• Restless Leg Syndrome Common Among IPF Patients

    Posted by Charlene Marshall on May 13, 2020 at 4:08 pm

    Oddly enough, as I was considering my next topic to post here on the forums, I came across a recent article on Pulmonary Fibrosis News called, Restless Leg Syndrome Prevalent in IPF Patients, Study Finds. I thought to myself, “I’ve certainly experienced that, and I wonder if others have as well”?

    This was something I was dealing with the other night while trying to fall asleep. I couldn’t stop wiggling my legs as they were uncomfortable and preventing me from resting comfortably and falling asleep. I didn’t really have a solution to alleviate the discomfort either, so I just waited it out. Thankfully, I have some topical rubs that tend to take the discomfort away, even if it is through distracting me with other sensations, such as hot/cold. This was all I could think of in the moment to help me rid the feeling of restless legs, and of course, my mind raced that it would also compromise the quality of my sleep which is reiterated in the article.

    Is this something you experience as a patient living with IPF/PF? 

    If so, do you have any good tips on alleviating the discomfort it causes? Please share with us if so!

    Charlene Marshall replied 3 years, 9 months ago 5 Members · 10 Replies
  • 10 Replies
  • bob-rawlins

    Member
    May 14, 2020 at 2:47 pm

    I have some of this RLS quite often and at night.

    i started taking some Vitamin D and Iron supplements as suggested by my doctor and it seems to have them be more far and few between.

    but, unfortunately it does make hard to sleep at night.

    But I don’t get it as often now after about 2 weeks into taking the supplements.

  • Charlene Marshall

    Member
    May 14, 2020 at 8:21 pm

    Hi Bob,

    Thanks so much for getting back to us on this and sharing your experience! I am also on a vitamin D prescribed dose (50,ooo IUs) and an iron supplement as well. I may change when I take them, and see if that helps…. good to hear yours are more few and far between. Are you on a prescribed vitamin D dose, or an over the counter amount? I know each person on here on vitamin D varies 🙂 Thanks again for writing and sharing this with all of us.
    Charlene.

  • jerry-genesio

    Member
    May 14, 2020 at 11:47 pm

    Charlene: My mother had IPF and RLS, I have both as well, and my younger brother has RLS and probably has IPF also. I agree with those who suspect they are both genetic and hereditary. I’ve been taking Ropinirole 0.5 mg QD for several years and it has helped a lot. Ropinirole, sold under the brand name Requip, is used to treat Parkinson’s disease and RLS. The RLS rarely bothers me much now and no longer disturbs my sleep.

  • patricia-dubose

    Member
    May 16, 2020 at 10:51 am

    I read that study too and couldn’t believe it! My husband has had RLS as well as IPF for years. He’s never been able to find anything to help,  and he’s also been on 50,000 IU ergo calciferol /week for several years now.

  • Charlene Marshall

    Member
    May 16, 2020 at 10:53 am

    Hi Patricia,

     

    Thanks for writing, though so sorry to hear your husband suffers from this as well. Anything that compromises our sleep as patients with IPF are things we don’t need, as the disease does this enough for us. I wish I had a solution to offer, I think I may ask my physician about this next time I see him and see if there are any suggestions he has. Bob’s suggestion about vitamin D and iron seem promising too! I’ll let you know if I find anything out, and hopefully the RLS subsides a bit for your husband. Thanks for connecting and happy Saturday!
    Charlene.

  • Charlene Marshall

    Member
    May 16, 2020 at 11:07 am

    Hi Jerry,

    Thanks so much for sharing this! I’ve never heard of the Requip medication before, but something worth exploring since it has been so effective in helping you. Thanks again, I am sure this will help many others in addition to myself. So glad it is helpful to you, and you’re rarely bothered by RLS anymore – we, as IPF patients, don’t need anything further compromising our sleep. Take care, Char.

  • karen-martin

    Member
    May 19, 2020 at 4:55 pm

    Restless legs, as with leg cramps for me have responded to drinking about 4-6 ounces of tonic water at night. Gentle stretches before bedtime also helps, as does wearing socks to bed. That last one was a bit hard to get accustomed to at first, but I found when I investigated that my feet and lower legs were a bit cool to the touch when I was having issues and the socks took care of it. I wish you all luck with this. Karen

  • Charlene Marshall

    Member
    May 23, 2020 at 9:30 am

    @casey

    Thank you for sharing the tonic water tip again Karen! I had heard of this prior, as being something that helps with restless leg syndrome, although I completely forgot about it. It’s been quite uncomfortable for me this week, so I am going to give this a try and keep my fingers crossed that it helps! Thanks for the reminder 🙂

  • karen-martin

    Member
    May 24, 2020 at 8:02 am

    Hey, Charlene. Glad to help. I found that restless legs almost always lead to leg cramps for me, so the sooner I drank the tonic water the better it seemed to work. It is available in both regular as well as diet forms, if that matters to anyone out there. Good luck with this. I know how aggravating it can be. Take care!

  • Charlene Marshall

    Member
    May 27, 2020 at 7:17 pm

    Thanks so much Karen. I had my friend who did groceries for me pick up some tonic water, thanks to our amazing forums. I’m glad to have this on hand for the next time restless legs hit… and I know they will. Really appreciate it and will report back to the group to let you all know if it worked for me! Fingers crossed 🙂 Take care, Charlene.

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