So its the second time I have been taken into hospital with chest pain. All tests clear, have fitted a reveal device which records my hearts activity.
I wondered if anyone with lupus has this it feels like a heart attack, it is very scary but nothing shows up?
Anyone else?
Yes, I have SLE and I get what has at last been discovered to be coronary artery spasms. It is very painful and just like a heart attack as you say.😩 They occur often when I’m at rest and early hours of the morning although I have had a couple at other times. The last time I had one was last May when I was walking some of the West Highland Way . My GTN spray reduced the severity of the pain of the spasm but didn’t stop it altogether. Because it was so similar to a heart attack the mountain rescue team sent me to hospital in Fort William where my heart was found to be sound 👍🏻 but I felt drained and exhausted for a long time afterwards.😴 I’ve found out more about the condition from a British Heart Foundation booklet about Angina. I have also Googled it and found it is linked to Raynaud’s which I think is the cause of my intermittent episodes.
My GP (who used to work in Cardiology) has prescribed fast-acting Verapamil for me to be taken at the first sign of the pain and should stop it in its tracks. I’ve yet to try it out as I get these spams so infrequently (thank goodness!) but until I know it works I’m terrified to fly anywhere in case I get a spasm on the plane. 😳
What has been said to you about your pain?
I wish you well and hope they get to the bottom of your problem which may not be the same as mine. Best wishes, 🤗😘💕
Oh my, this is exactly like me. They have no clue. The last time it happened was about 12 month ago. I also had gtn spray which took away the severity but it was still there.
I will look into this as its very very similar.
Thank you for posting x
They had no clue about mine either for many years. 🥴 Mine come in a series of 3 or 4 per episode with a few minutes respite between each. The spasms basically cut off the blood supply to the heart temporarily but luckily do no permanent damage but do cause excruciating pain. I suffer Raynaud's too and the link between the two I think is the reason I get them. The first I had aged 18, then second when I was 36 and I’ve had another 4 since then. Some poor folk get them as often as daily so we are lucky we aren’t one of them.
Try Googling Coronary Artery Spasm and see if the symptoms relate to you.
Good luck Sallmell and let me know how you get on. 🙏🏻 Very best wishes, 🤗😘
I already did as did hubby and its me ! I thank you for this I will raise it x
I’m so pleased. 👍🏻 It is the not knowing that is the worst thing isn’t it. Good luck Sallmell. 🙏🏻🤞🤗😘
Indeed. Its really scary too x
Let me know how you get on. Take care. Hugs 🤗😘
OMGoodness Spotty-ewe
I’m so sorry you have these episodes.
That is exactly what I have too. The first one was at age 18. That was 50 years ago and just called muscles spasms. I was given nitroglycerin. I took one and instantly it caused a massive migraine. My head felt like it’d explode.
I have Raynauds too.
Thank you sooo much for this info and answering one of my puzzled questions.
I pray that you will be as painless as possible.
Take care.
Much love hugs and orayers.
EvaJo xxx. 😊🙏🤗💗😘
Hi Honeybug,
So sorry to hear you have these awful spasms too.😩 Wickedly painful aren’t they? How strange you got your first one the same age as me. My father thought I was having a heart attack and put one of his GTN tablets under my tongue (as they did in those days) . Luckily it passed and I didn’t have another until I was 36 and on holiday in Cyprus! I was in a cardio unit there for 5 days before they let me fly home and the specialist there thought my liver was the cause of it as I’d picked up an infection which affected my liver. He thought the enzymes the liver produced caused the spasms. 🤷♀️ It was only 2 years ago while being tested for normal angina pain that I was given the booklet about Angina and immediately recognised the symptoms of the coronary artery spasm as being what I’d experienced all these years off and on. I discussed it with the doctor and he agreed that is what I’d experienced and told me to use my GTN spray (prescribed for the other angina) if an episode started. I did that last year while walking the West Highland Way and it helped the first time. But when the pain returned about 10 mins later while walking again it didn’t stop it this time just reduced the severity of the pain. I’m now waiting to try the Verapamil . 🥴
GTN is noted for causing migraine/severe headaches if too much is taken which is why they limit the number of squirts per use and the number of times you can use it per episode. But it sounds like you had tablet form?🤔 I wonder if you’d get on better with the spray?
Anyway, I’m so pleased the info I provided about my own experiences has helped you. 👍🏻 Thanks so much for your kind wishes and prayers and I hope you too are not plagued by these awful spasms and have a painless time ahead. Love and hugs 🤗🤗🤗 💕💕🙏🏻🙏🏻💐
Thank you so much sweetie.
Yes they are terrible.
