PAF and tiredness

[Byke]

Hello all, I have had PAF for three years now, I am on Tildiem ,Apixiban, Avorstatin, Lansaprosol and Pizotifen. My problem is I feel so tired and lethargic. I am struggling to do all the things I want to do, even going for a walk takes it’s toll as my hips hurt quite a bit. Does anyone have any ideas about anything I can do or take to give me some energy, in my mind I can do everything but my body won’t let me. My doctor says just do what you can, it’s due toPAF, in other words just get on with it. I don’t want to just sit back and get worse. there must be something I can do to help myself. Moan over.

[BobD Volunteer]

The question is, do you feel so fatigued all the time or just when you have an AF event? If all the time it is probably the drugs you are taking.

[Byke in reply to BobD]

Hi BobD, I have had very few PAF episodes, so it’s just most of the time. It probably is the drugs, but when I have spoken to the doctor he just says, well you need to take the medication or you would not be on it, also that my medication has been changed (I was taken off Bisoprolol and put onto Teldium due to reaction of Bisoprolol) So basically get on with it. I know I am an older person aged 68 but don’t want to have a life where I feel tired all the time. I can complete housework but then tired rest of the day.

[BobD Volunteer in reply to Byke]

I don't know.---you youngsters! If your GP can't help you ask to see a specialist, an electrophysiologist who specialises in arrhythmias. This is your right. GPs are very limited in what they can prescribe.

[Byke in reply to BobD]

Thank you for your reply ( especially you youngsters bit) at the moment I feel about 100yrs old. I am going to contact my doctors, stop being soft and tell him I want referring to a specialist. Thank you

[CDreamer in reply to Byke]

Please ask to be referred as there is absolutely no need to suffer like this. You are young and should be active. Many on here living with controlled AF much older than you. I’m sorry but well you need to take the medication or you would not be on it is not a reason. In your position I would be asking:- Why do you need to be on it? What is for and what does it do? If the affects are worse than the disease then what are the advantages of taking it and are the affects worth the benefits?

In my case they were not! I felt much better once I stopped the meds, adjusted lifestyle and embarked on other treatments but if I hadn’t been proactive I’m pretty sure I would be exactly where you are now - in fact I know I would because I can remember posting the same moans 6-7 years ago. In a completely different place today.

[Byke in reply to CDreamer]

Thank you for your reply, the hospital discharged me after the last time I was in there and told me to speak to my doctor if there were anymore problems, but doctors response was I need to take them. I think you are right though so I am going to go back to the doctors(when I can get an appointment) and tell him it’s not good enough I need to be referred back to hospital. Thank you so much for your advice.

[Buffafly in reply to Byke]

How much tildiem? I take a version of diltiazem and feel tired in the afternoon even if I haven’t done anything and can’t do without a nap at about 3pm. I also take an anti histamine so like you I’ve got a combo of ‘tiring’ drugs.

I don’t think your GP can blame PAF if they haven’t tested you for other things but if they have and found nothing then maybe you could reduce the tildiem or if it is also for BP another drug might be suitable.

Please let us know how you get on with the EP. May I offer a little extra advice? Choose your EP carefully because some are interested in management but many have become EPs to treat AF by ablation and aren’t interested in your case if ablation isn’t your choice. You might do better with a cardiologist with an interest in AF who would try to adjust your medication ❤️‍🩹

[Byke in reply to Buffafly]

Hi, thank you for your reply. I take Tildiem 60mg twice a day. I was put on these after having a bad reaction to Bisoprolol which ended up in my being admitted to hospital. I was told these were slow release tablets and would suit me better. They are a lot better than Bisoprolol , but I’m just feeling lethargic all the time. Hospital discharged me back to my doctors after being given Tildiem, but there has been no monitoring done since then which is well over a year ago now. I struggle to get through to the doctors surgery never mind see a doctor, so I am going to take your advise, I only hope the doctor accepts any medication they subscribe. Thank you again

[Auriculaire in reply to Byke]

Why are you taking the statin? That might be contributing to the hip pain.

[BobD Volunteer]

Many people here makea private appointment to see an EP (electrophysiologist) to get into the system. Often the best £200 spent!

[Byke in reply to BobD]

Thanks, I think this is the way I will go, can’t get hold of GP anyway, but will be making a private appointment. Thanks

[ETHEL103]

Hi I'm always staggered by people getting in touch with GPS.Our surgery is almost bracketed in fact it has metal shutters that are locked.The reception is open but getting an appointment is such a hard slog.

[CDreamer in reply to ETHEL103]

Our surgery is open and has always been, even at the worst of the Pandemic and GP came out to me when both my friend and I had COVID - at different times.

Do you know the reason? There are excuses and then there are valid reasons. Challenge them in writing. They can’t ignore letters whereas no record is kept of calls. I know our surgery took 3 years to fill a vacant GP post so for a time appointments were limited and triaged.

[Byke in reply to CDreamer]

I have challenged this with manager of the surgery who states that there are a lot of patients on their books, and due to staff illness they are struggling. You are not allowed to go to the surgery, you have to phone them and if you do go they will send you away and tell you to phone which takes days to get through. All doors are locked. Don’t think there will be any change even after covid restrictions removed. I think they want to continue in this situation.

[CDreamer in reply to Byke]

That’s appalling. Maybe take it up with ombudsman.org.uk/sites/defa...

Or the CQC?

