#35-ALL THE PAINS
All The Pains
Hey everyone!
What are the symptoms of pericarditis? The classics and the less classic? Those that uninformed doctors learned by heart and the others?
As always, my blog talks about my experience as a patient suffering from recurrent pericarditis for 4 years. I am not a doctor, nor an expert, especially in a field so little known and studied. Let's be honest, the medical profession knows little about the causes and evolution of pericarditis. I think there is a risk that this disease will be underdiagnosed, especially in cases of viral attacks like Covid-19. It therefore seems important to me to communicate on the subject. A low rate of diagnoses leads to poor patient care, on the one hand, and a lack of resources to support medical research on this disease, on the other.
These descriptions may help some people recognize themselves and feel less alone in their fight against the disease.
So, here's my take... for what it's worth!
WARNING!
• Always consult a doctor if you experience any of these symptoms. Go to the emergency room of the nearest hospital if these symptoms appear suddenly.
• I can't take salicylates, so I don't take any painkillers and feel absolutely all the pain from my pericarditis.
• The inventory that I draw up here is based on my experience and my sole opinion.
• Reading the symptoms and their descriptions is likely to increase your anxiety. However, I try to provide as much useful information as possible. Know that this article exists and come back to it when needed. If so, read only the part that interests you.
• The good news is that I am still alive after 4 years despite all this pain. And I intend to get out of it. If I can do it, so can you! Courage to you!
1/ CLASSIC SYMPTOMS
“Acute pericarditis is an inflammatory pericardial syndrome, defined when at least two of the four following criteria are satisfied:
1. Chest pain, typically retrosternal, worsened in supine position and with deep inspiration, relieved in the upright position;
2. Pericardial friction rub (unfortunately this sign is present only in one third of all patients);
3. Typical electrocardiographic features, namely PR depression and diffuse concave ST segment elevation;
4. New onset or worsening pericardial effusion.”
(http://journals.seedmedicalpublishers.com/index.php/cmi/article/view/1339/1680)
That's all! If you do not meet the criteria, you are off protocol.
I'm just amazed by the number of cardiologists who have told me: "I have never seen pericarditis in 10 (or 15 or 20) years of my career". No diagnosis, no treatment. But also: administrative difficulties, medical gaslighting, medical wandering (what is the cause of the appearance, but also of the maintenance of pericarditis?), etc.
But if you plead your case in front of a doctor, know that he expects this description of the disease and nothing else. You have to fit in the boxes. This is the current medical system. Point.
2/ MY EXPERIENCE
2.0/ PREAMBLE
But wait! There is more!!!
Again, these are my personal opinions, not a medical diagnosis. Here are the pains I feel that I associate with recurrent pericarditis. Knowing that this pericarditis started 3 weeks after contracting a virus in the spring of 2018 (in the midst of a SARS epidemic which is similar to the coronavirus we currently know) having reached my lungs without leaving any sequelae and is probably maintained because of a pre-existing Lyme disease infection. This means that there is probably more than just pericarditis. Indeed, we are now learning that Covid-19 leaves sequelae to the heart and blood vessels. I do not have all the answers to my questions about the pain and the types of sequelae from which my global vascular system suffers. But I tell myself that my descriptions, some of which are corroborated by the experience of other patients suffering or having suffered from pericarditis, could help other patients who seek to understand what is happening to them.
I have a deep conviction that it is essential to write down and describe all pain. I give them names, which are personal to me and which of course have nothing scientific or medical about them.
Also, forgive me if I get sloppy on this post. This article represents a lot of frustration and suffering, and it is very painful for me to write it. The pain is both physical and psychological in an illness like the one I am going through. So, I apologize in advance if my rage for not healing faster shows through in my words. This rage is also part of my will to get out of it. So she's good, I think.
Last point: I can't take any painkillers and I'm intolerant to salicylates (which attack my inner ears, giving me dizziness, tinnitus and deafness). So I feel absolutely all of these pains and this is the reason why I am able to describe them in detail. I don't wish anyone to have to live a single day of such an existence.
