This topic contains 18 replies, has 8 voices, and was last updated by  Charlene Marshall 4 weeks, 1 day ago.

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  • #21054
     Charlene Marshall 
    Keymaster

    It is becoming hard to decipher which of the pains or aliments my body feels are attributed to my diagnosis of idiopathic pulmonary fibrosis (IPF) or, whether it is something else. We’ve talked a lot about the IPF-related chronic cough that causes discomfort for many of us, including sore muscles in our chest, upper back and shoulders. Overall I feel like I have an increase in pain and general discomfort since my IPF diagnosis, especially in some of my muscles. I can only link this to being chronically under-oxygenated due to this life-threatening lung disease.

     

    Recently I’ve been experiencing quite a bit of muscular pain in my legs, particularly the back of my calves. My friend who has his doctor of chiropractic medicine actually did a quick assessment and he said while IPF (and subsequent low oxygen levels) could be the culprit of some muscular leg pain; he was also able to tell that I was very low on electrolytes. He sent one of his assistants to go get me some Gatorade in order to replenish those electrolytes, although I have no idea why I’d be so low in them in the first place.

     

    All this suffice to say that our muscular pain can very likely be attributed to IPF, but having low electrolytes or being dehydrated in general can make things worse. I’ve also had a very busy summer, particularly the last two weekends where I was on my feet a lot. I can say with confidence though, that the frequency and intensity of muscle pain in various parts of my body has generally worsened since my diagnosis of IPF.  Would you agree?

     

    If you have regular muscle pain since your IPF/PF diagnosis, what do you do to relieve it? 

  • #21063
     jaime L manriquez 
    Participant

    Hi Charlene, nice to write you again, yes you are right, I suffer a lots of muscles pain, specially after exacerbations (heavy productive cough) on my legs and chest headaches also, after a while they goes away. Is very frustrating sometimes knowing there is no cure for this desease, Hope we can live up to use some of the new drugs that its being tested..

    best regards

    jaime

    • #21074
       Charlene Marshall 
      Keymaster

      Hi Jaime,

      Thanks for writing, although sorry to hear you also deal with muscle pain! I get the regular pain in my chest and upper back from a cough too, and the best relief for this (though, it can’t always happen right away) is a massage. Have you tried that to alleviate the muscle pain? It is very frustrating, make sure you are adequately hydrated and have good electrolyte numbers to avoid as much  muscle pain as possible. Hang in there and thanks for writing!
      Charlene.

  • #21065
     Robert Morrison 
    Participant

    Hi Charlene,

    You and I have to be brother and sister from different mothers because our bodies react to IPF the same. First, and foremost, I believe a lot of the muscle pain and cramping is a function of IPF inhibiting the oxygen to those muscles but the cramping is directly related to the medications we take. I have taken both Ofev and Esbriet (actually both now) and feel dehydration is the main problem. I drink copious amounts of water and it seems to almost completely eliminate the leg cramps. I can still get them if I’m on my feet for an extended period of time but water has stopped those middle-of-the-night cramps in my calves. I am likewise concerned with muscle pain but over time I have learned it grows throughout each day. When I get up in the morning I feel almost “normal” except for the connection to my oxygen concentrator. But as the day progresses I become less and less comfortable. I really feel this on Mon, Wed, and Fri as I do pulmonary rehab at 1:00 in the afternoon. Although the exercise is quite tolerable my muscles ache for the rest of those days and evenings. My solution is twofold. First, I do as much of my activity as possible in the mornings and then making it a point to rest in the afternoon. I have learned that many household projects that I used to do in one continuous effort have to be broken down into two or more segments. This is an easy thing to say but I found it really takes discipline to do it. If I ignore my own advice and do a project from beginning to end without stopping I can easily ruin my next two days trying to recover. And my second remedy is ibuprofen. Before my IPF I was an avid golfer and learned that if I took a couple of pills before the round it made a world of difference. Unlike a headache where you take pain relievers when you begin to feel the pain, the anti inflammatory properties of the ibuprofen work well on muscles before the pain begins. Years ago I learned that many of the pro golfers do the same thing in order to walk all the rounds they do in a normal week. I still do have my fair share of muscle pain and certainly understand your struggle, but they things I do really help me to minimize the discomfort. Good luck and God bless.

