August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

Shortness of breath/trouble breathing

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by xpeetzax, Apr 27, 2018.

  1. xpeetzax

    xpeetzax

    Messages:
    9
    Likes:
    13
    Hello,

    So I've been having frequent episodes of feeling "out of breath" and it's not necessarily the result of exertion. It tends to occur more often than not when I haven't eaten in 3+ hours and it occurs concurrently most times with a sensation of stuffiness in my chest, a bloated/gas feeling, palpitations, tingling in my arms/hands and fatigue/body aches/other CFS symptoms. The other symptoms are manageable but I have no answer when I get the shortness of breath...I feel like I am gasping for air but the air that I breathe is not replenishing my body. At times it gets so bad that I feel like I need to pass out or on the verge of passing out. Any suggestions as to how I can manage this?

    Thanks
     
    alkt likes this.
  2. Dechi

    Dechi Senior Member

    Messages:
    1,171
    Likes:
    2,254
    I’m sorry you’re having this, Do ypu have asthma ? Have you ruled out COPD ?

    I had a recent appointment with Dr Hyde eho had me tested for COPD because my shortness of breath was gettting worse. The tests came out okay. Dr Hyde explained to me that the ME was causing this and that the lungs were working fine, it’s the injury to the motor cortex in the brain that’s causing the problem. (I hope I’m using the right words because I have memory problems).

    If nothing else is found in your case, the same explaination would apply.
     
    alkt likes this.
  3. Runner5

    Runner5 Senior Member

    Messages:
    322
    Likes:
    532
    PNW
    Do you have GI issues?

    I do, loads, and sometimes I have trouble breathing, it's pressure from my stomach but it usually is followed up by vomiting or lots of belching though.
     
    alkt likes this.
  4. lnester7

    lnester7 Seven

    Messages:
    2,700
    Likes:
    3,929
    USA
    Check your heart rate when this happens ( do not lay
    Or sit) just as you are ( since you have Cfs, OI is a high probability)
     
    alkt likes this.
  5. lafarfelue

    lafarfelue Senior Member

    Messages:
    309
    Likes:
    881
    Australia
    Perhaps search for "air hunger" in these forums. There seem to be quite a few PwME who have this issue.

    I hope you can figure it/a solution out!
     
    alkt likes this.
  6. Judee

    Judee Senior Member

    Messages:
    251
    Likes:
    497
    Wisconsin
    Sometimes my air hunger gets worse if I am reacting to something I have eaten or something in the environment that has inflamed my lungs. Times like those, I take a high dose of vitamin A (25,000 IUs) from fish oil and that calms things down a bit. My Mom has COPD (24 hour oxygen) and uses the same and said it helps her tremendously. We don't take it every day or even every week -- just mostly for those days when we are having a hard time breathing.
     
    alkt likes this.
  7. PatJ

    PatJ Forum Support Assistant

    Messages:
    2,723
    Likes:
    7,513
    Canada
    Low blood sugar might be the cause in that case. A small amount of honey would quickly raise your blood sugar, then a small meal that contains protein, fat, and carbs would digest slowly to keep your blood sugar up until your next full meal.

    Those symptoms might be caused by lack of blood in your upper organs. What comes to mind is that the stuffiness could be from lack of blood in the lungs, a bloated feeling from blood pooling in your abdomen (and possibly in your legs), palpitations because your heart is trying to deal with poor blood circulation, tingling because you don't have enough blood (or oxygenated blood) in your arms, etc.

    Try lying down for awhile when this happens. Lying down should improve your blood circulation to your upper body and will hopefully reduce symptoms of orthostatic intolerance. If that helps, then compression socks, compression leggings, and/or an abdominal binder might help you to prevent the symptoms you described.
     
    ryan31337 and alkt like this.
  8. TenuousGrip

    TenuousGrip Senior Member

    Messages:
    291
    Likes:
    1,073
    With palpitations and SOB (Shortness Of Breath) I always feel like it's a good idea to at least suggest you be seen by a cardiologist.

    Drs. Lerner and Cheney (ME/CFS specialists) focused a lot on a subtype that they believed was based mostly on cardiac issues. Other researchers (including Miwa, in Japan) are still pursuing this.

    Best of luck !
     
    Judee, alkt, Sushi and 1 other person like this.
  9. alkt

    alkt Senior Member

    Messages:
    323
    Likes:
    640
    uk
    the air hunger you mention is also mentioned a lot by people with fibromyalgia a condition that sometimes overlaps m e . you might find it useful to check out a dedicated fibro myalgia site since they would have more experience and possible knowledge of helpful treatments. I have also heard that muscular weakness in the diaphragm can cause this.
     
