Hallo. I have a question for you kind and knowledgeable folks. My fella has been in pain for over a year with something that we think might be CRPS. It hasn't officially been diagnosed as that but the neuro guy thought there was nothing wrong and the physio lady mentioned CRPS. It started with possible plantar faciitis and has become pain in both legs and arms accompanied by sensations like electric shocks when touching something cold.

Last night he was rushed to hospital with what seemed like a heart attack but he was checked out and his heart is fine. He says he also blacked out briefly and is still feeling fluttering in his chest and pain in his left arm.

Is this a documented thing? I wondered if it was a panic attack but I'm not sure you can pass out when your heart is beating fast like that and his blood pressure was normal. Whatever this is it is one weird illness that doesn't seem to fit into anything I read about. Does anyone here have any experience of this? Any replies would be greatly appreciated and any matching symptoms would be a great comfort as we are both really freaked out!
Thanks folks

It could be spread to his heart and he might need a pacemaker. He needs to get to a RSD/CRPS expert.

According to the Budapest criteria he needs 3 of the 4 main symptoms
http://www.rsdhope.org/crps-symptoms.html

It can do that Lit Love?! That's pretty full on! UK nhs is pretty slow moving. It's been over a year now with hardly any progress. A CRPS expert probably doesn't even exist in rural Cornwall.

I'm sure he would tick all 4 of those boxes Kevscar. A doctor willing to take the leap and diagnose it hasn't surfaced yet.

Thanks for the replies. I'm starting to think that the CRPS has made his underlying anxiety problems worse. he was already diagnosed with generalised anxiety. Could the CRPS have caused a huge panic attack to come out of nowhere? He saw a cardio consultant at the hospital who was sure his heart has no actual defects.

If my memory is correct Dr. Getson discussed this on a video someone linked to at some point. I think he said he had put them in 6 patients?

And Cornwall likely won't have the expert he needs. But if he has spread to his heart, it could be life threatening if ignored.

Hopefully, it's not spread, but it's important to address the issue immediately.

If you want to do something about the NHS read my post
http://neurotalk.psychcentral.com/thread215207.html

This is the right lecture. https://www.youtube.com/watch?v=b3tRwd7U5nw

Info is shortly after 8 or 9 minute mark.

Hi Mabel,

Sorry to hear about your partners problems. There is nothing worse than KNOWING there is something wrong, but not having a diagnosis. I really hope you find a good doctor soon, I know just how difficult that is and how time consuming it is in the UK.

Just wondering, has your partner ever heard of anything called Postural Orthostatic Tacharcadia Syndrome (POTS). I have both RSD and POTS and a lot of the symptoms I have sound like what your partner is experiencing. The two also often go hand in hand, especially if he is hypermobile.

The main symptoms of POTS I get are chest pains, feels as though my heart is racing. I also black out, to the point where I used to faint around 20 times a day. Other symptoms are inability to control blood pressure (mine fluctuates a lot and is either extremely high or extremely low), inability to regulate sweating, an increase in heart rate upon standing / sitting too long (has to be by 20BPM to be POTS) and migraines on a daily basis.

If you want any further info let me know. I'm happy to help. One thing you could try is getting a BP monitor and keep check on his blood pressure and also his pulse upon standing. I'm under a cardiologist for it and if it is something you feel he may have i'd urge you to see a different one if possible.

Wishing you both well
Alison