    Robert Morrison

    • #21128
       Charlene Marshall 
      Keymaster

      Hi Robert,

      So nice to hear from you, although sorry you’re also experiencing this annoying symptom of IPF! I agree that the muscle discomfort is likely due to the disease, but that the other symptoms could certainly be caused by the medications associated with this disease. I know hydration is such an important issue for many of us, and that it often helps with the leg cramps. How are you tolerating both Ofev and Esbriet? Good suggestion about doing the activities first thing in the morning vs. afternoon. I find that I am so exhausted by midday! Do you take any narcotic pain meds to help with the pain? Thanks for sharing and best wishes to you. It is awesome to hear how you’re doing.

      Sincerely,
      Charlene.

  • #21076
     Judy 
    Participant

    I am new to having pulmonary fibrosis. Been on oxygen for about 3 months. Before oxygen i was a couch potato. Now i can do things again. Prior to oxygen i had cramping on rib cage. I also have been experiencing leg and foot cramps periodically. After starting the oxygen, the rib cramping stopped until this week, when i started feeling pain on the left side. My Doctor thinks its muscle pain, but I don’t remember doing anything that could have caused. It is not bad pain just annoying. After reading about what you all are experiencing i feel more relaxed. I currently am not on any of the new medication. Currently taking low doses of prednisone. No side effects other than slight weight gain, which I hate. I have been going to pulmonary therapy and asking my Doctor to renew the prescription so I can continue for a while longer. I have really enjoyed reading all your posts. I am much older than you all so I guess I am fortunate not to have developed earlier. No idea how I got this as I did not work in a dangerous occupation nor was i a smoker. But it is what it is and I take one day at a time.

    • #21130
       Charlene Marshall 
      Keymaster

      Hi Judy,

      Thanks for your post, it is nice to hear from you, though sorry to hear you’ve been recently diagnosed. Please do take it easy and be gentle with yourself – I’ll never forget how difficult those first few months of having IPF was for me. How are you adjusting to the use of supplemental oxygen? Could the muscle pain be caused from coughing? Believe it or not, I’ve had that happen: especially within my chest and upper back area. I also still struggle to understand how I was diagnosed with IPF…. I never smoked either, and always lived in good environments. Hang in there and feel free to write any time!
      Kind regards,
      Charlene.

  • #21084
     Nan 
    Participant

    Good to hear there are others that have this. I keep asking my PT why i get so many muscle cramps, chest, legs, feet. She just says everyone gets them lol. I started taking magnesium and that seems to really help.

    • #21129
       Charlene Marshall 
      Keymaster

      I’ve heard that magnesium helps as well Nan, thanks for sharing! Do you just take an over-the-counter dose, what mg per day do you take? Thanks for sharing! I’ve heard this can also help with sleep..
      Charlene.

  • #21092
     Chuck Harrison 
    Participant

    Hi. My friend ,

    cramps cramps cramps , oh I’m so sick of them I can’t stand them . My hands but it’s my calf muscles that torture me ! They get so bad esp, my left calf muscle to the point it affect my Achilles . Well more 02 I thought the same thing and to be honest it did help at first , but about a week later it stopped no more relief .tried creams some were so so . Now where we live we are smack dab in the middle of Amish country , we are only one of three ( English ) on our road . We are good friends with many families . We got on the subject of muscle cramps and I referred to myself . They no about my plight , and are very understanding and try to do as much  as they can for Rose and I . Any way she had me try two different things  , one was called burdock leaves they are a weed that grows along the side of the road . You pick these let the dry and when you go to use them you rehydrate the leaves and put them on the area of pain ! IT WORKS ! It’s not a total cure all but takes a lot of the pain . Now sha also has a rub , I have no idea what it’s called but it is loaded with cyan pepper ( spelling  ) and the heat on your ( my calf muscle )is incredible ! I use it a lot . Now I’ll try and get the name of it , and it has an acquired smell . I know that these aren’t on the market but maybe you can do something with this info . Oh btw I finally got my scooter , I’m free !

    As always your friend

    I hope this writing finds you well

    have fun in Hawaii

    chuck

     

    Oh

    • #21131
       Charlene Marshall 
      Keymaster

      Hi Chuck,

      So nice to hear from you my friend! Sorry to hear you also deal with the muscle pain, how frustrating, isn’t it? My calves get bad quite often, and drinking lots of water helps with that, as does massage. I’m so glad to hear your neighbours have a topical solution for you – I think you’ve told me how beneficial some of their remedies have been in the past too, right? They sound amazing! Glad it is working well for you 🙂

      Also – yahooooooo re: your scooter! Be free and enjoy my friend. I’ll send you some pictures and keep in touch with folks from Hawaii as well. It is just around the corner and I am so excited.
      Charlene.

