Hi Rory

This is a long tough road you've been on, I hope your docs can help you more very soon, you must be so frustrated after so long without real answers or effective treatment...

Until your later post I was thinking 'probably not CRPS' because you didn't mention any temperature changes or skin sensations, etc - but then you did OK, so it could be CRPS....but it could also be several other neuropathic problems, and only a neuro doc can really tell you that. It's crazy that they won't approve one - appeal to your regular doc to back you up in asking to see one. As a patient, you have the right to appropriate care - and when your symptoms are neurological, you need to see a neurologist.

In the meantime, I would suggest you keep a pain and symptom diary. Doctors love it, because it is a massive source of information for them, and also shows that you are a proactive patient. Each day, note your pain level out of ten in the morning, afternoon and evening. Also note key symptoms, visual (ie a rash, odd skin colour) and those felt (ie burning sensation, stabbing pain) and where they occur. Note anything major in your life that day, like exercise or a family event, or a stress like a sleepless night. If you get any visual symptoms at all, photograph them (or get someone else to) and show them to your doctor. It's easy sometimes for a doctor to dismiss what we say during a consult, but if there is evidence, they have something definite to go on...sad but true.

It's also a good idea to overhaul your diet and see whether you could be giving your body more nutrients and minerals to help it fight whatever is going on. I'm not trying to imply your diet is rubbish lol, just that we all get into habits and not all of those are good when it comes to food (I know this one too well!). You don't need to go mad, but things like reducing sugars and processed food, and eating more fruits and veg can really boost your energy and reduce some of the stress on your body's systems. Taking vitamin C every day is a good plan too, because it's something it's easy for us to not get enough of, and it is vital for our immune system - its also been proven to reduce the risk of CRPS spread (even if you don't know if you've got it).

Unperfumed Epsom salts in a warm bath also might be worth a try. They can ease some CRPS symptoms when used regularly, and again magnesium is vital to our bodies and something we don't normally get enough of.

You mentioned you take some meds - are any of them specifically for these stabbing pains? Have they tried you on something like Gabapentin or amitriptyline? Both are tried often on CRPS as they can reduce the nerve signals causing the pain. I take Lyrica which is a kind of cousin to Gabapentin.

For now you don't know exactly what's causing all this, and only a doctor can tell you for sure. In the meantime though, read up on CRPS from reputable sites (Wikipedia, RSDhope, etc) and try to rationally consider your own symptoms. It's very dangerous trying to diagnose yourself, because our minds are odd things, and it's perfectly possible (and happens often) to read about something and then have your body almost head in that direction. On the other hand, if your docs are failing you, you do sometimes need to take charge of the situation and try to figure things out. It's a delicate balance. Just don't overdo it and stress yourself out with some of the more terrifying conditions you will probably come across...steer clear of photographs especially!

Really really good luck. I hope you can catch a break soon and find some answers and treatment. You deserve better than this. If necessary, you might have to consider trying a new doctor and getting a fresh perspective.

Bram.