This topic contains 9 replies, has 4 voices, and was last updated by  Wendy Dirks 3 weeks, 4 days ago.

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  • #21224
     Mark Koziol 
    Keymaster

    It seems we share Pulmonary Fibrosis Awareness Month with several other diseases or medical conditions. Chronic pain is a medical condition experienced by 50+ million Americans. I am sure we have all experienced acute or post-operative pain at one time or another, however, there are people who suffer from chronic pain on a continuous basis. I am sure some of our members can relate to how exhausting this is. Living with a restrictive lung condition and subsequently, less oxygen flow combined with experiencing chronic pain is an awful combination.

    I have been perusing several pain management websites and find them to be informative and educational. They offer access to research articles and stay focused on assisting patients with chronic pain management. In my own experience, I’ve had pain for only short periods of time for the most part. In both instances surgery was required. I chose to avoid opioids and gut through the pain associated with sciatica and the need for a hip replacement. Throughout all of this, I was glad to know where my pain was originating from. I know there are individuals experiencing chronic pain and there is no treatment available; only the symptoms can be treated. Unfortunately, many doctors have used opioids to treat the chronic pain subsequently causing another set of problems.

    I am interested to know how many members are currently experiencing another medical condition while suffering from PF. I am also curious if any forum members are experiencing chronic pain as comorbidity with PF.

    U.S Pain Foundation

    American Chronic Pain Association

  • #21283
     Linda Williams 
    Participant

    Mark Koziol – sorry, I forgot to say for OA pain only take Naproxen 500mg once about 3 times a week if rest or CBD Oil does not take care of pain.

    Linda Williams

  • #21282
     Linda Williams 
    Participant

    Hi Mark ( @mark-koziol )

    I was diagnosed with IPF and possible non Hodgkin’s lymphoma of Waldenstrom’s in May, 2018. The latter was discovered by the pulmonologist when he got results of autoimmune land back, as the IgM was elevated. Do he referred me to a hematologist oncologist for follow up with that. As bone marrow results were not elevated enough and I really had no symptoms, the hematologist oncologist  then watches labwork every 3 months. As staying stable between 4550-4750,he agreed that I don’t have to get labwork until 6 months for next time. It is called MGUS now. Just one string of protein cloning itself in my bone marrow.

    The only pain I have with either of these diagnoses is occasional rib cramping with IPF. I just get thru it and take nothing for it as it does not last that long each episode.

    I was diagnosed with osteoarthritis at age 22. Have had multiple joint surgeries, including bilateral open surgeries on shoulders and a knee replacement, three degenerative cervical discs with bulging but which causes most of my pain. Also heel bone spurs, Achilles tendonitis, and fasciatis. These can flare up occasionally and then not bother me for a while.  Wear a boot when hurting, sometimes have to get steroid. However, OA problems are just that, not lethal.

    I have a history of breast cancer, had partial mastectomy and 4 lymph nodes removed, followed by radiation after incision healed. Thank God found early on annual mammogram. Took Tamoxifen for 5 yrs after that.  So I keep on getting those annual mammograms.

    I weigh more than I should, but am not diabetic. Have been stable with BMI of about 36. Also GERD (that might have helped cause my IPF?) for at least 45 yrs. A positive TB blood test but x-rays indicate no TB. Took INH for a year 1977-78.  Around 1990.found to have high liver enzymes, which are somewhat better now, biopsied and found fatty dense liver but no cancer.

    So all in all I had always considered myself of pretty good health until coughing and fatigue and shortness of breath, called Idiopathic Pulmonary Fibrosis, reared its head. And I am doing online pulmonary rehab at home to try to slow that problem. Take no medicine for it except Symbicort inhaler, Montelukast, and Ricola original throat lozenges at the present time.  I am on 3 anti-hypertension medicines for blood pressure. Cardiologist says I do not have PH although right ventricle is a little enlarged. Ejection Fraction 55-60%.

    Hope this is the info you are looking for. Have a wonderful Full moon weekend!

    Linda Williams

     

     

     

     

    • #21303
       Mark Koziol 
      Keymaster

      Hello Linda, WOW you have been through a lot and you remain in such good spirits. I commend your tenacity. I have had some other problems as well and just like you it was the fibrosis in the lungs to ultimately bring me down. If you can’t breath there really isn’t too much else you can do. Pain sort of takes a back seat when you are struggling to breath. Take care, Mark.

  • #21342
     Wendy Dirks 
    Participant

    Hi, Mark – I don’t think I have any pain associated with my PF but I do have arthritis that bothers me occasionally. I really feel for Linda, who posted earlier. I have had scoliosis all my adult life and kept my back pain under control with yoga, which I practiced regularly for over 20 years. My breathlessness and coughing have meant my yoga practice is very gentle now and seated and my back pain is pretty severe. I saw a surgeon about 2 years ago and he told me that I needed a new back – and he couldn’t give me one. The way the back pain and the breathlessness interact means my activities are really limited. Standing or walking for any length of time means pinched nerves along my spine act up and my left leg “disappears” – I can’t feel it anymore. I can’t stand up in the kitchen for very long without severe pain so my husband does all the cooking. Between breathlessness and pain, every task takes forever – I have to stop and catch my breath or else stop and stretch my back.  At the end of the day, what can we do? Just deal with it and get on with it, really. My life moves in slow motion. But at least it’s moving!

     

  • #21348
     Mark Koziol 
    Keymaster

    Hello Wendy, I am sad to hear about your back troubles. I experienced back pain but for only several months while awaiting surgery. Thankfully the surgery went without complications. We do what we have to do. Even with all the medical problems you are having, you have a fantastic attitude. Best wishes, Mark.

  • #21349
     Linda Williams 
    Participant

    <p style=”text-align: center;”>Hi Mark and Wendy.  Thank you both for your comments regarding my issues. I am glad Wendy that you have a good husband who helps you. Have you ever tried having him rub some CBD oil on your back and perhaps on chest as well?I am seeing it advertised at Health stores in our area and even saw in lockup box at a good grocery store. I think you are smart Wendy as you have been doing yoga for so long. Just finished doing yoga breathing with my online pulmonary wellness bootcamp. On day #24 out of 42 consecutive days now. I never exercised regularly before but I will be doing something every day from now on.  There is a 50% discount right now with code of PWOnline50 making it less than $50! What a deal!</p>
    Praying you get better soon Wendy and so glad Mark you are doing well after your unilateral lung transplant.

    Linda Williams

     

     

     

     

     

     
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  • #21357
     Chuck Harrison 
    Participant

    Hi Mark ,,

    i also suffer from heart disease , rumatoid arthris ( hips shoulders and knees ) and its active , diabetes . The list is long , what do I do , I use to forms of morophin , pill and liquid , so that’s what I deal daily .

    • #21358
       Mark Koziol 
      Keymaster

      Hello Chuck, thank you for sharing your story. I know it’s hard to get going in the morning suffering with RA. Did the RA cause your PF? I am sorry you have to endure this chronic pain at this stage of your life. Best wishes, Mark.

    • #21374
       Wendy Dirks 
      Participant

      Wow, Linda – I’m super impressed with your dedication to exercise! I’m afraid I don’t exercise regularly enough at all any more. It feels as if there just aren’t enough hours in the day and I know I should make a greater effort because it’s so important. You’ve inspired me!

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