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    • #18192
      Brittany Foster
      Keymaster

      We have had a stretch of a few good days here where I live in New England. I know a lot of people here are from areas where it is warmer more times of the year than not. But in Rhode Island and New England weather, it can change pretty drastically. I end up feeling a lot more pain in the heat and when it gets really humid out. Usually I feel more bone pain in the heat. I sometimes will wake up feeling like I have an ache, especially in my hips and joints like my knees. I also experience chest pain more especially in the humidity when it gets harder to breathe. To help with some of this, I make sure to take my extra dose of lasix if needed. Sometimes the extra water weight just adds more stress to my overly exerted body. Another thing that has helped is using my bipap during the day to give my lungs a break. This seems to help with the chest pain and discomfort that I feel when it gets harder to breathe in the hot weather.

      Do you experience different pains or a higher level of pain in the hot weather? Where do you notice the pain usually is located? What are some of your remedies or things that help relieve this?

    • #18197
      Colleen Steele
      Keymaster

      Great question Brittany! My son hates the heat and even post-transplant he still does. We live in the Seattle area and he appreciates the cooler weather and loves the rain. I think is dislike for the hot and humid stems from what you are asking, he has and still does feel more pain in those conditions. Hi breathing always worsened too! I think even his zipper scar still aches when it gets too hot and the fluid retention that you mentioned probably has something to do with it. Oh my gosh, add prednisone to high humidity and the pain intensifies.

      To believe it or not he often adds heat to the heat. He swears by heating pads or corn bags. Have you ever used the corn bags? A friend makes them and they can either go in the freezer or the microwave. They give off a nice sweet smell when heated as opposed to the strong scented kind stores sell that for obvious reasons, he can’t use. I mentioned putting them in the freezer too, so he does use cold sometimes too. It just depends on wear the pain is. If it’s his chest or back he prefers hear, other joints if often uses cold.

      The hot days often trigger migraines too. Do you experience that?

      • #18207
        Brittany Foster
        Keymaster

        Hi Colleen,
        I totally feel for your son and everything that you are talking about him going through. I know that it’s hard! Especially if you have added medication like you said about the prednisone or other meds that might make you bloated or cause any type of retention. Those types of hot packs sound familiar ! I remember my mom having one for her neck when I was a kid and I can remember that smell. It almost smelled like oatmeal to me LOL. I think those are the same hot/cold packs that you’re talking about though because it kind of had a sweet smell to it too and it wasn’t so overwhelming to the senses either.

        I do experience more migraines during the day when it gets really hot out. I have heard this is because of the effect of the heat and the warmer weather on the blood vessels and making them dilate. I always get a pulsing type headache right at my temple that is relieved by a really cold pack pressed right at the pressure points on my head. I also put cold packs on my hands and bottoms of my heat to help with migraines too. Just a little trick I picked up over the years!

    • #18217
      Jen Cueva
      Moderator

      I do think the humidity because it’s moist air makes my bones and joints ache more. For myself, it is like when it’s rainy and wet . I do know from working prior to PH that the wet and damp air affects our bones and joints.

      I find that the heat causes an increase workload formy heart and the extra diuretics too, I tend to have increase in chest pain as well. I also have an increase in leg pains, I tend to contribute it to the increased swelling from the heat . When I have the increase in swelling, my legs feel tight and I think that pressure and heaviness is what causes the increase in pain for me.

      I tend to keep my legs and feet elevated as much as possible and stay indoors as often as I can. I do use a muscle relieve cream ( with no odor ) that helps some. I know that many herbal sprays and remedies can help those pain if they are on your legs, arms, etc..

      I have used heat and cold [email protected], I think the one I have is made of rice. I never heard of a corn one. Do they smell like popcorn when you heat them? I hope that your son can find the relief he needs when y’all have your hotter days this summer. It’s often difficult to enjoy summer when it’s so hot. You and Brittany both live in areas where y’all often have cooler weather, so I imagine that drastic change is hard for the bodies it adjust.

      • #18227
        Colleen Steele
        Keymaster

        Jen, the corn bags have a sweet smell to them but not overwhelming. I guess it does smell like popcorn. I’ve seen the rice ones in stores but I’m not sure where you can buy the ones filled with corn. A family friend makes them for my son. I think the other thing about corn vs. rice is that the corn bags are a little heavier, which my son likes. The added pressure helps the pain, kind of like pushing on your forehead when you have a headache.

        • #18234
          Jen Cueva
          Moderator

          I think that I would like the corn bags. It does make sense that they are heavier. Does your friend make and sell them, Colleen? I’m interested in getting one, if not I will check Etsy as they usually offer things such as that and everything else. Message me privately if this is something your friend sells.

