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

Read and mailed Kevscar. I'm up for making a fuss on his behalf to get this illness recognised. Thank you for your hard work.

LitLove, I'm not sure what else he can ask for. He's had a full cardio check up and was told he is fine.

He has a doctor appointment for next week and is going to ask to see a cardiovascular specialist as well as the physio and pain clinic referral that he should have had months ago.
I wish there was more I could do for him. This thing has ruined his life. He was a wildlife photographer and guitarist. Now he struggles to get to the wildlife and he gets 'electric shocks' from the guitar strings. I can't give up hope for improvement else we will both sink into depression.

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

Info is shortly after 8 or 9 minute mark.

Thank you for the reply ali12. It certainly does sound a bit like the POTS thing. He says that sitting at his computer seems to be the worst thing for it. That is pretty grim on it's own because it's taking away yet another thing that he does to keep himself sane and happy.
He is going to ask to see a cardiovascular person so hopefully they will be able to get to the bottom of it.
He is pretty worried about having his driving licence taken away. We both live in rural areas and I don't drive so we would struggle to see each other if that happened. Do you drive?

Thank you for the video link LitLove. I am hoping it isn't that as his ekg was normal and not particularly slow or fast.

I have found out that there is a CRPS centre in Plymouth hospital so he will also be asking to be referred there.

Does anyone have any tips or lifestyle changes that might help him to feel better? He wants to get an exercise bike to try and maintain some fitness with gentle exercise, is this a good idea?
Thanks again everyone for the information and support.

This is something that might not be picked up on a doc's visit--he needs to be tested when he's having an episode.

Hi Mabel,

I also find that sitting at the computer or in one place for too long triggers the symptoms. I'm currently in university and have 2 hour lectures which lead me prone to feeling faint / fainting or getting migraines. Thankfully I have my university lecturers support and additional learning support in place if required. If it is POTS, symptoms often get worse from sitting / standing too long and then changing position so it definitely sounds like something he could be suffering from.

I'm glad he is seeing a Cardiologist. That is who diagnosed my POTS from several different tests including a tilt table test and a 24 hour Blood Pressure / Heart Rate monitor and blood tests. It is a slow process unfortunately but if it is POTS, he will probably be put on medication.

One word of advise and something you can try that won't do any harm is to ensure he drinks at least 2 litres of water a day and increases his salt intake. That is often the first thing doctors say to try before medications to see if it reduces the symptoms.

I have an automatic driving license (have to drive auto due to the RSD as unable to move my left food). The DVLA were aware of my POTS and I have it set where I am unable to drive the car if feel ill. It is really frustrating as I have to rely on others to drive me places, I can't actually remember the last time I drove... it was probably months ago. If I faint, I have to stop driving for at least 6 months.

The exercise bike is a good idea, the thing if it is CRPS is 'Use it or lose it'. Start off with really gentle exercises, and then build up when able. There is a very fine line between doing too much and too little. Another thing that may be worthwhile is signing up to a gym. I go to one that is aware of CRPS / POTS and my other health issues and they have developed a programme to suit my needs. It isn't a lot of work, only very minimal and doesn't include weights etc but it is worthwhile.

I hope things improve soon, keep us posted and if you have any more questions don't hesitate to ask me.