Viewing 12 reply threads
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    • #28808
      Di
      Participant

      Hello there, im Di and new to the forum

      My dads just been diagnosed with IPF last week, but has had constant severe neck and shoulder pain since December, we now think it is linked.

      Starting today on CBD oil and cream , does anyone else use these for IPF

      Thanks Di

    • #28818
      Sam Gilmore
      Participant

      I have had neck pain for several months now. I use a lotion called Tei-Fu by Natures Sunshine it does help some. My pain comes and goes I dont know if IPF has anything to do with it or not. I have had IPF for 3-4 years and the pain started a few month ago.  I talked to my Dr  and they dont know. So I am dealing with it as best as I can Mine is mostly at the base of my neck. Sorry I dont have much to help. Take care,

    • #28825
      Jill
      Participant

      A massage can make a world of difference. The stress and tension this disease can cause for many people can not be underestimated and leads to tight muscles which if ignored lead to pain, especially in the neck and shoulders.

    • #28828
      Steve Dragoo
      Participant

      @dwhetton13

      Hi Di,

      Welcome to PF News. There are several different forums here that might help your dad.

      Massage does help and so does a hot shower. Is he on O2? What are his O2 levels?  That can impact neck/shoulder muscles.  If he is on bed rest then he should try to set up in a chair frequently. Lastly, this is indeed a potentially stressful disease – diet, water, exercise, spiritual walk may all be beneficial to him.

      If you have any questions – ask… Steve

    • #28832
      Di
      Participant

      Hiya Steve

      My dad isn’t on anything yet, he starts on medication 14th june nobody has mentioned O2 to him so I assume his levels are ok for now.

      He has started rubbing Cbd cream into the pain, which he reckons is helping.

      He has had one massage but wasn’t keen I’ll try and get him to go for another. Thanks for the advice its much appreciated

      • #28833
        Steve Dragoo
        Participant

        @dwhetton13

        Hi Di,

        If he has a pulmonologist s/he should have taken his O2 with an oximeter – they are cheap at Amazon/Walmart. Maybe the doctor could recommend physical therapy.  I went through about 4 months of PT and it helped.

        Thanks,

        Steve

    • #28835
      Steve Blake
      Participant

      I am 75 years old and was diagnosed with IPF in 2012.  Earlier this year I had shoulder and neck pain and my Pulmonologist referred me to Rheumatologist.  I was diagnosed with an autoimmune disease known as Polymyalgia Rheumatica which is treated with prednisone.  Once treatment was started I had immediate relief.

      • #28876
        Jerry Eaton
        Participant

        9 years is along time to live with IPF according to what I’ve read. What medicines, exercising etc have you used?

        • #28877
          Steve Blake
          Participant

          My progression has been very slow.  I did not take any medication until 2018 and also was prescribed oxygen at 2L for sleeping at night.  I only use oxygen in the daytime if active, exercising or out and about.  Also started Ofev at the same time.  I also have Asthma and Polymyalgia Rheumatica.  Prednisone for the Poly, Symbicort, Singulair and Ipratropium Bromide/Albuterol Sulfate inhalation solution for the Asthma. Prilosec for GERD.  I tell people I am a walking drugstore.  I walk 30 minutes a day on the treadmill using 5L of O2.

    • #28836
      Di
      Participant

      Hiya Steve

      Thanks so much for the reply, we will mention this to dads consultant.

      My dads 76 years old.

      Thanks Di

       

      • #28841
        Steve Dragoo
        Participant

        @dwhetton13

        Hi Di,

        PT showed me some ideas on breathing exercises and frequently monitored my O2 on light exercising – go at my own pace.  I have had IPF (initially diagnosed as ILD as I was in Manila at the time) since October 2016 and just turned 72. I am a veteran so I used the VA system and my pulmonologist referred me to PT that understands lung diseases. It helped

        Thanks,

        Steve

    • #28844
      Christie
      Participant

      Hi all, thanks for great suggestions to help Di and her dad. I’ll add a few… as stated, massage is helpful, but look into therapeutic massage specifically. Relaxation massage or Swedish won’t really treat the root of the tension. Massage with cupping (looks wild but is super effective!) might be good for this. Also accupuncture. As for creams, as an athlete I have tried aaaalll of the topical pain relief options and have found DoTerra Deep Blue rub to be the best. CBD gel can be helpful too but in my experience, the relief did not last long enough to justify the price tag. My husband also got me a purcussive massage gun to use at home that seems to help with knots. They’re available on amazon or sporting good stores. Best of luck!

    • #28845
      Di
      Participant

      Thanks so much Christie for your advice.

      Dads reluctant to go for a massage, but i will look for a Massage gun

      Thanks Di

      • #28855
        Tammy
        Participant

        What causes the pain in the neck and shoulders? What does it feel like

        • #28875

          Hi @tammyjbell1972

          I think the pain really depends on the source and the person dealing with it. This thread is for people to share their experience and try to find out what might be causing the pain, but folks don’t seem to have an answer to your question of why. Keep reading back and check the forums for previous threads/pages of information about this.

    • #28858
      Di
      Participant

      Not really sure what causes the pain, but my dad gets excruciating pain every morning until his 2 tramodol tablets kick in.

      He reckons the CBD cream is helping though

    • #28865
      George Beck
      Participant

      My PF was diagnosed in 2019, but is progressing slowly. I did have neck pain for a year and a half which has recently almost disappeared. On one occasion it was severe, but usually just an annoyance. I tried all of the creams and patches without success. I didn’t think to link this to PF. My diagnosis was either muscle strain (prescription wasn’t helpful) or arthritis. I think I found the answer in this forum!

      • #28879
        Steve Dragoo
        Participant

        @georgebeck16

        Hey George – I’m sure you know this but it is worth mentioning for us all to remember. Check your O2 and see if it drops at any certain time of the day.  Low O2 can affect our organs and that may (emphasis on may) cause the kidneys to struggle processing lactic acid.

        When my O2 plummeted last year I had severe pain in my neck and back so much so it hurt just to be touched.  Because of that event, I occasionally take a small amount of electrolytes.

        Stay well,

        Steve

    • #28869
      Jim Wiggins
      Participant

      Di,
      Please get a second opinion on your Prednisone prescription. I was diagnosed with IPF 2 years ago and placed on it for a year. It weakened my bones and I ended up with 13 compressed vertebrae, 5 surgeries, and the loss of 5 inches, resulting in constant pain in back and rib cage on top of my pelvic bone.

      I hope better things for your father.

    • #28884
      Di
      Participant

      Thanks Jim

      Dad isn’t prescribed any Prednisone only Tramadol for pain relief

      We bought good quality CBD cream to rub on his Shoulder which is definitely helping

      Thanks Di

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