1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

My aching heart

Discussion in 'Pain and Inflammation' started by kday, Oct 3, 2010.

  1. kday

    kday Senior Member

    Messages:
    260
    Likes:
    48
    I don't have any chronic viruses as far as I know. Tested for about all infectious diseases they can test for.

    All that came back positive was Lyme disease and possible previous exposure to Rocky Mountain Spotted Fever (not active).

    I've made it a long way with Lyme treatment, but my heart isn't better. It's probably better than it was, but the chest pain never goes away.

    I found out that I have CFIDS/ME by a respected CFIDS doctor.

    I don't know what to do. I was told the chest pain was bacterial but I could not tolerate any of the antibiotics or even herbs they use for the infection bartonella. I never tested positive. I am quite afraid of the medications they use for bartonella from bad experiences.

    I also have severe anxiety, but it doesn't necessarily correlate to the amount of chest pain, and the chest pain doesn't necessarily correlate to the amount of anxiety. Taking tranquilizers often doesn't help the chest pain, but sometimes it can. The chest pain is usually better with my feet up, or lying down. A bit of orthostatic intolerance I guess. Oh, and something else doctors have trouble understanding: My anxiety is not caused by anything situational. It is purely physiological and neurological. It's been this way for a couple years, and nobody has ever changed my opinion from day 1. I know this for sure, and I hate that doctors still try to challenge me about this. Is it an ego problem, do they not want to believe me, or are they just poorly educated? I have tried many types of psychotherapy anyway, all unsuccessful. Some helped a tiny bit, and some made me worse (counselor pushing me to do more things).

    It's troubling finding a local doctor to take my concerns seriously. I feel like my heart is getting eaten away. I am 24 years old, and failed the VO2 bike test they use for CFS. I am in the 1 percentile.

    I want my heart back, and I am lost. No Lyme doctors around here anymore, but my treating doctor is trying.

    I don't believe CFS can cause my type of chronic chest pain and brutal anxiety. Don't get me wrong, my anxiety is actually a lot better than it used to be (and I can do things now), but my doctors have commented they have never seen anxiety as severe as mine in their career. That would make you feel special, wouldn't it? I never had anxiety in my life prior to getting ill.

    I am not getting herxes from Lyme treatment like I used to. I attribute part of the anxiety and chest pain to Lyme, but the other 50%+ must be from something else.

    I am now lost between Lyme and CFS. This combo sucks!

    Not sure if anyone could help me. The ER thought I had pericarditis last visit, but PCP says not true (I trust his judgement). He said they assumed that because of my clinical symptoms were pretty consistent with it and my C-Reactive Protein (inflammation) was elevated.
     
  2. wciarci

    wciarci Wenderella

    Messages:
    264
    Likes:
    0
    Connecticut
    Hello kday,

    It sounds like you are in quite a mess and my heart goes out to you. I would change some doctors, esp. because of the heart. Anxiety can be a symptom of heart issues (congestive heart failure), and I would seek other advice. Please go to Dr. Stephen Sinatra's website. CoQ10 and other supplements can help you greatly. I wish you well.

    Wendy
     
  3. sleepy237

    sleepy237 Senior Member

    Messages:
    246
    Likes:
    12
    Hell
    Does your chest hurt where the pain is when you press in on it with your finger. My cardiologist said I described three different types of chest pain and the one that is most consistent is caused by Costochondritis which is inflammation in the cartlidge which separates the ribs and it can mimic heart pain. The others come and go but through pressing and the pain reproducing I know when it is the costo acting up. I had treadmill and echo and both were normal. I also have anxiety and fear and can relate to how you might be feeling right now. Not good its like a bad dream. I think my CFS is more on the dysautonomia scale which also can cause chest pain and irregularities in blood pressure and heart rate. Hope things improve for you. Hugs x
     
  4. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    104
    England
    Chest pain isnt uncommon in M.E. (as well as the other associated cardiac event symptoms) but needs to be checked out - if it has been and nothign was found then you've done as much as you can and anxiety about it both isnt helpful and is probably not warrented - Ive had it off and on (so not chronic but persistent) for several years now- been checked out twice (once while it was occuring) and been told it's not cardiac (but no idea what it is) - so whilst it's inconvient, painful and quite disabling in itself I just treat it as yet another one of those things that pwME have to live with

