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  • Fearful of “Increased” Exercise

    Posted by Charlene Marshall on January 22, 2019 at 10:56 am

    Last week I met with my Pulmonologist and overall, the appointment went well. Some of my pulmonary function tests (PFTs) showed stability, and thankfully only one showed a decline, however, it was a pretty significant decline of 8% loss of function. When I asked my doctor about how to help avoid this happening again in the future, we talked about something that admittedly, I am scared of.

     

    Our lungs are strengthened or challenged by exercise, and this is especially true for those of us living with compromised lungs due to idiopathic pulmonary fibrosis (IPF). And while this is important, it can be terrifying when exercise is accompanied by shortness of breath. This is unfortunately the case for me, and I hate the feeling of being short of breath so the idea of exercising more to try and strengthen or regain some strength in my lungs isn’t appealing to me. However, I know the importance of this so I will give it a try.

     

    Most people exercise with the goal of weight loss, and while could be beneficial for almost everyone; its not part of the reason I am going to try and walk more on my treadmill in the basement. I am going to do this, despite being fearful of it because of the shortness of breath it causes, because I want to try to maintain or even improve my lung function. Here are some things that I am doing to make me feel a little safer, and more comfortable with increased exercise:

     

    • Walking in the morning: by the end of each day, I am exhausted. As a result, I would imagine I would be more clumsy, apt to fall or struggle with my breathing as opposed to in the morning when I am at my peak energy level. As a result, I am choosing to do this increased exercise in the mornings.

     

    •  Use a pulse-ox: sometimes half the battle for me is feeling like I am short of breath, even though my oxygen saturations are well within range if I am using my 02. By using a home pulse-ox, I can monitor my numbers and keep exercising even though I might feel short of breath, because I can see that my oxygen sats are okay.

     

    • Only exercising when someone is home: this can make my schedule of when I can exercise a bit less regular, but I feel so much more comfortable exerting myself, or pushing my lungs, when I know someone is just upstairs to help me if something when wrong. This is just a level of safety that I believe everyone should practice regularly, and really helps me feel more comfortable.

     

    Have you been told to increase the amount of exercise you try since your IPF/PF diagnosis?

    If so, how did you feel about this and if worried, were there things you did to combat the fear?

    Karl replied 5 years, 2 months ago 4 Members · 24 Replies
  • 24 Replies
  • john styles

    Member
    January 24, 2019 at 9:29 am

    Nothing I did stooped the decline in exercise except what I posted under Laser Therapy.  I went from walking 3 1/2 miles from first diagnosised to walking 1 mile with portable oxygen at 5 to no oxygen.  This is an unforgiving and nasty disease but there may be hope with the class 4 cold laser.

  • Charlene Marshall

    Member
    January 26, 2019 at 9:00 am

    Love  this reply John, thanks again for sharing. For folks wanting to learn more about the class 4 cold laser information, check out John’s post here: https://pulmonaryfibrosisnews.com/forums/forums/topic/laser-therapy/#post-16231

    I, nor BioNews/PF News, can endorse this as its not something grounded in literature or something I’ve tried but connect with John for more information as it seems to really have helped him thus far. 🙂

    laser therapy

  • Steve Dragoo

    Member
    February 2, 2019 at 10:46 am

    Hi Charlene – When I was in PT they worked on increasing my core strength, which helped stamina and endurance.  But physicality seems a bit circular and comes and goes some no matter what I do at the moment… – Steve

    • Charlene Marshall

      Member
      February 3, 2019 at 6:55 pm

      Hi Steve,

      Thanks for your note, as I know this is an important topic and one that some people can relate to and not others. Did you do the pulmonary rehab as the PT you’re referring to? I loved my first round of pulm. rehab and hope to start another one soon! I found they are the team of specialists I am most comfortable taking direction from regarding exercise. Hope the fatigue is starting to subside a bit for you…

      Take care,
      Charlene.

  • Steve Dragoo

    Member
    February 3, 2019 at 7:41 pm

    Hi Charlene – good to hear from you as I know you have many members to keep up with.  Initially, PT was core build up which I did and liked.  All therapists were terrific but one knew a little more about pulmonary and we settled on being a team.

