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Myocarditis recovery
I am a 48 yr old male who was diagnoised with viral myocarditis 4 months ago. My EF at one point was 12% but has since been 49% to 65%. I have always been very active, a non-smoker, non-drinker, no history of high BP or heart disease, which the doctors attributed my thus-far recovery to. At present time I am on Coreg CR, sivastatin, 81 mg. aspirin and 3000 mg of fish oil. I was following a low-salt diet at the advice of my doctors but have since been instructed to increase my daily salt intake. I have had a echocardiogram w/bubble test, stress test, several ultrasounds with results indicating that a heart cath is not necessary at this time. My questions are 1. Has anyone experienced skin sensitivity around the heart area? 2. Muscle and joint discomfort? 3. Does anyone know what a normal recovery time is?
Any help or suggestions will be appreciated.
Any help or suggestions will be appreciated.
I have the same symptoms as you two months out. My EF is 55-60 and echo is normal. The burning is relentless at times. What else have they said?
Hi All -
Thought I would add some perspective to this thread. I was diagnosed with myocarditis in June 2011, which followed a few days of a viral infection. Like you Climber86 I am have lived a very active lifestyle in the canadian rockies, which included working and playing hard. Pretty fit with similar resting heart rate and BP.
I spent a week in hospital. After MRI the determination was minor damage/scarring to the muscle, and LV function was presumably lower than normal (55%) -- as I had no baseline the assumption was based on my active lifestyle and and general condition relative to age (40) my LV function should be in the 65-70% range.
I was off work and focused on all-around health (emotional/spiritual/psychological/physical). Dealing with all of these aspects was important for me to address the uncertainties you refer too.
After about 7 weeks I was feeling quite good and because this was in the range of recovery (6-8 weeks) of the average myocarditis case I went back to work. After a few weeks my health deteriorated and MRI confirmed that the inflammation was still present and my LV function had gone below 50%. At this point they deemed my case to be persistent/autoimmune. I was fortunate enough a couple of months later to take part in a drug trial through the UofC/Foothills. In short 30 days of immunosuppressant. This was deemed successful a short period after the trial was finished based anecdotally on my daily symptoms ceasing, and several weeks later confirmed by a positive MRI (inflammation gone).
I had several months symptom free after this, which saw me return to 90% of my former intensity for various physical activities. Rest and diet are still very important. I have been pretty sensitive to stimulants (caffeine.. ohhh dear espresso), and toxins (alcohol... ohhh dear beer).
Unfortunately, I have had a reoccurrence of symptoms in the last five weeks (for me -- daily chest pain related to 'I don't know', and lightheadedness specifically after physical activity). Certainly I feel acute chest pain following stressful experiences, and more ambiguous chest pains related to probably a combination of things.
I was informed by my cardiologist that based on the small number of patients he has had with persistent myocarditis similar to my case that expecting occasional symptoms for up to two years is possible. As there is little to no measurement on this he was reluctant to attribute a cause.
All this and he still believes I will recover 100%. Arguably, I should be resting more still and have dialed back my activities and tried to increase my rest since the return of symptoms.
The positive; full recovery is possible. The negative; it is a very ambiguos disease and requires a great deal of patience.
All the best in your recovery!
J.E.T.
Thought I would add some perspective to this thread. I was diagnosed with myocarditis in June 2011, which followed a few days of a viral infection. Like you Climber86 I am have lived a very active lifestyle in the canadian rockies, which included working and playing hard. Pretty fit with similar resting heart rate and BP.
I spent a week in hospital. After MRI the determination was minor damage/scarring to the muscle, and LV function was presumably lower than normal (55%) -- as I had no baseline the assumption was based on my active lifestyle and and general condition relative to age (40) my LV function should be in the 65-70% range.
I was off work and focused on all-around health (emotional/spiritual/psychological/physical). Dealing with all of these aspects was important for me to address the uncertainties you refer too.