    as for the anxiety - not sure I can help with that - in the first few years after onset when my brain was still learnign to cope with less resources than it wanted i spent a while thinking i was crazy, odd impossible things kept happening (as far as I was concerned), seizures - I got a little anxious on occasion (nothign like your describign tho) but as I'm male and we only have a limited toolkit available for such things I tried drink (took me ages to figure out that made me more ill as well as making things worse), ignoring it (never works but for some reason it's built into the male psyche as a primary coping mechanism for anythign we dont like), hitting people (male psyche's backup plan - if you cant hide from, ignore or run away from soemthign then it must be someone elses fault so hitting is next available option - especially if option 1 is still in play), isolation (which actually helped a bit but probably because it reduced my energy requirements) and finally quantum psychics (distraction technique - used all avalable brain power so it doesnt really matter what it was - just as long as it was fiendishly difficult on a mental level) - fairly sure i was clinically insane for a while a couple of times over that period and it's left it's scars

    so after that rather worrying diatribe my advice re the anxiety would seem to be find something to occupy yourself mentally that stretches you mentally - doesnt matter what it is as long as it takes over and displaces the anxiety
     
  5. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    I get a lot of chest pain to and it comes with non situational anxiety, but it's not what I would describe as normal anxiety, i'm not worried I just feel jumpy if that makes sense. My chest pain has changed over the years from sharping stabbing pain to now tight squeezing pain and it is directly related to what is going on with my heart at the time. I also get supra ventricular tachycardia (svt), tachycardia, missed heart beats and bradycardia (I had a 24hr holter monitor test done). Plus I have great trouble breathing and my arm and face go numb when i'm in a full on svt attack. The combination off all of them daily make me feel very tired, sleepy tired not me/cfs exhausted. For me it is the bradycardia and the svt that cause the chest pain, due to a lack of oxygen supply.

    Anyway I am in the process of going to a cardiologist and getting an echocardiagram to find out what else is happening. I have had me/cfs for 18 years, but my heart problems started 2 years before then and are getting worse than longer I have me/cfs. I have read up on a few heart conditions and there are several that come with non situational anxiety, svt is one of them, sick sinus syndrome is another, heart failure, mvp and a few others. Thyroid problems can also cause non situational anxiety and chest pain.

    I would strongly suggest going to see a cardiologist to get your heart thoroughly checked out. Heart problems can go hand in hand with me/cfs and can be quite serious in a few patients.

    I hope you get it sorted out soon :Retro smile:
     
  6. caledonia

    caledonia

    Messages:
    2,961
    Likes:
    1,559
    Cincinnati, OH, USA
    My heart started hurting after I tried to carefully detox with a FIR sauna. It hurt almost constantly for 2 years until I did chelation for lead and mercury.

    Anxiety in CFS can be from a dysregulated nervous system. Or you can have anxiety from chemical sensitivity. I have both. I'm on Zoloft for the dysregulation anxiety, and have found other treatments for the chemical sensitivity.

    The best one so far has been RichVank's methylation protocol, which builds glutathione in the liver, so you can handle toxins better.

    I still get the heart pains occasionally but they're generally mild.
     
  7. kday

    kday Senior Member

    Messages:
    260
    Likes:
    48
    I've been doing a methylation protocol more similar to Freddd's. I have had really good results and started detoxing like crazy (including a very high urine specific gravity and off-the-chart metals in my urine).

    25 mg of IM B12 daily. I had no benefit from Rich's protocol, and I only seem to respond to intramuscular injections (though I haven't tried the sinus ones or whatever they are promoting these days).

    I took a break for a week or so as I am sending in a test for pyroluria (a requirement is to stop all B vitamins and methylating substances). Poor methylation is probably part of the reason I feel bad, but I can somewhat detox on my own now (judging by urine color).

    When I started the methylation protocol my scalp got bumps all over it and peeled and my eyelashes drooped for a while. It was strange, but I felt better.

    It is known I have a dysregulated nervous system. I have no lunula's (half moons) on my fingers, but they do come back on my thumbs and (and occasionally on my middle finger) when using all those B's.

    Maybe the chest pain is from the dysregulated nervous system, but even so, it can be pretty severe. Angina like pain. Maybe a vasospasm somewhere near the heart?

    I've had a big workup (several times, in the ER, etc), and other than my inability to exercise, my EKG is always good. However, I do get tachycardia, SVTs, and have had bradycardia. When I have SVTs I am typically anxious, but I don't see how you couldn't be when your heart approaches 200 bpm. An anxiety state can probably trigger SVTs, but the question is, what is causing that anxiety state in the first place? Not me. I do think toxins are a part of it for sure as methylating lowers anxiety in my case.

    But with all that said, the pain seems different. It feels caustic and damaging. That doesn't mean it is, but that's what it feels like.

