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!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Breathing/Chest problems

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by surrealsyndrome, Jan 30, 2013.

  1. surrealsyndrome

    surrealsyndrome

    Messages:
    8
    Likes:
    0
    Has any one out there had or get serious breathing/chest complaints brought on by exertion,fatigue and even showering???Any feedback would be great
  2. Katherine

    Katherine

    Messages:
    72
    Likes:
    40
    UK
    Can you describe your chest complaints exactly?
  3. UWFgirl

    UWFgirl

    Messages:
    10
    Likes:
    1
    I've had shortness of breath that comes and goes for nearly 6 months. I don't have to do anything strenuous at all. It comes on when it wants to. no chest pain though.
  4. CBS

    CBS Senior Member

    Messages:
    1,362
    Likes:
    231
    Western US
    Shortness of Breath (SOB) is not uncommon amongst a subset of ME patients. There are a couple possible causes, one being nerve dysfunction (dysfunction may mean physical damage or an impair ability to function normally with little or no physical damage). Your vagus nerve controls your diaphragm, your heart rate, BP and digestion. Think very large nerve running through your torso controlling all of your autonomic functions. If you're having issues with these other functions, your could be dealing with dysautonomia. For me, a primary sign was that when I over did things and started to develop PEM like issues, my HR would drop pretty dramatically (into the 30-40 BPM range) and I'd feel very short of breath. My cardiologist had even suggested a pace maker (I'd worn a Holter monitor for a week and these episodes of bradycardia were not infrequent - HR of LE 50 BPM for 20-30% of every day).

    My neurologist suggested that my autonomic dysfunction was likely caused by a chronic CNS infection, most probably something in the herpes virus family. I've been on Valcyte now for over 18 months and the SOB is dramatically reduced, my cardiologist is, to put it mildly, shocked (no more talk of a pace maker) and I'm able to walk our dog in the local foothills several times a week for about 30-40 minutes without any significant SOB.

    I don't know if these symptoms fit your experience but aggressive treatment with an anti-viral (Valcyte) has made a very dramatic difference in my quality of life.

    Addressing fluid balance issues has also been key (but that's a very long topic all on it's own and most ME patients with fluid balance issues can get by with increased fluid and salt intake - low fluid volume may confuse the clinical picture as it causes a drop in BP and an increase in HR. Both dysautomonia and low fluid balance can occur simultaneously - and that's a bit of a mess/challenge to untangle clinically).

    Best of luck,

    Shane
    JAH, ahimsa and vli like this.
  5. Research 1st

    Research 1st

    Messages:
    65
    Likes:
    103
    Greetings surrealsyndrome.

    Shane gave some good advice and I'll branch out a little from this.

    Tracking down the cause of SOB can be difficult in the absence of obvious clues that general physicians are used to (lung disease, asthma, allergies etc) primarily because of the 'controversial' nature of ME and CFS that makes doctors automatically assume you aren't really sick and don't need tests! Patients can be told their cardio-respiratory abnormalities are psychological, especially if they are dysautonomic in nature. This is the most common complaint from people with POTS or ME as one part of a dysautonomic response involves the sympathetic nervous system is the same part of the nervous system involved in anxiety and panic attacks. Hence a person with dysatonomia can look like they are having a panic attack, or indeed have one, even if their 'mind' was never the culprit in the onset of symptoms. A cruel phenomena.

    Varying SOB in this illness without exertion or conversely post exertion is likely associated with immune system activation (e.g. cytokines as in asthma) and its influence and interaction on varying inflammatory/genetic factors we just cannot understand at the moment without more biomedical research into organic CFS ME research cohorts. The most easy explanation away from this, would be if you have repeated viral infections with this SOB, then it could be (in this phase), upper respiratory tract infection (URTI). These are very common in PWME.

    Exertional SOB, particularly fluctuating (good day vs bad day) when you don't feel as ''flu like'' would likely be mitochondrial dysfunction, autonomic dysfunction (as Shane mentioned) and possibly other factors such as low blood volume or dysfunction in vascular control of blood flow and deranged blood pressure responses. If your blood is pooling in your legs when you are upright, then your heart will race to compensate and stop you fainting. In these situations you can become 'decompensated' because your heart is beating too fast and not filling properly with blood, especially if the speed you breathe at remains normal.