2.1/ CHEST PAIN
Chest pain when lying on your back (dorsal decubitus as doctors say) and which decreases when you straighten up or when you lean forward.
I actually felt the characteristic chest pains of pericarditis as described in the medical literature, during the first 2 months of the disease. Then, the pains became much stronger, even violent, continuous and unpredictable.
Doctors think that if you are lying on your back on their exam table, you must be in pain if you have pericarditis. Now, I don't know if it's the adrenaline needed to face a medical examination or something else, but that's not how it works.
However, this description is still important to keep in mind in general advice for managing pericarditis. See in particular my post on this blog on which position to adopt to sleep. Never compress your heart.
2.2/ THORACIC COMPRESSION
I distinguish chest pain from chest compression because I think that while painkillers can make the pain disappear, they do not prevent you from feeling chest compression, this feeling that the heart is caught in a vice, which never goes away. It sometimes prevents walking, especially uphill. Nevertheless, I never stopped walking daily, even in very small steps, even just 10-15 minutes (see the article “The Promise”).
The chest compression remains even if the pain decreases. It is not necessarily proportional to the pain.
2.3/ HEART ON FIRE
The feeling that the heart is on fire is a type of crisis that occurs either lying on my back or after a violent effort (for example, when a doctor asked me to do a cardiac revalidation and I followed his advice… for 2 sessions). The crisis can last a few hours to a few days. We really have the impression of having a ball of fire in place of the heart. Rest and calm are necessary to stop this kind of crisis. I advise against cardiac revalidation. Maintaining the heart at a rate exceeding 100 beats per minute can have serious consequences (risk of aggravation or even tamponade, risk of thickening and hardening of the pericardium or even constrictive pericarditis). In this, I follow the recommendations of the Cleveland Clinic specializing in pericarditis and of Doctor Allan Klein.
2.4/ BURNS
At a later stage of the disease, burning sensations may manifest more on the lower part of the pericardium. I personally associate them with a sign of healing and favorable evolution if they are not linked to a particular effort. I don't know if that's true, but it calms my anxieties. It usually does not last more than 3 days in intermittent attacks. My pericarditis is progressing positively, and I still feel these burns from time to time. The pericarditis feels like it is going downward, as if it is gradually going away. I therefore associate these pains with a positive aspect of healing. See also point 2.10.
2.5/ TACHYCARDIA
Tachycardia is a heart rate that is too fast in relation to the effort produced. A normal resting rate is between 60 and 80 beats per minute. At first, my heartbeat was going up between 140 and 160 even at rest, and my blood pressure was way too high. The only way to bring them down was to take a beta blocker. I give more explanations in the post I dedicated to tachycardia.
2.6/ JERKING AND EXTRASYSTOLES PAIN
Among the worst heart pains that one can experience, there are jerking pains due to extrasystoles. With pericarditis, extrasystoles are extremely painful. It really feels like a heart attack. The main symptom is the feeling that a heartbeat is missing, and you can see a variation on the oximeter trace. I had extrasystole attacks for a very long time. During the day, but also when falling asleep. This is why it is very important to avoid any compression of the heart (see my blogpost on how to sleep). I take Co-enzyme Q10 (ubiquinol) which allows me to control the crises of extrasystoles. As soon as I lower the Co-Q10, the seizures resume (I talk about it in my blogpost on tachycardia).
2.7/ PERICARDIUM SPIKE
What I call "pericardium spike" (nothing scientific about that name) is a very sharp, constant pain located above the chest about 3 cm from the middle of the rib cage. This is typically where the cardiologist begins an ultrasound. This seems to be the place he is looking for to start his exam, and it hurts a lot when he presses there!!! A torture! I don't know what it is, if it's the junction of an artery with the heart and the pericardium hurts particularly there, or if it's due to other damage possibly caused by SARS 2018. The pain appeared very suddenly, literally like a stake that would have pierced my heart from side to side until it came out in my back. She hasn't left me since. It gradually decreases, especially after each phase of pain or burning in the lower pericardium.