    Judee likes this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,918
    Likes:
    34,964
    USA
    This was the cause for me, in addition to having POTS/Dysautonomia.
     
    alkt and Judee like this.
  11. Judee

    Judee Senior Member

    Messages:
    251
    Likes:
    497
    Wisconsin
    I agree with @TenuousGrip. You might want to make sure nothing is going on with your heart.
     
    alkt and Gingergrrl like this.
  12. xpeetzax

    xpeetzax

    Messages:
    9
    Likes:
    13
    Oh wow..thank you for all the responses... these were all really helpful. I definitely want to get to the bottom of this troublesome symptom. I have an echocardiogram scheduled for next Thurs so hoping that would bring some answers if its cardiovascular related...haven't asked for a referral to a cardiologist yet..I think my PCP wants to interpret the results first then perhaps a referral?

    One thing I forgot to mention is that I am dizzy all the time...particularly when I'm having the SOB, my head feels real heavy and even more dizzy. I happens to occur more severely when I am standing up although I did briefly test at the doctors office for OI where I measured my BP while sitting and standing and didn't notice any change... (96/62 sitting, 96/70 standing).

    So if it is due to the heart... I heard that some supplements are good for ME/CFS/FM patients to take? What do you guys think about l-cartinine and D-ribose? I'm currently on magnesium, coq10, B12, along with a probiotic supplement.

    Thanks again!
     
    alkt and Gingergrrl like this.
  13. PatJ

    PatJ Forum Support Assistant

    Messages:
    2,723
    Likes:
    7,513
    Canada
    Does it lessen or resolve when you lie down?

    That's a definite change. Your pulse pressure becomes narrower when standing. Pulse pressure is systolic (top number) minus diastolic (bottom number). Many people start feeling woozy once their pulse pressure is 20 or lower. Around 10-15 is when a person often passes out. It's a way for the body to become horizontal in order to increase BP.

    A normal average pulse pressure is 40.

    I take d-ribose. It gives me a little extra stamina.

    Too much CoQ10 may lower blood pressure in some people. How much do you take?
     
    alkt and Gingergrrl like this.
  14. xpeetzax

    xpeetzax

    Messages:
    9
    Likes:
    13
    Yes, It does seem to get better sometimes when I lie down, although it takes some time.

    I see... does this mean I do have OI?? Is this the standard test? How come I haven't heard of pulse pressure before? Perhaps its because I'm still new to all this stuff ><

    I take 200 mg a day.
     
    alkt and Gingergrrl like this.
  15. PatJ

    PatJ Forum Support Assistant

    Messages:
    2,723
    Likes:
    7,513
    Canada
    That sounds like brain hypoperfusion (reduced amount of blood in your brain) due to being upright. Some symptoms will fade quickly after lying down, others can take hours to fade.

    I can only be upright for 30-45 minutes before OI symptoms start. Then I have to lie down for 80 minutes to recover. Compressions socks help me to stay upright a little longer.

    It sounds like it but for an official diagnosis you would need to talk to an OI specialist (most regular doctors aren't familiar with OI), and probably do a tilt-table test.

    There are different reasons theorized for OI in ME. One is the idea that ME patients don't have enough blood, another is that we don't respond properly to the bodily chemicals that control blood vessel contraction.

    It's a sign of OI. This thread provides info on the "Poor man's tilt-table test" which is an at-home test you can do with an electronic BP cuff.

    Many people have never heard of pulse pressure, including some medical professionals.

    I've read mixed results in studies. Some conclude there is little evidence that CoQ10 lowers BP, others think it works. I rely on what I know it does for me. 200mg would lower my BP but I seem OK with 60mg.
     
    alkt and Gingergrrl like this.
  16. xpeetzax

    xpeetzax

    Messages:
    9
    Likes:
    13
    Thanks so much for the info everyone. Just an update:

    I went to go see a neurologist on fri and they put me through an epley test and a tilt test and I was positive for BPPV and orthostatic hypotension (my heart rate increased by 30+ bpm upon standing)...they treated me using some maneuver for the BPPV and the doctor ordered a special MRI to test for viral encephalitis. But for the first time in nearly 5 months, a doctor told me that something is "definitely wrong with me". From epley footage of my eye, he told me the vertigo I'm suffering from was definitely one that is indicative of someone who is severely ill. I was so happy to hear that I'm not just anxious/depressed or suffering the remnants of a flu as so many other doctors have been telling me.

    A step in the right direction!
     
    JulieRDH, picante, PatJ and 3 others like this.
  17. picante

    picante Senior Member

    Messages:
    812
    Likes:
    949
    Helena, MT USA
    What sort of results did you get?
    Does anyone know what kind of MRI would show viral encephalitis (or meningitis)? I've been going around in circles with doctors who don't want to run any tests for this.
     
    alkt likes this.
  18. Moof

    Moof Senior Member

    Messages:
    215
    Likes:
    551
    UK
    Air hunger, dizziness and palpitations can also be symptoms of B12 deficiency. If you've also started getting a sore tongue or mouth ulcers, tinnitus, pins and needles, depression, or memory loss, it's worth looking into. Some people can't absorb B12 from oral supplements, so taking them isn't necessarily proof against deficiency. Obviously pernicious anaemia will hamper absorption from the stomach, but people with a history of h. pylori infection are also at risk, as well as everyone over 60 (apologies if you're only 23 or something!).
     
    alkt and JulieRDH like this.

See more popular forum discussions.

Share This Page