This topic contains 20 replies, has 8 voices, and was last updated by  Vanessa Vaile 11 months ago.

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  • #12460
     Brittany Foster 
    Keymaster

    When exercising it is extremely important that I fully listen to my body. I must admit though, when I’m exercising and “in the zone”, listening to my body is more difficult. Sometimes I find myself ignoring my warning signs because I want to push through it and keep going.

    Not listening to my body and the warning signs that I need to slow down or stop exercise has made me feel more symtomatic during the day. Speaking from experience, this level of ignorance is NOT worth the struggle that comes with it.

    For me, some signs that I should never ignore during exercise are increased shortness of breath, feeling my heart rate too strong in my chest, lack of sweating or an increase in sweat that isn’t “normal” for the exercise I’m doing, any dizziness, headache, or chest pain makes me have to completely stop.

    These may seem like common sense signs to slow down, but when in the exercise zone, it can be hard to pay attention to our body unless we are forced to. Have you noticed any of these symptoms with exercise? What symptoms have you had that make you slow down?

  • #12500
     VK 
    Participant

    My experience says that extreme shortness of breath or chest pain are big reasons to not continue…

    • #12509
       Brittany Foster 
      Keymaster

      VK,
      definitely that would be a big sign to stop! Thank you!

  • #12519
     Judie 
    Participant

    Great post Brittany,
    I am just learning so far my few symptoms that aren’t happening often stop me. I get in the zone and I always finish my routine. This has become problematic for me bc when I get the burning chest pain that goes down both arms I MUST stop. I am recovering fairly quickly thankfully. A few weeks ago I walked to the end of my long block trying to get my steps in. On my return trip the chest burning started. I would not call my husband bc that would have been defeat! I made it home. Now I realize when this burning starts it is from the PH and I must stop or I potentially can harm my heart which so far is healthy! I must stop being so stubborn….it is no longer in my best interest and can cause harm.It is the stubbornness in me and I must get over it. I live in Fl I think the humidity was a major factor. Now I make sure I walk in air condion, grocery, gym, my home. I walk circles around my house but it’s what I have to do right now. As long as I walk slow I can tolerate the treadmill with a 5% incline. Last night the pain started on the exercise bike I think I was at level 2 at the most. I stopped immediately and checked my pulse ox which went down to 95% but quikly recovered. I have always been 98-99% on the pulse ox. The lowest I have gone now is 91%. Being a nurse and a patient I know these things were normal until a few short months ago. But a change in my lung function has occurred and I must consider that at all times.
    Judie

    • #12522
       Brittany Foster 
      Keymaster

      Hi Judie,
      It’s so hard when we are forced to pay extra attention to our bodies because it is easy to feel defeated when we actually listen to it. It may seem hard to think about times when we were able to do more. You are right though, and we must think about what is going on in the present moment because different factors effect the impact that our symptoms have on us day to day! I remind myself that there can’t be any comparison. It HAS to be just how I am NOW. I’m glad you are realizing some or the things like the humidity that are effecting you and making adjustments where you can.

  • #12523
     Terry D. Blissett 
    Participant

    Great post! I follow these same warning signs. I also do a type of pre-exercise checklist to see if I should workout. The primary thing I listen for in my body is fatigue. I have noticed that even the slightest amount of fatigue usually means my workout will not be successful. Before my PH diagnosis, I could just push through fatigue, lack of sleep, hunger, etc. Now is different. The times that I have forced exercise with fatigue (after PH) has been met with increased fatigue “during” the workout, slower heart rate than normal initially, early muscle tiredness/cramps and also the regular symptoms of PH. Hopes this helps someone. Please do listen to your body. But please do not give up. My stamina has been “slowly” increasing.

    • #12531
       Brittany Foster 
      Keymaster

      Terry,
      I like the idea of doing a pre exercise checklist before it gets to the point of complete exhaustion during the exercise. Even doing something like laying down and really scanning the body (like what people do during yoga or something) might be helpful for me. Thanks for this tip! It is so true that with extra fatigue comes the muscle weakness which just would lead to a workout that is too hard on the body. Thanks again for great advice!

