Heads up: this is a vent post about how much this SUCKS!
OK, so the story is, I’ve been off work for the past 4 months with exertional breathlessness and no cause. They know my heart is involved, but every single cardiac test (stress test, CPCA, halter, PET/CT, cardiac MRI) has come back normal. CPET showed my CO2 is low and my heartrate skyrockets at the drop of a hat, but don’t know why, and my O2 is normal. The bloods indicate the lupus is flaring (positive ANA, positive APS, low C4, increased B-cell antibodies) but nothing else.
I went to see my cardiologist today who walked me through all my latest test results. He told me he cannot find a cardiac cause for the breathlessness and skyrocketing heartrate and cannot help me. He recommended I go back to my immunologist (got an appt in 3 weeks) and maybe consider a long covid clinic (I initially tested negative but we are all starting to wonder, as my symptoms are very long covid-like. Either that or a delayed reaction to the covid booster). I’m going back to my GP and we’re probably going to talk occupational rehabilitation and a return-to-work plan. (Even though I’m not better.)
Besides the terror of exercising with persistent breathlessness, and being pushed past what I can tolerate, and never getting better, I am so disappointed that no one can find a cause. It sucks so bad to be told over and over that no one can help me, when I am so obviously disabled. They all agree I’m not well, and I’m relieved they believe me, but I wish they could give me something concrete. All my doctors are thorough and supportive, they just can’t solve the mystery. As it is, I may or may not get better in the near future, and that’s bad enough; but this could happen to me at any point in the future and without knowing the cause, we will have to start the investigation all over again!
I’m so upset that all our investigations cannot pin down a diagnosis (which my insurance company is frequently demanding) and that even though the tests have not exactly been a *total* waste, it feels like so much effort for very little result. Some of the tests were very difficult—one even sent me to ED—and I was hoping it would be worth it because they might at least give me an answer. Nope.
Sorry for long post, don’t really need advice at this point, but commiserations and jokes welcome. I trust things will get better, but feeling angry and disappointed right now. Being sick SUCKS!
Written by
MusicalFurbaby
To view profiles and participate in discussions please or .
Thanks happytulip—the cardiologist actually mentioned POTS at one point today, but I commented I thought that was an ME thing, and that I didn’t think I had ME. Will keep it in mind though x
It's definitely not an ME thing. I went rock climbing for two week in the Lake District, went back to work for a few days and suddenly developed POTs. 18 months later I was diagnosed with SLE and POTs was secondary (the SLE had damaged my ANS). Yes POTs can happen as a result of deconditioning but I definitely didn't have ME when I was wild camping and hanging off a cliff face. It can literally happen overnight.
The best place to be referred is the national hospital for neurology and nervous diseases, The Autonomic Unit at Queen's Square London. It's the national centre.
Thanks happytulip—I checked out the website you suggested, and I can confirm I definitely don’t have POTS. The symptoms for POTS are triggered by change in posture, where as my symptoms are exertional, not postural. My doctors have checked my postural obs numerous times and there are no changes. Thanks for your suggestions though, I appreciate your thoughts!
It was worth checking out I guess. Some forms of dysautonomia are similar to pots without the postural bit. Like inappropriate sinus tachycardia.
I know a fair bit about POTs and dysautonomia as most people in my immediate and extended family have it. I have often been laying flat with raging palpitations.
Always worth checking things out for the differential diagnosis! I’ve looked into dysautonomia before as I have IST, but they’ve never been able to find the source. This is the first time it’s been associated with severe breathlessness though. I’ve done the holter but it was only for 24 hours; I’ve previously worn heart monitors for months at a time. It picked up the IST but was otherwise normal—of course!
