This topic contains 26 replies, has 7 voices, and was last updated by  Jen Cueva 1 month ago.

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  • #20378
     Colleen Steele 
    Keymaster

    Personally I haven’t had experience with restless leg syndrome (RLS) but I’ve heard that for some, this condition can become intolerable. RLS is considered a sleep disorder and since PH patients often have difficulties resting, I was wondering if anyone has had to deal with this disorder. If so,does a bad PH day often turn into a bad RLS night for you? Please share your experience with the symptoms and helpful tips on how to manage them.

  • #20388
     Brittany Foster 
    Keymaster

    Hi Colleen,
    This isn’t something that is necessarily directly related to my PH, but it IS something that I think it related to my central sleep apnea. I often have difficulty sleeping at night especially because I haven’t been able to use my bipap with the degree of reflux that I have been having. But I usually wake up in the middle of the night in a full sweat with the blankets tightly wrapped around my legs and completely off of my boyfriend because of all the moving and kicking that I do. I also wake up in a full sweat which has been happening more often with a really bad headache. These were my symptoms PRIOR to my BIPAP use and sleep study which is why I really need a treatment for this motility issue pretty soon because my sleep and overall health suffers when I don’t get enough sleep.

    • #20547
       Colleen Steele 
      Keymaster

      Brittany, I can only imagine how much your challenges during what should be your restful moments, affect you throughout the day. When I researched restless legs syndrome I was surprised to read that it falls under a sleep disorder, but I realize now how that makes sense.

      • #20637
         Judie 
        Participant

        I know this sounds rather simple but it may help. I went through a period with restless legs related to histamine waking me up, I also have mastocytosis, so I can relate!
        A friend who occasionally deals with restless legs and when it occurs she says it’s horrible , she will put compression knee high socks on and it gives her a lot of relief. She doesn’t use them to prevent restless legs but to stop it once it occurs.
        Judie

      • #20649
         Brittany Foster 
        Keymaster

        Judie,
        Thank you so much for the advice! I can see why compression socks might help in this situation especially if it helps to improve blood flow and circulation. I wonder if compression socks are okay to use while sleeping? For me, personally compression socks actually make me get really tingly in the feet. I know it is supposed to RESTORE circulation but for some reason the ones that I have used have maybe been too tight or just not the right brand. I had exercise testing that showed poor blood return and a drop in my blood pressure in the legs with activity so the blood flow was limited to my other extremities and the rest of my body with exertion which is a big factor in why my oxygen levels drop too. The heart just has to work way harder to circulate blood which could make someone feel like they are working out while sleeping hence the restless legs. Interesting !

      • #20688
         Colleen Steele 
        Keymaster

        @jady1958 thank you for bringing up compression knee high socks. I don’t have experience with them but I know people who use them and they have a wide range of purposes, including to help prevent blood clots. @robin-webster you mentioned the weighted blanket but have you tried the compression socks?

        I would just encourage everyone to speak to their doctors, especially a cardiologist before trying them.

  • #20389
     Brittany Foster 
    Keymaster

    Hi Colleen,
    This isn’t something that is necessarily directly related to my PH, but it IS something that I think it related to my central sleep apnea. I often have difficulty sleeping at night especially because I haven’t been able to use my bipap with the degree of reflux that I have been having. But I usually wake up in the middle of the night in a full sweat with the blankets tightly wrapped around my legs and completely off of my boyfriend because of all the moving and kicking that I do. I also wake up in a full sweat which has been happening more often with a really bad headache. These were my symptoms PRIOR to my BIPAP use and sleep study which is why I really need a treatment for this motility issue pretty soon because my sleep and overall health suffers when I don’t get enough sleep.

  • #20525
     Robin Webster 
    Participant

    I do have restless leg syndrome, but I don’t experience it every single night. And I’m afraid I don’t have many tips on managing it, because I doubt that I’m managing it well. Mine isn’t just movements of my legs during sleep but also an involuntary cramping and jerking feeling as I am trying to fall asleep. I’ve actually massaged my legs so hard during this that I’ve unintentionally created awful bruising. And the constant rubbing of my legs also makes my hands start to cramp. My weighted blanket does help quell the feeling, but I haven’t been able to use it during the summer, because it’s too warm for me. (I’d like to say I’m back to using it since it’s October, but the “feels like” temperature here today is 94, so that hasn’t happened yet.)

    • #20531
       Brittany Foster 
      Keymaster

      Robin,
      I also can’t wait for the cooler weather to happen here so I can get better nights sleep. The heat and hot weather makes my legs even worse too. Does the temperature effect yours and the cramping that you get in the legs? I have awful leg pain in the heat and the blood just does not get to the lower extremities well enough and I end up swollen and having to ice it and massage it. Hoping the weather where you are can also cool down a bit so you can get some type of relief from your blanket!

