Fatigue & exhaustion

[ShimmeringLillyMae]

How long should a person expect to be from the bed to the couch after getting out of the hospital with your very first bout and being diagnosed with RVR Afib?? Its now been 6 wks, I'm so tired I cant function! Will I ever be normal again?? 😭

[Paulbounce]

Hi SLM.

I`m sure you`ll start to feel better soon.

Here`s why. When you are first told you have afib it`s pretty normal to feel down in the dumps. Been there and got the tee shirt. You`ll pick up soon and be back to your old self.

Take things slowly and go at your own pace. Set a small target to reach everyday and you`ll soon feel back to normal. There`s light at the end of the afib tunnel - you`ll see.

Enjoy your day sweetheart. You`ll be fine

Best,

Paul

[Hidden]

Does your doctor know you are feeling that bad? I was diagnosed 3 1/2 yr ago with the same, was put on sotalol at that time. I went back to work 4 days later. I was 62 at that time.

I think you need to make sure there isnt something else going on

[ShimmeringLillyMae in reply to Hidden]

I'm hoping it's the medication but he will not change any of it for me, I'm going to see an EP in a couple weeks hoping to get answers

[Hidden in reply to ShimmeringLillyMae]

Good as I dont think it is normal to be that incapacitated . Keep us posted on what you find out.

[CDreamer]

Absolutely agree with Hoski - I would normally expect to be that tired and exhausted for maybe 48 hours after a prolonged episode of fast AF, but not much more unless I was still in AF and not known it or I reacted to the meds or there was something else going on.

[ShimmeringLillyMae]

I went to my GP today and they feel I have some kind of autoimmune disease they dont know what's going on but now are sending my to a rheumatologist

[Hidden in reply to ShimmeringLillyMae]

Oh great, like you need one more problem to deal with! Lets hope it isnt anything major and they can get you straightened out. It is too easy to grow discouraged during these times. Hang in there and have hope for better days! Keep us posted💜

[Auriculaire in reply to ShimmeringLillyMae]

Lily it is absolutely normal to feel exhausted if you have been floxed. It is not just the afib. People who have no arrythmia after floxing are often bedbound for months with exhaustion. Have you started your magnesium yet? Many of the symptoms of floxing are those of severe magnesium deficiency as the fluoroquinolones deplete the body of magnesium. This has been shown in the research as to how they do their damage .

[CDreamer in reply to ShimmeringLillyMae]

That’s exactly what happened to me - I tested positive for serum AChR antibodies - Myasthenia gravis - it’s quite rare and tends to be muscle weakness rather than tiredness but I have to say that my 1st symptoms was extreme chronic fatigue, I thought it was AF related but that was only part of it.

The good news is that 5 years down the line the Mg is mostly controlled as is the AF. Keep pushing for answers and keep yourself informed - remember that you are the best expert on you and don’t let anyone tell you different.

Let us know how you get on and please feel free to PM me.

[CDreamer in reply to CDreamer]

PS - there is a long list of drugs I now cannot take including a lot of antibiotics.

[Hidden in reply to ShimmeringLillyMae]

I encourage you to ask them to do a full Epstein-Barr virus panel (4 tests) in this testing. My naturopath tested for this and it showed a reactivated EPV. Most people have this virus, but it’s dormant. Stress can reactivate it (I had mono as a kid), which can result in symptoms like you describe. The naturopath’s hunch is that it’s triggering AF.

No other doc thought to look at this, but I was the one who sought him out. I’ve written elsewhere about this; his dad is Dr. Stephen Sinatra, who embraces an integrative approach to Cardiology, so I was curious to consult with him, given his familiarity with AF.

You have support here at the forum to keep asking questions & looking for answers. So important!

[ShimmeringLillyMae in reply to Hidden]

Thank you for your response, I test positive for Epstein barr every time I have bloodwork done, I've always felt fatigued but this is way more then that, I honestly feel like I'm gonna die from this, super sick with nausea, headache, cant breath, weak arms and very shaky inside. If it were the epstein barr do they treat it with anything?

[Hidden in reply to ShimmeringLillyMae]

I'm fairly new to this myself, but here's what I've learned.

My primary doc hasn't had any experience treating EBV. My naturopath mentioned one (maybe more, don't remember now) approach used by Western docs that isn't very effective. He gave me a protocol that I just started last week. 4 tinctures and another powdered herbal formula that are supposed to clear it out in 2-3 months.

I'm also taking L-Lycine, an amino acid that boosts the immune system, and a special formulation of Vitamin C that is better absorbed.

My former acupuncturist introduced me to an herbal antiviral blend that I've been taking for a couple of years now. I'm convinced that it must have been helping greatly all along, in that I haven't had so much as a sniffle since taking it, and I haven't experienced the awful EBV symptoms typically listed.

I'm taking the protocol one tincture at a time so that I don't overwhelm my system. I do notice a difference, in terms of feeling stronger and some periods of heat/sweating, which I think is the immune system getting activated.

You might consider looking for a good naturopath or acupuncturist to help with it, if you're open to it. Of course, your tests might show other issues, too.

Are you in the UK?