After about 7 weeks I was feeling quite good and because this was in the range of recovery (6-8 weeks) of the average myocarditis case I went back to work. After a few weeks my health deteriorated and MRI confirmed that the inflammation was still present and my LV function had gone below 50%. At this point they deemed my case to be persistent/autoimmune. I was fortunate enough a couple of months later to take part in a drug trial through the UofC/Foothills. In short 30 days of immunosuppressant. This was deemed successful a short period after the trial was finished based anecdotally on my daily symptoms ceasing, and several weeks later confirmed by a positive MRI (inflammation gone).
I had several months symptom free after this, which saw me return to 90% of my former intensity for various physical activities. Rest and diet are still very important. I have been pretty sensitive to stimulants (caffeine.. ohhh dear espresso), and toxins (alcohol... ohhh dear beer).
Unfortunately, I have had a reoccurrence of symptoms in the last five weeks (for me -- daily chest pain related to 'I don't know', and lightheadedness specifically after physical activity). Certainly I feel acute chest pain following stressful experiences, and more ambiguous chest pains related to probably a combination of things.
I was informed by my cardiologist that based on the small number of patients he has had with persistent myocarditis similar to my case that expecting occasional symptoms for up to two years is possible. As there is little to no measurement on this he was reluctant to attribute a cause.
All this and he still believes I will recover 100%. Arguably, I should be resting more still and have dialed back my activities and tried to increase my rest since the return of symptoms.
The positive; full recovery is possible. The negative; it is a very ambiguos disease and requires a great deal of patience.
All the best in your recovery!
J.E.T.
WOW! I've been doing some research on this as I was just diagnosed with Myocarditis and Pericarditis and I ended up in the hospital for 4 days. I'm a 26 y/o male and in the best shape of my life and all of a sudden BOOM heart and chest pain that radiated to my arm, felt horrible! I've only had this for 5-6 days now and I'm pretty sure its viral because i was having flu like symptoms before the onset. I'm really having problems coming to terms with this and I dont know what to do, I feel utterly helpless. I also smoke pot and the main mold (if any) would be Aspergillus which also causes Myocarditis, or could. I'm an avid rock climber and I don't know if i will be able to go back to that. My doctors prescribed Colchicine for 3 months and said about 10-20% chance of it recurring after 3 months of that medication. I'm also on an ACE inhibitor for life but not the BETA blocker because my resting heart rate is low 50's and my blood pressure is consistently 110/70 ish which is all really good.
I'm wondering about the recovery time and whether I will be able to get back to my lifestyle? I'm a very active person and always wanting to do things outdoors and what not. I'm optimistic but this kinda scares me. I still have this weird feeling in my throat, back, chest thing and its very annoying and I want it to go away. How long till that happens? I guess we're all in the same boat without really conclusive evidence or answers. If anyone hears anything please post. You can also contact me directly at elie_daher***@**** if you have any questions or just wanna chat for support, I know it helps. Take care of yourselves people and live life to the fullest!!!!
I'm wondering about the recovery time and whether I will be able to get back to my lifestyle? I'm a very active person and always wanting to do things outdoors and what not. I'm optimistic but this kinda scares me. I still have this weird feeling in my throat, back, chest thing and its very annoying and I want it to go away. How long till that happens? I guess we're all in the same boat without really conclusive evidence or answers. If anyone hears anything please post. You can also contact me directly at elie_daher***@**** if you have any questions or just wanna chat for support, I know it helps. Take care of yourselves people and live life to the fullest!!!!
