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Breathing Problems In ME/CFS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by AndrewB, Sep 19, 2011.

  1. AndrewB

    AndrewB Senior Member

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    Having read Prof Hoopers writings about the breathing problems he mentions that lung tissue in autopsy of people who had/died from ME related complications appears to be damaged, and that over all lung capacity is lower.
    I couldnt get anymore information than that though ?
    I thought it was related to the general fatigue of the bodies muscles, for examples, i get acute trouble breathing with i get an acute onset of debilitating fatigue, and i assumed this was because all my muscles were in a state of fatigue, including the ones i use to breathe.
    I also thought this was the reason ME patients feel like they cannot swallow, another symptom i get when in a crash/relapse state.
    Does anyone know anymore of this ?

    Thanks.

    Snapshot - 2.jpg
     
  2. justy

    justy Senior Member

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    Hi Andrew, im sorry but i dont know anything about this but i am interested as well in this. I have lung damage shown on a CT scan which i think is attribitable to numerous infections over the years. I guess it could be related to a low immune system, many people have an infectious onset that can be traced to a lung/chest infection. I suppose overall lung function could reduce as a result of deconditioning. I know that when i was weller i could swim and this really helped my lung fibrosis. Unfortunately i cant do this now and my lung problems such as breathlessness have increased.
     
  3. LaurelW

    LaurelW Senior Member

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    My doctor says that reactive airway is common in ME. I have had several really bad bronchitis episodes that lasted months, and started having asthma, which I never had before. It's tied directly to how exhausted I am.
     
  4. xchocoholic

    xchocoholic Senior Member

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    There are many reasons for restricted breathing. Allergies are the first thing to pop into my head. If you haven't already you may want to see your doctor to be evaluated.

    And it could be from hypoperfusion too. My breathing always becomes labored when I've been upright for too long.

    http://forums.phoenixrising.me/show...-CFS-POTS-leads-to-PENE&p=205932&posted=1#top

    FWIW .. I used to blame all my symptoms on fatigue until I started walking normally and realized that there was a neurological component to why my legs felt so heavy and tired. I'm not sure how it works but I know that gluten has been implicated in neurological problems ... you can google "theglutenfile" for more info.

    tc ... x

    ETA .. I forgot to add that I had chronic URIs when I first came down with ME/CFS and recent CAT showed lung scarring ...
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Yeah I've had relaly bad bronchitis several times since getting ME, and after it got bad about 11 years ago, I started having "tightness of breathing/chest" which gets worse on bad days
     
  6. AndrewB

    AndrewB Senior Member

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    It seems like im having a different kind of breathless feeling than some of you, actually moving my chest in order to breathe is whats causing the problems.
    If i was asked to take a deep breath i wouldnt be able too, and its more to do, or certainly feels like it, with my actual chest, not my lungs, if that makes any sense
    at all.
    And i only get this feeling when im fatigued.
     
  7. mellster

    mellster Marco

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    If you have pain while raising the chest and back down while having clear lungs, it can be Chostochondritis which is very common. If it's entirely not a pain, but exhaustion issue, then it's likely something else.
     
  8. AndrewB

    AndrewB Senior Member

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    no the lack of movement isnt specific to pain, i do get pain sometimes, but the majority of times when i get breathing trouble, its just a stiffness of the chest that stops my chest from inhaling and exhaling. i literally cannot move my chest, i have to take lots of shallow breaths.
     
  9. Athene

    Athene Never give up

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    That corset feeling round the chest, and also the sensation you are suffocating from lack of oxygen when actually you are taking deep breaths, are apparently both symptoms of chlamydia pneumonia.
    I know quite a lot of us PWCs have this infection, it is insidious and becomes chronic easily, especially in people with poor immune systems.
    I have been taking antibiotics for this for months on end BTW and it still hasn't gone yet. I mean to persist though. That suffocating feeling is so awful.

    My doctor prescribed me and oxygen tank a while back which I used for 20 mins every day (or more if I needed to) and that helped amazingly.
    I got rid of it a while back because I hadn't needed it for quite a while. I suppose that means I am making progress, albeit very slowly.
     
  10. mellster

    mellster Marco

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    Athene, interesting info - I had elevated Igg for cp but not too much and it went down a bit since the first detection, but I wonder if that's a flare-up when I feel like that though I have been improving. Again. it would be great to know what Igg dilution titers for cp should be of concern (igm was negative). I think initially I had 1:128 (no infection is 1:16), last time it was 1:64. thx & cheers
     
  11. floydguy

    floydguy Senior Member

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    I definitely have breathing issues but it's unclear as to what's going on. I have very shallow breathing and struggle to breathe - but no gasping or anything like that. I also have paradoxical breathing and moderate to severe sleep apnea. Interesting comments, helpful info. I've wanted to try oxygen but haven't gotten there yet. It would seem likely that I have some infection going on in my chest.
     
  12. Francelle

    Francelle Senior Member

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    Lots of good possibilities have been suggested:

    Costochondritis and Pleuritic pain cause sharp acute pain
    Anaemia can cause breathlessness
    Infections such Chlamydia and Mycoplasma Pneumonia cause breathlessness and massive restriction of the chest wall in breathing.
    COPD conditions such as Emphysema, Asthma, Bronchiectasis etc
    However I reckon something about the fatigue associated with M.E. causes breathlessness. Whether this has to do with orthostatic intolerance, rapid heartbeat or mitochondrial failure is anyone's guess.
     
