I have SLE and am under cardiology for investigation due to tachycardia.
My Rheumatologists think it may be PoTS. The cardiologists have done loads of tests but are yet to give a diagnosis.
Unfortunately the cardiology waiting lists are huge (took 50 weeks on the urgent lists to even be seen after an abnormality was found on my echo!) and despite having my 24 hour ECG over 3 months ago, I've yet to hear anything regarding the results or my next appointment. When I've rang to chase it they were rude and dismissive and made me feel like I was being ridiculous and impatient for asking.
I saw my Rheumatologists in April, up until now I was seeing them 3-4 times a year. However, because they have such a back log of appointments I won't be seen now for a year unless I need an emergency appointment.
I was referred to physio and hydrotherapy but they have paused my referral until I have a diagnosis from cardiology. If thus doesn't happen within 6 months (from April) I will have to be re-referred via rheumatology.
I just feel as though I've been abandoned. My symptoms are all very debilitating, my average resting HR is between 100-150bpm, which is impacting my fatigue and pain levels in SLE as well.
I'm struggling to work (despite working from home full time), struggling to have any quality of life, I'm unable to leave the house at all, can barely do the small amount of self care I was previously able to manage.
I've tried seeing my GP but getting an appointment is just as hard.
How do you cope when you have to wait months/ years between appointments?
Written by
eescvc
To view profiles and participate in discussions please or .
Hello sending you lots of hugs and empathy, it's horrible it does feel like being abandoned.
I have SLE & POTs - though POTs not officially diagnosed as I've never seen cardiologist.
My GP surgery is sympathetic and helpful but tend to refer me back to hospital who tend to ignore me. Despite continued flares I didn't see anyone for 18 months and I complained a lot!
The way I cope with it is reminding myself this is not my fault, that I have an illness that flares up and calms down and this phase (however long) will pass...it will. I make it part of my reality, I don't like it but I try my best to accept what is happening to my body and my daily limitations and that I do not need the validation of doctors to know what is happening to my body.
When I am feeling emotionally strong I use the anger I feel to make my needs known to the hospital, tell them my concerns, I tend to do this in writing and copy in PALs. Sometimes this is helpful. I remember that unfortunately it is often a case of having to shout your needs. I keep a list of symptoms that I send to my consultant, I don't find 10 minute phone call update gives enough time.
I tell the people who love me and will respond in the way I need how I am feeling and what I need.
I recite "you do not need permission to rest, even from yourself".
I make sure I do nice things more myself everyday and really appreciate them.
I'm taking steroids at the moment so I'm hungry and I LOVE chocolate so I'm eating loads, this is OK its not forever, it makes me happier right now.
Commit to the things that actually make you feel better not the things you think will. Doing 3 lots of 10 minutes yoga a day makes me feel much better than forcing myself for a long walk because thats what I want to be able to do.
Also choose your distractions wisely, doom scrolling doesn't help!! sometimes I can't focus to read a book even though I love reading, so I use a colouring app on my ipad so I lie down.
Above all, be your own best friend, without guilt.
No, thank you for the essay! It is really helpful getting your incite.
Oddly enough after posting this I received a letter in the post from cardiology confirming they have reviewed my 24 ECG and will see me in 2-3 months to discuss diagnosis and treatment. Yet more waiting but the fact they have been so thorough in looking into the cause, I can't really complain.
In all honesty I think you *can* complain about the wait - we all should. You're working and paying taxes despite being unwell - we all probably are, and the service received from the NHS is just unacceptable. They can manage to pay fat salaries to senior managers, HR and diversity consultants; they can find the time and money to eg change the webpages of my daughter's maternity hospital so that it reads 'birthing person' rather than 'mother' (and this in a unit recently jisged by the CQC as 'requires improvement' but they can't sort out the waiting lists? I've been waiting 6 months for a referral to happen - a short time compared to you - but I'm going to be complaining from next week long and loud.
I know exactly how you feel - I see Rheumatology for lupus and Cardiology for a leaky valve. Actually it’s been about 4 years since I ‘saw’ either of them, because now I only get about one 10-minute phone call a year.
I had to change a Cardio appointment and the next one they could give me was 6 months later. I think the NHS is ok for urgent issues but it’s really bad now for chronic illness. And these types of illnesses can be soul destroying.
I have been feeling so isolated and neglected, I’ve had to start antidepressants and get some mental health support. Again it’s all over the phone, but it did get started quickly and they have at least listened to me. I would recommend them if things get worse (just Google NHS mental health services and check out your local area - you can self-refer).
Have you made contact with POTS UK? They have an excellent website and may be able to advise you on being referred elsewhere. As you know POTs is a problem of the autonomic nervous system, it's not primarily a cardiology problem, although it has symptoms that involve the heart rate.
I get seen at Queen's Square in London which is the National Centre for POTs at the Autonomic Unit. I got a second referral there and they were fabulous.
I'm not on Facebook but apparently there is a very good POTs support group on there. I have POTs and SLE and about 8 cousins of mine have POTs so I can empathize with your situation.
My general rule is that if you feel that you are banging your head against a brick wall, then try another wall... meaning as your GP to refer you elsewhere. You are allowed to request this.
Totally understanding how you are feeling. I also am waiting for an ‘urgent’ appointment for results on my debilitating breathlessness, which is seriously impacting my life and now I have a symptom where my finger goes black if I do too much, which is worrying. I am afraid that this is the result of the tories underfunding the NHS for the last 13 years - sorry for politics, but when you are waiting for healthcare it is scary. I hope you are seen soon - good luck 😊
I'm shocked to say the least! You had to wait 50 weeks to see a cardiologist and no one will give you the results of the testing you had! I think you should go to the ER because of the way your feeling, you need to be treated now. I can't imagine the frustration which only makes you feel worse. I wish there was something I could say or do to help you and I know your not the only one. Good luck
You have my sympathy and understanding too, I feel the same. My care used to be so good and I genuinely felt looked after but I feel everything is just a battle now.
I have a diagnosis of pots , it can be very debilitating. I was under cardiology and had a brilliant specialist but got discharged with no explanation and am still waiting for a referral back to cardiology but it won’t be with my original specialist.
Please feel free to ask any questions re pots, I’ll help if I can x
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.
Is it possible to be diagnosed with SLE and chronic fatigue syndrom (CFS)?
How often are we supposed to be seen by our rheumy??
Is this really how LUPUS patients are treated??
23, newly diagnosed SLE, struggling to cope
How to cope with the waiting?
