The wall

Was out shopping today, just the usual Sunday things , tkmax , m&s , boots , the normal Sunday stuff, but as I was coming out of boots I basically hit a wall , not literally but I just felt like I couldn’t go on . What is that ?? I couldn’t go to primark or Tesco I just needed to come home , felt kinda spaced out as well . My heartbeat was 72 . Normally it’s around 50/60 .

[jeanjeannie50]

I used to get that sudden feeling of extreme tiredness where I felt I couldn't take another step. It was discovered that I had an underactive thyroid. Have you had yours tested? Taking pills to right mine has helped greatly.

Another thing that could make me feel quite ill was eating a full lunch and then trying to walk anywhere, that would kick my heart off banging in my l chest ( I have AF).

Jean

[Hidden in reply to jeanjeannie50]

I have been tested for anything at all tbh . I’m 8 weeks Post stemi. They are wondering if I have af though .

[jeanjeannie50 in reply to Hidden]

Do you mean you haven't been tested?

I blamed my tiredness on my AF, I thought everyone with it found it hard to do anything that required effort. I would go out into the garden with my trowel do three digs and then would feel too drained to carry on. My GP knew that my thyroid wasn't right after being put on some drugs that damaged it, he was hoping it would go back to a normal rate naturally. However, thank goodness, a few years later a consultant I saw insisted I go on thyroxine immediately. From then on I had energy again.

Jean

[Hidden in reply to jeanjeannie50]

Hi Jean. Yes sorry I meant I haven’t been tested for anything

[jeanjeannie50 in reply to Hidden]

Please ask your GP if you can have a thyroid function test.

[Hidden in reply to jeanjeannie50]

Hi Jeanie ,, yeah I’m going to hospital for blood tests on Wednesday so I’ll bring it up to them when I’m there , my hearts been jumping outta my chest tonight and it gets quite painful when it happens, it’s been jumping from 55bpm to 115 bpm .

[jeanjeannie50 in reply to Hidden]

Best to mention heart jumping about tomorrow too, they may offer an ECG. I've never had chest pain over my 16 years of having AF. If I did I'd be dialling 999.

[Harrison4 in reply to Hidden]

this is what i have been getting had second heart attack may 21 2021

[Hidden in reply to Harrison4]

Any idea what it is?

[LBCdance in reply to jeanjeannie50]

That's a good idea - before I got the thyroid diagnosis (which is really quite common in women but I kept getting dismissed saying it was my age) used to think it must be depression I was grinding to a halt, thyroxine made such a difference! Good luck and difficult though it can be do persevere and try to get to the bottom of the way you are feeling. Blood test should reveal all!

[Smileyian in reply to jeanjeannie50]

Yes Jean, I have terrible Hypo in my family starting with my father who had thyrotoxicosis and eventually Myxedema (spelling ?). I was diagnosed when I thought was due to Coronary Spasms and like yourself, felt I could not take another step at times. Prescribed medicine but then swung to Hyper and needed 6 months to balance. Now only 25mg (sister 300mg highest dose) but still get some very fatigued days which I cannot work out if Thyroid or Prinzmetal.

[jeanjeannie50 in reply to Smileyian]

Hi Smileyian, yes I still get some tired days too, but I'm so much better by taking Levo. Looks like it was bit of trial and error for you to get sorted.

I also have atrial fibrillation and that can be draining at times, but the meeting of the wall effect my under-active thyroid caused was awful. I'd be so lacking in energy I honestly felt that I needed to lie down right where I was when the feeling struck. Not possible when you're in a town centre, or on a busy footpath. So glad that's all behind me now.

[Hidden]

I have no idea , the rehab nurse said she was going to flag up af to the cardiologist last week , I didn’t think that af would have been the cause of that , I thought it was just a slap that I was maybe doing to much ? I have no clue tbh what it is that’s why I posted

[firstlight40]

If you are 8 weeks post stemi then your heart is still recovering from that shock. I assume you are on a beta blocker like bisoprolol which also stops your heart from going too fast. Think of it like a speed limiter, push yourself and your body can't go faster so you will get tired feelings even doing quite moderate activities

[Hidden in reply to firstlight40]

Thank you first light ! That actually makes sense , hope you are well and happy Monday x

[firstlight40 in reply to Hidden]

Happy Monday indeed, day's holiday off work today...

