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    • #29780
      Maureen
      Participant

      Anyone have any suggestions about body aches. I wake up during the night with them or it will hit during the day. It feels like getting the flu- with body aches. Yes I have been checked for COVID-negative. Do others have this?

      Thanks in Advance

      Maureen

    • #29784
      Madonna Kennedy
      Participant

      maureen ,I have a similar situation as joint pain like a break..only on one joint.then it goes away by the next day and then another site flares up and then goes away….for example I have had a broken ankle twenty years ago that left a lot of metal in it . i could feel it hurting .put on socks ‘ your  feet are cold.’   but as i got up my good foot felt like it had been in a wood chipper. i couldn’t walk I fell down in real pain  got to bed and when i awoke it had cleared up  but two days later the part  where my thumb meets my hand was killing me ..but then it stopped..it feels lupus-like perhaps sorry for your body aches can you take Motrin or Aleve P.M.

      a very OTC suggestion but you could rub some sort of muscle relaxation ..Blue Goanna….

      • #29788
        Maureen
        Participant

        Madonna, that sounds very painful. Mine feels like the muscles ache. No joint pain. I use CBD oil several times a day. It does control the full body aches. Just not sure this relates to PF that’s why I am asking.

        Hope today is a pain free day for you Madonna!

    • #29921
      Rebecca Bloch
      Participant

      Hi Maureen,

      From my experience my body aches that feel like a precursor to the flu are caused by food sensitivities. Preservatives, artificial flavors, the ubiquitous “natural flavoring”, and corn starch are all triggers.  I also notice that along with the achiness is muscle stiffness.  You might want to start noting what you’ve eaten recently when the achiness appears.  Also, how is your magnesium level?  Last but not least, epsom salt baths are wonderful for relaxing muscles and helping with muscle aches.

      And one last thought…is muscle pain a side effect of any medications you’re taking?

      Take care,

      Rebecca

      • #29955
        Maureen
        Participant

        Rebecca, thanks for sharing! I will take your advice & start monitoring what I’m eating to see if there is a correlation. I didn’t think of that!!

         

        Stay safe!

        Maureen

    • #29951
      Patricia
      Participant

      Maureen,

      I ached everywhere prior to my diagnosis, shoulder, wrist, arms, legs, back, etc. I had two episodes, one more severe than the other, of seriously painful muscle cramping in my thigh which eventually radiated to my lower leg. Was burning around my knee during sleep and when I woke could barely walk resulting in other injuries to knee and leg from twisting as I attempted to get around and get out of shower/bath. Scan never identified anything more than mild arthritis.

      Once I started using oxygen for sleep and anytime I am out and about walking or moving around all aches have subsided. I truly believe now all the aches were due to poor oxygen saturation.

      So, I guess I would ask if you are using oxygen.  If not get a sleep study and look into your need for oxygen even with exertion during the day.

      Patricia

      • #29954
        Maureen
        Participant

        Thanks Patricia for sharing your experience. My O2 (oxygen) has registered normal. What was/is your readings? I take CBD & it is very effective to ease the pain. I need to wait till January for a 2nd CT scan to confirm the diagnosis. I do have a Cpap that I use every day.

        I am so grateful that you shared your experience. I don’t feel so alone on this journey.

        Stay safe!

        Maureen

    • #29962
      Donald Salzberg MD
      Participant

      Hi Maureen:

      I find it amazing how so many different sets of symptoms affects each of us. I too have this “all of a sudden” sense of fatigue/body aching and sense of head fog often. For four months (2017) it plagued me everyday and I had to often cancel 20-25 patients a day and go home. No shortness of breath issues so I was clueless I had a pulmonary problem. My crappy diet has not changed in decades and these symptoms all started a year before an eventual diagnosis of IPF. You say you want to “confirm the diagnosis” with a repeat CT scan. Have you had a VATS open lung biopsy done yet? The CT scan will confirm the fibrosis (abs whether it’s worse) but the biopsy is the key to differentiate IPF from other ILDs. Until i had my biopsy they felt I had HP based on my symptoms and HDCT. HP is hypersensitivity Pneumonitis. The biopsy proved otherwise. Treatment of HP and IPF is very different. “Our” symptoms are tough to describe. I’ve been thinking about CBD or something of the sort (?Delta 8 THC) as I go from feeling great to feeling debilitated in a matter of a minute. For 4 months I thought I was just burnt out/depressed from my the stress of my medical practice.
      So the bottom line is: you are not alone. I am convinced this is NoT food related as I’ve never felt like this prior to 63 years of age. It also never correlates with my oxygen levels (I’m usually at 95). Don Salzberg MD

      • #29963
        Patricia
        Participant

        Maureen,

        My oxygen saturation is normal just sitting still,  but will drop into the 70’s within a minute or two during the 6 minute walk. Nobody allows me to walk longer than that during walk… before they stop me and strap on oxygen, so hard to know how low it might go.
        My sleep study was about 3-4 years ago and ended up being an at home study as opposed to in the sleep lab. But, I was diagnosed with mild sleep apnea. (No apnea episodes where I stopped breathing) but 34 episodes where I had what is called hypopnea. My lowest O2 level while sleeping was 85. Total time below 88% was close to 1 hour.

        I do not use cPap but do use oxygen. You may need oxygen with your cPap machine. cPap to keep your airway open and oxygen to keep your O2 level up.