      • #20539
         Robin Webster 
        Participant

        The “feels like” temp is 94 here today, but it’s supposed to turn cold by Friday. I hate to say I’m looking forward to some cooler weather, but once hubby covers the pool, summer’s over for me even if the temperatures persist. I miss the sunshine, but I won’t miss the humidity. I am looking forward to using that blanket again. Only bad thing about cool weather is that it quickly turns into COLD weather, at least where I live. And that brings its own set of challenges for us. I’m sorry your legs bother you so much. I don’t think I could stand to ice mine. I’ve been shivering for months now, no matter how warm the air is. Not sure if that is connected to poor circulation or to the autoimmune disease of the liver or to the iron deficient anemia. I’ve started iron infusions, so I suppose we’ll soon see if that helps resolve it.

      • #20546
         Brittany Foster 
        Keymaster

        Robin,
        I am cold often too so I really feel your pain with that and the struggle to just get warm some days. My legs and feet always turn blue so easily, even if I’m not on them for a long time. I have always attributed this to poor circulation and my doctors always end up saying the same thing. Lately my red blood cell counts have been pretty low though so I’m wondering if it has anything to do with being anemic too. It’s hard when you can’t exactly pinpoint the problem though because then you don’t know what you should do about it and how to treat it. I hope those infusions give you some relief from symptoms. Do you feel a difference after getting them?

      • #20551
         Robin Webster 
        Participant

        Brittany,
        I’ve only had one infusion so far (five days ago) and another is planned in two days. The nurse told me most people start to notice a difference about two weeks after the infusions are complete. Fingers crossed. Since you also struggle to get warm sometimes, I think you’ll get a kick out of this. The room they put me in to get the infusion (which took 90 minutes to be brought up from the hospital pharmacy and then another four and a half hours to drip into me!) was just 66 degrees. I kept telling them I was freezing cold. They eventually offered me a little “blanket” as thin as a dish towel, and it wasn’t even heated. I think they were the only hospital department I’ve seen in my life that didn’t have a blanket heater.) My fingers were so cold they couldn’t even get pulse-ox readings from them when they checked vitals every hour. lol! This week I’m going prepared! I’m wearing a winter coat and taking mittens!

      • #20644
         Jen Cueva 
        Participant

        Great point, Robin! I knew I saw this topic and was looking for it to post. I never thought I had RLS but I DO know that just before my iron infusions, it always seems to be worse. I started mine last week and go back on Tuesday. I do think the infusions last week seemed to help some with my legs at night.

        It certainly can be a real pain and another reason to keep us awake at night. I am hoping that as y’all mention, the cooler temps will help, too. I tend to rest better if I am a tad cooler with a light blanket versus being hot. It is supposed to be high of 83 here tomorrow, today it is in the 90s. We shall see. I am planning to make chili in my Instant Pot, so I am hoping they are right on this!

        I have heard an old wives’ tale from my Aunt. She says to put a bar of soap, yes, like Dove, LOL under the mattress on your side of the bed. She swears this helps with RLS. It certainly may be worth the try, now that I finally remembered it as I was typing. Hehe

        Robin, good luck with the rest of your infusions. I have mine done at the Cancer center and yes, it is freezing in there. I asked for 2 blankets as they do NOT have warmer ones, either! What is up with that? I hound have remembered from the last ones that all the chemo patients bring a warm fuzzy one.

    • #20550
       Colleen Steele 
      Keymaster

      Robin, from what I have read, RLS has a wide range of severity in patients. It can come and go, as it does with you, and the symptoms range from manageable to life altering because of the frequency and discomfort.

      I’m embarrassed to say the first time I watched a commercial about RLS I didn’t take it seriously. I had never heard of it and it didn’t sound serious to me. I even felt a little aggravated that it was receiving attention. Then a friend started having serious problems with RLS and this educated me on how awful this disorder can be. I’m sorry that you are dealing with it!

      I see how the weighted blanket topic has come up again. There seem’s to be so many benefits to having one. I really need to start researching and get one for my family!

  • #20552
     Robin Webster 
    Participant

    Colleen,
    I believe that’s true about the severity range. The first time I’d even heard of RLS was after my first sleep study. It was one of many things listed on the summary report. I shrugged it off and said, “I don’t have THAT!” It’s been nearly a decade now that I am seeing the effects of it. I don’t know if it runs in families or not, but my mother has it so bad that when she recently bought a new set of sheets, within two weeks she had worn holes in the lower half of the flat sheet from kicking her feet back and forth during her sleep.