    I would like to go back but since I leave in 2 months I started going to a closer gym that has almost all the equipment I like and more and is very cheap monthly. So it was not specific all pulmonary but a lot of cardio which was very helpful.   Looking forward to Wednesday.  Talk soon – Steve

  • Charlene Marshall

    Member
    February 4, 2019 at 9:49 am

    Morning Steve,

    Thanks for getting back to me and providing me with that clarification. Makes sense re: the cardio helping with core strengthening, with some specific pulmonary activities. I find cardio quite difficult, but don’t mind either a good walk on my treadmill or with my dog, so I suppose I could push myself a little more when doing that and consider it a bit of cardio. I hope to start another session of pulmonary rehab soon too!

    Take care and will be thinking of you on Wednesday!
    Charlene.

  • Steve Dragoo

    Member
    February 4, 2019 at 10:55 am

    Hello Friend – IPF can do some serious damage (problems) to the heart and since I have had a minor arrhythmia for 30 + years with no treatment, I keep a close eye on it.  Was in cardiology in the Navy so I understand some of what’s going on.  I have started several supplements +2 herbs + Amla and need to be careful as some combos possibly cause the arrhythmia to kick up. So cardio probably helps the heart if I don’t overdo it.  Today at the gym I extended my recumbent bike ride a couple minutes and a new weight machine but really need to take it slow.

    Definitely looking forward to the consult about the class IV Wednesday.  This group has a high frequency but Andy thinks it will get deep enough.  There are others w class IV but not so close, haven’t talked to any yet but will later today.  Since some here like Wei, some the laser, wouldn’t it be great if their combined efforts lead to a reversal?

    Did you look at the hotel card? Stay warm… Steve

     

     

  • Charlene Marshall

    Member
    February 4, 2019 at 8:28 pm

    Hello my friend,

    I hope you’ve had a nice day! Has your fatigue subsided a little bit? I thought mine had but then ended up coming home from work and having to nap for a few hours before I could get anything done this evening. I have a head cold now though, and the weather changed from -35 last week to +8 and rain today so I think that is impacting me a bit too!

    Good job at the gym today! You had inspired me to spend a bit more time on my treadmill in the basement but then with this cold I couldn’t do so tonight. I hope it goes away so I can in the coming days, I’ll probably watch a show on my iPad and walk at the same time 🙂

    Re: the hotel card… yes, I think I loaded it up okay! I just haven’t searched any destinations yet, that is on my to-do list this coming week. Thanks again for sending it, seems like a really great program. I’ll let you know for sure what I end up doing with it. Hope you’ve had a nice day!

    Charlene.

  • Steve Dragoo

    Member
    February 5, 2019 at 8:27 am

    Hey Charlene – The weather takes its’ toil even if we don’t come down with a virus or bacterial infection.  Every morning first, I have a big, big glass of warm water and fresh squeezed lemon/lime and most days a crushed garlic clove. I haven’t even had a cold in two years. Sometimes congested but hardly at all since I started serrapeptase. Washing my hands after being in public (not sanitizer) is helpful, too.

    So by Wednesday, I feel the exercise from Monday – go figure – delayed reaction. I like the recumbent bike because there is very little stress on the knees and none on the hips compared to the treadmill and hope to increase time, speed, and intensity as much as I can.

    Yep, tomorrow is the start of a big change – I also think many of the other recommendations on PF forums are useful to help the laser. If I had a bunch of money, I would consider adding Wei at some point.

    Hope you stay well and have a great Tuesday… – Steve

    • Charlene Marshall

      Member
      February 5, 2019 at 2:28 pm

      Hi Steve,

      Happy Tuesday to you!

      I agree, I am learning that weather and changes in barometric pressure can really impact us when it comes to fatigue and breathing. The added drastic temperatures don’t seem to help either! How are you doing with your fatigue, is it a bit better this week for you? I’ve heard cold water with lemon in the morning is good, is there reason you choose warm water? Truly just curious! I should start doing this as I’ve heard there are so many benefits to having water with lemon/lime first thing in the morning. Thankfully my cold is on the mend now (I think), but I am always looking for additional ways to avoid falling ill…

      I am looking into a recumbent bike as well, I think this might be better for me in terms of regular exercise and if I can find one used for cheap, then that is even better. I can’t get myself to go to the gym, I just have too much going on and never get there so I am paying for a fee I don’t use.