    With dysautonomia it is very easy to get 'caught out' by tachycardia attacks and not realize this is why you might be having a simple SOB attack, breathing at a slow pace sitting calmly on a PC reading Facebook with a pulse of 150bpm (as you're unaware) will result in your body rapidly demanding more oxygen, as levels drop. Also taking too high dose a beta blocker for tachycardia can make people SOB, especially one's that aren't cardioselective (old fashioned drugs).

    Many PWME affected severely cannot hyperventilate like others because they have weakened diaphragmatic muscles, worsening this problem, when you actually do need to breath rapidly. You can ask other PWME affected severely what happens when they exercise, their normal rapid breathing they used to do automatically, doesn't happen and so they can become overwhelmed with cardiac symptoms and have to stop physical exercise immediately and sit down and try and recover. Very scary. Although this is central (brain) in nature, it is of course worsened by overwhelming physical exhaustion that affects the muscles. Breathing requires muscles and energy. People exhausted at the cellular level will have problems in this area and will be plagued by seemingly impossible to diagnose heart and lung problems. In the absence of conventional mitochondrial disease using a muscle biopsy it is hard to prove to anyone you are exhausted who doesn't believe you unless you are severely affected.

    SOB in the shower, especially as the hot water will worsen symptoms. Many with POTS and OI report having a shower or a bath is very challenging due to the fact the heat dilates blood vessels. (Hence PWME with dysautonomia cannot stand the summer and hot weather and can become much more disabled simply by changes in temperature).

    There are so many reasons for symptoms in ME, as so many things can go wrong with your body, you'll have to consider all the causes and pick the most sensible explanation to be honest.

    Without obvious infection signs, I'd go for dysautonomic response to exertion and of course, mitochondrial exhaustion if you're severely affected. SOB can plague people with POTS, including at rest. If able and you wish to do a bit of science, check your blood pressure and pulse rate next time you're SOB and calm (if possible).

    Before you do this, get checked out by a doctor to make sure you don't have a diagnosis they have missed and that can be treated. If SOB is serious and disabling and remains unexplained, people usually get a barrage of tests: echocardiogram, chest x-ray, lung function tests, 24hr ECG, 24hr blood pressure monitoring etc. (I'm sure a doctor would order these tests if they hadn't done them already and you report to them your concerns and symptoms).

    It can be potentially dangerous with any medical condition to assume one has a symptom that is down to the current illness, that could be something else entirely. I'm sure we've all done this as well as its only human nature to want to manage your illness yourself.

    Maybe write down your SOB pattern and severity, what brings it on, what alleviates it and show this to your doctor.
    I hope you feel better soon and get some answers.
  6. vli

    vli

    Messages:
    1,732
    Likes:
    1,785
    CA
    I think you hit the nail on the head there regarding CNS infection Shane, I wish I had hyour neuro!!!!!!
  7. Research 1st

    Research 1st

    Messages:
    65
    Likes:
    103
    If anyone suffers from unexplained severe orthostatic intolerance or suspected POTS who has ME CFS want to be assessed autonomically in a thorough manner you may consider asking your physician about the following tests to see what they think. Autonomic dysfunction non cardiovascular disease chest pain and ME CFS, often go hand in hand.

    Pre-tests usuallly performed:
    1. 12 lead ecg (This should be done before the tilt test for safety reasons to exclude undiagnosed adverse cardiac events occurring during a tilt procedure which nobody wants to happen). Sometimes a day long (24 hour) blood pressure test is also performed using a machine you wear around your neck and strap to your waist like an old Sony Walkman. (Holter monitor).

    2. simple laying/standing blood pressure and then an active stand. (standing on the spot rapidly after laying flat and calm for ten minutes or so). You get supported by staff when doing this, so it's safe if you fainted or went wobbly.