    I think I have been overworking myself as well. My grandma had a massive stroke, and I have been working hard to help rehab her every day. I seem to be good at it, but it drains all my energy very, very quickly, and I have pushed after my body said to stop.
     
  8. Rafael

    Rafael XMRV+ Member

    Messages:
    66
    Likes:
    1
    Ontario, Canada
    What you describe is very similar to my worst experiences.
    For me it was always exertion that made the heart pain and anxiety worse - a few hours afterwards.
    I did do the Mito tests and besides very low mito function and ... extremely high Free Cell DNA . This is DNA that is not inside the cell where it should be. I had levels higher than someone on Chemo. This made sense to me in describing my anxiety - as you said it was not was situational Search the forum for stuff on the Methylation cycle. Theory for my cause of anxiety => free cell Dna => caused by oxidative stress or gut inflammation => supplement antoxidants and minerals and make sure digestion working properly Probiotics/Digestive enzymes (do the De Meirler's affordable (<$35) Hydrogen Sulphide Urine test)
    My ME symptoms and my conditioning have gotten a lot better - and the heart pain and anxiety with them.
    It was a long haul but the things I think helped most
    -- finding the true "bottom" . a level of activity and exertion (no matter how low) that is sustainable (without too horrible symptoms)
    -- working up from there very very very gradually
    -- and sure detox as said above (I did diluted Hydrogen Peroxide (or Epsom salt) foot baths until I could tolerate saunas again)
    -- I switched to an anti-anxiety med Cymbalta thats is also marketed for Fibro and Diabetic neuro pain - I don't have either but the heart (and many other) pains subsided, I slept better, less anxiety => heal, happy.
     
  9. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    2
    Texas
    ii feel for you kday,a lot of us have heart issues. mine also aches, and flips and flops. i have done a holter about a year ago which picked up a few tachy & brady episodes.
    recently i started hurting really bad in the middle of my chest thru to my back and my left shoulder blade, the dr sent me to a cardiologist to do an echo..... say everything is Normal.
    my ekg's are always pretty much normal too, i have high titers to ebv, and hhv6. even tho they say things are normal,i don't know how one can feel so bad and not have anything wrong. i have a sneaking suspicion those viruses are messin with my Heart.

    gonna try some other supps (l-carnitine,ribose,mag glycinate,b12) im already taking coq10 and some fish oil.it helps a little, so maybe adding a few more will make the heart feel better.

    Have you tried any supps to support your heart??? also costo will make your heart area hurt. Just a thought, hope your feeling better soon!!

    Kat
     
  10. hupernikos

    hupernikos

    Messages:
    1
    Likes:
    0
    I also suffer from heart pain. I had several tests to rule out any problems and everything looked fine. What helps me is magnesium. I experimented with different types and amounts and the one that works best in my case is magnesium malate, 650-700 mg/day in divided doses.

    It takes the pain away completely. If I go more than a day without it, the pain comes back. It has also helped alleviate my irregular heartbeats and pounding. I still get tachycardia, especially if I'm up too long (POTS), but still, I'm happy to have one less thing to deal with!
     
  11. Athene

    Athene Never give up

    Messages:
    1,130
    Likes:
    151
    Italy
    I have had chest pain for years, sometimes so bad that I could not speak for the pain. Despite having a heart condition that eventually led to surgery, it was hard to get any doctor to take this seriously or believe how bad it was. Since having surgery, my heart is in very good shape, but the pain comes on exactly the same.

    My new, lovely Lyme doctor has said it is a symptom of chlamydia pneumonia. He said the symptoms will come on badly when the weather is changing, from high pressure to low pressure or vice versa, and since he said this I have been watching it and he is absolutely right. I have been on antibiotics for 4 weks so far and there has been a definite improvement.

    Have you been tested for Chlam Pneumonia? It is a very common co-infection with Lyme.
     
  12. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    hi kday don't know if this fits but might be worth investigating there are endochrine conditions such as pheochromacytoma and adrenal tumors that can cause insane amounts of anxiety and many cardiac manifestations, pheochromacytome is an endocrine tumour that secrets catacolomines which are the fight or flight hormones normaly released by adrenal glad, because the tumour is making far to many catacholamines it causes massive anxiety and has a seriously bad effect on the heart, if it is that it can be treated by removing the tumour. like i say not sure if it fit's but might be worth investigating. heres a link to article about it http://emedicine.medscape.com/article/124059-overview all the best
     

See more popular forum discussions.

Share This Page