  13. mellster

    mellster Marco

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    Chronic Chostochondritis (as in FM) doesn't need to cause sharp acute pain but often causes deep burning constant ache/pain and some tightness as well - but it's probably ME related.
     
  14. Athene

    Athene Never give up

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  15. mellster

    mellster Marco

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    Athene, thanks so much. I get severely congested out of the blue (sinus and lungs) during the day and have tested negative for most allergies and do not believe this is allergic asthma. I have no shortness of breath but during these spells I feel like I have a good sinusitis or chest infection. Sinus swabs were so far negative. I wonder if chronic CP can cause these atypical symptoms and have started vaporizing glutathione since I am not on any meds for it.
     
  16. Athene

    Athene Never give up

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    Hi Mellster,
    Sinusitis is a typical - probably the main - symptom of CP. You don't necessarily get shortness of breath - I don't most of the time.
    I tested neg for CP the first time then positive the second. I think the more times you repeat the test the more likely the probability of getting a postive if you do have it.
    Anothyer common symptom is chest pain, which doctors tell you is not angina though it definitely feels as if it is in your heart. It comes on mostly when the weather is stormy or changeable. This type of weather also makes my nose urt, which may or may not be connected with the sinusitis. It feels as if I have just been bashed on the bridge of the nose. Another horrible symptom is a horrible corset feeling round the chest that stops you inhaling fully.
     
  17. mellster

    mellster Marco

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    Wow - that is pretty much what I experience, thanks so much for the symptom description - why are these symptoms hardly mentioned on the Web? I have toured the doctors and so far it came out as you described it except for that nobody mentioned it could come from my elevated CP titers. What is your regimen for it? Apart from rest the only thing that really helps me is doing the CVAC therapy which ironically depletes you of oxygen temporarily while simulating steep and sharp drops and rises from and to high altitude (and the associated changes in pressure/temp), it gets the whole lymphatic system going and after the sessions I breathe completely freely - unfortunately it does not last although it's getting better. I have had success in treating many CFS symptoms, but the breathing/chest inflammation and the IBS are left and the hardest to resolve. Any advice on additional treatments greatly appreciated ;) Btw I started nebulizing glutathione and noticed a short-lived worsening of symptoms - I read it can induce apoptosis in CP so I wonder whether it's a die-off. Anyhow, this beast is so hard to treat that I am looking for more treatment options. cheers
     
  18. Athene

    Athene Never give up

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    Hi mellster,

    Firstly you need to make sure you get plenty of iron, because even mild anaemia (or borderline normal) allows it to flourish.

    I've never tried nebulising glutathione, but I have found that inhaling or squirting anything up my nose always makes it worse.

    You need to avoid humid places like the plague, don't go near the seaside especially in winter.

    All the supplemebts that boost your immune system are very important - zinc, and vits A, C and D are the most important for me.

    The most important treatment though, is truckloads of antibiotics. But you (and your doctor) have to be willing to persist for as long as it takes (I've nearly done a year now). This infection is REALLY hard to beat.

    I have never found a proper description of the symptoms online, and in fact cannot find much info about it at all, but when I went to the Lyme disease clinic there were other patients with CP and we all had the same symptoms, even on the same days - eg we all had chest pain on the same days, because it depended on the weather. I think many doctors forget about CP because the symptoms are either easily explained by other things (sinusitis) or easily dismissed as psychological (corset feeling round chest, pain in heart but there is no sign of the heart doing something wong). I think some of them know it is so hard to diagnose they don't even bother.
     
  19. mellster

    mellster Marco

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    Thanks Athene - I read about iron and it seems to be a mixed bag - I was borderline anemic with good iron levels but I have corrected that with B12 and cvac therapy and other stuff, but that explains the connection even more. I take most of the supplements you mentioned and anything that is even supposedly affecting CP plus LDN and other immune stimulants, but I am wary on ABx - I read about Zithromax being a good choice but I will prob hold off until I get a high reading from another test. I wonder if there is another non-invasive way to better measure, is there a breathing test or surface tissue biopsy test for it? My serum value has come down to 1:64 IGG and no IGA/IGM so that's good but I know that this is not always accurate. One more question regarding exercise - is there any recommendation from docs that actually know something about chronic CP regarding exercise and/or what is your personal opinion/experience? I have been doing better lately (mornings are usually worst - why?) but am unsure on exercise as it has given me mixed results. Also I assume you would recommend to not take any steroids at all due to their immuno-suppressant activity - I hardly ever took the inhaler but sometimes I take a nasal steroid spray which seems to help a bit. Thanks so much for the dialog and sorry for hijacking this thread, hope AndrewB finds the CP info useful as well :)
     
  20. meandthecat

    meandthecat

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    omeprazole, a bit random

    I was having real problems breathing, doing anything got me breathless. Needless to say the docs couldn't find anything. My GP suggested omeprazole, I had no awareness of any reflux issues but I'll give most things a try so I did. It took about 2 weeks of feeling a little less clogged up then my upper chest opened like peeling apart a wet bag. I realised that I could Breathe again. That was great, the next 2 days of burning chest pain so bad I couldn't sleep or even lie down, wasn't.

    3 Months on I can still breathe. Breathing is great. Now I just have to get off omeprazole!
     

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