Thanks for posting this, I am a 27 year old female and have had myocarditis for 13 months (since May 2011) I admit to be very scared sometimes feeling hopeless, especially after reading things online which are yes^ worst case scenario. There are days when I'm hopeful and happy and there are days when I'm hopeless and cry lots. I have went through different symptoms, feeling burning tingling in chest around the heart, tingling and numbness in left arm, even sharp shooting pains in my heart area and a few times dizzyness. Last week I made the mistake of going for a bike ride and pushing myself too hard, I really felt unhealthy in my heart after that, feeling my pulse and I believe I was having arrythmias. I laid in bed for a few days. I am really trying to focus on my health, I talked to a man at the health food store who also has a heart condition and he reccomended Goji berry juice (super food very beneficial to the blood and heart) I am starting to take that along with b complex vitamins, Camu Camu berry powder (very high in vitamin c), a heart strengthening herbal tincture, omega 369 and a homeopathic doctor reccomended lots of leafy greens and lots of water. I am starting to pray with sage or sweetgrass daily and need to keep the belief strong that I will heal and recover from this. I am a single parent and need to be here for my 3 year old, there is so much more I want to do in life. My last echocardiogram and MRI was done over 6 months ago and the cardiologist I was seeing said there was no significant damage to my heart and that it was good. I have had many symptoms since then and am praying things have not changed. It's weird the cardiologist just said to follow up with my doctor and I haven't seen him since so I have no idea how my heart is now so I'm going to go for another Echocardiogram ASAP. To some it may sound crazy but I really believe in natural medicine and that mother nature has all the healing answers, not the pharmaceutical industry as they try to have us believe. I was prescribed Colchacine and stopped taking it a few months ago as it was draining all my energy and worst side effect is dementia, wow why would I even be prescribed this ? I am thinking if traveling to south America to find a traditional shamanic healer, so I am trying to save up for this so that I can go hopefully by fall. I am glad to read that healing can even take 2.5 years ^, that gives me more hope. If anyone wants to email me personally it's tigerlilly_sunset***@****
Have you been tested for lupus? Lupus causes muscle and joint pain, especially joint pain. It is also an underlying precipitator to myocarditis.
How long did it to take you to be back to live and work like you before having this illness?
**Disclaimer: I am not a doctor. The following information shared is based on the research I conducted, conversations with my doctor and physical therapist, and my own experience. Consult your physician.**
I read these comments a while back, but I did not have a chacne to respond. At this point, it is hopeful that you are well and back to normal, but for anyone else who might hit this blog I will post what I found out. I too was diagnosed with Myocarditis. I also am a 30 year old otherwise healthy male with no history of previous conditions. That is unfortunately the norm for this condition, unless you have an auto immune disorder. There is a series of different ways you may have contracted this virus; from being exposed to various chemicals to a nasty cold. If you want to know you should ask your doctor and he or she MAY be able to tell you but there is also the chance that you will never know how you contracted the virus. If you are feeling anxiety this is normal, about 30% of people who have Myocarditis have anxiety (according to my doctor). If you are experiencing this talk to your doctor or go see a physical therapist and either can help you get through this tough point and try to remember that you have myocarditis, it does not have you. The recovery rate that I found was that 80-85% of patients make a full recovery (it could possibly be higher because some people don't go to the hospital and are not diagnosed). The recovery time significantly varies from person to person and depends on the severity of the virus you caught. In my case, I will be monitored by a cardiologist for at least 1 year and maybe as long as 2 to 2 1/2 years. It is possible to become a hypochondriac but as time goes on and you return to your regular routine this will subside. Make sure that you ask your doctor what the possible side effects of your medication might be. Unless you need a transplant or have a very extreme case of myocarditis stay away from some of the sites on the web, they will only freak you out because they are worst case scenario. Hope this helps!!!!