2.8/ PAIN IN LEFT ARM, LEFT SHOULDER, LEFT SIDE OF NECK
Shooting pains in the left arm, left shoulder and left side of the neck are typical pains of myocardial infarction. If you feel them, go to the emergency room of the nearest hospital. As part of my pericarditis, I had this type of very painful and impressive attacks. Usually, the crisis lasts about ten minutes, provided you stop the effort immediately. I lie down directly on the ground and I stay motionless for the necessary time, trying to breathe as calmly as possible. As I often say, the good news is that I'm still alive. Currently, I have milder pain in my neck and left shoulder. This seems to be part of the pain at the end of pericarditis (according to the testimony I was able to collect), just like feeling your heartbeat (see point 2.11).
2.9/ BACK PAIN
Pains, such as a point in the back at the level of the heart, can occur, sometimes during an effort (a walk, for example), sometimes in a constant way. Rest can calm this type of crisis. I often take naps when these pains are present. They can also be the sign of peripheral tensions. I talk about these pains in a post on manual therapies. About every two months, I do a MOTIO therapy session to deeply relax all the muscles. Other manual therapies can be useful to reduce pain, such as shiatsu.
2.10/ PAIN IN THE LOWER PERICARDIUM AND UNDER THE LEFT ARM, WITH OR WITHOUT INTERCOSTAL NEURALGIA
I associate pinching or burning in the lower pericardium with pain synonymous with healing because it is usually accompanied by a decrease in pain at the pericardium spike, followed by a slight general improvement. "Looks like it's going downward" is a phrase that was said to me right off the bat by someone who suffered with pericarditis for 7.5 years. They are often accompanied by pain under the left arm, as if there were a slight inflammation of the glands under the arm. The same person had told me that he thought the virus remained lodged in the glands under the left arm and could reactivate. I don't know if his explanation is correct or not. I sometimes feel like the immune system kicks in to speed healing in a spurt or phase. These pains in the lower pericardium are sometimes accompanied by intercostal neuralgia. These are sharp pains located on the left side below the heart. They cannot be confused with pain in the pericardium, contrary to what some doctors seem to believe. It's very different. These are pains caused by the nerve endings. They are dazzling. We are breathless and we want to bend over backwards. But they are not dangerous. If the crisis is really bothersome, I take paracetamol and it goes away quickly. As my long descriptions show you, this is far from the worst that can be experienced with pericarditis.
2.11/ FEEL YOUR HEART BEATS
"You can still feel your heart beating for a very long time." Several people have told me this after pericarditis. It seems to be one of the last symptoms that still lasts for a very long time, with extreme fatigue. It's not a pleasant feeling. It's not like before. Feeling the beating of your heart after pericarditis or before is not the same thing because there is a feeling of oppression of the heart. It is painful and unpleasant.
2.12/ ANTS OR PULSES IN THE LEGS
Difficult to describe this feeling of ants in the legs, or rather of heart which beats in the legs. It is usually accompanied by other symptoms in the heart itself (pain, rhythm problems). I went to the emergency room with this type of pain. They found nothing special or particularly dangerous. These crises are often associated with a period of high heat in summer, but not necessarily. Particularly annoying to fall asleep at night, they can last several days. I never had an explanation and they end up leaving. It's all about staying calm and not fueling your anxiety with worrying thoughts.
2.13/ BUTTERFLY
Another type of seizures that I had more frequently. It is as if a butterfly were flapping its wings very quickly inside the heart. In general, I don't feel well (and by that I mean worse than usual), but I can't say why. I especially feel the butterfly when it stops for a moment, then starts again. This is what happens during these crises. I feel it when it stops and starts again. Again, no explanation. Rest and wait for it to pass.
