I get episodes of chest pain on exertion, when stressed, cold, or tired. They occur frequently, sometimes severe enough for a trip to A&E. Cardio investigations have shown no cause for the pain.
I was diagnosed with ET in 2009. Could the chest pain be part of ET?
It's interesting, I have the same thing-- & yes, I have heard that chest pain can be due to ET. Also, costochondritis-- which is perhaps caused by the ET. Like with so many facets of our disease, we can just never be exact, as there are still so many unknowns. But-- I hear you, and understand the pain which is incredibly frustrating & frightening too.
One of my symptoms for some years before diagnosis of PV was chest pain extending up into my neck and jaws. I don't get it so often since starting on hydroxycarbamide. It has never been diagnosed as angina. It is frustrating and frightening and would last from ten minutes to half an hour and then I would feel as right as rain again. I never did seek medical help when the episodes arose, knowing that by the time I got to hospital it would have subsided. Maybe unwise, I don't know..
Hi Daisy,
Thank you for your reply. I am on HU and aspirin.
My chest pain sounds similar to yours, a feeling of pressure and pain centrally over the chest, radiating up into the neck and jaw.
GTN spray usually relieves it, but sometimes has no effect. (just causes a severe headache)
Pain can be mild and transient, if I am walking a bit fast I slow down and it eases.
It can be moderate, and improves if I sit quietly for 10 minutes, or it can be pretty bad with profuse sweating, palor, shortness of breath and dizziness.
After a bad attack I just want to sleep for about 24 hours. ECGs in A&E are normal, but by then the pain is easing. Troponin levels are normal.
At their worst, these moderate or bad attacks have happened 8-9 times a day over several months, at best they are the milder episode 1-2 times a day.
The stress test showed changes on the ECG, but the heart scans and Angiograms were normal.
It has been both frustrating and distressing that there is no diagnosis for these pains and no treatment.
On-line I found some references to episodes of chest pain as part of the varied symptoms of ET, neither my Cardiologist nor my Haematologist were aware of this when I asked if there was a connection.
My GP and A&E registrars have said that I must attend A&E if chest pain is severe and not relieved by GTN, because of the increased risk of a heart attack with ET.
Interesting timing, I spent a long afternoon at the hospital yesterday, following my trip to the GP with chest pain. The GP thought a Pulmonary embolism, but an ECG and echo cardio gram followed etc I have to go back so no diagnosis yet. I now feel ok so maybe just angina... I have ET
Hello Gallery123, I hope you are feeling better now.
My advice to be prepared for unexpected trips to A&E, is to keep a printout of your details in your diary and update it regularly, keep a copy in the box with your medicines and take that with you.
Mine has the following;
Full name, date of birth, address, phone number,
Husband's full name, contact number.
GP's name, address, phone number,
Consultants names and hospital.
My medical conditions,allergies, list of medications and doses.
List of investigations and the dates
Brief summary of what ET is, risks and symptoms.
This saves an awful lot of answering a lot of questions when you are in pain.
Hi Guys, I have PV and recently have been getting small waves of chest pain which so far have not amounted to anything much but are consistent every day. I am lucky so far that the pain is only moderate but I haven't had it checked out either but maybe I should. I just feel I am never away from my GP!! Regards Aime
Hi Aime, it is one more thing to worry about! It would be worth noting down anything which triggers these pains, and if they are so frequent please do see your GP.
Are you more likely to regret getting timely medical advice or failing to get that advice?
Regards, Borage
For years before my diagnosis, as far back as 1999 I was getting these "attacks". They did not seem to relate to anything in particular although I had a very stressful job at the time resulting in lack of sleep and anxiety. Sometimes an "attack" awakened me during the night. I didn't get them frequently but intermittently. Eventually, when anyone showed concern or asked me about them my attitude tended to be, and to say on many occasions, "Well, it has been happening for years now and I'm still here. It only lasts a relatively short time, then I am as right as rain". I think I would have sought help if it wasn't that I knew by the time I got seen at hospital it would have all gone away again and I probably would have just signed out and vacated the waiting area. I think even now I might do the same. Am I right or wrong?
Like others have mentioned, the haemo doesn't seem to know of the symptom but it is a very frightening experience when it happens. I don't even have an angina spray.
Hi Daisy,
They are frightening attacks, when they are at their worst they wake me at night or start just as I am falling asleep. They started in 2001, and though I had slightly raised platelets, ET was only diagnosed in 2009.
I worked in a hospital and received very prompt medical attention. My blood pressure and pulse went very high during an attack, and I was very pale, with pressure and pain centrally over my chest radiating into my neck and jaw, the pain was so bad it made it hard to speak, my eyelids felt heavy and I could hardly keep them open.
My GP followed up the A&E report and I had thorough investigation by a Cardiologist, and tests were repeated several years later following another period of frequent severe attacks.
It would be worth discussing your chest pain with your GP with a record of dates, trigger factors, duration of pain.
The fear is that this one is a heart attack, women have more varied signs of a heart attack from those experienced by men. Only a troponin test proves that cardiac muscle was not damaged. But avoid being ill Friday or Saturday night, you don't want to add to the workload of A&E staff dealing with violent drunks, and it a very scary place if you have stress related pain!