In my experience forms of dysautonomia seem to worsen to women from the age of about 30 onwards. I had mild symptoms for years then suddenly hit the deck. Then one by one all my family members dropped like a sack of spuds. Every couple of months another one was getting diagnosised
Thank you! They tried Cardizem for the IST, with no result. The specialist offered to trial other meds but wasn’t convinced they would help. Neither was I. The IST was never postural, in fact it was completely random, could strike at any time. Even did a tilt table test (which, of course, was normal!) so in the end the doctors just shrugged their shoulders. It would seem medicine has its limits 🤔☺️
My brother has IST and it's not postural. He takes bisoprol once a day which is a long acting beta-blocker. He was told he had anxiety for years (he didnt), then I was diagnosed and it all fell into place. Please don't give up. I know how crappy it can be.
Cardizem or Diltiazem as I know it works well for my cousin. We're all different and what suits one might not suit another.
I can relate to your brother’s experience, I was told it was anxiety as well! We know our own bodies—to some degree—don’t we? Thanks for your encouragement x
No it isn’t just an ME thing at all?! Many with Sjögren’s have POTS or other forms of autonomic dysfunction, also diabetes, thyroid, Myositis, Lupus and other autoimmune diseases, EDS, MCAS etc - and yes ME and Long Covid too, but certainly not exclusively. Yours sounds very like autonomic dysfunction to me - likely as part of your autoimmune flare up. Try Dysautonomia forums and many will recognise. Mine isn’t POTS, it’s orthostatic intolerance caused by vagus nerve damage from my overlap connective disease (sjogrens, hypothyroid and scleroderma).
Meanwhile commiserations, jokes about joining the dysautonomia people (me inc) and general hugs and all you requested. You’re far from alone.
Thank you OldTed—and thanks for setting me straight! I think I have come across discussions about POTS in ME communities, so that’s why my thought ran first to ME. But what you’ve described makes perfect sense. If you don’t mind me asking, what is orthostatic intolerance? It might help me understand a little more ☺️
Not at all - glad to be of assistance. Hmm I’m kinda new to this and not good at remembering classifications criteria. But I think orthostatic intolerance is sort of opposite to POTS for me and my dad had it too so maybe hereditary. He had diabetes T1. When I stand my BP stays normal or goes up and my pulse goes up too but not enough to be POTS - so it’s classed as orthostatic intolerance.
My legs go blue/ purple the longer I stand which is small fibre neuropathy and I feel faint and fold after five minutes if I stand still. Have to keep moving. Same sitting one position for too long - feel strange and walking up hills I get breathless and my heart slows get breathless - heart feels like it may stop. Could be pulmonary arterial hypertension - only real way to be tested is right side heart catheterisation but not has this just PFTs and echo annually as high risk. Worth looking into.
Also sudden stuff - extreme stress, bad news, falls, sudden peristalsis (my gut is paralysed in patches throughout) can make me faint. This is vasovagal syncope and quite benign mostly.
I’ve had this since I was a child. Usually benign but did hit my head badly on floor when I fell off toilet earlier this year 🥴.
Sometimes people drown from it when go from hot outside to cold water or icy sub current as shock - especially during heatwaves. It’s a form of dysautonomia but more benign of itself than POTS. That said it’s not benign if you fall and hit your head or if it’s paralysed your gut as it’s done to mine or you don’t know you have it and drown!
Sympathetic nervous system is very screwed up due to Sjögren’s - I’m getting IViG for mine now.
Dysautonomia has lots of types - POTS is just one typexx
Thanks—wow, it sounds like you are living with a lot of challenges! I’ve never experienced anything like that, but it sounds full on. Glad you are in the care of good specialists who are checking up on you regularly. Take care 👍
Yes lots but I don’t think most is dysautonomia with me - think it’s systemic sclerosis. But if you have Lupus then fairly likely to have some type of dysautonomia I would think - especially if there’s sjogrens in your mix. Wouldn’t always show on tests either
Ah right. Although I could say same of myself if hadn't been confirmed by histology before my antibody positive systemic sclerosis, due to neuropathy and autonomic problems. I do have sicca - but not severe - and could have been attributed to ageing/ menopause. I have no antibody for Sjogren's.