  • #12529
     Judie 
    Participant

    Hi Terry and everyone,
    I am learning I must now listen to my body. I rarely was able to take a nap unless I was in a mast cell flare then I could be in bed and sleeping most of the day. Luckily (and I am knocking on wood) I am pretty well controlled now with my daily management. I know the may change with seeing the Pulmonologist and getting new meds on board for PH. I try to take Benadryl around the clock for 5 days as some of my medreactions have been on day 4 or 5. I also have nebulizer treatments should my lungs start feeling bad. Since mast cell disease is basically my over reactive Immune system, think polar opposite of AIDS.
    My immune system tests anything on my skin, entering my mouth or in the air I breathe and smell. Barometric changes and weather changes can throw me into a tail spin. I have a boat load of medication allergies which is probably broken down to a single ingredient each med share with the others. Because. OST of my reactions are delayed it has not pushed me to be the deceive I would need to be to identify the common ingredient. I have gone in to anaphylactic shock from an ant bite and other things have caused throat swelling but I have been able to stop them. Dealing with these dual diagnoses is going to be interesting. Luckily I have a good care team to help me.

    • #12532
       Brittany Foster 
      Keymaster

      Judie,
      dealing with and managing all of that definitely will be hard! I’m sure there are a lot of overlapping symptoms too that might get tough to tell what conditions is causing the symptoms. I know for me it is like that with multiple chronic conditions that are both debilitating. Anyphylaxis reactions are so awful. I had one to a soup that had a certain spice in it that made my throat swell. An epipen injection and IV benadryl at the hospital helped me and I was lucky that the reaction wasn’t any worse. I do a few breathing treatments during the day too. It’s so hard when the weather starts effecting me!

  • #12536
     Vanessa Vaile 
    Participant

    Jodie,

    I do a morning check (when to walk or whether not to go out). Wind and humidity are factors too,especially in hot or cold weather.

    About making those steps, I carry a lightweight folding seat or sling it over a shoulder. Remember the folding camp stools from scout camp? Coleman still makes them — but even lighter weight. When my body tells me I need a break,I can sit down wherever I am — and pull out the oximeter to check hear rate and oxygen numbers. This time of the year I look for shade, and winter use is more limited.

    • #12538
       Brittany Foster 
      Keymaster

      Vanessa,
      I love the idea of the light weight chair. Whoever is going for a walk with me would have to be the one to carry it because I already carry and oxygen on my back at all times 🙂 Such a great idea though and so convenient. Wind and the heat definitely have a huge impact on me too! You’re not alone in that!

      • #12588
         Vanessa Vaile 
        Participant

        Brittany,

        Haha. The Coleman camp stool weighs less than 2 lbs. Too bad someone can’t carry your oxygen for you instead. Sometimes I carry it in one hand like a purse. One user on the review page fastens it to her backpack with a small Velcro strip.

        https://www.amazon.com/Coleman-2000003744-Rambler-II-Stool/dp/B00339911O/

        • This reply was modified 11 months, 2 weeks ago by  Vanessa Vaile.
      • #12622
         Brittany Foster 
        Keymaster

        Thank you for the link Vanessa! I really appreciate it. This site is so great because I would have never known or thought about using that!

      • #12838
         Vanessa Vaile 
        Participant

        Agreed — I get so much out comparing notes and tips, not to mention confirmation of observations (like warning signs and heeding them).

  • #12561
     Robin Frankel 
    Participant

    I recently was diagnosed with CTEPH and am being referred for thromboendoarterectomy in San Diego. I am finding that I can push myself to keep up with my friend shipping but then there is a “wall” if fatigue that descends fairly suddenly. I try to listen to that but it’s really too late, the rest of the day is filled with exhaustion and pounding heart and arrhythmias. It’s hard to anticipate something that happens suddenly but I suspect I am ignoring warning signs that the wall is coming!

