This topic contains 19 replies, has 8 voices, and was last updated by  Brittany Foster 3 months, 2 weeks ago.

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  • #18604
     Libby 
    Participant

    I have always gotten purple/blue feet when I’m cold due to poor circulation. I believe it’s called rheinauds (sp?) disease? However, it used to only happen when I was cold but I have been noticing lately that despite it being very warm outside (75 to 80 degrees) my feet have been turning purple while I’m sitting down for more than about 10 minutes at a time. I’m wondering if this is a sign of worsening PH? My face and hands never turn blue/purple.

  • #18607
     Ally 
    Participant

    Mine too it’s Reynauds syndrome now I get purple lips hands feet and nose lol. It’s over a 100 degrees outside but I feel them and they are cold . At my last pulmonologist appointment they told me my PH was worsening😔

    • #18615
       Jen Cueva 
      Participant

      Ally, I’m sorry to hear that your PH is progressing. You mentioned adding a new medication soon. I hope that the new addition will help you some.

    • #18674
       Jay 
      Participant

      I brought some circulation socks for my mom and it is helping her for sure. But yeah we live in Texas and even on a hottest day my mom would have cold fingers and toes when we have the ac on. We keep it at 76 but even that makes her feel cold. I always have a pair of gloves near her. I also give her a massage with mustard oil (this gets warm when you rub) helps her circulation. Rubbing it on her legs , hands and chest before she takes a shower helps.

      • #18680
         Brittany Foster 
        Keymaster

        Hi Jay,
        I can relate to the feeling of always being cold even when it’s warm out. That’s a good suggestion and I’m glad you are helping her the best you can with massages to help improve circulation. I did massage therapy for awhile too and it helps with over all circulation!

  • #18614
     Jen Cueva 
    Participant

    Hi Libby, I know several PH patients who also have Raynaud’s. My lips and legs turn blue at times, I was tested and was told that I didn’t have Raynaud’s. Mine is from the lack of oxygen and occurs in hot and cooler weather, too.

    I would be sure to let your doctors know if you notice it more frequently.

    • #18618
       Brittany Foster 
      Keymaster

      This syndrome has actually been something that was mentioned to me even when I was a younger kid. I couldn’t STAND the colder weather and no matter what I did my feet just would NEVER get warm. They almost feel like they have frost bite in the winter time if I don’t prepare myself with tons of socks. Sometimes my hands would hurt so bad from the going from really cold to really hot feeling (mine can change from blue to red pretty quickly). I have been told that it is because of my circulation being so poor to my extremities so it’s really no surprise to me that people with PH would develop this as a symptom when the circulation starts getting slower or isn’t as good towards the peripheral of the body. Definitely something to mention to your doctors though . Do your oxygen levels drop with this too? When mine are very blue my oxygen also drops pretty drastically with exertion. I get cramps easily in my hands and feet too.

  • #18616
     Jen Cueva 
    Participant

    Here us a link from Pulmonary Hypertension News which includes Raynauld’s as a symptom of PH. Symptoms

  • #18628
     Libby 
    Participant

    Thank you for the responses gals! I apologize for a bit of a duplicate topic, as I missed the Cyanosis thread 🙂 Yeah my doctor is aware that I get purple feet but it seems relatively new that it continues to happen with the warmer weather now too. I live in Washington and we are only just now experiencing some weather that resembles summer and my feet are still purple! haha. I haven’t noticed my oxygen dropping with purple feet, though honestly it happens so often that I don’t think to check my oxygen at the time.

    • #18638
       Brittany Foster 
      Keymaster

      They tested my peripheral blood flow one time in the hospital by having me do an exercise test with blood pressures at my legs. The pressures actually decreased with activity instead of increasing and they realized that I do NOT have good circulation to the lower part of the body. It’s not caused by peripheral artery diseases, more just the vascular changes that my body has gone through over the years to try to compensate.

    • #18643
       Colleen Steele 
      Keymaster

      Libby, I live in WA too! I’m happy we are finally having some summer weather but I know my son prefers the chilly/rainy weather. Ever after transplant he feels healthier when it’s colder than when it’s hot. As Brittany mentioned, try and check your oxygen when you are experiencing Cyanosis and keep a log that you can take to your doctor. I know that is an inconvenience to do. My son has blood pressure problems due to kidney disease and he has to take a record his blood pressure more often than he would like.