    Autonomic tests:

    1 a tilt test.Usually for 30 minutes or as long as the patient can tolerate it before requesting it ends, of they faint!
    2 assess sympathetic and parasympathetic tone and record.
    3 BP response to temperature challenge.
    4 measure your BP fluctuation to a Valsalva maneuver.
    5 observe visual changes of any discoloration in limbs (e.g. feet or hands turning purple from blood pooling).
    6 vasovagal syncope provocation during upright tilt including possible administration of Glyceryl trinitrate (GTN) spray if appropriate. The GTN is to try and see if your BP falls.
    7. meal provocation test.

    Do make sure for your own safety these tests are performed by a competent physician, ideally a cardiologist and in a hospital not a clinic without emergency support. Messing around with cardiovascular autonomic dysfunction to try and get a diagnosis is a serious and you want to be in safe hands should any untoward event occur.

    In my experience the rule of thumb is to exclude everything before settling for a diagnosis that involves breathing or chest problems, because these are life dependent bodily organs and you want to know, not think. but know you have the correct diagnosis and are under the correct area of medical supervision.
  8. Really timely post - my partner was just saying (as I logged onto the site) that I need to go see a pulmonologist because I spend a lot of time sighing, trying to catch my breath, having SOB at odd times, etc. But these aren't necessarily symptoms of lung dysfunction per se... anyone had any experience (good, bad or indifferent) going this route?
  9. surrealsyndrome

    surrealsyndrome

    Messages:
    8
    Likes:
    0
    Yeah fatigue can bring it on a bit but fatigue really just makes the affect worse.I get tightness and pressure on left side of chest centred around heart and cardio plexus,pulpitations,sharp stabbing pain on heart area when its bad and dull aching pain on heart area and my back on the same level when its real bad.I have to sleep on an air mattress cause most beds put pressure on my chest which causes a congested cant breathe deep enough feeling.Getting hit softly on the solar plexus and being huuged to tight puts a lot of pressure on my chest.Also having a shower brings on these symptoms real bad cause of temperature change I think.Ive also had spasms on cardio plexus and left side of chest.Id appreciate any suggestions of testing or thoughts from anyone
  10. surrealsyndrome

    surrealsyndrome

    Messages:
    8
    Likes:
    0
    Im in my mid twenties by the way.
  11. surrealsyndrome

    surrealsyndrome

    Messages:
    8
    Likes:
    0
    Hi Research thanks for responding and giving me some reference points to research.Mitochondria is something I will look more into cause its come up before in research.Autonomic dysfunction is an intresting one cause I had an eis scan done a few months back and it showed some dysfunction in the nervous syastem.Its taken me a while to get back to this post caause of lack of sleep,concentration,light sensitivity/eye strain but ive got some questions.Im not looking for a diagnoses but given my symptoms what does it look like to you.Aortic disection/dilation,mitral valve prolapse,cardiomyopathy??I definetly think the nervous systems at work here maybe dysautonomia causing damage to aorta,blood vessels thats sorta what I think.What tests would you recomend to rule out any damage to the cardiovascular system cause goning to ED and getting blood pressure,pulse,ecg done doesnt usually come up with anything partly cause it takes so long to get seen and im usually sitting done for 30 minutes before i get seen.How do you test for blood volume.In australia when your in your mid twentys with ME the doctors dont seem to do anything unless you demand it even when it seems logical.Ive been complaining to doctors for nearly 3 years about these symptoms and theve never once orderd me an mri or a ct scan.Thanks for replying
  12. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    Messages:
    67
    Likes:
    17
    UK
    I noticed that I couldn't do my deep breathing with meditation back in 2006 and it's gotten progressively worse and I get out of breath very quickly and easily. I had to halt a recent breathing test at hospital as the repetition made me nearly collapse. My X-ray showed reduced lung size on a previous one. I have to go for a CT scan.

    I have POTS and autonomic/peripheral dysfunction and EBV brought on the ME/CFS.

    I shower and bathe in warm water and try not to stay too long. The temperature rise will make me sick, weak and breathless so try to avoid heat.
    Last edited: Mar 20, 2014

See more popular forum discussions.

Share This Page