Viewing 21 reply threads
  • Author
    Posts
    • #33890
      Colleen Steele
      Keymaster

      Did you ever get the feeling you have been forgetting something- like the fact that we started a new month?

      What is on your medical calendar this month? Since we are 8 days in maybe you already had a big appointment, started a new treatment or had a procedure done that you haven’t told us about yet.

      Update us so we can support you.

    • #33900
      Jen Cueva
      Keymaster

      Hi @colleensteele, yes, time flies by faster each day, right? You’re not the only one who is forgetful, hehe.

      I have a few appointments coming up, one is another new PCP, and another is more lab work and a CT scan for my PH doctor. I’m waiting to hear back from my kidney doctor, which will be this month, too.

      How about you? Does Cullen have anything this month?

      • #33913
        Colleen Steele
        Keymaster

        Best of luck with everything @jenc. Nothing except monthly labs for Cullen.

    • #33901
      Jen Cueva
      Keymaster

      @cdvol3gmail-com, do you have anything coming up? What about you all, @tervo, @mainegal, and @traceyaustralianmigration-co-za? What appointments do y’all have this month for yourself or your loved one? I was thinking several have upcoming medical appointments/procedures.


      @jenniferbeaty
      , how are you doing, my PHriend?

      Did we miss an important date for you? Let us know how things went and how we can best support you.

      If not, please let us know how you all are doing this week when you feel up to it, everyone.

    • #33906
      Carol Volckmann
      Participant

      Thanks Jen for checking in with all us ph folks.

      Finally, finally after a nearly a year I will have the SIBO breathing test for my bloating! It really took that long to push snd keep pushing till someone stepped up – and that was our new Cardiologist !

      Also this month I have another RHCath scheduled – not looking forward to that.

      Off that subject, I thought I would bring something else that came up that others may help.

      My loving, caring husband who has hone through all my health issues – my biggest supporter, my rock. Last week he really got down, overwhelmed and depressed how much our lives have changed since I was diagnosed. Trying to comfort him wasn’t really releasing him from it all.

      He is a fixer and it cannot fix me and it finally got to him. I am also a fixer and like Dick, want to fix everything. But, as I told him how much I needed to fix it for him. I could not. By bringing this out in the open we could understand each other and move on to what we can keep doing.

      Sending love and hugs to everyone.

      • #33914
        Colleen Steele
        Keymaster

        You have big appointments coming up @cdvol3gmail-com. I’ll be keeping you in my prayers! How long has it been since your last RHCath?

        The way you and Dick are able to be open and honest with each other is beautiful – even when the topics are difficult. It sounds like he has gone through a bit of caregiver burn out. If it’s any consolation, I’ve been feeling it a bit lately too.

        I happened upon the following article recently that offers advice on how to deal with Caregiver stress and burnout.

        Caregiver Stress and Burnout

        • #33917
          Carol Volckmann
          Participant

          Thank you Colleen for your thoughtfulness and prayers.

          I had my last RHC a little over a year ago. My new Cardiologist still would like me to have another to check out more issues. We both really like her and trust her.

          Thank you for the article on Caregiving Burnout. You’re right, I do think Dick is going through some burnout. I am making a copy for him so he and I both can talk about it. Thank you again.

          I have noticed in passed forums where you have admitted to holding off medical appointments for yourself. I just hope you are taking yourself. You give so much of yourself to so many.

          Thank you again dear friend. Sending you my prayers and love ❤

          Carol

        • #33920
          Colleen Steele
          Keymaster

          @cdvol3gmail-com the both of your have such a strong relationship so I think this goes without saying – Dick’s burnout is not your fault no more than having PH is yours. Caring deeply for someone can be exhausting but love is worth all the ups and downs. My thoughts are with you both.

          You caught me – I’ve been neglecting my medical appointments again. I am at least 5 years behind on some important ones. Maybe someday I will get them scheduled.

        • #33923
          Carol Volckmann
          Participant

          FIVE YEARS! Oh doctor, heal thy self. I cannot wait to hear you have scheduled your appointments 🤗.

          Dick has been my best male friend since we met in 1970. Our love has and is very special.

          Special hugs to you!

