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Easily out of breath

Discussion in 'General ME/CFS Discussion' started by Jemima37, Sep 6, 2018.

  1. Jemima37

    Jemima37 Senior Member

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    I will attach a photo of how I describe this I feel too anxious and tired to re write it, I hope that's OK. I wrote this in my journal a couple of weeks ago.

    Ive been in a bad anxiety and depression breakdown all year so far and with it bad panic attacks which led to my cfs returning badly. I became bedroom ridden and all I've done really these last few months are trips to the loo every hour, a little 2 minute walk about. My gp says I've become very unfit and deconditioned hence the out of puff feeling on walking. She says its not the same as the shallow breathless feeling I get at rest as thats not constant and comes on if stressed, anxious etc.. Even negative thoughts trigger it so she says it's panic and anxiety related. Now typing this brings it on so I guess her theory is correct haha.

    I just worry it's not normal on exertion of so little, just a trip to the loo hourly I feel out of puff for a few minutes after sitting, worse after a shower or number 2 toilet trip. Is this normal? She says that's just deconditioned/ unfit and cfs related and normal. It's making my anxiety go wild worrying its something sinister and not normal for cfs at all. I've been in a bad place with fatigue the last few months so been resting alot and now I worry I've done some damage from so much rest.

    My oxygen levels are ok at 96-97% and bp normal so gp was happy with that and says its just from so much rest and bad anxiety.

    Thank you

    Jem
     

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  2. outdamnspot

    outdamnspot Senior Member

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    I'm having the same problem and it's worrying me, but I feel too sick to even make it to the doctor right now. I get out of breath from standing up, climbing the stairs, speaking etc. My chest feels very tight. Personally, I don't think it relates to deconditioning because I've been bedridden for 3 years anyway, and this is a new problem.
     
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  3. E.man

    E.man Senior Member

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    Don't think deconditioning either. Not for me.

    Got this as new after 16yrs of ME.

    There's a lot of new anxiety with it I never had before too.
     
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  4. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I also have trouble with breathlessness with very little exertion (but no anxiety). I see Dr. Systrom in Boston, who does research in this area and he feels very confident that it's not due to deconditioning. His research suggests that many people with CFS have experienced some degree of nerve damage, perhaps as a result of the initial infection that set off our illness. This nerve damage causes what he calls 'wimpy veins': our veins are not constricting hard enough to pump the blood circulating through our bodies back to our hearts. As a result, our hearts don't get as full of blood as they ought to so when our hearts beat they aren't sending out good oxygenated blood as well as they could to the rest of the body. There's an article here on this topic that explains everything much better than I can

    I hope what I've just described doesn't make you feel too anxious. A few reassurances: what he's observing is not progressive nerve damage (i.e. it already happened and isn't getting worse), there's nothing wrong with your heart, you're not deconditioned, you have not caused damage to your body by resting, and you're not crazy.

    Also, there have been some medicines he's prescribed that try to treat the 'wimpy veins' and therefore make the whole system work as it should. He most commonly prescribes Mestinon, which actually made me feel worse. But then he put me on Midodrine, which has made a difference. He also prescribes Florinef to some patients.

    I went to Dr. Systrom because I was getting so out of breath just from standing up or having a conversation (I'd have to stop and pant in the middle of a sentence) that I was afraid maybe there was a problem with my heart. But as soon as I started Midodrine the breathlessness improved a great deal, my fatigue has improved, and I'm even able to do a few minutes of gentle exercise each day (without getting out of breath!). So based on this I feel more confident that my heart isn't damaged and I'm not deconditioned--I just needed some medicine to help my veins pump a little harder.
     
    Last edited: Sep 6, 2018
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  5. jesse's mom

    jesse's mom Senior Member

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    I have the same thing, my husband and daughter say I breathe the same way while I am asleep. My husband had the same fears about me and my becoming deconditioned until I was in the hospital last fall for yet another high fever, and flu.

    I need help now to wash my hair and I don't shower daily because it is just not worth the exhaustion and that trembling feeling I get when I do too much.

    Best of luck, I hope the medications @RebeccaRe mentioned might help you.
     
