Weirdest illness ever?
 

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! :confused:
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?! :eek: 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. :(

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. :rolleyes:

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

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.

Hallo again

He had another episode this eve. he said he could barley move and was violently shaking all over, more like a seizure but also with the heart attack like symptoms. He also says he feels physically unwell for quite a while before the attack happens.

Panic attacks? PoTS? CRPS? Something else. My head is spinning with all this.

ali, I have suggested the water and extra salt thing. I hope he will give it a go but he seems to be being purposefully awkward with me at the moment. Resisting my attempts to help and get stuff done. I know he's in a bad way in the head with all this but it's getting quite frustrating and he's not the only one with mental health issues. And now i feel guilty for being angry at him too.

Stop the world, I wanna get off. :(

There was a point that I had vertigo, was falling and passing out. I knew they were CRPS related and I was so focused that my pain was my WORST symptom that I wasn't aggressive enough about dealing with what were actually dangerous issues. Even after falling down my stairs I didn't go to the ER.

He really needs to go to the hospital when these attacks happen until it is proven they're panic attacks and not life threatening.