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AF Association
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An anxious drive / Inflammation

Last week I saw my GP who ordered a chest X-ray and some blood tests. She called today and asked if I was free to speak. I said I was driving but on Bluetooth so was fine to speak. She said she wanted to speak to me about my X-ray results but didn’t want to interfere with my driving and could I call her back when I arrived at my destination. “Fine” I said but of course for the rest of the half hour drive I was thinking about what it could be. If there was no problem she would have said so or told me when I go to my next appointment next week. My imagination went wild 😜

Anyway, it turns out I have bronchitis so had to go and pick up antibiotics to start today. She was speaking about the inflammation in my lungs and of course I had a lot of inflammation after my ablation. I’m also seeing my physio because of lower back and shoulder pain and now my hips and my dodgy knee are also playing up so I wonder what’s going on in my body. Autoimmune problem possibly? I continue to have AF episodes each day despite lots of drugs and I’m being sent for an endoscopy soon as I feel like there is a big rock sitting in the middle of my chest. Last week I had a sleep study and get those results next week.

I just want to get to the bottom of things and get some answers. I am eating healthier than ever, exercising daily, doing regular breathing and mindfulness exercises, not drinking alcohol or caffeine, focussing on my sleep, not stressing, have lost weight - I don’t know what other lifestyle changes I can make.

I guess I’m feeling frustrated. If you have autoimmune or chronic inflammation along with AF please share your experiences.

Oh, and everything was perfect with my blood tests apart from an elevation in one of the liver function enzymes which is likely to be caused by the Amiodarone. Will see what my EP says about that next week.

I’m so over all of this 😩 My positive outlook is waning somewhat.

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Life can be quite a challenge sometimes so lets hope you start to get some better news soon Karen! You must be feeling fed up I know I would be... Fingers are crossed for you and keep your chin up you will get there soon... 👍 take care.

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Thanks Dave

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Cyber hugs for you (((( )))). Keep strong.the alternative doesn't bear thinking about.

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Thanks Bob. I really appreciate the support of everyone on this forum.

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Perhaps relax a bit, especially if dodgy bits are complaining. I had a chest infection recently and had the 'rugby ball under the ribs' feeling for several days which from previous experience was caused by lung congestion (pneumonia actually) but I think fluid buildup was part of this one. I can see how depressing it must be when you are doing all you can, I really admire you as I have gone I into temporary zombie mode except for healthy eating as I believe that is the essential thing if your system is struggling.

Remember we are all sending you strengthening and encouraging thoughts and wishes 💞

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Thanks Buffafly. Apart from having minor crazy thinking episodes like this “what’s happening now? Will this ever end?” I am pretty calm. My friends and family keep saying, “how can you keep smiling with what you’re going through?” but there’s no point moping around. I even have times, when I’m feeling really good, that I wonder if it’s all in my head and I’m making a big deal out of nothing 😀

I’ve been off work now for 7 months and we live in a beautiful spot surrounded by nature which I love. I’m trying not to let the lack of income get to me. I’m seeing this as a temporary blip that will sort itself out.

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I find you quite an inspirational lady Kaz. 😇 It's so disheartening when you are doing everything you can but not getting the reward that you deserve. I really hope things improve very soon. Stay strong. XOXO 🌻

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Thanks TamlaMotown. That’s a lovely thing to say x

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Thinking of you. You have been through a lot in such a short space of time and through that journey have shared so much positivity! Sending you well wishes and a hope for answers soon x

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Thanks BG2017. As per my favourite movie quote, “Everything will be alright in the end. If it’s not alright, it’s not the end.” x

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Keep at it. You are giving your body the best chance of healing that it will get. Be brave, fight the good fight and the results will come.

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Thanks Ian. You gave me flashbacks to Sunday school with your “fight the good fight” quote 😉 I’m armed for battle.

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Thinking of you tonight . No wonder you are feeling disheartened after all this. At least you are fighting back by doing the lifestyle changes,which can only help you.

Sometimes hanging about waiting g for tests etc is the worst thing...