For some Sjogren's manifests very like Lupus and even like MS - with autonomic features such as dysautonomia and GI as the presenting features. So given that you have posted about unexplained symptoms affecting your breathing and heart rate I certainly wouldn't rule it out if I were you. It's a common progression for Lupus sufferers to get and it is associated with pulmonary hypertension - which is also very hard to diagnose.
Yup. Very good point. I should have thought to mention orthostatic intolerance. Pots is diagnosed when your HR goes up by 30beats or more when standing and BP isn't affected. I have POTs and orthostatic intolerance which is when you stand up your circulatory system is unable to support you and all the blood drains from the top half of your body into the lower extremities causing a drop in BP, blood pooling and the telltale "coat hanger pain" across your shoulders. Because I have both I combine the two together and call it Pots but forget to mention the Orthostatic Hypotension aspect.
Very helpful reply from you too given my brain fog means I forget the POTS diagnostic criteria - just know I don’t have it. “Coat hanger pain across shoulders” - woah didn’t know about that but sums me up well. Just had to change my routine breast screening appt from mobile unit to hospital one as remembered can’t do mobile - no seats and the scanner and my breasts go one way and I go the other! 😬😖🥺
She said “ah yes we have you down as having vestibular issues - needs extra time” - I am guessing “vestibular” was the nearest they could get and although it’s clinically inaccurate it will do for this purpose - shrug 🙄. Also have newly diagnosed EDS so knees hyperextend, got scoliosis and am very prolapsed internally so force of gravity is extreme and is not my friend! Now going to hospital for it 45 mins before gastro consult so that’s going to be a fun morning not!
Thank you for this useful info. I have been referred for a mammogram and it hadn't even occurred to me that it could be a problem, never had one before. I too have EDS hence the family tendency towards POTs. It's like an AI convention when we all get together. So many organs are damaged with auto immune disease but I find that the autonomic and central nervous system are often forgotten about a bit.
Hi MusicalFurbaby, I hear you! I completely understand what you're going through. I am now into my fourth month of diarrhoea and only this week I have an appointment with a Gastroenterologist FOR THE FIRST TIME!! (BUT ITS ONLY A PHONE CALL SO NO TESTS WILL BE DONE!!!) I am so frustrated,annoyed,angry because I've been practically housebound for the last three months(+ now we're beginning month 4) and yet nobody seems to give two hoots! The lupus unit are totally useless even for support as they just say "lupus doesn't affect the stomach so it's nothing to do with us". Oh really? Well, lupus affects the ENTIRE body and even if it doesn't attack the stomach, all of the pills I've been on for lupus for the last 30 years are bound to have affected my stomach/gut+ digestive system but oh no, they are not interested (and we're talking about one of the supposedly "leading lupus units in Europe" hah. ) So, I just wanted to say how much I can identify with you(even if you've had all the tests with no satisfactory results+ I've had no tests with no results!)+feel for you. Lupus has attacked my brain(epilepsy, TIA), kidneys, heart,lungs,liver,eyes,skin...but as soon as you mention stomach to a lupus consultant,they do not want to know. I am appalled. Ok, that's my rant over. Wishing you all the best+ hopefully some answers or progress very soon MusicalFurbaby! Take care xxx
Hi Whitemagnum, thank you! I can only imagine what 4 months of diarrhoea would be like 💩💩, but yes, like you I’ve been virtually housebound with no relief. It’s so frustrating to suffer for months on end and get no help with it. I’m sorry to hear they have been so dismissive of your stomach issues; I was under the impression that lupus absolutely affects the digestive system! I totally understand your need to rant (feel free anytime) as I did yesterday. Thanks for sharing—while I’m sorry for your suffering, it’s kinda good to know I’m not the only one, if that makes sense? Like we’re not completely alone. ☺️💛
Could be Sjogren's or even scleroderma overlap? Or Vasculitis? Just because you have lupus doesn’t mean it can’t progress to include the others which do very much involve the gut. That’s problem with centres of excellence for just one disease only - they sometimes can’t think out the box!