      I’ll be thinking of you tomorrow and looking forward to hearing how laser goes for you! Please keep me posted ?

      Have a great day!
      Charlene.

  • Steve Dragoo

    Member
    February 5, 2019 at 2:35 pm

    Hi there Charlene – Cold shocks the body and should never be consumed unless the body is overheating – definitely not in the morning. Warm + lemon/lime helps reset PH some and w garlic added protection – add real honey – even more protection – warm helps move through faster and easier on the system.

    Fatigue was bad Sunday – heart jumping a lot but settled down and Monday and today have been good but I am learning no matter what my brain wants I no longer have a day worth of stamina. Glad your weather is giving you a break.  Cabin fever can be so boring but thankfully we have the internet and this forum to keep us going.

    Not sure we do a treatment tomorrow but if the price is right and he has the time – I’ll do it.  Really glad John brought this up and Andy jumped right in and is helping a lot of people already. It’s gonna be good… Steve

  • Charlene Marshall

    Member
    February 6, 2019 at 7:53 am

    Hi Steve,

    Oh this is really interesting to learn! I tend to drink a lot of water (although I could always have more…) but its usually cold, so I’ll try to get in the habit of drinking warm and/or room temperature water. We have a tap for this at work (room temp water) but I always reach for the cold. I’ll re-think this now thanks to your comments, much appreciated 🙂

    Sorry to hear of your tough day on Sunday, those can sure be frustrating huh? Glad it was better the last few days and I hear you on the stamina. I want so badly to push through my fatigue still, like I used to be able to do, but it is nearly impossible for me now. The weather had given us a break but guess what? My office and all surrounding stores, schools, etc. are shutdown today due to freezing rain. There is a thick layer of ice on everything here and its supposed to get worse throughout the day. It’s nice to have a quiet day indoors and not risk my safety outside, but the drastic changes in weather is getting a bit ridiculous. I just hope I don’t lose power!

    Today is the day – I’ll be thinking of you and sure all will go well 🙂
    Charlene.

  • Steve Dragoo

    Member
    February 6, 2019 at 9:35 am

    Hi Charlene – so up there when it rains it pours – snow first and then ice – nice.  Regarding water, I just typically avoid ice cold but in the morning I use very warm because the closer to body temp the easier it is on the body. I don’t like honey in my lemon but I know its’ health benefits and crushed garlic (rest 15 minutes after crushing)  so I treat them as preventive and healthy regardless of personal preference.

    Yes, tough days come and go.  I think Sunday I took too much Q10 and ALA – also slowed down the Amla temporarily because I started niacin and will add Omega 3 next week for the heart.  All that stuff combined caused my heart to flutter for a long time Sunday so I knew to back off a couple things and it’s working. Serrapeptase can initially act as a detox so that had to have added some impact – but it is really good.

    So I decided to go to the gym after my class IV consult this morning. Added 2 minutes on the bike and added a new exercise for 45 – 50 minutes today but was out of breath a lot. That makes gym 2; IPF 0 so far this week and plan to go again on Friday.

    The doc wants too much for each treatment so he will talk to Andy again today and go from there,  I am looking at other options but it seems they are none close to me. Stay safe and well.. – Steve

    • Steve Dragoo

      Member
      February 7, 2019 at 4:01 am

      Hi Charlene,

      Regards the lemon/lime, I drink two big glasses every morning and it is still strong that way so if you only drink one glass the combo of lemon/lime together will be too strong. Yes, there are several more good reasons to have it in the morning besides PH reset.  In the Philippines, we have a strong small lemon that looks like a lime called calamansi and I like it much more.  Typically we get about 100 pieces per week for about $2.

      Everything I have read or watched about serrapeptase sys you can’t go wrong with it.  I will increase the dosage soon because it may well help the heart as well as dissolve dead protein (scar tissue) in at least certain areas. I remember it being an ingredient in the Wei formula and I think the clinical trial in Korea may have some of it in it too.