        When I went on Ofev, the pharmacist asked about joint or muscle pain. My pulmonologist did as well when I started seeing him. So body aches and muscle cramping is very much a part of IPF and a sign you are getting insufficient oxygen to muscles and joints. Even brief periods below 90% saturation can cause damage.

        Patricia

    • #29964
      Patricia
      Participant

      Maureen,

      One more thing. Someone asked whether you had a lung biopsy. I want to make sure you know that open lung biopsy is not needed for diagnosis now. There is something called Envisia Genomic Classifier. This is done on tissue taken from the lungs during bronchoscopy. Then,  in conjunction with HRCT pulmonologist can diagnosis IPF without risky and invasive open lung biopsy even for those without typical lower lung pattern on HRCT. If classifier comes back negative for IUP pattern then is another matter, but mine was positive for IUP pattern despite inconclusive HRCT.  Open lung biopsies can entail long recovery times. Avoid, if possible.

      Patricia

    • #29965
      Bill S
      Participant

      Hello.

      Another interesting topic of IPF symptoms.  I was diagnosed late 2020 and started OFev early 21.  I have been successful taking the 300 mg daily with the usual side effect which I manage with Imodium.  Strangely, I began the golf season walking 18 holes for my exercise and would also walk a couple three miles with my wife for recreational exercise, no problem.  Blood O2 was always 98-99, no respiratory issues.  Then, mid May, I started cramping while walking golf or with my wife.  18 holes went to 9 using a cart to finish.  Burning numbness would start in my buttocks, radiate down the back of my legs and end under my feet so bad that I would no longer feel where my feet were on the ground.  By August I was using a cart for 18 holes.  My back has never hurt during this time.  All symptoms disappear within minutes of sitting.  My breathing was never labored.

      My PCP says neuropathy, peripheral neuropathy ( me, yes OK) I am not diabetic.  MRI shows some arthritis and disc compression and the neurosurgeon wants to fuse two segments of my lumbar spine (me, not OK).

      My feeling is that there are too many symptoms to this IPF and/or PF, and ILD that mask themselves as symptoms of other diagnoses.  I have an oximeter and have used it after a 6 minute walk with my O2 remaining 98-99.  A 6-7 minute walk for me is 1/3 mile and also the first sign of cramping.  I plan to take my oximeter golfing and walk until I can’t and then see what my O2 reads.

      • #29979
        Christie
        Moderator

        Hi @williamschumann Bill, as a casual medical nerd (not a doctor) I would agree with Dr. Don on the lumbar disc compression or spinal canal stenosis. Probably not related to IPF, but certainly painful and probably not helped by lower oxygen levels. You can have spinal issues with no pain in the area of injury. Referred pain in the legs is quite common with lumbar/sacral injuries. Can vouch for that fact from personal experience, and my time working at a chronic pain clinic.

        Something that might also be worth investigating is PMR (polymyalgia rheumatica). It’s an autoimmune condition that causes primarily hip, upper leg, and shoulder and cramping. It can occur anytime, for no reason. With IPF, if there is an autoimmune link there (this is just a theory I like to consider from time to time, again, not a doctor), then perhaps PMR could be triggered as well. Do some research and if it seems to fit, check in with a doc about it. It’s generally a quick-ish fix with prednisone as it is an inflammatory condition.

        Hope this is helpful. If not, I hope you at least find some relief soon are able to enjoy your time on the golf course!

        Christie

    • #29966
      Donald Salzberg MD
      Participant

      Good AM Bill and All

      I read your reply and I’m glad you are able to handle 300 mg per day. I still randomly have off days (ie diarrhea) but doable. What you describe about pain in the buttocks that radiates down certainly sounds more like lower lumbar disc/sacral disc compression. That does not seem c/w “peripheral neuropathy!”  You can have peripheral neuropathy without diabetes btw. Not that you have to have neurosurgery right away but steroid injections and PT may be an option first. Again I’m a former Ophthalmologist but those symptoms do not sound related to your IPF. As many of us are no longer spring chickens—we often can have other issues such as arthritis, disc issues, etc that are not from the IPF. We all try to do blame symptoms on something such as IPF, foods, stress etc. As we are all genetically different beings, we manifest diseases and side effects differently. Neurosurgeons cut by nature. A good orthopedist should set you up with PT and/or cortisone injections.

    • #29974
      Bill S
      Participant

      Dr. Salzberg, Thank you for your opinion.  It reinforces my reluctance to jump on an operating table.  Yes, disc compression most likely but puzzled by the lack of lower back pain.  Thanks again!

    • #30001
      Bill S
      Participant

      Christie and Dr. Salzberg,

      Thank you both again and I’m setting up a consult with an experienced PT whom I know.

      Bill

    • #30004
      Donald Salzberg MD
      Participant

      Hi Christie/Patricia/Bill

      I think Christie brings up a good point about PMR (Polymyalgia Rheumatica). It’s typically in the 60+ age group. Aching/pain/weakness of proximal muscles (upper legs/arms/shoulders. Elevated ESR (also called Sed rate) typical. When associate with new onset headaches—over the diagnosis of Temporal arteritis is overlooked. But the pain Bill describes sounds more like a sciatica/lower lumbar/sacral disc bilge or a spinal stenosis issue and not PNR. PMR patients often feel fatigued with poor appetites and just feel lousy. More muscular than joint issues. Good luck. A good Orthopedic doc is helpful and then PT or maybe steroid injections

      Doctor Don

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