    • #20731
       Jen Cueva 
      Participant

      Oh @robin-webster, your poor mom. She must have been really having discomfort and pain. That sounds horrible.

      It is funny that you ask if it is hereditary or familial. My dad has trouble sleeping and it is mostly due to his legs bothering him. I have mentioned to his doctors that he may have RLS. The doctor tried medication to help the RLS and he did get some relief. Unfortunately, it was short-lived for him. When I started having issues, I researched and Mayo offers some information relating to this.

      Here is a part of what I read.

  • #20573
     Colleen Steele 
    Keymaster

    Oh my gosh Robin, your poor mom! Are there treatments for RLS? What, if anything, can be offered to help with the symptoms?

  • #20810
     Margie Novak 
    Participant

    Here I am again… I too suffer from RLS…. it can be really hurtful at night Usually it is in my right leg and that is the leg that I have had many blood clots in so I don’t know if that is why. The last time I was in the hospital and mentioned it they prescribe a drug (forget the name) it is a small pill that they usually give to people with Parkinson’s. It helps. Sometimes I buy over-the-counter leg pills. Also, my mom used to say lack of a vitamin so eat a banana!! Have tried that also. I may not get the RLS often but when it happens, it can keep you awake. There is ever a duel moment when you have PH… always something or other! Hang in there PH fighters!! We can win this battle!!! xoxo

    • #20814
       Brittany Foster 
      Keymaster

      Hi Margie,
      always so good to hear from you here. I am sorry that you deal with RLS on top of everything else that you are going through in a day. It seems like it’s always just “one more thing” to add to the list. As far as eating bananas goes, sometimes potassium deficiency can cause the legs to cramp and become restless. There are other things that potassium is hidden in like avocados ! Have your vitamin levels been tested through bloodwork at all?

  • #20851
     Tim 
    Participant

    I have RLS and it’s severe like a painful ache. I’ve found the one thing that really helps is magnesium supplements.

    • #20854
       Colleen Steele 
      Keymaster

      Tim, good point about the magnesium. My husband takes it for leg pains and my son is on it two times a day for a variety of reasons. Like with any supplements, everyone should check with their doctor’s first but it is a good one to look into.

    • #20856
       Jen Cueva 
      Participant

      Great reminder, Tim.
      I had the last that I bath melts, etc from sending me some magnesium flakes. She said some mix those with water and spray on their legs after a shower or before bed. I did try it several times which I thought It helped a tad but was too sticky on my legs. She does make a recovery bath bomb that is used by athletes, I bought for my hubby who cycles. But, last week I used his last in and it felt great soaking in there and my legs did not keep me up at night.

      So often, our RLS and Leg pains can be due to Electrolyte imbalances and vitamin deficiency. I hope that you find some relief.

      • #20879
         Brittany Foster 
        Keymaster

        Jen,
        I haven’t used any types of bath bombs yet even though so many people seem to love them. What one do you use that has helped with your legs? what specific brand is this? Does it seem to help with your husband’s recovery after his workouts too? What exactly is in it that would help with this? Some essential oil infused bath bombs are great for this too.

      • #20896
         Jen Cueva 
        Participant

        Hey Brittany,
        Yes, the bath bombs help me if I soak with them. They also have helped my hubby after a 60-mile cycling ride and other cycling days. They do have magnesium in them as well as peppermint and other essential oils. I have even used a half of one, kind of hard to do but the owner said to try. I did, it crumbled then I stored the other half in a small ziplock.

        I buy them from Etsy as Lush is so much more expensive for me. This shop offers many specials and the lady is so sweet. I will share the Etsy link here. I hope that is OK, so you can see what I am talking about. She has some others that I love too. One of my guilty pleasures, HeHe

      • #20901
         Brittany Foster 
        Keymaster

        That’s great, Jen! Thank you for sharing the link with us. I know that some bath bombs that I have heard others use end up turning their skin color!! I would NOT want one like that. Looking for more of a natural one without the dye that could potentially stain the skin. The ones that are just smelling nice and have a light color to them have been the best ones that I have seen.

      • #20907
         Jen Cueva 
        Participant

        Brittany, this one did not stain my tub or my skin. I have used some in the past that have stained my tub, more than my skin and I hate that, too.

    • #20880
       Brittany Foster 
      Keymaster

      This is interesting, Tim. When I am in the hospital with a bad migraine the doctors also do infusions of magnesium. It helps with blood vessels and maybe this is why it also has a positive effect on the legs and RLS? Just a thought from my own experience with taking with for migraines along with an anti-inflammatory for pain and hydration. It’s quite the combination.

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