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  6. maybe some day

    maybe some day Senior Member

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    I had this problem for a week or so last winter. Scares the heck out of you. But I realize it's part of the disease that morphs through the body. Think of it as a lava lamp- its always changing.
     
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  7. SherDa

    SherDa

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    Anemia (of any type including anemia of inflammation) should probably be ruled out since it can anxiety, depression and shortness of breath.
     
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  8. outdamnspot

    outdamnspot Senior Member

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    How do they treat anemia of inflammation?
     
  9. Jemima37

    Jemima37 Senior Member

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    Thank you all.

    I'm not anaemic, my iron levels are always good in range. I did at first worry the breathless feeling was iron related. I take a spatone a day to be sure.

    My gp seems to think a lot of it is anxiety related as it comes on strong if I think of my situation, say bad things about myself like I'm a bad mum and wife etc.. If I dwell on my situation and beat myself up that brings on the tight feeling in my upper abdomen, cold feeling in throat and breathing shallow. My gp says stress causes shallow heavy breathing which I know it does so I agree a lot is anxiety but the fact I'm breathless just going to the toilet, a number 2 will feel i ran around the block. Showers and hair washes have become so difficult. My gp again thinks it's all the anxiety I have over the way I feel worsening it and I have been very inactive the last few months so I guess it is normal to be out of puff, your body isn't used to exertion if you're on bed rest. I'm lucky if I do 1200 steps a day. Today I've only done 800 ish on my fitbit. I've been lying down resting and just getting up for 2 minutes every 60 to 90 minutes to go to the loo or do a few steps around upstairs.

    Thank you for sharing your advice and experiences it means a lot.

    Jem
     
  10. AndyPandy

    AndyPandy Making the most of it

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    @Jemima37

    I have had ME for over 7 years.

    I have shortness of breath. Pretty much with any activity including showering, shuffling a few steps etc. I didn’t have this before ME.

    In my experience it is diffferent from anxiety which I rarely have.

    You might like to search PR about shortness of breath. I think you will find others experience this too as part of ME.

    Best wishes
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    I had severe shortness of breath (SOB) which was absolutely debilitating and one of the core reasons that I used a wheelchair for 3.5 years. In my case, there were ultimately three different causes, none of which had anything to do with anxiety.

    1) Severe POTS
    2) Allergic reactions from MCAS
    3) Muscle weakness which affected my breathing muscles including lungs and diaphragm

    In my case, the shortness of breath and all of these symptoms reversed with my treatments (for autoimmunity) and I no longer use a wheelchair and can walk and drive again. I'm now doing PT to strengthen my muscles which weakened from 3.5 yrs of wheelchair use.

    I'm not minimizing or discounting the role that anxiety can play, and I've dealt with significant anxiety this year, including watching my mother die of cancer, and yet it had no impact on my prior shortness of breath which had already improved from my treatments (for autoimmunity in my case). I can now pass spirometry and PFT (pulmonary function test) with normal scores after several years of failing these tests which showed pulmonary restriction at that time b/c my muscles were not strong enough to support normal breathing (PLUS having POTS and allergic reactions added into the mix)!

    Am writing this in case it helps b/c the POTS and MCAS reactions were obvious to most doctors but the autoantibodies weakening my muscle strength was so obscure, it still shocks me that we figured it out (although it took several years of trying things that did not work or made me worse to get there).
     
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  12. Dechi

    Dechi Senior Member

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    Dyspnea is a common symptom with ME and it has nothing to do with being deconditioned. You might be out of breath because of deconditioning too, but it would be on top of the ME dyspnea.

    I have it and it appears out of nowhere, sometimes just from talking. I don’t worry about it, really. I know it’s « normal » in my case, I’ve been tested for pulmonary and cardiac defects.

    If your doctor isn’t worried, I wouldn’t think too much of it.
     
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  13. Jemima37

    Jemima37 Senior Member

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    Thank you

    I was concerned it was weakened chest muscles or something and my breathing would stop. The poster above said it was one cause of their breathing issues which is quite scary for me, it's something I've worried about. Hopefully in my case it isn't.

    Thank you again.
    Jem
     
  14. Jemima37

    Jemima37 Senior Member

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    Thank you for your reply.

