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    • #15482

      Unfortunately, a common symptom of living with idiopathic pulmonary fibrosis (IPF) is joint and muscle pain due to chronic under-oxygenation. As my disease progresses, I am finding that my pain is more frequent and intense than ever before, unless that is just part of the aging process: I am another year older after all (since today is my birthday) … just kidding 🙂

      Kidding aside though, I do find I have a lot more general discomfort in my muscles and joints than I ever remember, and I don’t like taking additional pain killers to help alleviate this. Topical pain relievers appeal more to me then medications, but I often wonder what is in those more common topical pain reliever rubs (like Voltaren or A535) that I am putting on my skin, the largest organ in our body. I recently had a conversation with my cousins about this and voiced that concern. They are both wellness advocates for doTerra, an essential oil company, and encouraged me to try their rub which is a lot more natural than the over-the-counter topical pain relievers.

      I have to admit, this pain reliever cream has helped reduce my pain more than any other topic rub I’ve tried before. When I asked them why this is, their answer was that the oil in the cream helps repair the cells in our bodies, versus just mask the pain by providing relief. While I trust my cousins completely, sometimes I wonder about the credit we give something as small as an essential oil. Regardless of why it works, I’ve really found the DeepBlue topical relief cream from doTerra effective in helping reduce my joint and muscle pain. And in my opinion, if it works then its going its job! Personally, I also like that I know the ingredients in this cream are wholesome and natural.

      Please note: I am not endorsing/promoting this product, the intention behind writing this forum post is to simply let others’ know what topical cream has been effective and helpful for me in reducing joint and muscle pain as a patient with IPF. Please feel free to discard this information, or inquire more about it as you see fit. 

      Do you have anything topical that is particularly effective in reducing pain as a patient living with IPF/PF? 

    • #15511
      Chuck Harrison

      Hi Charlene , and a hap , hap , happy birthday to ou 🎉🍰
      Topicals ! Yes I did mention that I use them . Now where I live is in the middle of Amish country ( catturaugus county NY ) anyways they make a cream or paste I guess you would call it , it’s a mix with cayan pepper in it , the more pepper the more heat . It does help , I just took a nasty fall 2 wks ago and bruised my shoulder pretty good , I use that and it’s not bad with a deep rub . Other than aspercream and the Amish rub that’s it .
      I wanted to mention to you something off topic , I find that at times I find my self a tad rebellious , meaning I will cancel doctors appointment if I start feeling overwhelmed , or if I just get sick and tired of all the meds I take just to start the day and end it. Question have you or any of forum members have or do rebel ? Sometimes for me it gives me a take charge of my life kinda thing

      Your friend ,
      Hope you enjoy your day ,

    • #15528

      Hi Chuck,

      Thanks as always for writing, and so appreciate your birthday wishes! I had a wonderful day, much less eventful than last year which was welcomed. I spent it how I both wanted and needed, which is a first for me and I am grateful that I did!

      Oh wow, I hadn’t actually heard of cayan pepper being added to a cream for topic purposes but that does make sense. Does it give the same effect of an over-the-counter pain reliever, where it goes hot/cold (sometimes just cold) to help with muscle discomfort? I’ll have to keep that in mind, especially if you say it works, as I have a base-type cream that my Mom got me, very plain and scent-free which I need lately and I could probably add the pepper to that I would imagine. Neat idea!

      Hmm, you definitely have a relatable point for me regarding the rebellion comment. I actually just did this for some of my rehab appointments, simply because I was overwhelmed/tired/sick of feeling “sick and tired” and basically wanted to yell screw it! and rebel against all the therapies I’ve needed. I also, for once, wanted to save the money I’d spend on this therapy ($120/session) on something for me, not on a therapy because of my lung disease. All these factors included, yes, I did cancel the appointment. I have a vacation coming up next week and I wanted to use the money for that instead, so I think this was an act of rebelling for me. Sometimes it’s all just too much, isn’t it? I definitely can relate to your desire to rebel sometimes! I’d be curious if other members of the forum also experience this? Please let us know…

      Hope you’re having a nice week Chuck. I have two big fundraisers coming up this week, so I am a bit overwhelmed in preparing for them, but should be online again lots after they’re both done on Saturday.

      Take care,

    • #15538
      Chuck Harrison

      Wow ! 😎 Vacation ! Very nice I wish you a great time on your escape from it all , and stay healthy please !
      I’m sure there are those out there that because of different circumstances ” rebel” you have the same reasons I have when that happens to myself .
      How do you put that out there so I ( we ) can let others know their not the only ones .
      Yes the Amish ointment does help at times , like anything else it’s just a bandaid for the more real reason , but I like it !
      Have fun this weekend ! I would love to go to something like that !
      You have the best day possible ,
      Your friend ,

    • #15575

      Hi Chuck,

      Great to hear from you – sorry about my delayed response. I just finished two big fundraiser events, which have been consuming my time over the past few weeks. I am happy to be back online and a bit more “present” now. How has your week been?

      Yes, I am excited to leave for vacation with my Mom this week. We are going on a trip to NYC – she’s never been, but I’ve been lots. I love NYC at Christmastime! It won’t be a warm vacation, but definitely an escape from it all, as you say, which is what I need right now.

      I think you’ve raised a good topic here for a forum post re: the intentional rebellion about our illness. I think I’ll make it into a post so that others can contribute to it, if you’re okay with that? I’ll reference our discussion and then maybe we can see how others deal with that desire to rebel against IPF to feel a bit more in control. I’m really curious to hear what others have to say about this, good topic idea!

      I leave this coming Thursday, but I’ll chat with you before then I’m sure. Hope you’re getting the beautiful sunshine like we are here today… its uplifting my spirits for sure!


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