I did use the tablet form. I also am prone to vertebraebasilar migraines due to hEDS so the nitro tab really is a no no. I’d rather suffer the heart spasms than my head exploding any day.
I had them quite often for years.
Then they eventually just got occasionally.
But I’m so grateful to you for your info.
I’ve just learned to accept them as part of the heap of problems I know I have.
Take care my friend.
EJ 😊🙏🤗💗😘🌿🌸🦋
I have these coronary spasms, my cardiologist called it Microvascular Angina and I was put on Ranolazine.
It began four years ago.
I’ve had M.E for over a decade and yesterday saw a Rheumatologist who thinks I may also have mild lupus.
Interesting connections. Its pretty scary . X
Sorry to hear you suffer spasms too. I’ve just looked in my angina booklet provided by the hospital and published by British Heart Foundation and the coronary artery spasms, also known as variant angina or Prinzmetal’s angina is not quite the same as micro vascular angina or cardiac syndrome x as it is also known. So the medication will probably not be the same as the causes of the two spasms are quite different. I see your form says that sometimes hormone replacement therapy is used because a change in hormone levels is thought to be a cause. All very interesting. Sorry to hear about your ME and hope you don’t turn out to have Lupus on top of it. Keep us posted. Best wishes, Spotty 🤗😘
That’s interesting. I didn’t know about the different forms. My cardiologist did say that when I have menopause my Angina may resolve.. fingers crossed 🤞
I’m hoping I haven’t got lupus too. All very overwhelming and confusing.
Best wishes ☺️😊
Keep us posted x
I hope your angina does resolve with the menopause. 🙏🏻🤞 See if you can obtain a copy of the British Heart Foundation booklet called ‘Angina and living life to the full’. It explains all the different forms of angina including the indifferent spasms.👍🏻
Keep us posted with how you go and whether you turn out to have Lupus or not. I’ll be praying you don’t. Best wishes 🤗😘
Hi Dangermouse. I too have had longstanding ME and was diagnosed recently with a rare form of vasculitis, which is a lupus-like syndrome - urticarial vasculitis syndrome. This was picked up by a rheumatologist on an autoimmune panel of blood tests. It was not the first time I was tested for autoimmune conditions, but it was the first time I was tested for a specific antibody called anti-C1q antibody. It might be worth your rheumatologist checking if you have this ( if they have not already done so). I'm learning that vasculitis seems to crop up with ME patients, although reading through the NICE guidelines you wouldn't think this! There are other types of vasculitis too. A friend with long-, standing ME has developed giant cell arteritis. None of these vasculitides are specific to ME but can occur on their own or with other infections or autoimmune diseases. Try not to feel frightened at the prospect of having lupus, or a lupus- like syndrome. You are already experiencing rotten symptoms with ME and at least no-one can say they are imagined symptoms if lupus is diagnosed. Plus, there are drug treatments available to try with lupus. I wish you better health 💐
Hi Hoofprints,
Thanks SO much for your reply to me. I am confused right now, it feels a lot to take in but I suppose when the bloods come back I'll feel better as I'll know for sure then.
Thanks for the information too - regarding the specific antibody test, I wonder if she did that one? She said she was doing lots.
Yes, the NICE guidelines for ME are not so great are they. They're still being reviewed, hopefully they will be better.
I wish you all the best and better health too : )
Hi Dangermouse. I was interested in your comments as I was originally diagnosed with M.E., then later with Lupus and other autoimmune plus genetic stuff. My own rheumy seems to think that a person has either M.E. or Lupus, not both together. However I very much doubt that in my case - going by my own symptoms.
You say you were seen by a rheumy yourself (presumably a consultant?) and it seems that they don't have an issue with the two co-existing. So if you do post more on this topic, I shall be very interested to read what you have to say. I am not wanting to pry but wonder if you are in the south of the UK - I am far north and I wonder whether there is a north/south/regional aspect to what a patient is diagnosed with.
Hi there,
That’s interesting. My Rheumatologist consultant (like others I’ve seen in the past) avoided saying M.E. She kept saying chronic fatigue and then it progressed to FM with chronic fatigue. But, yes she said she’s checking for Lupus and I have FM.
I was diagnosed with M.E over a decade ago. I’m in the North.
I’m totally confused right now to be honest. Waiting to see what bloods show.
I'm not surprised you are confused. After my further diagnoses i.e. Lupus, Hughes Syndrome, I initially felt relieved. Ah! I didn't have the dreaded M.E., shunned by so many in the medical profession. Medics might be more sympathetic and helpful (well, a bit....)
