ME/CFS and the Change of Seasons: How Does This Affect You?
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Respitory depression/cardiac failure-any ideas?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sidny, Jun 18, 2018.

  1. Sidny

    Sidny

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    So just like the title says pretty much since onset I’ve been unable to breath normally. I’m taking super shallow breaths and my chest hardly expands when I breath. Also my cardiac output ‘feels’ like a quarter of what is use to be. It feels like I have very poor micro circulation and I can’t sweat anymore.

    Anyone else experience either of these symptoms and if so did they improve at all? Also any ideas as to what might be causing this?
     
  2. Wolfcub

    Wolfcub Senior Member

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    Well....it was probably a lot different to what you are feeling @Sidny but I also felt (particularly a few weeks ago but sometimes now too) some restriction in breathing, like I have to "work at it", some out-of-beath feelings just going up a slope only 100 yards long (so unlike me!) and definitely cardiac symptoms re: palpitations and a faster heart rate at times.
    Now this isn't only because I am an ol' bat, it's connected with whatever has been/still is wrong with me. Because it wasn't this way even in early March this year.

    I also got a feeling of restriction in circulation esp. in extremities. Had a few weeks when one foot would never get warm no matter what I did. Now the weather is warmer that issue has subsided.

    The palps have improved, yes. The cold foot is a lot better probably because it's summer now. But I always have one blue finger in the morning and it doesn't turn pink until I work at restoring the circulation. That freaks me out!

    I would say definitely do gentle controlled slow rhythmic breathing exercises
     
  3. Pink

    Pink Senior Member

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    Yes I often have trouble breathing deeply and have heart racing. Drs cant figure out why
     
  4. Wolfcub

    Wolfcub Senior Member

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    Yes @Pink, I felt similar. I do breathing exercises....like count 6 in....hold for 3.....count 6 out. Or whatever number suits you best. Nice music at the same time can help too. I felt I had to get a grip of it because it felt horrible.
     
  5. Sidny

    Sidny

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    Thanks @Wolfcub I appreciate the tips on the breathing excersise, it’s just a bit frustrating as concentrating on it doesn’t quite bring me the relief I would expect plus I always viewed that aspect as an automatic bodily function! I believe this is what is contributing to my poor sleep quality as well. When I mention my inability to get refreshing sleep to friends/family they always recommended sleep aids but I think the issue is deeper and rooted in an autonomic dysfunction. I rember reading an older post Whitney Dafoe made a couple years back where he said even on xyrem he only managed a few minutes of deep sleep in a sleep study.

    The warmer weather especially here in Los angles has helped some with my circulation but not very measurably and I wish it wasn’t a temperature dependent function!

    Ps love the website you made on Misty!
     
  6. Pink

    Pink Senior Member

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    I've tried the breathing exercises but I'm never able to do them when I have trouble breathing.
     
  7. kangaSue

    kangaSue Senior Member

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    Does it coincide with having GI problems too, either severe dysmotility or even just a bit of abdominal discomfort or pain after eating or exercise?
    If so, one thing that can cause your symptoms is Median Arcuate Ligament Syndrome (or Celiac Artery Compression Syndrome) and it often takes years to narrow it down to this. A Doppler Ultrasound is a very effective non-invasive screening test for this.
    If not that, and because you're not sweating properly, Autonomic Neuropathy (AN) may be part of the picture. Not sweating can be the sudomotor dysfunction side of AN and cardiac ouput and dysregulation can be the cardiovagal dysfunction side of AN (vagus nerve problem). This then can be autoimmune-related or idiopathic and would need some further antibody testing done to determine which one it is.
     
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  8. Pink

    Pink Senior Member

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    Well @kangaSue I didnt understand a lot of your post. But I do have a lot of intestinal issues but no weight loss, so it seems like the celiac artery compression doesn't apply.
     
  9. Sidny

    Sidny

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    @kangaSue Yes actually the hallmark of my whole illness has been gastrointestinal dysfunction among many other symptoms which seem to be cns/nerve related. Over the last month or two it seems to have really progressed to the point where I might even call it gastropareisis. I’m actually not only experiencing AN but also sensory neuropathy my eyes have gone numb losing smell and taste but my Nuerologist doesn’t seem to care. I had an hsv infection at onset with the addition of a suspected enteroviral exposure as well as a very probable lyme infection. All three of which the literature points to affecting nerve function, do you think if these were treated the autonomic neuropathy would resolve, or would it be too late if an autoimmune process has already been triggered?
     