I read these comments a while back, but I did not have a chacne to respond. At this point, it is hopeful that you are well and back to normal, but for anyone else who might hit this blog I will post what I found out. I too was diagnosed with Myocarditis. I also am a 30 year old otherwise healthy male with no history of previous conditions. That is unfortunately the norm for this condition, unless you have an auto immune disorder. There is a series of different ways you may have contracted this virus; from being exposed to various chemicals to a nasty cold. If you want to know you should ask your doctor and he or she MAY be able to tell you but there is also the chance that you will never know how you contracted the virus. If you are feeling anxiety this is normal, about 30% of people who have Myocarditis have anxiety (according to my doctor). If you are experiencing this talk to your doctor or go see a physical therapist and either can help you get through this tough point and try to remember that you have myocarditis, it does not have you. The recovery rate that I found was that 80-85% of patients make a full recovery (it could possibly be higher because some people don't go to the hospital and are not diagnosed). The recovery time significantly varies from person to person and depends on the severity of the virus you caught. In my case, I will be monitored by a cardiologist for at least 1 year and maybe as long as 2 to 2 1/2 years. It is possible to become a hypochondriac but as time goes on and you return to your regular routine this will subside. Make sure that you ask your doctor what the possible side effects of your medication might be. Unless you need a transplant or have a very extreme case of myocarditis stay away from some of the sites on the web, they will only freak you out because they are worst case scenario. Hope this helps!!!!
R u still feeling those throat sensations? Because I have had myocarditis for 2 n a half months now and I get those same feelings in the neck and they come and go as well! Can I get some advice plz
I don't have answers to your questions; however, I have the same questions. I have been diagnosed wih viral myocarditis 3 1/2 months ago. No previous heart disease history or any medical history whatsoever. I'm a 26 year old healthy female. I have had a follow up echo 1/2 a month ago and my EF is at 55%. But I still experience discomfort around my chest, neck area. It feels like a burning/crawling sensation. And sometimes it spreads down to my arms. My cardiologist says that everything checked out fine and I have recovered completely, but this sensation is jus bothering me. I get anxious over it everytime it comes on. It just kind of comes and goes. And on top of this I experience aches in my arms/shoulders area. I wonder if I'm still recovering from this although my echo is fine.
Your right about the use of antibiotics, but its unlikely the infections was is just viral as they did not ID exactly what it was:
Its like going to the doc with a complaint; and he says there`s a lot of it about..
Its likely your infections contains both aspects.
Both viral and bacterial. Many blood test the lab, are inconclusive.
The salt and the roll it play`s in fluid retention has been mismatched.
Some lab person 10/20years ago misinterpreted what he saw. If you put your magnesium levels up your sodium level will fall without reducing the intake.
While sodium levels appear high or normal in the blood the metabolic shift in the tissue means the sodium is in fact low, not high.
Many of the blood tests really need a loading test to see what the biochemistries upto.
That means salt or another chemical is added vire a vein a sample is taken before and then after the chemical is added..
If the sodium level remains unchanged its likely the tissue has not enough sodium.
It may even start to fall as the body tries to replace its missing elements..
It has to be counter balanced with other parts of the chemistry as well.
Hence its too time consuming in most cases. So it ends up "one rule fits all."
Most docs are not up on biochemistry anyway.
As for the pain in the heart area: The heart is a muscle; as the doc says its muscle strain in a way it probably is. Only its being referred to the surface of the skin.
Like the brain does not feel pain.. But you get a headache.
Its when you get pain down the arms and up the neck you know somethings possibily up... Maybe rubbing the chest with liniment or arnica, that then will be absorbed through the skin into the nerves and back to the heart...
Manuka honey in oil could be rubbed anywhere on the skin: To bloost your immunity or
take the honey.. You need to look at antioxdence vit C, E fish oil.
You got the infection because your immune system was over loaded.
Its like going to the doc with a complaint; and he says there`s a lot of it about..
Its likely your infections contains both aspects.
Both viral and bacterial. Many blood test the lab, are inconclusive.
The salt and the roll it play`s in fluid retention has been mismatched.
Some lab person 10/20years ago misinterpreted what he saw. If you put your magnesium levels up your sodium level will fall without reducing the intake.
While sodium levels appear high or normal in the blood the metabolic shift in the tissue means the sodium is in fact low, not high.
Many of the blood tests really need a loading test to see what the biochemistries upto.
That means salt or another chemical is added vire a vein a sample is taken before and then after the chemical is added..
