Hi, I've been posting a bit recently as I'm in a never ending flare, worse one for about 7 years.
Finally saw my consultant this week for the first time since 2019.
I have been having episodes of high heart rate everyday for 8 months now.
I can be sitting down and HR is 76 by walking to other side of the room it's 120+ and walking upstairs it's over 150. Every day, all day. It makes me feel dizzy, breathless, sick and sweaty.
When I lie down I feel better and it stops.
Consultant things this might be long covid (I had covid badly 8 months ago), but I'm not certain as I've had episodes like this before but not known my heart rate - GP gave me a monitor when I had covid the 2nd time.
I had an ECG which was fine, but technician said I needed to wear one for 48hrs to get a better idea of whats going on.
Consultant talked about beta blockers or steroids depending on what blood tests show, I don't know yet.
Has anyone experienced this with Lupus?
Written by
Beau2016
To view profiles and participate in discussions please or .
hi there, sorry to hear you’re having such a hard time. Has any doctor mentioned POTS to you? I have this diagnosis and it’s always worse when my auto immune problems are flaring. Just a thought .
Agree this very much sounds like pots. Have a look at potsuk.org/, they are a great charity and lots of info there. Their peer support group sessions are great too.
Hi there again, sorry my first reply was a bit brief, I’ve read your replies and responses, it’s does sound like pots.
I think the diagnostic criteria is a 30 bpm increase from immediate sitting to standing. Hopefully you’ll get a cardiology referral soon, they will organise a tilt table test. I am on ivabradine as a beta blocker which really helps. Drinking lots of water helps too, especially if I’m feeling faint , I also get low blood pressure on immediate standing. I was recommended to add salt to my diet but do get advice on this as I think it’s only for people with low blood pressure, I used to black out sometimes when I stood up due to my falling blood pressure. My auto immune conditions really contribute to my pots symptoms so it’s good to keep them under control. I did have covid a few months ago too which definitely made things worse for a while.
Thank you, I've seen 6 doctors since I last posted and they've all finally decided that lupus flare plus covid has resulted in POTs, starting steroids and Mycophenolate. Also got some gorgeous compression stockings!
that’s good, I’m glad you’re getting somewhere. I used to be on mycophenolate and have been on predisolone for a long time, hopefully hat will get your lupus under control. Have you been prescribed a beta blocker too ?
Because I wasn’t able to control my blood pressure with Losartan and Amlodipine, I was started on a beta blocker. It definitely has lowered my heart rate and seems to also help with anxiety. My Apple Watch even picked up on the heart rate trend. If your doctor feels they are safe for you, I would give beta blockers a try.
Yes I read some stats about the amount of people who were referred to cardiology in 2022 compared to 2020, increased x 3!
Hi
I was going to suggest POTS too on reading your post. It can be brought on in some by Covid or in conjunction with Long Covid too. Anyone can get either or both sadly. Definitely check out POTS UK. If you’ve a blood pressure monitor, do the NASA lean test. It should help with a diagnosis. If this test at home is positive, you’ve something to show the doctor and they may do a tilt table test from there.
Oh gosh, I hope your daughter is ok and wasn’t injured when she fainted. That’s why I mentioned to Beau to try electrolyte tablets as she said she almost faints. Has your daughter tried them and if so, has it helped with the faints and feeling faint? It’s a horrible thing to deal with. ✨
For some people raising blood volume by drinking water is good but a lot find sipping an electrolyte fluid helps more (you can get dissolvable electrolyte tablets on Amazon). There are a few types of POTS and it depends on type as to what works best for you. Plus, it can be trial and error depending on your symptoms too.
Do you get dizzy or shaky when you stand up too, or is it mostly heart rate jumping right up? Regardless you do need referring to cardiology as they will be able to check you out and diagnose.
There are tips and tablets and prescribed meds plus garments that help people, so don’t lose hope and try not to get too stressed as it’ll make it worse. POTS loves it and goes all out when you’re stressed - easier said than done when your heart is banging away whenever you move, I know 😬. Really good that no wonky heart rhythms/arrhythmia has been picked up on tests. Don’t worry about the BP monitor/stand test as your Cardiologist will sort everything. You’ll get there, it’s being patient-patient that’s the worst when you want to just get sorted. ✨
Yes I get dizzy, chest pain, palpitations, feeling sick, sweating along with the HR. I’ve not fainted but have come close.
It all returns to normal after I lie down for a while.
I was relieved with the ECG, family history of people dying from unknown heart disease early, so it has all freaked me out.
Was feeling bad enough with just the Lupus flare and that was before I had covid.
One of things I hold onto is that I know remission is possible because I’ve experienced it a few years ago. Just want to get back there now!
It’s all a mess medically as IF you have got POTS and/or long Covid as some of those symptoms can be so similar to when you are flaring with lupus. So, it can seem like the Lupus flare is going on indefinitely but, it could be that the Lupus flare has kicked off a chain reaction of the LC flaring up which then aggravates the POTS or vice versa - or also not - you could have long Lupus flare with the others layered on top... Obvs, this is IF you do have POTS. Add in the fact that Lupus is different for everyone - as is POTS and as is LC… you can see why the medics have a tough time! So we have to put some graft into working it out a bit to help them.
It’s a pain but maybe log down on a day by day basis symptoms plus roughly how much you’ve done that day. Then at month end, go through your notes with a highlighter pen - mark off your chest/dizziness symptoms one colour, Lupus another and see if there’s a pattern. Usually sifting through the info there’s something comes to light you’d not realised and may be relevant to knowing what’s causing what, to help inform the Doctor.