But then, as time went on, I began to wonder about my PEM - in light of accounts I was reading from not only from the M.E. but now from the Lupus and Hughes communities, too - its extent, the recovery time needed, etc. What I was experiencing in terms of PEM (which for me can be pain, a flare in GI symptoms, etc, etc, etc, as well as 'shut down fatigue', and which can take weeks to fully resolve) just didn't seem to be described to the same extent outwith the M.E. community. Then my GP said she thought I also had Fibromyalgia, which totally confused things in my own mind.
Anyhow, where I'm at now is this: I pace rigorously; I have to rest religiously; I have cut out a whole raft of foods from my diet that exacerbated by 'IBS' symptoms; I have worked on my sleep and have found Pregabalin (which I was fortuitously prescribed for the Fibro pain - which is only episodic and not persistent; hence my rheumy calls what I get 'a form of chronic pain') to be a great sedative to get me off to sleep (haven't told my GP this, lest it be withdrawn!). Some drugs help too. And I try not to worry too much about not getting a full diagnostic picture at present; I've pretty much accepted it won't happen within the current limits of medical knowledge. But, frankly I just hope that something in the M.E. 'nut' cracks soon and we might have some sort of diagnostic test which might help rule things in or out for many people. And hopefully will lead to some sorts of treatment.
Here's hoping!
Yes, that’s how I kind of feel but at the same time, similarly to you, I do wonder about how PEM and poor brain perfusion is experienced by the Lupus community - I have significant increase in muscle weakness, cognition, fatigue, dizziness, dexterity, swollen glands, sinusitis, migraines etc during PEM.
I’ve tried Gabapentin in the past and it wasn’t very effective plus it began to affect my mood quite badly so I came off it.
Yes, I’m hoping that something is discovered about M.E soon too. I keep up to date on the S4ME forum .. they do a weekly round up of developments which is handy.
Good to meet you.
Yes, my PEM symptoms also include cognitive problems, quite often dizziness, and sometimes migraines, too. In addition to my 'standard cocktail' of overwhelming fatigue, GI issues, sleep disturbance, and pain. I also find my noise intolerance is exacerbated and my spatial awareness is often poor.
Good to meet you too and I hope that you will get greater clarity as to the pieces making up your own health 'jigsaw' before too long.
Oh yes, the ‘standard cocktail ‘ - pain and GI issues and overwhelming fatigue in particular are regular for me.
Thanks, me too.
It is a lot to take in. I still haven't got my head around this new/additional diagnosis. People on this forum are really knowledgeable and helpful. Reading Mrs MouseSJ's post, I'm in the South. I am still being told I have fibromyalgia, but wonder if this is just an easy way of accounting for certain symptoms without further testing. As for the ME diagnosis, they have said nothing. From the post-exertional malaise aspect, I suffer severely from this, as well as the other typical symptoms. I don't know if that is also a characteristic of lupus or my lupus-like syndrome. I wish there was a way of distinguishing the illnesses- the consultant who diagnosed me years ago said that steroids were generally bad for ME sufferers as they further exhaust the adrenal glands, which seem to struggle with ME. I have not been offered steroids, so don't have to worry about that just now. I sometimes think it's just a matter of luck who you encounter as a doctor which defines how you are diagnosed.
Yes, it is a lot to take in.
Great community on here.
Same here, my consultant didn’t seem to acknowledge M.E and kept saying Fibromyalgia .. I’ve had Rheumatologists do this in past.
That’s interesting about steroids.
Yes, I agree I think luck definitely comes into it.
Yes I had the same thing about once a week for a few months. It always occurred when I was resting usually in the middle of the night. It went away in about ten minutes so I knew it wasn’t a heart attack. I changed my eating habits, lost weight, and started chiropractor care with the neck. Haven’t had problems since. Not sure what helped it, but I feel it had something to do with my neck
Yes I have had these bouts of heaviness and pain across the left side of my chest and down my left arm. Like you taken to A&E three times with suspected heart attack and released saying nothing is wrong. I then had a pre op assessment for knee replacement and they picked up some concerning rhythms on the ECG and a rapid heart rate so I was referred to a Cardiologist.After 24 hour ECG, echocardiogram and angiogram I was told there was nothing wrong with me. No blockages, no narrowing of arteries. I was given a spray to use which does alleviate the pain but gives me the most awful band type headache and of course hurts like hell with the mouth ulceration. When he was discharging me he said I have a type of angina called Prinzmetal and prescribed Ranollzine. I decided if it was not going to kill me I did not want any more medication and choose not to take it. It is scary I know xx
Oh no! I hope you are doing ok?