    • #12573
       Brittany Foster 
      Keymaster

      Hi Robin,
      I don’t have CTEPH, but i do know the feeling of hitting that “wall”. When i get to that point I also feel as though I can’t do anything the rest of the day. The arrythmias and headaches are never a pleasant symptom. I have been trying to give myself breaks during the day and rest to try to avoid that as much as possible. Even if our bodies don’t give us outward warning signs, they still are working overtime for us and deserve a breather (literally!)

  • #12605
     Robin Taylor 
    Participant

    While I do know that all of of bodies react to PH differently, we all have other illnesses that affect our PH and we are on different levels of oxygen (or none), it still seems interesting how our bodies react to exercise. I walk on the treadmill at Pulmonary Rehab at a 2 mph pace with 10 L of oxygen for about 8 minutes. My blood oxygen goes down from 97-96 to around 82. I have no chest burning, just slightly increased breathlessness. I do practice breathing in through the nose and out through pursed lips as my breathing gets more labored. On all other machines, I maintain a 90-97 saturation. As I have progressed through weeks of PR, my stamina and energy levels have increased by a lot. I usually still have enough energy to do grocery shopping and errands after, but usually need an afternoon nap on those days (lol!). I find it interesting that I have no other body symptoms when I exercise with low blood oxygen, but when I occasionally wake up in the middle of the night hypoxic, I have tingling in my hands and feet. (And yes, I’ve had a sleep study and I don’t have enough apnea events to warrant a CPap machine. But I just did another nighttime blood ox test, so it might warrant upping my nighttime oxygen.)Anyways, I guess it all means that we need to listen to our bodies and realize we all are different, but we definitely do need to exercise no matter what.

    • #12623
       Brittany Foster 
      Keymaster

      Hi Robin,
      I agree that exercise is so important. I’m glad you are seeing improvements even if you have to take a rest during the day. It truly is so interesting that people feel the effects of their condition so differently. For me, a lot of what I experience with dropping sats has to do with what my normal is for me. My body has learned to adjust with an oxygen level in the high 80s and I actually feel pretty okay when it is in the high 80s with exertion. It is only when it drops from that “normal” range for me that I start to feel symptoms. Whereas is someone was used to an oxygen level of 99%, high 80s may seems symptomatic for them. it is all relative for sure !

  • #12792
     Donna 
    Participant

    Interesting topic! I’m still trying to figure this out. If I ignore chest pain, weakness, or that lurking suspicion that the “wall” is just ahead, I am always sorry later. Right now, my “exercise” consists of driving to work and back, occasional shopping trip, and housework.

    I find I can tolerate an o2 at 88 for a while, but it’s the heart rate that seems to consistently cause symptoms when it gets near or above the 100 mark. Which seems pretty wimpy, even for a 59yo…

    • #12809
       Brittany Foster 
      Keymaster

      Donna,
      Totally agree that even driving some days and walking around in a mall can definitely make me feel so tired after.

      I also can tolerate my o2 in the upper 80s on oxygen, but as soon as it drops i feel rhe difference. My number one sign is when I start becoming slower to respond to people or just feel more tired than I should. Thats when I know to turn it up.

      Do you see a cardiologist? The extra work on the heart when it gets above 100 is sometimes hard for me to tolerate too and leaves me feeling like I ran a marathon. If you have a cardiologist might be worth asking about a medication to help slow your heart rate down! Worth asking about! Keep me updated !

      • #12814
         Donna 
        Participant

        Brittany, I do see a cardiologist and pulmonologist. My new PH doc is actually a cardiologist, as well…sadly, my previous cardiologist just had a massive heart attack, ironically.

        I’m sure once the cath is done he will have some suggestions for medications, and I’ll be sure to mention the tachycardia. I do find that it gets more difficult to carry on a conversation, both physically and mentally, when I’m fatigued. I have had hypoxic encephalopathy when this started, which has made my speech a bit off. Speech therapy has pinpointed a couple of areas that seem to have been affected, including abstract thought, so when I’m fatigued I really lose that ability!

        Thank you for the suggestion!

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