Goodmorning! I too have a terrible gut that's been a nightmare for 20 years, my lupus not helping. I've had about 10 colonoscopys/endoscopys over the years. My colon doctor put me on dicyclomine 20 mg for the horrendous cramps and my life saver for diarrhea about 6/8 times a day is lomotil. A God send for sure. I can take 1 lil pill and the problem stops. They have a generic name and it's diphenoxylate-atrop. Dosage is 2.5-0.025 mg for me. Also my stomach got so sore I couldn't stand up and walk. I had to hold my stomach underneath to walk. I thought surely I had cancer. But my doctor who is God sent put me on Carafate liquid daily. Took me about 3 months to heal and feel better but the med is awesome. It does come in pill form and you dilute in water and drink. The med heals the inside of stomach and used for ulcers. Ask your colon doctor about this. It's truly helped me. You can become dehydrated within a few days from running to the bathroom. Sometimes pushing fluids doesn't amend the issue. You have to go to hospital and have a couple of it's to put you back where you need to be. Hope this info helps. Prayers for you feeling better.
Have you had your thyroid checked I had all those symptoms ended up calling out a ambulance. Turned out I had a overactive thyroid, on meds now and slowly getting better. I too have SLE.
Thanks Bessy01, yes thyroid has been checked repeatedly! I’m the kind of person who feels awful but tests normal for most stuff—except the lupus markers of course!
Morning. I was admitted into hospital in 2020 as I couldn't breathe, simular symptoms to yourself. While they were testing my vitals they said my heart was racing abnormality. It was doing it so much they took me of the machine as my heart rate was constantly triggering the alarm. Scans, tests, xrays all came back normal so they just discharged me.
I got a appt with my specialist and I was still in the same position of not being able to breath properly. As soon as she layed her hand on my back I almost passed out!
She said it looks like fibromyalgia or MCTD. She upped my Amitriptyline and after weeks of being like that, I started to get better. I was/am very concerned about my heart racing. My gp got me to wear a monitor for 24hrs and everything was fine. So I think it was the situation or symptoms that got my heart going. I remember the nurse once saying while she was doing my blood pressure etc, that it was fine, but my pulse is like someone who is running a marathon.
So after all this time I've noticed if I do any exercises that involve twisting my back while my legs are stationary it can trigger this off. I can counter how bad it gets with some back stretches.
Thanks Sarahalice, how awful for you to go through that experience. Glad the meds have helped. Exercise certainly triggers this breathlessness for me but so does speaking and singing, regardless of whether I’m moving around at the time or completely at rest. There is something about exertion that triggers it. Unsolved mystery 🤔☺️ Thanks for sharing!
Again - this sounds SO like me with singing and exercise. Are you sure you don't have Sjogren's? 30% don't have the antibody and this cohort often have the more neuro/ cardio version.
Yes lots of people inc rheumatologists assume this so you aren’t alone. It’s kinda like the way people think that everyone with lupus will have a butterfly rash and kidney issues and everyone with scleroderma will have a tight shiny face and hands.
All these diseases can present differently to what’s expected I believe. There’s a link someone posted years ago on neurological sjogrens - it gave me a big wake up call and I pushed to get tested after almost being misdiagnosed with MS. I’ll try and find it for you by Google if I can - might help you or others get some clarity - you never know.
I don’t feel I have that much dryness compared to many here - I can cry and often have too much drool - but definitely got sjogrens and I have no outer skin hardening so far but definitely got scleroderma. My dermatologist and rheumatologist have hedged on lupus and Vasculitis because no antibody for either. But I don’t have Sjögren’s antibody either however it was biopsy confirmed.
Opposite applies to my systemic scleroderma - antibody 97% definitive but all inside my gut plus Raynaud’s called Sine . There’s nothing simple about any of these diseases. Here goes I think this is one someone here gave me: hopkinssjogrens.org/disease....
That was an interesting article, especially in light of the fact that I do have vasculitis of the small blood vessels. I don’t tick many of the Sjogren’s boxes, only the heart/respiration problems, but it’s interesting to think about.