  10. Sidny

    Sidny

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    @Pink it seems like breathing difficulties could be attributed to many causes, I was leaning toward AN for a while but am not sure how to really move forward with testing or treatments or if there even are any. https://my.clevelandclinic.org/heal...function-syncope-information-and-instructions
     
  11. Wolfcub

    Wolfcub Senior Member

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    Yes I can understand that @Sidny I do get what you mean. I got that "air hunger" feeling which was unpleasant. (it hasn't happened that bad for a little while now but I definitely got it at first.) I did consciously controlled slow rhythmic breathing, and I could tell it wasn't actually changing much at all at source, but it helped a little bit and might have slowed my heart rate slightly.

    Aw!Thank you for what you said about Misty's blog.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    I have not read this entire thread but shortness of breath was my worst symptom for several years (second only to anaphylaxis). It turned out to be due to three separate causes in case this is helpful for anyone.

    1) The first cause was POTS/ Dysautonomia which affected my heart rate, breathing, chest pain, etc.

    2) The second cause was allergic/anaphylactic reactions from MCAS

    3) The third (and most obscure) cause was pulmonary restriction and weakness of the actual breathing muscles (lungs, diaphragm, etc). This was due to autoimmunity and reversed with IVIG & Rituximab (leading me to be able to inhale a full breath and pass a PFT when I could not for several years prior to treatment).

    I no longer have this problem but am still in treatment and still take meds for POTS and MCAS. If none of this helpful just ignore!
     
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  13. Sidny

    Sidny

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    Thanks @Gingergrrl this post is actually quite helpful in that it gives me hope there may be an effective treatment for my similar symptoms. In this article it’s indicated that ivig maybe be helpful for autonomic neuropathy although I’m not sure if that’s what I have and what particular subset of it. https://journals.lww.com/neurotoday.../Autonomic_Autoimmune_Neuropathy_Is_An.4.aspx

    I really need to push my docs for these autoantibody tests or just save myself the heartache and ideally book an appointment at the center for complex diseases.
     
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  14. Mary

    Mary Moderator

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    @Sidny - respiratory depression and low cardiac output can be signs of hypophosphatemia (see here), as well as fatigue, weakness, etc. I've experienced this and it makes me very tired. There's a subgroup of ME/CFS patients who have phosphate diabetes (unrelated to "regular" diabetes). I don't know if I have this, but I do have ongoing problems with low phosphorous and very often have to take a supplement. Low phosphorous also can be caused by refeeding syndrome (see https://en.wikipedia.org/wiki/Refeeding_syndrome). When I first started taking extra thiamine, it initially boosted my energy very nicely and then a day or 2 later I got hit with severe fatigue, due to hypophosphatemia.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    I would do it if it is possible and I know you have a very complex case. They are the only doctors I have encountered who specialize in these weird complex cases that do not fit into any known box.

    I know I have some kind of autonomic neuropathy like you b/c even when I am wearing shorts and a t-shirt, my hands and feet are often freezing and I am wearing fuzzy slipper boots and gloves. Last night just my right hand/arm was freezing like it was in a bowl of ice water. This is why I will never refer to myself as "cured" and do not believe it is possible vs. my most debilitating symptoms are now in remission (so I can walk, drive, and have no allergic reactions and can function at a much higher, more normal level again).
     
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  16. Pink

    Pink Senior Member

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    Well the dysautonomia dr I went to (who was terrible btw) said I might have autonomic dysfunction.
    My blood test for mcas was negative.
    Sometimes I feel like it's hard to breathe bec my jaw seems almost out of place and my tongue seems swollen; but none of the drs or my dentist can figure it out.
    Other times my chest feels tight but different than an asthma attack.
    I dont even have any resources (time, money or strength) left to see any more drs.
     
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  17. Sidny

    Sidny

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    @Pink Im in the same boat but I think an appointment with a specialist seems like my last hope. My illness has progressed quickly over the last 6 months and I can’t imagine where I’ll be in a few more. It’s unfathomable to me that one could be in such a poor state of health yet largely be dismissed by the very people we’re supposed to to count on for help.
     
  18. Pink

    Pink Senior Member

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    Good luck @Sidny . The specialists I went to were just money hungry useless doctors, but I hope u have better luck.
    Which dr are u going to?
     
  19. Sushi

    Sushi Moderation Resource Albuquerque

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    @Sidny Just to cover all the bases have you considered asking a cardiologist to do an echo to measure your cardiac output?
    The home sleep tests (ordered by a doctor, they are paid for by insurance) have become very sophisticated and would tell you whether you are having any oxygen problems while you sleep. My cardiologist ordered this test for me. It is much more patient-friendly than the overnight tests done in hospital sleep labs.
     
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  20. Sidny

    Sidny

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    I don’t know yet but was thinking either Kaufman or Cheda in nor cal.
     
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