomes much more of a cold deep achy pain - that's the part (along with the colour changes and temp stuff of course) that makes me think you could have it.

But I'm not a doctor, and I can only give my opinion based on what you've said. Really push to see a CRPS specialist quickly now, and be prepared for you and your husband to fight to get a result. Treatment is most effective when started within 6 months - obviously you've missed that window IF it is CRPS, but you can still get physio (important that your physio knows how to approach CRPS) and help with your pain.

Until you get a decision on whether or not you have CRPS, you need to approach your health as if it IS. So the following are really important (massive apologies if you know all this already!!

- Don't use ice on any part of your body - elevate for swelling, and use a flannel dampened with cool (not cold) water if you really need something cool on yor skin.

- avoid extremes of temperature, from hot to cold etc. as it can be too much for your skin (which doesn't work as well as it should) to cope with. Listen to your body - if protests loudly at something, then try not to do that if you can avoid it.

- Don't exercise or do anything to the point of worsening your pain. Pace your activities and try to avoid the ups and downs cycle of activity followed by pain and inactivity. Easier said than done! Gentle activity little and often is good.

- get some unperfumed Epsom salts and try using them in baths, and also wrapped in a damp flannel on any burning pain. They really help, and the magnesium is important for your body as well. I find they really help.

Look after yourself and take care, I really hope you find a good doc soon and can get some help. This must be so tough, I really admire your strength through all of this.

Bram.