Yes thank you. I get the heaviness and pain sporadically but it passes
Yes I have had three episodes of sever (heart attack feeling) chest pain which was made worse when I laid down and also nothing sinister was found on initial visits to A & E. After months of investigation s with my cardiologist they discovered I’d suffered pericarditis and had an infection in the pericardium sac. Apparently I still have too much fluid in the sac which both my cardiologist and rheumatologist are trying to disperse but they did say that this is a condition that they see in people with lupus and probably that is what is causing it. I also have Raynauds so have found everyones comments interesting and helpful and something I will take along with me to my next appointments. Hope this has helped Sallmell?
Hi sallmell
I'm sorry to read of your chest pain problems and diagnosis difficulties!. It's a horrid thing because the pain is so strong like a heart attack it's frightening and has to be checked in A&E !. Then you feel a bit foolish when you get the all clear as nothing shown up!.
I've had this similar problem for years with numerous visits to A&E and lots of tests done to rule out the nasties!. My breakthru came when I was prescribed colchicine by my Rheimy because it's a powerful anti- inflammatory that they use as a diagnosis for pericarditis or inflammation of lining of heart!. If you respond to it then that's what you've got. I did also have the coronary artery spasm's which were treated with numerous pills and a GTN spray for emergencies which did also help the pain. I don't get them like I did since the colchicine so it must be the inflammation that causes the spasms!. I too have Raynauds which can add to it!. It's interesting how it's all linked to lupus!. I hope that's helpful and you get good treatment soon. How is your lupus treated as steroids can help this too?. Xx
Thanks this is really helpful. I have hydroxychloroquine and interesting whilst was on steroid injection have had no issues. Not had injection for about 5 months now and its come back again. Had them before was in steroid injection so this is very interesting to me. X
Glad sallmell that I've been helpful. Definitely looks like inflammation in your case!. Are you due a Rheumy visit?. Hydroxy isn't strong enough for the pain, stronger anti- inflammatories are needed. Do hope you can get it better sorted soon. Keep us posted. Xx
You know, I think they have missed me. I was only discussing with Hubby yesterday. I will chase it up. Im moving house this weekend so think the stress has caused a flair xx
Good luck sallmell for your move. I should think your right about causing a flare!. It's also a very good idea to chase appts. I always have to with my Rhrumy appts. Easy to be forgotten. I've just remembered another good painkiller for this chest pain Rheumy's use is Celebrex the cox 2 NSAID that's kinder to tummys. Again they use it to see if it works for a diagnosis as they've found it works for pericarditis pain. Do hope all goes well. Xx
Hi Sallmell,
I’m sorry to hear you were taken into hospital with chest pain.
According to The Lupus Encyclopedia, people with lupus have higher chances of experience chest pain due to coronary artery disease (angina and heart attacks). Angina typically occurs during periods of exertion and stress, this gradually resolves once the person rests or after the person takes something such as nitro-glycerine. A heart-activity monitor will help doctors determine the cause of your symptom. To learn more about lupus and the heart, visit lupusuk.org.uk/wp-content/u...
Please keep us updated, wishing you all the best.
Thanks i have nitro glycerine but it didn't work in this occasion. Have felt quite nauseas and fatigue with it all. Today nausea is just easing off but wow am I tired x
Its been 5 days and the pain is easing. Is that normal for a spasm?
I had a similar thing not too long ago and had a stay in A&E with chest pain, fast heart rate. They could find no apparent cause but I have managed to get a cardiology on monday. Reading this thread is giving a heads up on this stuff. Wishing you all the best
I had for years, xrays would all show nothing ,cardio tests normal. Assumed its inflammation somewhere in there, after i got short winded now diagnosed with interstitial lung disease due to the lupus, get a ct scan to watch for that
I have loads of random chest pain. I’ve had input from cardiology nuclear heart scans x2 and 24 HOUR BP monitoring..
I put it down to lupus.
One very clever trainee radiographer said chest pain should always be checked!
I replied that I might as well live in A N E.
We agreed to differ, he had no people skills at all.his attitude.. Was all wrong
Luckily my heart was ok.so hope never to see him again.
If I mention it to Docs that just look at me.
Usually get pain when at rest.
So very sorry I can’t help
I do not have lupus but have been taken to hospital many times over years for this by concerned docs and ambulance crew but like you all tests clear. The last time they recommended my gp give me device to wear for 48 hours but as usual my gp didn’t because tests were clear.
It is frightening, and the ambulance crews each time advise to go in as numbers not changing on machine they use and as stay high , they take me in , it eventually stabilises but I have no reason for why this happens , I’m normally given aspirin when this happens 🤷♀️
Hope the device helps with answers
Best wishes.
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