[DJK99]

Hi there -I totally recognise your description. It's a bit scary eh!

I have sjogrens and SLE downgraded to Lupus Like Syndrome but also mod aortic regurgitation and on/off AF ( much better now, post ablation 4yrs ago), ectopic and supra ventricular beats. I used to get that feeling all the time at work.. but now I have retired on ill health grounds. I would certainly call it "the wall" or being hit by a train! It was often quiet sudden, and was though all my blood had left my body.. and I was encased in cement. My body was telling me to stop and rest NOW. All I could do was sit there and deep breathe.. and eat something with a large glass of water.

You just have to pace yourself - do you keep very hydrated? And ensure your diet is excellent? I'm sure you do as essential of course. But I found ensuring I have water with me wherever I go and glugging on it every 15mins really helps me keep going, although I do that with the sjogrens anyway as always thirsty.

I don't do more than one thing one day, and a rest the next... if I do more than that I start to feel utterly awful as you describe and I can't bear that feeling. If I go shopping I make sure it's local, sit down a lot if needed and... keep hydrated! I take multivits minerals each morning too (not with caffeine as kills the vits - you might as well throw it out the window - good ones such as Busy Bee with Vit C by Holland & Barrett which makes a huge difference in my energy levels. I also am prescribed high Vit D3 but you can get that anywhere if you're not prescribed. I'd tell your GP about this and they'll do a blood work up to check you're not anaemic etc etc,

and I guess your heart was going up because it was trying to keep you going... but you'd "run out of batteries" or "juice" as I say! Mine does that... it means it's really time to go and sit down with a cuppa.

Anyway, as I say, most importantly - best to discuss with your GP or cardiologist as they should know about it.. just in case they want to check you over.

I do hope that helps... please try and pace yourself.

Take care, D

[DJK99 in reply to DJK99]

Oh and just read the other responses... didn't see those! Yes if you are recently post procedure you're bound to need more rest... and if on beta blockers then definitely tell your docs this happened. They'll probably tell you to take it easy... one large shop at a time eh ;). I was on sotalol in previous years - and nearly passed out a couple of times... Went to a&E and they realised my dose was too high so reduced it. That helped! All the best, D

[Hidden in reply to DJK99]

Thank you so much b for the replies I will be saying to them on Wednesday when I go to give blood but tbh I don’t feel that I’m getting anywhere with cardiac rehab just now , but fingers crossed they can sort it out for me . Hope you are well xx

[Frequentshocker]

Hi Notdead. That sounds so familiar to me! I start out with plans to do things but less than half way through its 'abort mission and retreat home to bed.'A 'shopping trip' is more likely to mean one shop then home again as 10 mins walking around Ive hit a wall and can't go on. Its enough to get a bus into town, and I did wonder about thyroid problems but Ive had nothing show up in standard blood tests before. Its debilitating to say the least as I'm trying to push myself more to get well enough and back to work soon. It worries me that I won't be able to manage as some days by the time I'm washed and dressed I'm too exhausted to go out. I put mine down to my AF, angina and lockdown weight I've piled on so Im trying to walk at least 30 mins daily, no easy task, but at least it makes me get up and dressed again!

I notice thyroid is mentioned in the replies and would like to ask if theres any particular thyroid test we should be asking for or is the standard blood test sufficient? I once heard that theres different tests so Id like to be more sure but my GP says I need to discuss with my cardiologist!