      • #18647
         Brittany Foster 
        Keymaster

        Blood pressure readings and oxygen readings definitely would be helpful at the doctor’s appointments ! Good to just have for a record and see if you can notice any patterns yourself too. I keep a medical journal with symptoms that are concerning and things that I would want to bring up at my appts I highlight or put a sticky note in that page. It’s like cliff notes for my body hahaha!

      • #18655
         Jen Cueva 
        Participant

        Great tips, Colleen. My blood pressure is always low so I rarely check mine. I do have a pulse oximeter that I use and I make notes ( or screenshot) of my oxygen saturation as well as my daily weight.

      • #18659
         Brittany Foster 
        Keymaster

        I do the same thing Jen. It is important to see patterns in weight and fluctuations in o2 and blood pressure too. It could give us insight into why we are feeling the way we do and what might be contributing to our symptoms. When a lot of my health conditions feel out of control, this is something that I actually LIKE monitoring and taking the control over. It’s like I am able to analyze my own data and see why I had more energy at one point of day vs another. It’s pretty interesting when you’re able to sit down with it and look at it.

  • #18664
     Mandy 
    Participant

    I have had the corners of my lower lip blue for many years.. someone told me this about 10 years ago and I brushed it off, recently a friend and I was lifting weight at the local YMCA and she said you better stop your bottom lip is blue this was prior to my diagnosis with PH and I just said it must be my iron level as I am a anemic and have sleep apnea. I just hope this doesn’t mean I have had PH for this many years already and am in the advance stages of this disease.

    • #18669
       Brittany Foster 
      Keymaster

      Mandy,
      I would definitely bring up this situation when you see your doctor on Friday. Lifting weights or being active while this happens is something that they will take seriously. I would check your oxygen levels with exertion also. This is one of my signs that my oxygen levels are low and usually I appear this way after doing too much or being on my feet for too long in the day.

  • #18767
     Sherry Berry 
    Participant

    My lips, hands, and feet turn blue if I stand up. My O2 drops so quickly. It really frustrates my Pulmonary Dr. He said he just couldn’t understand why I drop so much with movement. It’s been this way for 11 years I guess. Since I started having pneumonia on a regular basis. As long as I keep my oxygen at 8 liters while I’m moving and take it slow I’m okay.

    • #18774
       Brittany Foster 
      Keymaster

      Sherry,
      Mine drops SO QUICKLY too! Within the first like 30 seconds of walking it can go from 98 at rest to low 80s with just minimum activity, including just getting up and walking to the bathroom. When this happens in the hospitals, the nurses usually start running in and then my mom is like “oops, she just go up to use the bathroom” ! I am glad they are so alert to it, but my oxygen really does have a hard time. The only time it goes back to normal is when I’m sitting or resting and I just can NOT sit and rest all day long.

    • #18793
       Jen Cueva 
      Participant

      Sherry, you’re not alone, although I’m not on 8 liters, my oxygen drops quickly. It can change from high 99s to 80s just from getting up and going to the bathroom. I never knew it until one hospitalization, I went to do a sponge bath and the nurse came in as my heart and oxygen were going crazy.

      At times at the doctor, sitting with my oxygen on I’m almost 100 %, so it looks great on paper until I get up and start moving. That’s actually how they started my oxygen years ago. I was at a pulmonary appointment and they wanted me to walk with a pulse oximeter, I started walking and it started dropping they had me sit down and started me on oxygen. That was the day, I came home with my own oxygen.

      • #18824
         Brittany Foster 
        Keymaster

        Jen,
        It’s honestly so remarkable how similar our stories are. The same exact thing was how I was diagnosed. As soon as they walked me and did an ambulatory pulse ox test they brought on my symptoms and SAW how quickly my oxygen dipped just from going from my room to the end of the hallways which couldn’t have been more than 100 feet away (if that) I was immediately brought back to my room, kept on bed rest until they did further exercise testing and breathing testing that confirmed the drop in oxygen levels and I went home with a script for oxygen and have been on it since. Getting oxygen was so hard and to say it was life changing and shocking is an understatement, but when all is said and done I’m glad that they found answers for the things I was experiencing and took me seriously once they realized how quickly things changed for me with my o2 levels with such a small amount of exertion. This was one of the scariest moments of my life but in a way it allowed me to breathe a breath of fresh air knowing, “okay they actually SEE something that is explaining the way I’m feeling and I’m NOT CRAZY!”

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