• Dale Darling posted an update 4 years, 3 months ago

    Who, it could something as simple as your back or spine might be a little causing that discomfort when you sneeze ? only a guess ? when I have sneezing attacks lately they go 10 to 12 sneezes. Don’t know if it’s the PF or just from hay in my barn, been around hay for 40 years. Have PF for 5 1/2 years now and my Dr. just put on Oxygen when I walk around, will be trying that today. I do sleep with 2LT and sometimes in the evening in my Lazyboy chair. I did have a sleep study and have a mild case of sleep issues. Told the Dr. No mask for me, I sleep great, told if my sleeping gets worse then maybe. Can’t sleep doing one of those test, it’s was a very restless night of sleep, couldn’t wait to get home for a short nap before going to work

    • Hi @dale-darling,

      Thanks for getting in touch, it is great to hear from you! I appreciate everyone’s thoughts on what could be causing the sneezing discomfort – it is so unusual for me. Thankfully, it is a bit less now (although still present) so I am wondering if I was fighting something off when it was at its worst? It could have been something with my back or spine, you are correct. I am still dealing with significant whiplash following a motor vehicle collision and every time I see the specialist, he mentions how out of line my neck and spine are so maybe it does have something to do with that.

      How did your trial with the oxygen go for you? Do you feel you do indeed need it when you’re walking around?

      Hope you’ve caught up on your sleep now 🙂 I wouldn’t be able to sleep well during those studies either!

      Kind regards,

      • Sorry for the slow reply, didn’t see your posting Charlene. I had the sleep study, I have mild sleep apnea sorry don’t know how to spell it. Hated the sleep test, never again, terrible time sleeping. I will not wear a mask either, if i die i die not knowing LOL I went to the U of M Hospital Pulmonary last with week with my CT Scan. That;s all they do in a section of the clinic is PF patients. The Doctors approved me for that special drug Esberrtt ? can’t spell that either. Been approved by my insurance and the drug should arrived next week. Once I figure this site out better i will do a better job with my replys How you are doing okay, have good day.

        • Also for to add that the doctor did tell me that i need oxygen while walking, so I did got a portable concentrator ,it seems to help some, but it;s rough trying to do to much while walking, but I do recover quicker with it than without having one, Just waiting for the new meds to arrive.They also want me to do pulmonary therapy, I going to check that out next week, don’t think I can do this now ? Talk to you later

          • Great news about your portable oxygen concentrator (POC) Dale! Which one did you get? I find my POC really helpful as well, just a bit heavy for my liking. I wish it was a little lighter! Pulmonary rehab was really helpful for me, so if you get the chance to do it and you feel like you can manage it, I’d definitely recommend it. Find out more information first and then make your decision.

            Chat soon!

        • Hi @dale-darling, great to hear from you – thanks for writing!
          No worries about the slow reply at all, I totally get it and just am hopeful that things are going well for you. I’ve heard the sleep tests are terrible due to all the electrodes placed on you. Did you have those? Hope your appointment at the UofM went well, and that is EXCELLENT news that you’ve been approved for Esbriet. It is even better news that your insurance is covering it, as so many people on this forum and that I know struggle to get it covered so I am really glad to hear it will be arriving this week for you. Here is a large topic thread about people who’ve started Esbriet and their experience with managing side effects, different ways to consume it, etc:https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-esbriet/#post-13798

          I hope it goes well for you, and I am really glad to hear things are going alright. I am also doing okay thanks, just trying to navigate some tough stuff right now, although unrelated to my IPF diagnosis. Thanks for asking and I do hope you continue to do well 🙂


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