Hi just a thought a lot of the symptoms on here read like Prinzmetal angina... anyone had this discussion with Cardilogist or GP? i know i had to do my own research to get where i am today but.. as and see what they say - try to get tested...
Hi Borage,
I came across your post from 8 years ago regarding your experiences with symtoms similar to those I have been experiancing over the past year.
Aa&E recommended a cardio assessment due to symtoms described by you in your previous thread, ie. chest pain , breathlessness with any exertion coupled with increased chest pain . They considered me at high risks for a stroke due to symtoms, age 59 and ET.
The pain on my left side began about a year ago and gradually worsened and then progressed to increased pain and breathlessness by exertion such as my daily walk.
My gp refered me to a Dublin hospital to a cardiologist for a cardio assessment . However , while at the assessment I was admitted as an emergency patient as the troponin level in my bloods was slightly raised. The cardiologist cancelled scheduled stress tests due to raised troponin and his concerns it could indicate a possible heart problem.
They did an angiogram, chest x rays, echocardiogram and also a heart monitor for 48 hours. These were followed by a ct scan on my lungs and daily bloods tests but nothing showed up and the raised Troponin level went back down to normal after the first "rogue" test
Following on my full MOT the cardiologist said given all cardio exams were clear and that the chest ache although to a lessor degre is present when om at rest, his prognosis is my heart is not causing my symptoms.
My lungs scans were also clear, so no problem there either. He prescribed an anti inflammatory, vimovo for muscle inflamation to be taken twice daily for seven days . By the end of this course of meds my symtoms had disappeared and for a few days I felt much better 🤗
However, the ache has returned! I am currently taking paracetamol to ease the pain and hoping this may prevent any worsening of the ache/ pain and breathlessness on exertion returning.
I currently attend my local hospital & haematology unit . The haemo team monitor my bloods but have never appeared to have any interest in my symtoms, or indeed their relevance to MPN patients . My symtoms are the reason my gp initially tested my bloods and later followed up on both in refering me to haemotologist!
I had my regular 3 monthly appointment two weeks ago and was told by the haemo intern, "your platelets are high but steady , ldh is high but this is part of the course, your symtoms are psychological, you need to go gor counselling ".
My gp, who I have attended for many years and knows me very well is very thorough. A local cancer support therapist I have been attending already advised me strongly, to seek a second opinion. Neither of them has ever considered my symtoms to be psychological.
I requested to be referred for a second opinion . The haemo questioned why would I want to be referred for a second opinion as they will just tell me the same as she is saying and basically refused my request 🤔
The cardiologist has thankfully said he is referring me to an MPN specialist and that it is ridiculous the haematologist team are refusing to refer me for a second opinion .
My hope on this is that the mpn specialist may give me some insight as to whether the muscular inflamation etc could possibly be linked to ET and maybe some advice on the ongoing and future management of my symptoms and condition.
In the meantime I would really appreciate if you could possibly let me know did you ever get to the root of your pain and breathlessness or maybe receive any info, one way or another regarding association of these particular symtoms to ET or MPNs?
Many thanks ☘️
Dear Woolandgarden,
Isn’t that about the worst response you can get when you are in pain? “We don’t know the cause so it must be in your head.”
I was very upset when someone with no medical training told me my pain was psychosomatic because the cause had not been found.
A&E doctors did consider if I had intercostal muscle pain. My work involved a lot of heavy, awkward lifting and bending. I pointed out that I knew muscle pain well, and GTN did not relieve that, though it did relieve the episodes of chest tightness and pain I was experiencing.
I struggled on at work, but eventually I was told not to return. It was a busy hospital and my being taken ill there did not help. They were very kind, I got pensioned off as unfit for any work at 56. It is not much to live on because married women were encouraged to take back their NHS Superannuation contributions, but it has saved me from the horrors of the UK benefit system. My state pension is still two years away.
There is an element of stress in relation to the episodes of chest pain. The attacks are few and far between now I am not in one of the most horrendously stressful workplaces, an understaffed, overcrowded, NHS Regional Maternity Hospital. Their life in your hands. I still have the nightmares about staff shortages.
I live quietly now. Until lockdown I swam a bit, took gentle walks with the dog, did Tai Chi, Yoga and Pilates and used the gym at the local school sports centre, nothing too strenuous, and stopping when I had enough. Too fast a walk, a hill or two flights of steps, brings back the angina. I have lost fitness since lockdown.
I stay well hydrated, have regular meals, avoid processed food and cut down on carbohydrates, and try to get enough sleep. I try not to get anxious and annoyed, and avoid TV News broadcasts.
I haven’t had any further investigations into the chest pains. There didn’t seem much point. I think that if different medical specialists spoke to each other the connection between angina and ET, and the number of sufferers, might be recognised.
My thought was that it might be microvascular angina, which seems to be temporary spasm in small blood vessels, or something to do with the abnormal sized platelets in ET. Dehydration at work certainly made attacks of pain more frequent, and with ET I have frequent sweating episodes.
The cardiologist I saw last stopped most of the medication which had been increased at every hospital admission, so now my heart/circulation medicine is 40 mg of Simvastatin to increase the elasticity of the blood vessels, (my cholesterol was normal), Bisoprolol for raised BP, and GTN spray.
I do hope that you have more luck at finding the cause and the treatment for your chest pain. Try not to get frustrated or angry at your medics as it will only make the pains worse.
Best wishes, Borage
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