Hi. I really hope they get to the bottom of it. Its a very scary way to be. You always feel like you are stepping on egg shells, just encase something sets it off. This week I helped my husband move 80 bags of mulch, luckily they were very light. All the way through I thought this is going to set it off but it didn't. However a few days before that, my breathlessness started by me just walking a few steps in the garden. So I have no clear idea what's going on! Best of luck with finding some answers x
Amytriptaline can cause quite severe palpitations in many people. It's a nasty side effect. I couldn't tolerate it. Have they considered that as a cause? It doesn't have to happen each time you take a pill either. Mine was worse depending where I was in my cycle.
Oh wow, I didn't know that, im sorry that you can't take it. I'm lucky as I haven't noticed any side effects as yet. It is great for taming my restless legs as well as my pain and breathlessness. But I can't say it is 100% affective.X
So sorry to read what you are going through. Unfortunately, I have no success story. I've been going through this for a number of years as well to the point that most of my medical specialists have now pigeonholed me as being a hypochondriac! Excluding one, thank goodness.
Like yourself, the same symptoms including heart rate but sporadic sharp chest pains, feeling constantly cold including overall weakness as well to the point that I'm unable to walk and appetite decreases, nausea and painful migraines including dizziness plus the fatigue is as though I've drunk a whole brewery dry. The latter came on progressively since 2021. Chest X-rays have come back as normal. Heart readings indicated erratic patterns. Inflammation of the airways; CO2 + B-cell was not measured and ANA positive plus C4 low (but this has remained low - within the minus range - since it all started). Former Rheumatologists always reported within their clinical notes that my blood results, unaware that I also had access to them, were 'normal' and 'condition seems settled' despite these outcomes! Exercise, even gentle and yin yoga, triggers it. Most recently, it occurs when walking as well.
At first, they said it was my asthma but I tried to explain there was no wheezing and as I'm a veteran asthmatic (since a toddler), I know this condition inside out. One specialist commented stating that it's common among those who have been diagnosed with lupus. Just something you have to put up with. Most recently, they've said it was perimenopause and my Gynaecologist, thankfully, has refuted this comment made by my former Rheumatologists.
In essence, it's gone on for so long that in 2020, I noticed muscle atrophy. Although, that year was really, really bad. However, it could be due to my reduced lack of movement.
At present, I'm managing this all by myself using my asthma medication which does absolutely nothing. It is very scary and I'm just going to allow it to manifest into whatever it is meant to manifest into and maybe then, they'll do something about it.
I hope yours gets sorted and I'll be following your post to find out the outcome(s).
Hi Amakura, thanks so much for sharing your story. Your story has some similarities to mine hey! It’s so frustrating when they try to write it off as hormonal or when they just shrug their shoulders and tell you to ‘live with it’. Um, that’s why we go to the doctor, because we can’t live with it! Sorry to hear of all your troubles, and that it has been going on for so long. I know it can take a long time to diagnose these things; I guess this particular flare is getting to me so bad because I’ve been off work this entire time, and I’ve never had to do that before. I’ve always ‘managed’—faked it till I made it! Funny thing about faking: you can fake it with pain, even fatigue, but there’s no ‘faking it’ with breathlessness! If you run out of air, that’s it!
Agreed and yes, I haven't been able to return to work as well but I'm going to see if there's any hybrid work that I can access because I'm going crazy. I'm aware Lupus UK has some resources about returning to work but alongside their publication, I've also discovered evenbreak.co.uk. They have resources (recorded webinars with various companies etc.) where they talk about returning to work etc. I've found it empowering and quite helpful with what to specifically request in terms of reasonable adjustments (for when I identify a disable friendly employer).
After reading your post, and upon reflection, I was reminded of the arduous task of trying to get my lupus symptoms - prior to diagnosis - taken seriously. Even back then, again, the response was: 'it's all in her head', again labelled a 'hypochondriac', 'it's a normal reaction to stress', 'it's your eczema', 'not using her asthma inhalers properly' or 'you've got fluid of the knee' or 'injured herself and can't remember when it happened'. I gave up the battle of playing medical charades, and when the symptoms occurred, I became an armchair nurse, kept my chin up and kept on going. Eight years later, the magnitude of a particular symptom became too much and suddenly, the bread crumbs lead directly to lupus including a number of other autoimmune conditions all waiting in the queue.