Sending you a big cyber hug,and positive thoughts in Abundance xxx

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I know what you mean about tests. I had some tests in hospital last year that I was told could take up to 6 weeks for the results. They were looking for tumours on the adrenal glands. The doctor said “I don’t think you have cancer but we need to rule it out.” Yikes! 😨 That was an anxious wait 😬 xx

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My GP did the same for me before he retired. He did say he'd never found anyone yet. Think he wanted his name in lights before he went. I fear that being upbeat and positive in the face of adversity is very exhausting. A day off to let it all hang out is therapeutic and does not impact on your positive outlook I promise. Hugs

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The cardiologist I saw then (as mine was on holiday) said he’d done this this test on average every fortnight for 5 years and only once had it come back positive. He was a lovely doctor with an interesting past - he initially studied architecture, then studied teaching and taught high school for 8 years then told his wife he really wanted to be a doctor so went back to uni - now he’s a cardiologist. It’s a great tale in career change 😃

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In your position, I would ask my gp if the chest X-ray changes were anything to do with the amiodarone treatment.

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Thanks Oyster, I see my EP next Tuesday so I’ll ask him that.

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Kaz, please check before then, there can be a connection.

medsafe.govt.nz/profs/PUArt...

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Thanks again Oyster. Interesting reading. I’ve just emailed the link through to my GP so I’ll see what she says. That looks a bit worrying.

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Update: thanks again Oyster. My GP has just phoned me. She rang my cardiologist/EP and they discussed my health. They agreed that the x-rays looked more like bronchitis than toxicity that is usually seen with Amiodarone but as my blood test showed elevated levels in the liver function, I’ve had numerous rashes and I have a cough and lung issues I’d be better of off it. I have to halve the dose until I see him next Tuesday and we’ll see what happens then look at stopping. Thanks again for the info - my GP said it was definitely worth asking the question.

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I see an integrative doc as my primary doc, he filters out the info the cardiologists and EP throw at me, lol. He ran a few blood tests, a few I recall that pointed to overall inflammation were CRP and fibrinogen level. I too am working on putting out the inflammatory fires. He recommends all the usual, wt loss, exercise, good sleep. Im supposed to follow low carb mediterranean diet, lots of veggies, dont go crazy with fruit. Avoid higher carb veggies like potatoes. Use extra virgin olive oil, daily nuts or healthy fat like avocado, walnuts, almonds. Avoid all fake foods and drinks, avoid artificial sweetners. On and on.... Im working on it. Im slmost 66 and over the last few years my health issues list keeps getting longer. My hubby( pushing 70) is the no exercise, junk food, pepsi drinking guy who has been health problem free in the 40 yr Ive known him!!! I quit lecturing him about healthy lifestyle changes.🙄

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That sounds like my diet Hoski 😉 My husband is very supportive thankfully although he did say on Sunday when I served up Vegetarian Stuffed Mushrooms with 2 different salads, “we’ll be vegan soon” 😀. He has rheumatoid arthritis so he is conscious of healthy eating and exercise.

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Thats helpful your husband is on board. Mine eats without complaining what ever I cook( beggars cant b choosers). He has a " hidden" stash of candy, etc that sometimes calls my name!! I try to plug my ears🙉

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😂😂

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Mine just cooks what he prefers himself 😒

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Hohoho just wait.......see my latest post 🙄

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Yes I have Autoimmune Conditions, I traced mine back to developing Ulcerative Colitis in my teens. Any inflammation flare definitely exacerbates AF. I take 300mg of Cellcept - immunosuppressant - to keep things under control but it leaves me very open to things like chest infections. I developed Myasthenia gravis after treatments for AF - Beta-Blockers, rythm control drugs and ablation which all contributed to exacerbating the Mg.

Healthy eating plan, weight management, exercise, managing stress and good sleep (I use CPAP for sleep apnea which has helped improve sleep quality which has helped everything else) and pacing myself - quite severely, I can do so much less than I could 5 years ago.

I find the things that exacerbate everything are getting overtired, stress, strong emotions, pathogens, unusual (for UK) high or low temperatures, any invasive procedure - I am high risk for any sedation or aenasthesia - most drugs which begin with ‘anti’ - several antibiotics could be life threatening for me so I have to double and treble check anything prescribed.