    That was my fear it could be weakness in my chest muscles. It scares me incasr theyrw struggling to make me breathe or something which can cause me panic atacks if I think about it.

    Thank you for your reply.

    Jem
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    When a doctor listens to your lungs with a stethoscope, does s/he tell you that it sounds normal and you are able to inhale a full breath? In my case, I was only able to inhale a breath to my shoulders or upper chest but not to my diaphragm. My doctors said that my lung capacity was very diminished when they listened with stethoscope and my PFT tests were all in the 60's and 70's showing pulmonary restriction.

    Doctors ultimately said it was either due to pulmonary fibrosis (which was negative on lung cat scans and therefore ruled out) or very weakened muscular strength as if I had myasthenia gravis or guillain barre except I didn't have either. It exceeded anything they had seen with POTS (even though 100% I had confirmed POTS).

    It was ultimately determined that I have an atypical form of LEMS and with treatments this symptom (shortness of breath and extreme muscle weakness) is completely gone now. With each passing day, it is harder for me to remember what it was like yet I do remember and it was pure torture b/c it was so disabling. I mention all this in case it is helpful to anyone else out there.

    But if your doctor says that you can inhale a full breathe when s/he listens with stethoscope, and if you can pass a basic spirometry test, it is very unlikely to pertain to you. This aspect of my case was beyond just a zebra among horses. It was a zebra/unicorn which my niece calls a "zebra-corn" b/c it is so weird and rare (hopefully in a good way... :confused::eek:;))
     
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  16. Jemima37

    Jemima37 Senior Member

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    Thank you.

    My husband has asthma and has one of those for testing at home and I always used to get 450. I just did it now to check and it was 400-450. Pulled my chest muscle doing it haha. Ouch.

    Thank you for your help.

    Jem
     
  17. Judee

    Judee Senior Member

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    I get this too but it almost always follows exposure to an allergen or chemical. When I feel it coming on if I stop and think about what happened to me beforehand, i.e. I ate something or I smelled something or someone came near me with perfume, I can usually figure it out.

    It's the way I've originally figured out most of my and my mom's sensitivities.

    Sometimes it's been something I've been exposed to all my life that all of a sudden starts causing issues for me.

    Exposure to chemicals especially can trigger the anxiety for me. Molds make me feel depressed.

    I wouldn't totally dismiss your feelings just because the doctor says it is deconditioning or anxiety. You're the one who lives in your body. Too many times we put the doctor in the driver's seat and too many times they dismiss things under "it's all in your head" or "you just need to exercise more," etc. If you stay mindful of it you will probably be able to figure it out if there is something precipitating this.

    One more thing, my doctor did the in-office asthma test and mine came back normal but I know I get this as an allergic reaction and not anxiety. There is a definite tightening in the chest with shortness of breath when I experience it and it almost always responds to the inhaler and/or taking fish oil vitamin A (not the beta-carotene kind) so trust yourself on this.

    Edit: I don't think we can over-rest with this disease. If you feel like you need to rest, I think you can trust your body on that too.
     
  18. Dechi

    Dechi Senior Member

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    @Jemima37 If you haven’t been tested for Myasthenia Gravis, then you should. It would put your mind at ease. Unless you have MG, I don’t think your lungs can just stop functioning. Ask your doctor about it to rule out any other possibility.

    It’s not healthy to be anxious about such a basic thing as breathing.
     
  19. Ravijojla

    Ravijojla

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    @Jemima37
    @Jemima37 , AndyPandy is right. This is part of ME.
    My second year of illness was with your symptoms. They lasted for maybe 5 months... I consider that as a severe phase of my ME. I also think it is very different from anxiety no matter what doctors say.
    That will pass, just be patient. Now I have periodical problems with breathing when talking for longer period, laughing loud... But walking for short distances is no longer a problem, showering is manageable, drying hair is manageable...
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    I am not sure what the numbers mean and I never had asthma. I learned from the process of attempting various spirometry and PFT testing over the last few years that asthma is a pulmonary obstruction vs. what I had was a pulmonary restriction (due to lung & diaphragm weakness).

    For anyone concerned about this, it is good to not only test for myasthenia gravis autoantibodies but also for MuSK and LEMS autoantibodies.
     
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