[ShimmeringLillyMae in reply to Hidden]

No I'm in the U.S., thank you for the info, I will look into finding a naturopathic dr. I'm really getting beyond disgusted. Never realized how fortunate I was when I had health, nothing worse then sickness 😭

[Hidden in reply to ShimmeringLillyMae]

Where in the US? Feel free to PM me if you want. I can share details of the protocol- maybe you could consult with my guy if you’re close enough.

[CDreamer in reply to Hidden]

Have you or ShimmeringLillyMae ever been offered anti-virals?

[ShimmeringLillyMae in reply to CDreamer]

No, I've always been told to just eat healthy and get enough sleep, I never heard of antivirals?

[CDreamer in reply to ShimmeringLillyMae]

My GP gives me a repeat prescription for an antiviral every time I have a flare. It’s helpful but doesn’t eliminate the flare so is only partially successful. I’m going to investigate Nella’s link & talk to my herbalist here in the UK.

[Hidden in reply to CDreamer]

I mentioned the anti-viral I've been taking for a few years in my earlier comment. (These conversations can become hard to follow.)

Here's the info again, with more details.

I started taking an herbal anti-viral formula recommended by my former acupuncturist over 2 years ago. I swear by the stuff! I've not had so much as a sniffle since taking it.

I also mentioned to ShimmeringLillyMae that the anti-viral must have been keeping the EBV symptoms at bay all along because I have not had the symptoms commonly listed, except fatigue at times.

The American company that makes this blend is Evergreen. I've been impressed by their blends in general. You can only buy them through a practitioner, but if you call the company, they can give you contact info for practitioners in your area who work with them. They do have practitioners in the UK, too.

CD, I mentioned in response to your recent post that I highly recommend their Herbal ABX blend, which is herbal antibiotics. Quite effective in terms of quickly clearing up an infection, yet with none of the overpowering impact of regular antibiotics. I keep a bottle on hand and was impressed by how quickly it cleared up a gum infection a few months ago.

Here's the link for the anti-viral: tinyurl.com/evergreen-avr

I'm taking the max dose, along with my other immune system-boosting blends and I can feel a difference.

I had a follow-up EBV panel recently and did see movement downward in the level. My naturopath says it doesn't typically return to normal for up to 4 mos. after clearing out the virus.

I'm also working with my new acupuncturist to address EBV. My summer project.

[Hidden]

I agree with Hoski & CD.

In my experience, I have seen that various bouts of extreme fatigue and lethargy were absolutely attributed to medications. In one case, I'd been put on Metoprolol & left on it for 5 years, with no follow up. After learning from Dr. Gupta's video that beta blockers aren't such a great idea for vagally-mediated AF, I went off it, with my new EP's blessing.

Guess what? Immediate boost in energy on every level. I didn't even need the stuff any more.

The next learning experience has involved Flecainide. Staying on it every day was horrible. Exhausting & depressing. So I talked to the doc about it & went off it, only taking PIP.

Another powerful learning experience of late has involved gradually balancing my hormone levels with the supplement MacaPause, after testing low for estradiol. Immediate boost in energy, improvement in overall well-being. I take it in the morning and it feels like that nice boost from drinking the coffee I haven't drunk in decades.

I'm convinced that the most helpful adjustment I've made has been taking the micronutrients that nourish the heart: magnesium, potassium, taurine, CoQ10 (especially!). I will soon look into D-Ribose & L-Carnitine. These micronutrients replenish the depletion that a heart in AF goes through. This means that the cells can successfully complete their metabolic processes - the result of which is -- energy!

I've written elsewhere in the forum about Dr. Steven Sinatra's work in this area of micronutrients; CD has mentioned it, also.

The most helpful lesson I've learned in recent months is that, yes, having a positive attitude is crucial in dealing with AF, but there are absolutely physiological reasons for fatigue, lethargy, depression, and anxiety. Taking it upon myself to question the docs, advocate for myself, and do my homework has made all the difference.

I have gently pushed back when the response has been to just take the meds (Flec). Of course, I don't want to be in AF, but I do also have to get off the couch and function in the world without feeling like a depressed zombie!!

I encourage you to bring this matter up to your EP. It's not worth suffering like this and I agree with the others that it doesn't seem normal.

Best wishes to you!

[Maggimunro in reply to Hidden]

Well said Nella

[Hidden in reply to Maggimunro]

Thank you 😻💕

[Robodog2 in reply to Hidden]

Same issues here. I saw a post about MacaPause and ordered it. It has been a month since starting it. This has been the best month since last August. Still on a couple of beta blockers and flec. I have a bit more energy than when they had me on 4 beta blockers. Take the supplements big help. I am not back to full speed. Maybe I never will be but I do need to be seriously more active so I can do cardiovascular exercises. Looking out my 1st abalation in the next couple of months. I opted for it. Advice? Will I ever feel energetic and strong again? I went from walking a mile Every day to crawling from the bed to the sofa. Totally sucks the big one. EP is not pleasant or willing to listen. He is like oh you are a woman over 65 with high bp and diabetes get used to it. See you in a month. Ergo opted for surgery. But in my head it went a whole other way and the EP is 400 or more pounds. Hmmm? Lifestyle choices? Maybe not good ones so much.

