AF and non associated pain

[debilitated]

Good morning all, along with Atrial Fibrillation and Atrial Flutter I have spondylosis caused by degenerative disc disease at levels C5/C6 and C6/C7.

I have had two Atrial Fibrillation ablations and one Atrial Flutter ablation. All between July 2015 and October 2015. In April 2016 I had a second batch of steroid injections in and around my neck, shoulders and back of head.

My Consulatnt EP at Harefield was positive that at my appointment last month I was not in AF and was not describing symptoms associated with AF or Flutter. But it feels like I am in AF at night (pounding, rippling, extra thuds etc) and in the day my heart constantly has racing patches on the tiniest bit of exertion.

He felt my symptoms were being caused by other influences for which he made no suggestions and pointed me back to my GP.

Given that I am in chronic/acute levels of pain with my neck 24/7 I wonder if that could be the cause of all the extra heart activity and maybe been a situation of confusion for the past 9 years.

It's difficult to believe that constant nerve pain would not have some affect on the heart and my pain anesthetist is apt to agree, but as mentioned above, my EP was rather dismissive. Does anyone else suffer from extreme pain on a daily basis and do you feel there is any connection?

[Hidden]

There may be a connection between steroids, severe pain, anxiety and cardiac irregularities. Will your provider order 7 day monitor to verify what is going on outside of a brief office exam?

[debilitated in reply to Hidden]

Thank you for your reply. The last 7 day Holter Monitor (three months ago) recorded numerous sudden patches of palpitations, mostly during sleep and resting periods but my EP felt these would not have been caused by AF.

[stix]

Having my sleep permanently disturbed by constant pain is causing me much stress so sleep depravasion is a major cause of AF and i believe what started mine in the first place. Now its raised my anxiety levels which cause more pain, just seems a endless cycle

[Boombiddy]

Hiya debilitated,

very sorry to hear you are in so much pain. I found your question a very useful one, as I too have chronic pain (and various other sleep preventing problems too boring to burden our readers with).

I really would like to see a reply to your post that is specific for AF.

Anecdotally, I can say that pain has an effect on heartbeat.

I don't want to bore you with my (rare) condition where the 'fight or flight' response overreacts to stimuli which include pain, (lowers my already low BP so the heart has to speed up to get the circulation moving). But from dealing with it, and with chronic pain, I have learnt a bit about it which I hope you will find helpful.

'Fight or flight' is activated by pain, even in people without my condition, (so it does make sense that it would affect heart rate, not necessarily to the extent seen in POTS & AF. I would like to see a study done re whether pain and the associated lack of sleep put strain on the heart in the long term).

Plus, as seen in stix's reply, pain causes anxiety, anxiety sensitises you to pain, which causes anxiety... This is a vicious cycle which I believe good pain management support would help to break.

I saw your post cos o looking for people near me, so I'm guessing you live near London.

So, forgive me if this is not a helpful suggestion for your situation, but there is something that has benefited me tremendously and I wonder if it would help you:

I had the benefit of what is probably the best pain clinic in the country, "Input" Pain Management course at St. Thomas' Hospital in London. It was 18 years ago, and without it I really would not have coped.

I could not recommend it highly enough because:

It helps you feel so much better and to manage so well that you can eventually prevent flare-ups of your worst pain.

It helps you to manage pain 'down' on a daily basis, really making life a lot more interesting and less discouraging.

Plus it really helps with morale, mood and anxiety - which are problems for all people in chronic pain.

Naturally, there are times when pain will flare up but you are more in control and less distressed. A flare up can be managed better and you can begin to feel better, so life does not just 'stop' that day leaving your plans devastated again. You may slow down a bit and reschedule but still get some life and fun in that day.

It was not a moralising or chivvying environment, it was hugely supportive and you were treated as a whole person, not a condition.

Sorry this is a bit long, but wanted also to say, that if you do consider going for this, and your GP raises difficulties (as mine did), the staff at "Input" are very good at helping you to make a case for it.

Here is my example, in case you need this to encourage you when it's difficult:

I rang them all those years ago, in screaming pain, had been hours in severe pain unable to get off the floor and get a drink of water, and asked why they had delayed taking me on the course. They told me my GP had blocked it saying there was no proof it worked. They stayed on the phone with me one and a half hours! talking me down to reduce my distress, then went and made the case for the Pain Management course to my GP.

I hope you can get the support you need for your pain.

Wishing you all the best.

[debilitated in reply to Boombiddy]

Hi Boomdiddy, many thanks for your extensive reply to my 'AF and non associated pain' post which for some reason has only just shown up. I can see it was written a month ago, so many thanks for that. I will look into Input at St Thomas' as the pain clinic I have been under for two years has just referred me back to the neurosurgeon at The National Neurological Hospital, Queens Square.

[Boombiddy in reply to debilitated]

Hi debilitated, thankyou so much for your reply. I do hope you get sorted out.

Best wishes from Boombiddy.