Plus - few tips for now as they may help the dizziness side of things - apologies if you already know this 😬:
• always stand up slowly and move steadily from sitting to standing
•squeeze your butt cheeks together and tense your thighs when going from sitting to standing. It forces the blood upwards and helps with dizziness. May also give you buns of steel 🤪
• if you need to lie down/rest/feel faint then raise your feet up, again it stops blood pooling in your lower body - can sometimes help
• if you’re standing still, transfer your weight from one leg to another or clench your bottom and thighs. This may help if you have to be stood a while (eg cooking or something). Useful also if you notice your feet or lower legs go an odd colour if you’re standing for a bit
•if you’re v hot as well as dizzy, something as simple as a damp cloth on the forehead/back of the neck can be good
These won’t stop the tachycardia element - but may help with associated symptoms. Worth a try until you get seen by cardiology. But, as always, if you get worse, things change check with your Doctor.
It’s so v scary if there’s a family history too - that’s so great your earlier tests are ok. Put your mind at rest on that score. The stress of all that will have been awful for you. I’m by so pleased you’ve known remission - if you’ve been there once you know it is possible. You know resilience and the strength it takes to get there and you have that! For now though, a day at a time and be kind to yourself. ✨
It's all an absolute mess medically and doesn't help that I never see the same person twice, hospital again yesterday, they lost last weeks bloods so had to do them again. Saw 4 doctors and they've referred me back to original rheumatologist, so no beta blockers or steroids and no referral to cardiology, they said that was up to my consultant to arrange.
*sigh*
Then gave me a leaflet on Mycophenolate after I showed them photos of bleeding in my eyes and hair loss, but didn't actually prescribe it. I've had these symptoms for years and told them a million times.
So sorry for the delay in replying- been a bit of a week with migraines 😬. Oh goodness - I’m lost for an eloquent word here, only think of ones that aren’t really appropriate for posting...! I am so sorry you’ve got all this. We’ve enough to contend with anyway, living day to day, without having to do things x3, or chasing around for things that should be there anyway. Being ill is like having a part time job and while they mess us around in the meantime our lives are on hold.
Ok, helpline -‘ where’s my Mycophenolate? Plus, what are you doing about my tachy etc episodes/what’s the diagnosis?’ It should be that easy, but it’s really not that straightforward is it?
I recently used some Tesco points up, so it got me a free Fitbit. It’s been really useful as there’s times I’ve felt ill and I’ve found I’m in the ‘cardio zone’ brushing my teeth and my watch is praising me and telling me to ’keep going’, thinking I’m doing a cardio workout! ✨
Good news a miracle occurred today they have officially recorded my diagnosis back to Lupus AND POTs AND prescribed steroids for 4 weeks and Mycophenolate for 6 months.
Also referred me to cardiology for tilt test and 7 day ECG.
Seems crazy to be happy about this but I am filled with hope
Thank you so much for your support
Sorry about the migraines, hope they leave you alone now xx
That’s fab news! Maybe get a lotto ticket while your luck is so good 😄. Really pleased for you, it’s the first essential steps, so it definitely is a big thing, you’ll be buzzing! Let’s hope this is the very start of you getting back on that road to remission-or stopping your flares at least once again 🤞🏻
Gone now, thankfully - the humidity didn’t help. It’s been lovely chatting to you. I always find it really helpful to me knowing others are going through similar things - so you’ve helped me too. And do let us know how you get on with your new meds and tests if you want to. ✨
I have bad problems with blood pressure shifts like this when I'm dehydrated. Make sure to drink plenty of water, 8 to 10 cups a day. Dehydration can cause all kinds of problems, including dizziness, nausea, weakness, and your heart rate and blood pressure dropping and accelerating because you don't have enough fluid in your arteries so your heart is trying to compensate for that. Your body needs proper hydration to function properly.
Thank you, I am trying to drink lots and I think it does help, just not very convenient needing a wee all the time, last year I ended up with low potassium from drinking too much when I had kidney infection. I guess there is a balance.
You also need to make sure you're getting enough salt when you're drinking a lot of water to help retain it. A couple of saltine crackers or olives or other salty food is enough to do it. Water and salt are two key things needed for our existence.
Hi Beau, sorry to hear you are experiencing this. I had this for about 6 months last year: skyrocketing HR with severe breathlessness, especially on walking, exertion, even talking for more than 2 minutes could bring it on. I was off work for nearly 6 months. They ran every test and found nothing wrong. Not related to COVID-19. Not POTS. I never received a diagnosis. I’m now back at work, but still have no idea what that was. It’s scary that lupus (or whatever it was) can cause such profound disability, without any clue as to the cause or treatment. Sorry, this probably doesn’t help you at all, except to say you’re not alone. I can only imagine what you are going through—you have been living with this far longer than me!
Thank you, Lupus is crazy isn't it. Few years ago I about 16 months of remission, no symptoms, working f/t, social life etc convinced myself it had gone. Now it's back and is stubbornly not going away. It's frustrating beyond believe unless you experience it yourself, thank you for the solidarity xx
I think ‘crazy’ is the technical term for it! Yes, it’s maddening how we can lose control of our lives at the drop of a hat. I hope you experience some relief soon. We’re here for you. 🌻🌈
hi beau, sorry to hear this no wander you feel terrible. I also had something similar and had to wear a heart monitor for a number of days at 4 different occasions. I kept a diary and was also seen by a cardiologist. Diagnosis was svt, supra ventricular tachycardia. I’m on beta blockers. Might be worth asking the go to refer to to the cardiologist incase they want to do more tests…eh heart scan.
Hope you get some answers but beta blockers would help.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
lupus?
Is it lupus
Lupus 
Lupus?