      The doctor yesterday wanted too much money and did not have the exact laser Andy referenced but he did say it would work.  I found another doctor though and will have the first treatment Monday at half the other’s price but it is 1.5 hours round trip while the first doc was .5 hours. If this works as others have stated, I pray the treatments will help me while in the Philippines.  I’ll look for treatment over there but very doubtful it is anywhere close to me.

      Driving yesterday I could almost see the buds on the trees – almost. Around here you start cutting the grass in late March and stop late November.  Hope I get to do that next season.  Stay well and please share how it goes with the morning juice.  Steve

  • Charlene Marshall

    Member
    February 7, 2019 at 8:44 pm

    Hi Steve,

    Nice to hear from you, as always, thanks so much for writing! How much do you lemon or lime do you put in the two glasses of water? I doubt I’ll be able to drink two full glasses, as by the time I get ready for work and get downstairs to the kitchen, I’m usually rushing to get out the door on time. Right now, I often drink half a glass and can commit to drinking a full glass with a lemon or lime in it I think, just not sure I could do 2 glasses. Maybe I could save the second one for when I get to my desk? In any case, I’m curious to know if you use a whole lemon or lime in the two glasses you drink in the morning. I am certainly intrigued by this!

    I tagged you in a post from Moira asking about Serrapeptase. Were you able to see it? I didn’t have any personal experience to offer her, but I knew you would so I hope you don’t mind 🙂

    Oh wow, I am so glad you found another doctor Steve, albeit further away, I know that can be a bit of a pain. Have they already agreed to treat you on Monday? That is excellent. How often will you get a treatment and thus have to commute the 1.5 hours? I’ll keep my fingers crossed that you can find something similar in the Philippines!

    Oh I am so jealous of almost seeing the buds on the trees. There is literally about half to an inch of thick ice on everything right now. This was the second day schools and agencies were shut down due to freezing rain. Unless it thaws quick, it is going to be such a mess to get around outside for a few days. It looks so dangerous! People were sledding and skating in the street… nothing more Canadian than that! Here is hoping it goes away soon though. Send some of the almost-spring weather my way 🙂

    Talk to you soon,
    Charlene.

  • Steve Dragoo

    Member
    February 8, 2019 at 9:07 am

    Hi @Charlene-Marshall,

    Personally, I take two 16 oz glasses full, with a small struggle sometimes. So if I took one glass probably would do 1/2 lemon  & 1/2 lime – to taste.  I have a manual cone-shaped squeezer w a 12 oz reservoir and after squeezing I pour hot water and fill it, then add room temp water to the glass and fill to what I want, next and because I have 2 glasses I fill the reservoir, which was only partially used, to get the 2nd glass.

    Yes – I responded to Moira and I would recommend serrapeptase to anyone for a wide variety of reasons.

    Yes, laser starts Monday at 3x for 3 weeks; 2x for 3 or 4 weeks; weekly thereafter until I go to the Philippines. I’ll be paying $50 per session.

    Weel the buds here where me imagining they are almost here but it has been unseasonably warm a few days so maybe it will happen. When there is ice outside, I have two choices; stay inside until it melts or STAY inside until it melts…  So be safe IPF does not give us a fast recovery time from an incident.  Talk soon… – Steve

  • Charlene Marshall

    Member
    February 8, 2019 at 2:41 pm

    Hi Steve,

    Thanks so much for getting back to me on this. I am going to try the large glass of water with lemon/lime starting tomorrow. I think I need to “reset” my system a little bit because my stomach has been quite off since this virus/cold that I’ve had! I will set out some water on the counter tonight so it gets to room temperature ahead of drinking it 🙂

    Thanks again for writing, and hope your Friday is going well. I am excited for you to start laser on Monday, please keep us posted on how it goes! I’m sure we’ll connect on the forums over the weekend!

    Charlene.