[Hidden in reply to Frequentshocker]

Hi shocker ! Yeah it’s a bit crap isn’t it and that’s exactly how I feel , lay in bed at night and think of all these plans for the next day and by the time I’ve showered and got dressed I’m too exhausted to get off the couch nevermind go out somewhere. Even today the amount of effort to go out my ‘ walk ‘ that’s supposed to be done most day was an effort , half way round I could have laid down on the road in a fetal postion and slept , and I only walked for 20 mins . Last week though I went over the top with the exercise and scared the shit out of my husband with the state I was in ,, so maybe it could be I’ve totally buggered myself but I just can’t seem to feel myself , I’m so drained so tried I feel like I’m plodding though jello or semolina just walking from a to b . Hearing from you is great , it’s too to know that there is others feeling exhausted and the same as me and I’m not just being a hypochondriac

[Frequentshocker in reply to Hidden]

Until I came on here I thought it was just me, I knew I wasnt being a hypocondriac with it as its so real! Other ppl just dont get how tired you can be after the slightest thing and it just makes you feel worse. I was at my dads for Fathers day yesterday, which meant resting for it in Saturday and not doing too much on the day but I just really wanted to sleep all day, and do today too! Its awful to spend your life planning around sleep day and night. Its totally freaking me out about returning to work as I want to do something I enjoy in the hope its stimulating enough to keep me awake, plus I want to get more energy just to get dressed and travel to work. My dad suffers from total fatigue, he has a heart condition too, but I totally understand how he feels. However, he is much older than I and has an excuse, I feel I shouldnt be anywhere near that yet but...The strange thing is when I first came out of hospital after my cardiac arrests and ICD I was up on the dancefloor all night and back to normal fitness within 2 weeks, feeling as fab as pre cardiac. Even in hospital.once I came round it was as if nothing had hapoened, I still felt perfectly fit. No signs of any scarring, no visible signs of damage to my heart, just the arrhythmias and the fact Id arrested twice and was not expected to survive any more. Then a few weeks later they put me on beta blockers and within months I just couldn't function. Certainly not on over 5mg of bisoprolol, I couldn't get out of bed most days! Despite changes to my meds I've been on this downhill slope ever since, had to give up everything to cope, so I do have a biased attitide towards blaming drugs for this. Its hard to comprehend how you can go from fit to totally compromised/disabled in the blink of an eye. Life can change in seconds, but we are the lucky one to be alive afterwards. However it is reassuring to know we are not alone and we are all on our own personal journeys because of, or in spite of, our condition. Its good to share with each other, I had no idea so many were going through so many heart issues daily and I've learned much already. We just need that magic cure to give us a quality of life and to enable us not to sleep through it!

[MONIREN]

Yes, sometimes my up and go, gets up before I do. Have all these things planned, then by the time I get up, I have to revise or cancel and have a non day. Evenings are the worst, can barely get to bed. I prepare meals on my good days, so we still can eat well on my off days. Take care.

[Gladwyn]

I’ve had times when out of the blue I’ve suddenly felt exhausted so much so if indoors I just lay down and sleep. It’s like someone just pulled the energy plug out of me. No idea what causes it though. I’ve always assumed I have a certain amount of energy in my body and whoops that’s it when I’ve run out lol same as when I suddenly struggle to breath I assume my inner oxygen bottles run out and I just have to stay stock still hardly breathing until it’s replenished enough to bring me back to life lol. Am I bonkers?

[Brad08]

Hi, sounds like something that happened to me, it felt like my body was shutting down and I was about to pass out. I thought is was low sugar levels but I found out I was having a silent HA, no pain no signs, in March after a similar episode I was breathless and had mild chest I rang 111 and they sent an ambulance. Turns out I had two blocked arteries in my heart, one was 99% blocked which was why I was so tired so quickly. It was only a blood test that showed I had had a HA, xray, scans and all other tests showed I was OK and about to be sent home. Have you been tested for angina?

[Hidden in reply to Brad08]

Hi , no I haven’t been tested for anything at all , had the heart attack on April 15ths , two stents fitted , one artery was totally blocked , then two days later shoved out the door , haven’t seen a doctor or cardiologist since , I’ve had weird outdoor meetings with a nurse before her car a couple of times for five mins at a time ( 4 times now ) and I’ve brought up a load of things that’s been going on , pains in the chest , throbbing heartbeat , excess tiredness, bleeding mouth and nothings been done

[Frequentshocker in reply to Hidden]