You should take solace that your medical consultants do believe you despite the infuriating (temporary) impasse and for me, that's an indication that you're halfway there. One of them or even all of them will eventually have a eureka moment, and when that happens, it will all make sense. Keep on at them. They feed off of facts/evidence, so track your symptoms (i.e. when it happens/time of day/what other symptoms happen at the same time) in preparation for your appointments.
Good luck and update us, as I would love to know the outcome.
Absolutely, I’m doing all the tracking, waiting on that ‘eureka’ moment! I’m going to talk to my GP today about returning to work and starting occupational rehab. If we know my heart is not going to explode and my lungs are not going to collapse, it’s probably safe to start moving again! I’m considering going back to work one day a week at first, doing some admin, helping out the team, and gradually returning to clinical work. It’s going to be very gradual though—it’s taken 4 months for me to show some small improvements in my breathing!
Hi there. So sorry to hear about your woes and how trying and worrying this must be for you. Even when doctors are trying to be helpful, no one really understands how you feel except you. Hopefully things will get better for you soon. Two things sprang to mind. Firstly, in our recent heatwave in June here in the UK where temperatures hit 40 I had a Friday late afternoon hospital appointment with my endocrinologist (I have several health conditions) and by the time I got home, I had racing heartbeat and palpitations. This went on all weekend. An ECG and tests etc all showed to be normal (still can't quite believe that) as did various following blood tests. After 4 days, it all suddenly stopped and went back to normal. After googling (I know the health professionals hate us doing that, but needs must), I read that taking 1000mg of Vitamin C helps to stop palpitations. I did try this (1000mg slow release Vit C tablet taken after breakfast) and since then I have not had any trouble. Don't know if that may be of help to you. Obviously it goes without saying that one should not ignore things related to the heart but having had it checked out and told all was well, I thought I had nothing to lose. Secondly, regarding your private health insurance (sadly I don't have that anymore since retiring in 2019 and it is unaffordable for me now on a pension), if your insurance company are being demanding for a result (not exactly encouraging for you as you have done your utter best), ask them to suggest who you could consult and if they have any ideas - put the ball in their court as this is not exactly fun for you. My last insurance company had their own 24 hour help line where you could phone up and get advice (free of charge although I suppose that was factored into the annual premiums) 24/7. Might your insurance company have a similar service you could ask? Good luck and hope things improve very soon. Take care and all the best.
Hi Purplebox, good thoughts! My insurance company definitely have an occupational rehab service and they’re happy to provide that if I want it. Not sure about medical consults for diagnostic purposes; I’d rather keep seeing my GP who knows my history and how complex my health can be. My insurance co. is happy to keep paying me, they just require ongoing paperwork to justify ongoing payments in the absence of a diagnosis. Bit of a pain in the ass. But I’m grateful to be receiving payments, it’s provided great financial relief while I’m doing medical investigations. I’m seeing my doc again today so we’ll see what we can cook up, but it’s clear he doesn’t know what’s going on and doesn’t know what to do next. He has started encouraging me to get a second opinion ‘if I want’!
Hi MusicalFurbabyA second opinion sounds like a good idea if you want to go down that route - may be useful. The over riding thing is not to feel pressured as that does not help at all. Good luck and hope things get better for you soon.
Hi MusicalFurbaby, I am so sorry you are having such a hellish time. What you are going through sounds really awful. Please know that I (and the other members here) have you in our thoughts. Vent away!! You need to. I have vented on here and the support is amazing & even if there are no answers it helps you to feel less lonely. Remember you are not alone 💚 love and positive thoughts from Scotland 🏴 xx
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.
I’m sooooo depressed, help!!
Diagnosed with lupus 18 months ago 
Annoying people 
Hurrah an appointment with rheumatologist, but I’ve got a fever