If the sodium level remains unchanged its likely the tissue has not enough sodium.
It may even start to fall as the body tries to replace its missing elements..
It has to be counter balanced with other parts of the chemistry as well.
Hence its too time consuming in most cases. So it ends up "one rule fits all."
Most docs are not up on biochemistry anyway.
As for the pain in the heart area: The heart is a muscle; as the doc says its muscle strain in a way it probably is. Only its being referred to the surface of the skin.
Like the brain does not feel pain.. But you get a headache.
Its when you get pain down the arms and up the neck you know somethings possibily up... Maybe rubbing the chest with liniment or arnica, that then will be absorbed through the skin into the nerves and back to the heart...
Manuka honey in oil could be rubbed anywhere on the skin: To bloost your immunity or
take the honey.. You need to look at antioxdence vit C, E fish oil.
You got the infection because your immune system was over loaded.
Low salt is beneficial to the body in general to reduce water retention, thus helping the heart that has been attacked with a virus, not have to work as hard at pumping, along with beta blockers, etc. This allows the heart to "heal". Since it was viral, antibiotics won't help. Right now, he is on Coreg, Simvastatin, aspirin, fish oil. Appreciate the suggestions.
Not myocaritis but Lyme which can effect the heart..
Your saying too much fluid round the heart the low salt was supposed to help that?
I would thought it was really the infection causing the fluid.
IV antibiotics and diretics would of been a better choice.
Homeopathic Belladona might be a thought.
Can you take asprin? Short term for a few weeks or Willow bark to help the blood.
Long term use might result in digestive bleeding..
Your saying too much fluid round the heart the low salt was supposed to help that?
I would thought it was really the infection causing the fluid.
IV antibiotics and diretics would of been a better choice.
Homeopathic Belladona might be a thought.
Can you take asprin? Short term for a few weeks or Willow bark to help the blood.
Long term use might result in digestive bleeding..
Tests were inconclusive as to what type infection caused the virsus. Best guess was a Cosaki "B"(know its spelled wrong) which there are hundreds of. I'm sure the low-salt diet was/is for deterring water retention in the body which makes the heart have to work harder. Have you had any experience with myocarditis?
thanks for your response
thanks for your response
Did the doc tell you what infection it was?
Just a thought Lyme Disease effects the nerves eg you become electrosensitive.
Cutting back on salt is a misnomer that so many conventional doctors have got into a grove. Someone somewhere found there was too much salt in the blood of heart patients without knowing enough about biochemistry.
Salt or sodium gets precipertated out in the blood; in otherwords a metabolic shift occurs. Whereas in truth it magnesium levels that are low hence the salt comes out of solution. Something to do with basic chemistry.
Cutting back on salt may make it harder to fight infections as salt is an antiseptic.
Some Lyme experts are saying low salt intake may lead to more infections.
The blood and the tissue level are not always the same..
I would take a teaspoon of salt (rock) in water: A couple of times a day as an antiseptic
and incease foods containing magnesium cheese, bread suppliments.
Obviously keep an eye on your blood pressure. But its doubtful its the salt:
Just a thought Lyme Disease effects the nerves eg you become electrosensitive.
Cutting back on salt is a misnomer that so many conventional doctors have got into a grove. Someone somewhere found there was too much salt in the blood of heart patients without knowing enough about biochemistry.
Salt or sodium gets precipertated out in the blood; in otherwords a metabolic shift occurs. Whereas in truth it magnesium levels that are low hence the salt comes out of solution. Something to do with basic chemistry.
Cutting back on salt may make it harder to fight infections as salt is an antiseptic.
Some Lyme experts are saying low salt intake may lead to more infections.
The blood and the tissue level are not always the same..
I would take a teaspoon of salt (rock) in water: A couple of times a day as an antiseptic
and incease foods containing magnesium cheese, bread suppliments.
Obviously keep an eye on your blood pressure. But its doubtful its the salt:
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