I found it frightening to leave hospital expecting an appt to be made 6 weeks later but nothing. Under the instruction from my cardiologist my GP put me on Bisoprolol and it started to drain me so I cut back gradually until I weaned myself off them. My GP said Id got to take them but I couldnt face it and said Id discuss with my consultant first. She had to refer me for an appt as I refused to take the beta blockers until I saw the cardiologist. Over 6 months after my CAs I finally got an appt and was told I had to stay on the Bisoprolol, they wanted to get me up to 10mg despite my not coping well on 2.5mg! I lost another 6 months in a complete daze on 5mg, I couldnt function and started getting defibrillator shocks the more I took. I was allowed to reduce it to 2.5mg and settled unhappily on that before trying other beta blockers, some worse with allergic reactions, so back onto bisoprolol yet again as best of a bad lot. Still got shocks to reset my heart and on one shock and taken to cardiac unit, an electrocardiologist decided to try me on Quinedine, although not licenced here any more. Fingers crossed Ive settled well on it and no shocks all year! It could be due to resting more too but thesexmeds seem to suit me well despite the didgy tum side effects. I haven't heard of anyone else on it though, but despite feeling great when I switched to that one I now have this chronic exhaustion again. I was diagnosed a few years ago with angina but never believed I had it until this year. Its bothered me so much in the last few months but I put that down to less exercise through lockdown and I now try to walk every day, even if just 15 mins, and it has improved my angina already. I had an echo cardiogram and EKG a month ago, still awaiting my results, now assuming its nothing urgent but not sure why they called me in for more tests. I was hoping to be able to have a word with my cardiologist as I have so many questions my GP can't answer but it appears difficult to see anyone. I feel like Im sleeping my life away while waiting to see if I can be cured. Is this a similar story with everyone else? Any explanation of whats making us all so tired? Are you able to get appointments with your cardiologist easily?

[Hidden in reply to Frequentshocker]

Jesus chirsit I could have written this about the sleeping. I go to bed at 7 pm every single night and don’t get up until 9 the next day , I worry that it’s too much , I’m not sleeping all that time I’m reading until about tenish , but still it’s a long time to be laying flat isn’t it . I’m new to alla this and I’m only 53 , currently unemployed with no income whatsoever so the stress of not earning and bill piling up surely isn’t helping me either . This spray thing as well no clue when I’m supposed to take that either , everything is so up in the air and I’m hoping for so many answers on Friday when I finally get to see a nurse inside a hospital, hope you are doing good this morning x

[Frequentshocker in reply to Hidden]

This all started in my 50s too, and had to give up running my business as no driving licence and was reliant on lifts and taxis to get to clients. Then the drugged feeling of bwta blockers too just ground everything to a halt. Financially its been extremely stressful, I think thats aggravated the angina on top of everything else! I still hope to get my driving licence back, although legally Im over 6 months at last without an ICD shock I have no car and no energy to go out but it would help with some things. Thats why I need to get back to work, probably a desk job somewhere but its all v worrying.

Re the spray, is that the gtn spray? If so you lift your tongue and spray a small amount under your tongue. You will feel its effects almpst instantly as it feels strange at first, numbs you so make sure you are seated until used to it. It opens up the arteries to allow the blood to pump easier to your heart and will help it if you get chest pains but the down side is the awful headaches as opening the blood vessels means all of them incl in your head! I actually try to avoid taking it unless my chest pain is so bad I can't move. Resting is the best cure but once Ive used the spray my headache is a problem and I end up taking paracetemol and sleeping it off for hours. More sleep, but nothing else I can do with it pounding.

Write down a list of questions as there will be plenty to ask. I find it difficult to get a consultants appointment, Ive only had 2 in 6 years since my CAs but I do have her secretarys email address to order my Quinedine and can occasionallyask a question for her to pass on and my consultant will usually write back to me and my GP. I certainly pays to have a line of contact with your consultants secretary.

I find a lot of things out on here, and discovered some useful videos for explaining things by Dr Sanjay Guptar from York Cardiolgy on youtube. Obviously we are all different and find by trial.and error exactly what suits us but its a good base to find things to question personally with your own consultant carfiologist.

I hope things work out for you, feel free to chat any time. Its good to know we are not battling this alone.

[Harrison4]

Used up all your stored energy plus its warm.