2.14/ THICKENING OF THE PERICARDIAL MEMBRANE
Apparently, this is a very controversial topic in the medical community. Following the inflammation (called pericarditis), there is a thickening of the pericardial membrane. Which seems logical for an inflammation or if there is water between the membranes. As far as I know, the medical literature states that from 3 mm, there is reason to conclude that there is pericarditis, but that some people have a 3 mm pericardium and do not have pericarditis. You should know that only a cardiac MRI can measure the thickness of the pericardium. An ultrasound is not enough. And then the MRI must be correctly interpreted by the doctor. The problem is that we generally do not have a point of comparison for this examination. No one has their pericardium measured unless they are sick and suspect pericarditis. It is therefore impossible to know what the normal size of one's own pericardium is. The problems arise when the doctor finds that the cardiac MRI reveals a 3 mm pericardium, but maintains, despite the patient's pains and complaints, that it is not pericarditis because "some” have a 3 mm pericardium and do not have pericarditis. I assume, for my part, that the size of the heart and the thickness of the pericardium are proportional to the physique of the person. A big guy who doesn't feel sick and has no symptoms of pericarditis could have a 3 mm pericardium with no problem. From there to conclude that a woman with a small heart and who complains of pain typical of pericarditis, does not have pericarditis because her pericardium is "only" 3 mm, there is a step that should not be crossed and which is called medical gaslighting. As few clinical studies are done with women, general standards are determined on the basis of male standards, which can lead to diagnostic errors and excessive drug prescriptions. Always stay vigilant! Moreover, we still know little about viruses and bacteria and their ability to destroy tissues, including those of the heart, arteries and perhaps the pericardium!?
2.15/ FEVER AND INFLUENZA SYMPTOMS
For 2 years, I had a mild fever and permanent flu symptoms. These symptoms reappear during certain crises or in the event of excessive fatigue.
2.16/ DRY COUGH AND TIGHTNESS OF THE LUNGS
Following the viral attack at the beginning (SARS 2018), I coughed very hard for about 3 weeks. It was a very deep cough. Then, I kept a dry cough for 2 years. Like a recurring little cough, especially during extrasystole attacks, as if the pericardium was pulling on the lungs and the dry cough was a reaction to this tugging. At the current stage of my illness, I still occasionally have this little cough. For example, when I do the exercises I talk about in the next point.
2.17/ WEIRD SOUNDS
For 2 years, and while I have had pericarditis for 4 years, my body makes weird sounds when my torso rotates. When I inhale (without blocking the breath), while turning my upper body from right to left, my chest emits a friction noise. I ended up integrating chest rotation exercises at the end of my yoga/stretching session. I made a video and article about it that you can check out (Weird sounds).
3/ TO CONCLUDE
These pains are felt together, in combination, or separately. These are sometimes background pains felt permanently, or attacks that can last from 15 minutes to 2 hours, or sometimes 3 days.
The pains of pericarditis, in my experience, are fluctuating. And not at all constant and predictable as doctors seem to think.
They are always aggravated by stress and physical exertion. Avoiding stress and overexertion as much as possible, as well as keeping the heart rate below 100 beats per minute, are the best advice I have been able to apply.
And above all, if you suffer from pericarditis, remember: what is happening to you is not your fault!
UPDATE (JANUARY 2023)
New symptoms unlocked!!
2.18/ WALKING INTERMITTENTLY
I have noticed on several occasions that visiting a museum or grocery shopping causes major attacks of pain. They're like heart attacks (but I'm still alive, don't worry, I'm not writing to you from beyond!).
My condition has improved, and I can tolerate going for a walk on flat ground quite well. I walk like this every day between 3 and 5 kilometers.
On the other hand, the fact of walking intermittently, stopping very often, like in a museum or a supermarket, for some reason that I cannot explain, leads to pain attacks. Especially when I have to stand still.
Recently, I visited a museum again, but this time I tested the use of a folding seat to read the explanations and comments in order to limit my efforts as much as possible. And it worked. I haven't had such sharp attacks of pain, even if it really exhausted me.
For more details, read my blog post FOLDING SEAT.
LIFE IS NOT PERFECT. SHE MAKES IT WRONG SOMETIMES (ARNO).
Pericordially yours,
Vali