          Thanks again!

        • #18240
          Brittany Foster
          Keymaster

          I can definitely see how the pressure in combination with the heat or cold would be helpful for sure ! I’d like to know if she sells them too so DM me or send me a message to let me know 🙂

        • #18245
          Colleen Steele
          Keymaster

          I know she has never sold them but I will ask her. Knowing her she will just make you one or in the least I can find out how she makes them and give you the details in case you know someone who sews.

      • #18239
        Brittany Foster
        Keymaster

        Hi Jen,
        I know you must be used to the heat more and have probably learned ways over the years to beat the heat ! The humidity also causes a lot of leg pain for me too. Jshally it swells my veins and makes my legs look like I have varicose veins. Do you ever notice this popping out in your legs or hands of the veins? Usually a ice pack will help to make the veins not swell and hurt as much.

        • #18253
          Jen Cueva
          Moderator

          Hi Brittany, I do notice my veins in my legs will swell up and bulge like I have varicose veins. Ice definitely does help the swelling as well as elevating my legs for me. I do like warm heat as far as pain relief, at times I rotate ice and warm packs. Do you ever try rotating ice and heat or a warm pack?

        • #18263
          Brittany Foster
          Keymaster

          Hi Jen,
          For me, the heat brings the veins more to the surface. This actually has been a trick that the children’s hospitals have done for me because I am a really hard stick when finding a good vein for an IV. They end up putting some warm blankets wrapped with heat packs on my hands and arms and this brings the veins up so they don’t need to “go fishing” for a good one lol!

        • #18270
          Colleen Steele
          Keymaster

          Brittany, yes, that is what they have always done for my son too. Recently a nurse suggested that he use hand warmers on his way into clinic or the lab so that by the time he is there the veins will already be popping. Such a no brainer, I can’t believe I hadn’t thought of doing that in all these years! Another thing they sometimes do is fill a glove with hit water and have him hold it to his hands for a while. One place stopped doing it though because it was considered a burn risk to children.

          Did you notice I say hands in regard to his lab work? We don’t even have them try the arms anymore, hands are always the best bet.

        • #18276
          Brittany Foster
          Keymaster

          Colleen,
          I feel like I am the exact same way as your son in regards to having to use my hands for good veins. Sometimes during any labwork or something they will comment and say “your veins seem to roll or hide” I’m like “yea, they are probably hiding under all the years of scar tissue!” They usually cringe when I tell them to use my hands because they think it will hurt, but it hurts a lot more to have them dig for a vein vs just getting one in the hand (even if that means going into a vein in the thumb) this is how they got sedation into me before my last surgery. I didn’t even know I had access at the thumb. They have even accessed a vein in my groin before just to give medication.

    • #18285
      Jen Cueva
      Moderator

      Same with my veins , they also use heat packs to bring my veins out from hiding. Lol

      I know that scar tissue doesn’t help. They often use my hands as well. Never, have they ever used my thumb, Brittany! Ouch! I have had midlines inserted on hospital stays because they quickly run out of veins. Once they suggested my foot, that was no real quick! Have you had a foot IV yet?

    • #18603
      Libby
      Participant

      The heat make my legs and feet throb/ache. I, too, get the bulging veins. I think my feet swell just the smallest bit. I always thought it was just a random thing….is this PH related?

    • #22472
      Brittany Foster
      Keymaster

      Libby, I’m not sure about the reason behind the swelling for you, but I know that for me it is related to the poorb circulation in my body that has to do with the heart and blood flow to the extremities. Definitely something you should bring up to the doctor if it becomes necessary.

    • #22474
      Colleen Steele
      Keymaster

      Libby, as Brittany mentioned, definitely bring this issue up with your doctor. My son experienced the same problem with heat. He had problems with swelling to begin with due to PH, but when heat was added it made the symptom worse and it was sometimes painful. I can’t begin to tell you how many times he was checked for clots when the pain got really bad. Thankfully, he was never diagnosed with one but it’s something doctors take very seriously and not just assume it’s heat induced discomfort.

    • #22488
      Brittany Foster
      Keymaster

      Colleen,

      Exactly ! I have learned not to just assume anything. Usually one of the signs of a clot causing the pain is if the pain is one sided. When it starts to impact both sides or both legs then usually my doctors aren’t as concerned or they think that it has to do with my circulation. One of the remedies for this or something to provide some relief is to ice my legs and keep them elevated as much as possible, especially when the weather starts changing and on the really warm and hot days. The humidity makes it worse too. I can remember having awful swelling of my legs because of that.

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