  • Steve Dragoo

    Member
    February 8, 2019 at 3:54 pm

    Hi Charlene – hope you have success with it.  A couple of observations are: use hot water but not boiling and mix w rm temp water so you can drink it slowly, also wait 20 minutes before you eat or drink anything for maximum effect. Try it consistently for 1 week and you will definitely notice the difference but don’t drink it too strong. Happy safe warm joyful weekend… Steve

  • Charlene Marshall

    Member
    February 9, 2019 at 9:56 am

    Hi Steve,

    I tried the warm water with lime and lemon this morning, and quite enjoyed it actually. It was nice to just sit and slowly sip away at it, similar to a tea. Do you know what I thought about also adding to it, which Id’ be curious to hear your thoughts on? I wondered if adding a drop of peppermint oil would be helpful and tasty too? I know it is very good for inflammation and many other properties, and I use a high-quality, therapeutic grade oil that you can ingest. I wonder if it would make the drink even that much more enjoyable. Thoughts?

    Charlene.

  • Steve Dragoo

    Member
    February 9, 2019 at 10:27 am

    Hey Charlene – Glad you like it and giving the juice a double purpose for calming and thoughtfulness. Me? I’m too utilitarian so I drink to finish and go on to the next thing in the morning.

    Peppermint may be just fine and has many beneficial properties. A little real honey is seriously useful, too. Thanks for letting me know.  It is an important 10 year routine for me.  – Enjoy your weekend. – Steve

  • Charlene Marshall

    Member
    February 10, 2019 at 8:28 pm

    Hey Steve,

    Did you have a nice weekend? Mine was very short, as if the way weekends tend to go…

    Quick question for you: did you get any nausea when you started the lemon/lime water routine in the morning? I was fine the last two mornings while I was trying it but this afternoon I seemed to have a very randomly upset stomach (nausea, nothing else) and a bit of dizziness. The only thing I’ve done differently is introduce the water in the mornings, unless of course this could be some other type of virus starting? I’m keeping an eye open for other symptoms, but maybe its a normal thing to expect. I enjoy it, if I can continue to tolerate it 🙂

    Thanks in advance for any thoughts you might have regarding this…
    Charlene.

  • Steve Dragoo

    Member
    February 10, 2019 at 9:20 pm

    Hi Charlene – Yes I can get slight nausea with the juice in the morning but it disappears fast too – less than a minute.  If too strong just add a little hot water.  Also, this is resetting your system every morning and can take a while to get used to. If you can check your PH a couple times because some meds may change it and of course diet.  Coffee is very acidic and may have a late day affect but not sure about that one.

    Typically this is a morning drink first thing with nothing else for 20 minutes. So if you drank in the A.M. I would not associate afternoon issues to it. I take no medications except metformin for diabetes but will be able to slow that down soon and probably stop altogether in a few months. Of course a bunch of supplements but no noticeable impact on my stomach – celery and parsley really help if I do and I still enjoy sweat on the forehead hot food.

    Yes, I had a busy weekend and start a second job on the internet Monday but look forward to laser treatment #1!  Hope your weekend was peaceful. Warmer weather is on its’ way! – Steve

  • Charlene Marshall

    Member
    February 11, 2019 at 8:29 pm

    Hi Steve,

    Thanks so much for getting back to me on this topic. I did try the lime water again this morning, as I am starting to really enjoy the routine and didn’t seem to have the nausea. I’m wondering if it is still part of this virus I’m fighting? Unfortunately my colleagues have also all had it and said sporadic nausea is something that has come with a cold/flu virus they’ve had. Trouble for me is that I never really know what nausea is related to, because it could be connected to so many meds. Anyways, I’m glad the warm lime water is something I am enjoying so much right now!

    How did the start of the second job go for you today? I briefly saw your post on laser therapy and was so sad to read it didn’t work out. I’ll reply to that thread momentarily as I’m curious to hear more about it (we can email privately if you’d rather, or you don’t have to share either, totally upto you). Talk to you soon and hope you’ve had a nice Monday. We’re bracing for another winter storm warning that has been issued…

    Charlene.

  • Karl

    Member
    February 16, 2019 at 7:59 am

    Fear is a common cause of poor decision-making regarding exercise. But it can be mitigated by joining an exercise facility with certified trainers who are also certified in pulmonary diseases.

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