      • #21157
         Chuck Harrison 
        Participant

        i would love to see Hawaii through your eyes !

        Be safe my friend

        Chuck

      • #21159
         Charlene Marshall 
        Keymaster

        I will do my best Chuck! All my accommodations have wifi so I hope to jump online as frequently as possible to update folks on my day / how my trip is going. I leave in three weeks today, very exciting 🙂
        Charlene.

  • #21095
     Susan Howitt 
    Participant

    I get regular leg cramps but it is mainly the muscles over my ribs that going into spasms at the drop of a hat.   Odd thing Judy that is I am on oxygen and have been for 5 months now and the cramps have not relented one bit.  So happy for you that you have found oxygen helps you be more active, been not a lot of help for me, my combined conditions make it very hard for me to oxegenate my blood even on 5lts pm.  I was bitterly disappointed to find  out that it didn’t help me walk further in my mountains here, I can walk kilometres round the supermarket which is of course temperature controlled and don’t need to wear oxygen odd to say the least.  I am far from being a spring chicken Judy  lol. Long past retirement age.

  • #21132
     Charlene Marshall 
    Keymaster

    Thanks for writing Susan, but sorry to hear you experience this as well. Such a pain in the neck (or I suppose the legs and chest), right? Glad you have found a spot to walk indoors that doesn’t effect your breathing. It sounds like cooler, cleaner air helps you avoid using the oxygen? Nice to hear from you!
    Charlene.

  • #21306
     Peggy McBride 
    Participant

    My husband has severe pain “in his lungs”.   He describes it as feeling like someone has plunged a knife into his lungs and he experiences this pain all the time but it is worse when he is taking a breath. He is not allowed any pain medication because he is  a pre-transplant patient, and I understand this restriction given the need for patients to not have built up a tolerance to the pain medications which will be given post-transplant. However, his physician expressed surprise that he had pain in his lungs and stated that that was NOT a symptom of IPF. Is anyone else having pain in their lungs or in the area that feels like their lungs? He was diagnosed with IPF three years ago, but not via biopsy; his condition worsened greatly after pneumonia in July 2018.  The constant O2 requirement, chronic cough and fatigue are big problems for him, but it is really the uncontrolled pain that prevents sleeping or any kind of quality of life. Any suggestions  would be greatly appreciated.

    • #21319
       Charlene Marshall 
      Keymaster

      Hi Peggy,

      Thanks for writing about this important topic, though I am so sorry to hear your husband is having to manage pain without medications. While I understand why (like you mentioned you do) that has to be so difficult for him. What a brave man! Typically speaking, I don’t have the pain your husband describes unless I have a cold or some kind of infection. This is usually my first indication that I have something coming on – a sharp pain when I cough or take a deep breath in. In an acute situation (ie. it occurs suddenly and is intense) I think this can mean fluid in the lungs too but likely not if it occurs for your husband regularly. Did the doctor explore other options of what it could be despite him saying it’s not IPF? So sorry to hear he is enduring this. Wishing him nothing but the best, and I hope his gift of life comes soon, relieving the pain long-term for him.

      Kindest regards,
      Charlene.

  • #21307
     Nan 
    Participant

    I have burning pain in my lung when I take a deep breath. It really hurts, so much that I avoid at all costs deep breathing. My ribs hurt all the time   and worse  the with all the coughing which is why I had a CT scan that lead to my diagnosis. I read somewhere, on this site I think, about someone else who described the breathing pain as burning and I thought ” yeah that’s me”. I was so glad to read others with same/similar experience. Hope that helps. Can he try CBD oil? It helps me. All the best to you and him.

  • #21309
     Peggy McBride 
    Participant

    Thank you for your response. It is good to know that my husband is not the only person who has the severe lung pain. The doctor looked so surprised when he described it to him. We have not tried CBD oil yet;  not sure whether the lung transplant folks would have a problem with that as they do with pain medication and alcohol, neither of which are allowed.   I would love to find something that would provide him some relief. He also has several herniated discs in his back, a shoulder problem (torn rotator cuff) and hip and leg pain due to botched hip surgery. He is pretty miserable and we have not found any homeopathic cures.

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