[Byke in reply to CDreamer]

Thank you for this address, I will certainly be using this

[Byke in reply to ETHEL103]

Hi, I know exactly what you mean, if we are I’ll we have to call health care. Not sure what the doctors are doing as if you can get a phone appointment it is mostly with. Nurse

[dunestar]

I find CoQ10 supplement helps me a lot with fatigue. I take Atorvastatin and I believe it's common in the States to take CoQ10 with statins to combat the fatigue element. I just get the Boots variety.

[Byke in reply to dunestar]

Thanks for that I will give it a try

[pusillanimous in reply to dunestar]

Same here in South Africa, always advised to take Q10 with statins.

[kkatz]

Getting excercise can help so much !trust me I am overnight,in Persistent AF and 73 so have all the joint pain that age & weight brings.Our local council Sports centre offers health & age related classes. Email them & see what they offer.They will know about hip problems & where to start with the classes.They monitor you & suggest advancement.And it can be fun.Daunting to go unless you can take someone with you.

[Byke in reply to kkatz]

Hi, thanks for that, what a good idea, I hadn’t thought about anything like that, will definitely give it a try

[Buffafly in reply to Byke]

I am a huge fan of Tai Chi - unfortunately covid put a stop to classes and online demos were good but hard to persist on your own ☺️ Brilliant for joints and does make you fitter without the sweat 😓

[Byke in reply to Buffafly]

Thank you for that, I am about to start yoga so hopefully that will help

[Tomred]

i feel the exact same way and am still searching for ways to increase energy, the only sure way i have found is proper sleep , which i find hard to get.

[Byke in reply to Tomred]

Hi, thanks for your reply . I sometimes have a good sleep and others not, mainly not. When I have had a good sleep I-wake feeling good, but then back to tired. However coQ10 has been mentioned and may help so I have sent for some today. People on here are so supportive. I am going to contact local leisure centre to see if there are any groups there for exercise which may help. I am also going to try to go private for a consultation to see if there is anything to do with medication to help. I felt as though it was only me and my age that this was happening to. Although it’s not good for others to feel the same, I don’t feel that it’s just me.

[Auriculaire in reply to Byke]

Check out your vit D level as well. If doc refuses to test it you can buy kits on Amazon. Also taking a magnesium supplement can help with making you sleep better and energy levels. Co Enzyme Q 10 is essential if you are on a statin as it's production in the liver is on the same metabolic pathway as cholesterol. The statin blocks it's production.

[Byke in reply to Auriculaire]

Thank you for your response, I will check my vit D levels, I have already sent for some vitamin D and coQ10 vitamins to try. Thank you so much

[Tomred in reply to Byke]

from what i gather any heart issue can bring with it fatigue which im fighting for maybe 50 years , look up articles concerning the circadian rythym , ive tried almost everything to not much avail, except when i succeed to sleep with rising and setting sun , but its hard to keep it going when friends want your company on a night out, then it knocks everything haywire.

[blulla1]

Hi BykeI know very well how you feel regarding the tiredness, fatigue, certain body parts hurting, etc. This dietary protocol has helped immensely. I highly recommend considering it. carrafibdietinfo.com/

[Byke in reply to blulla1]

Thank you for your reply, I will certainly look into this

[Dollcollector]

It seems to me that you are over medicated.

[Byke in reply to Dollcollector]

Thank you for your reply, not all the medication I take is for PAF, Apixiban and Tildeum for PAF, I was fine on the other medication until I started with PAF, but lots of ideas on here to help me, so feeling positive at the moment

[Dollcollector in reply to Byke]

I believe the Tildeum can make you feel weak and take away your energy. The medication for a.f. did that to me. There is no easy answer. You just have to try and work out what amount of the medication you can tolerate and still have some quality of life. Also what food and the amount of food you eat and alcohol , and fizzy drinks can affect your p.a.f. All the best.

[AppleBear]

I'm 69 now and diagnosed 3 months ago. On metoprolol I've had many days of fatigue, but have been forcing myself to walk at least 10 minutes. I came across a book by Dr Rangan Chatterjee, "How to make disease disappear." Among many other things, he recommends not just 5-a-day of fruits and vegetables but 5 different vegetables a day, plus fruit. Two days after I began, the fatigue went away. I hope this helps someone out there. I'm not stopping my meds, (Apixaban also) so I need to learn how to cope with them.

[Byke in reply to AppleBear]

Thank you for your reply, I-will certainly try the 5 veg a day, I already have 5 fruits a day which I put into a smoothie each morning, maybe I could do the same with veg, although I do eat veg everyday, I will look for the book you have suggested, thanks

[AppleBear in reply to Byke]

I borrowed it as an e-book from my local library. Hope you see less fatiguing days ahead!

[Claer]

I, too, have PAF. I see an electrophysiologist and recommend you see one also, if possible. Do you have additional conditions that specifically trigger the PAF, and that require you to take so much medication? I also have very few episodes. My EP prescribes no medication (although I was prescribed some by different docs in the past and understand how they make you feel so exhausted...there really is no drug that stops PAF). I researched PAF to see what triggers might be causing it. Changing diet is a big factor in many situations. My EP stated they do not know the cause, at least in my case. So it's good to find out as much as possible and ask if you truly need all those drugs. It's not good to feel so tired and be unable to exercise. Hope you can get more answers and feel better! You are still quite young and should not feel like this!

[Byke in reply to Claer]

Thank you for your reply. I have medication for different things, one so for my throat and one is for cluster migraines, I didn’t feel like this when I was just taking those medication, it’s just since starting medication for PAF that all this started. I am going to make private consultation as well of lots of other things I have found from the kind people on this site. I will look at diet as well, I feel as though I have lots of options to take myself so thank you very much for your recommendations.