[Hidden in reply to Robodog2]

I'm not a doctor, so am not comfortable directly telling you what to do, but here's what I've learned -

Making lifestyle changes is, of course, crucial! Diet, exercise, reducing stress, etc.

If I feel really uncomfortable with a doc, that he/she isn't listening, I look for a new one. Why not, I figure?

Glad you found MacaPause helpful. You can reach out to them for any questions about it. Their support is quite helpful.

Best wishes to you.

[Robodog2 in reply to Hidden]

I appreciate your reply. I was asking for what other Afib patients have felt like, their life experiences with Afib as a guide as what others have experienced. My experience has been that drs and nurses do not tend to give the nitty gritty on conditions or diseases as they are not the patient. Trying asking what can I expect with my spouses Parkenson's and dementia diagnosis. Things I was never told. Clearly I will be finding another EP. I really respect my cardiologist who is in the same practice. The EP will not be performing the surgery. I wasn't soliciting professional medical advice I was asking for shared life experiences. But thanks.

[Hidden in reply to Robodog2]

I understand; glad it was helpful info for you.

I have learned much, much more about AF from people here and on other forums and from my own research than I have from any doctors.

For a variety of reasons, the focus of the cardios & EPs tends to be quite narrow and limited, in my opinion. I think that so many of them have this mindset, from their training.

I recently started reading a very interesting book, "The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing," by Dr. Mimi Guarneri, an American cardiologist. I'm still at the beginning, but my understanding is that she'll be describing the journey from being a classically trained cardio to having more of an integrative focus. I just read about her early training and see how grueling it was and how they can end up having their emotions shut down. Illuminating.

[Robodog2 in reply to Hidden]

I will check out her book. This is all new to me. I am a very proactive person and heavy on the research. Occupational hazard ..history major. Maybe What To Expect When You're Abalation Bound. No one had this in my family. The dr did tell me my high bp is what damaged my heart. Ultrasound and Stress Tests results were all good. So I keep reading and learning. It has been a hard thing to deal with. Miss swimming and the hiking and being able to walk in a store as opposed to the electric carts. I am getting very good on the though. Thanks again.

[Ppiman]

Did the doctor say that you still have RVR or have they given you drugs that have resolved that?

[ShimmeringLillyMae in reply to Ppiman]

No I'm not in rvr now, I'm on medication that seems to controlling it. I've noticed this morning a pattern with how sick I feel, I get up and feel a little better then I take all my meds at 8:00 and 2 hours later I'm sick the rest of the day, I'm really wondering if medication can make you this sick!?? 🤢🤕

[CDreamer in reply to ShimmeringLillyMae]

It is possible, especially if you have an autoimmune disease - remember - you are the best expert on you and your body as you are the one who inhabits it. Keep returning and saying you feel worse when you take the meds and don’t give up.

I now cannot take any rate or rhythm drugs and I have an red alert on my medical file so I’m not given them by a doctor who doesn’t know me or read my (extensive) file. I work with Lifestyle and am lucky enough to have a Lifestyle trained GP in our practice so like Nella, work with micronutrients as well as diet, stress management, sleep & exercise whenever and wherever possible. IF you can, find doctors to work with you who are open to both ‘conventional’ doctoring and Lifestyle Medicine.

Best wishes CD

[SteveCairns]

Hello LillyMae,

You sound exactly like I did in 2014 after being diagnosed with Heart Failure (my ejection fraction was 26%, normal is 50-75%) and my left ventricular was stressed out like a loose pair of underpants ( doctors initial description) after my AF got way out of control and wasn’t diagnosed by two doctors when I complained about trouble breathing etc.

anyway for the first few months I was on the coach , light headed and puffed from short walks , and believed , “this is me now”. But with the right medication ( there was a lot ) , and a slow journey a year later I was in kicjc better shape . My left ventricular pumping chamber tightened up , ejection fraction got up to 73% , then BAM, back in AF. Turns out my specialist should’ve backed me off the meds as my hearts now beating almost at maximum . In any case , another cardioversion , tweaked medications and a new medication called Flecinaide . It is a journey but eventually you start doing better . Keep your eating healthy and your weight under control - REALLY IMPRTANT . Cut down on salt and bad fats and again things should improve . Me today , I’m still on meds , my hearts been back

At the right size and shape for a few years now and I’m not in AF, basically I consider myself almost back to normal - but I do

Still take meds .

And if your not happy with what your heart specialist is saying - get a new one !! ( GP isnt good enough btw, get anheart specialist) , Doctors May think thry know everything , but in reality they’re making their best guess on treatment , so keep your eyes and ears open .

[Paulbounce]

Hi Lilly.

I`ve read the replies here and think it`s great news you have seen your GP yesterday. It certainly sounds like other things might be going on.

I always try and be positive when I read a post like yours - hence my first reply. However others are quite right with their advice.

All I can say is good luck and I really hope things go well for you. At least you have started to get the ball rolling and will start to get treatment.

I for one will follow the thread and look forward to hearing how you get on.

Loads of best,

Paul