Much of my time which used to be filled with fun things are now spent on researching and managing everything,

I don’t think you ever really get to root cause but what I do know is that you do learn as you go along what you can and can’t do/eat/exercise and that every time you think you may have got a handle on things, something else pops up.

Best wishes CD.

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Thanks CD. That certainly sounds challenging. I guess you have to do what you have to do. I used to listen to lots of podcasts and read books about leadership and business, now I’m listening/reading things about health, wellness and medicine 😀 I have learnt so much - my husband calls me a walking medical encyclopaedia. I’m 54 and I’m not ready to slow down yet - I want to get back to work and keep travelling the world but perhaps my body has other ideas.

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Adaption is the key. I’m 67 and last year was the first year we didn’t travel the world - we just did things a little slower and with a bit more comfort. I went part-time for the last 5 years of my working life and gave up completely aged 63.

I now help run a social enterprise group to promote healthy lifestyles livingwelldevon.co.uk on a voluntary basis so I do what I can, when I can.

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Yes last year was the first year in 25 years that I didn’t get on a plane - so unlike me. I’ve done quite a bit of work over the last few years with startups and social enterprises so it’s interesting to see what you’re doing. Who knows? Maybe I’ll end up doing something similar myself one day.

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Life has a habit of taking us along different paths!some of which are scary ones through dark woods,but eventually lead to 'spouse's places! I had to give up work on Ill health grounds partly because I had bad enough of the stress etc( community teacher working with vulnerable and often difficult families) but also through the local authority easing me out shall we say. I have found it hard to adapt but am now looking at what next,and like CDreamer ,do what I can when I can.When you are feeling better,a new focus will help ease you away from concentrating on your health( which is obviously an understandable at the present)

Keep your chin up mate xx

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Hopefully I still have a job to go back to 😃 Because my husband has his own health issues he had cut back to 3 days a week and I was the main breadwinner so if I can’t get back to work we’ll have to rethink things. We have a party in Santorini planned for June next year for my husband’s 60th with around 30 guests from Australia, UK and Canada (we had 16 there for his 50th). I really want to be well for that but if we can’t continue to travel as we have in the past, at least we’ve seen a lot of the world.

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Yes you are eating well as I see your recipes. My EP said there’s nothing I have done to cause my last event- wishing you the best- keep the mindfulness and breathing - hard to do - thinking of you and hugs

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Thank you. We always had a pretty good diet but I’m now focused on making it even better.xx

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Where do you see the recipes please?xx

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On the Healthy Eating forum on this site 😉

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Thinking of you and really hope things improve for you very soon, you’re an inspirational lady x

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Thanks Maura x

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And that other old quote 'when the going gets tough, the tough get going!'

Seems like you've had more than your fair share Kaz so thinking of you and looking forward to our coffee in March 😎x

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Thanks - I’m looking forward to it too ☕️ xx

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Good Morning, even though all these things are gong on in your body you must pat yourself on your back. You sound amazing to me. I have got my AF under control, but I seem to have so many other,things not quite right. I can’t seem to lose any weight though. Someone said yesterday that I am such a strong person!! I can’t help you with what you are asking someone,will. But keep going. And give yourself a Gold Star.

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Thanks Gillybean123. For weight loss I’m focusing on eliminating, or greatly reducing, processed food and carbs - eating low carb, healthy fats, and mostly plant based. I’m also doing time restricted eating - having 12-14 hours between dinner and breakfast. Sleep, stress, relaxation and deep breathing also have a big impact. Keep at it and don’t get dejected 😃 xx

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Good Morning, yes just been sitting here having a good think. Gong to be strong as usual and get rid of some of this weight. I only want to lose 2 Stone. So 1 stone by the end of February. Have a good day. P.s. 14 hours is a long time not to eat.

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It hasn’t bothered me not eating for 14 hours as I find I’m not hungry at all. Not sure if it’s because I’m eating more satiating food or if it’s the drugs I’m on or just not being 100% well at the moment. I’m currently reading Dr Ranjan Chatterjee’s “The 4 Pillar Plan” and have just finished “A Fat Lot of Good” by Dr Peter Brukner. Both have similar messages.

