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.

Thank you for your response. This has been a very frustrating few years. When I woke up from my neck surgery with the pain now in my other arm, I couldn't believe it. And its just gotten worse. I am so lethargic, and pain everywhere, stabbing and deep achy pain. Until about 2 months ago I was walking 2 miles a day, and I tend to eat a pretty balanced diet for the most part. Of course, I could make some improvements.

I do take gabapentin, nortriptyline, and have tried lyrica. I feel like they help just a little, not as much as I would like. But I do take pain meds also, and have taken these for about 12 years due to my neck issues and now due to all of this other stuff. So most of the time its tolerable, but this latest incident since Xmas feels different. And I do take magnesium, b vitamins besides my normal vitamins, fish oil. Also I was diagnosed with hypothroidism, although I am not overweight. I feel like I was in pretty good health until the last few years.

I am at the point where I might go back to the surgeon who did my 3 shoulder surgeries. Maybe he will have an idea, and it might make him feel better that whatever was wrong with my right arm is now happening to my left arm. He felt really bad he couldn't make the right arm better. We developed a pretty good relationship after 3 years together!

Thanks

Hi
I wanted to also say that my pcp has been wonderful. He has put in so many referral requests trying to get me to a neurologist, but they are not cooperating! He knows something is wrong, and he does his best for me. Maybe we will finally wear down that ins Co!
Thank you

I'm glad you have a good PCP, that's a wonderful and rare thing... Sounds like a good idea to see that shoulder surgeon if you have a good relationship - even if he isn't sure on CRPS, he might be willing to consider it and read up a little to give you his opinion.

Well done on the diet and exercise thing. You sound like me on that score! Up until about three years ago, I was very active, lots of sport, ate well etc. didn't see this coming at all... Oh well. It's scary how quickly you lose your conditioning though with something like CRPS. Keep exercising (or just moving!) as much as you can - once your muscles start to go soft, other things can start being a problem too. Core strength in particular is key - I'm desperately trying to regain some of mine!!

Take care and have a better day.

Bram.

Thanks Brambledog for all of your ideas. I really appreciate them! I normally enjoy exercising, but these last few years has been challenging to say the least. I havent really done too much in the last 2 months but I am going to start my walking again. We will see how that goes. My arms are so bad that when I'm on the treadmill I hang on to the sides because they hurt to have hanging at my sides as well as the movement from walking. Better then nothing I suppose!!!

Last night I had the burning in my leg, and then for the first time I felt it in my face. It felt like a spot about the size of a half dollar or so, and only lasted about 5 seconds. That was kind of scary.

Thanks again for your thoughts.