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I will have a look into those. I need so,etching to read, isn’t it a pain feeling off all the time. But still we could be worse. X

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That’s what I keep thinking 😉

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What antibiotic did she give you?

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Doxycycline

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Aaargh! I just had that, terrible heartburn but I found dry biscuits helped.

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So far so good for me 🤞🏻

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Better than a fluoroquinolone!

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Hey, West Aussie! That’s rotten news for you. Easy for me to say, but hang in there. Winston Churchill said: when you’re going through hell, keep going. So hang in there.

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Thanks - I’m hanging 🤪

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So sorry you are now facing this as well. You are known for your lovely upbeat posts but it must be hard putting a brave face on all of this. Really hoping you get some answers and success with your treatment. Sorry I can't help as with any personal experience of inflammation.

Just a point that Buffafly made about the side effects of Doxycycline. I was prescribed this a few weeks ago for pneumonia and the final dose I forgot to drink with lots of water. I developed esophagitis which was most unpleasant. It hurt to swallow, even fluids, for about 10 days. So don't forget to drink lots when you take this particular antibiotic.

Best of luck and good wishes x

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Thanks Irene, I will make sure I drink plenty of water with it. I certainly don’t want esophagitis - I’m trying to organise an endoscopy at the moment and want to get the bronchitis under control- I don’t need any more complications 😀 I do feel like I’m on a medical merry-go-round and can’t get off 🎪

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Yes! I’m 69 and have an inflammatory autoimmune disease (2 yrs) as well as permanent A/F (15 years).

There’s a lot you can do and you’re already doing a lot of it!

Sleep is absolutely KING and is the base that supports the other pillars: diet, exercise (very gentle!), stress-management and support. All of these are key.

I’ve been following the Autoimmune Protocol (AIP) lifestyle and diet for 10 months - similar to yours and the diet is very restrictive to begin with but well worth it. You’ll find lots about AIP online if you’re interested. There are several experts out there who have learned by their own personal experience of having AI disease and working out how to manage it, and their advice and knowledge can be trusted. Dr Sarah Ballantyne is one I’d recommend and I follow her guidelines myself.

I also have an integrative/functional practitioner on my ‘team’ and she’s been a godsend. Pricey, yes, but what else am I going to do with my dosh if I don’t have my health? No one else goes through my test results and medical notes with such a fine tooth comb and she’s found weaknesses and deficiencies that others haven’t and prescribed dietary changes (additional individual ‘tweaks’ to AIP) and carefully chosen supplements that have made a massive difference. I no longer have to take some of the allopathic meds that were causing high levels of toxicity in the liver and responsible for a lot of the overflowing inflammation and resulting panicked immune system.

I’ve lost well over two stones and reversed Type 2 diabetes in the process as well as reducing pain levels and increasing mobility. I feel SO much better!

I’m not done yet though and consider my health to be a work in progress...

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Thanks xdbx for sharing your experience. I’ll check out the AIP - my husband has Rhuematoid arthritis so it could be good for him too. I ‘ve implemented a similar sleep hygiene schedule and I make sure I read a book before bed. I used to be a wonderful sleeper. Last year I had shingles and postherpetic neuralgia so was on some drugs for a few months that knocked me out and I was sleeping for a solid 9 hours (sometimes 10). Since stopping those drugs I’m averaging 6-7 hours and I’d like to get that up. I have a Fitbit and find the sleep monitoring very interesting.

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Yes, Fitbit led me to afib and sleep apnea diagnosis. Had an ablation and then got cpap machine ...sleep did improve but now less deep sleep again ...26 minutes isn't enough! Also have fibro, so perhaps inflammation plays a part. Arthritis has gotten worse since the ablation. Knee and shoulder..yikes! Lovely to share troubles and be understood!

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I’ve recently been diagnosed with sleep apnea when I’m in REM sleep. my deep sleep is normal and in other Non REM sleep I have some mild hypopneas (partial restrictions). I currently trialling a CPAP to see if it helps.

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Yes, mine was mild to and yet I did feel quite a bit better during the first month, more rested in the AM. Turns out that falling asleep in my recliner also helps me get deep sleep:) Love that FitBit!

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