           

           

      • #33928
        Jen Cueva
        Keymaster

        Oh, my sweet PHriend, @cdvol3gmail-com, I’m sorry to hear about the struggles that you and Dick are both dealing with. It’s certainly not an easy feat, yet you both have been riding this wave for over 15 years!

        Talking about these concerns in the open is a huge part of how we continue to work on our relationships. Manny and I also tend to be honest about our problems when one of us is feeling burnout. What does he do to keep busy? Is he still working on the house? I know for Manny, keeping his mind busy help. I’m sending you both big hugs and extra prayers.

        That RHC is a big one, but know you will be fine and grateful that you’re in good hands with your new cardiologist. Also, happy that you will finally have that SIBO test you need.

        Hang in there and know you’re not alone. We are here for your support; please keep us posted on your test and how you and Dick are doing.

    • #33918
      Terese Tuohey
      Participant

      Hi, Jen and Colleen, and the rest of you solid Forum folks!

      I have just returned to MI from wintering in FL, which did wonders for me – all that sunshine and blue skies!   A made a PHriend  inn FL.  Sally lives about 15 min from me and we got together for lunch a couple of times.  Great to meet someone I’ve only read about on the Forum.

      As for what is ahead, it’s doctor ‘catch-up’ time for me.  I see my PH doc  later this month for the usual blood work, ECHO, ad 6-minute walk.  I will also see my dentist, a new hematologist (my old one retired to do research),  a check up from my cataract surgery last summer,  and my allergist.   Isn’t that enough for a 2-week span of appts?

      I have been feeling well, and am looking forward to Easter!  My husband and I are planning a quiet Sunday dinner.  Besides Holy Week services, and Easter,  not much else is going on.

      I returned to my walking group and exercise classes here in MI (I did the same in FL) so I keep up with my fitness as best I can.  I was able to walk between 2 and 2 1/2 miles outdoors in FL and came back able to do a 3-mile walking video indoors.  Guess that’s my update1  Wishing you all a Blessed Easter, and if you don’t celebrate, Happy Spring!

      • #33921
        Colleen Steele
        Keymaster

        @tervo it’s so nice to hear from you and what an fantastic update! You sound really happy! You have me thinking maybe I should winter in FL. LOL! I will keep you in my thoughts and prayers during your 2 week appointment marathon and hope you will give us updates when you are ready.

        Have a blessed Holy Week, joyful Easter and lovely Spring!

      • #33929
        Jen Cueva
        Keymaster

        Wow, @tervo, it sounds like Florida worked wonders for you! I can attest that the warmer days and sunshine can be a considerable boost. I’m so happy that you enjoyed it and are back home safe.

        Making friends and meeting in person is such fun! I’m so happy to hear about your lunch dates with Sally- although I’m a tad jealous I wasn’t there, too.

        It sounds like your catch-up appointment weeks are a ton. Please try and rest in between and keep us posted on how things go. Let us know so we can send you positive thoughts and prayers ahead of time.

        Enjoy your Easter dinner with your husband. Thanks so much for sharing such a positive update. It’s always great to hear from you.

      • #34134
        Jen Cueva
        Keymaster

        Hi @tervo, how is your appointment catch-up going this month? I know you had several important things on your schedule. I’m sending you positive thoughts, hugs, and prayers are you continue this monthly doctor marathon.

    • #33927
      Terry
      Participant

      G’Day ,Back on the Tadalafil with the Macitentan as pressure hovering around 65 so got fitted up for a hearing aid week before last  as hearing in left ear is cactus. Technician told me something he has never seen before  going on with my middle ear. ‘ Don’t need to know that mate just fit me up with an aid’ I picked it up yesterday. I’ll miss the ‘‘you heard me’ or ‘ dont give me that you heard me.’ Rheumatology discharged me and referred to my GP for ongoing monitoring for GCA as I have not had a relapse and off the Methotrexate for twelve months now. phew only took five years.  Saw my GP about getting a few small Cysts around my right eye cut out yesterday. Have to wait till week after next as he wants a nurse to hold my hand and they are busy with Covid right now. Had a quad flu vaccine whilst there , boy it knocked me around a bit for 24 hrs. I know I’ve forgotten something but thats about it for me this month.

    • #33930
      Jen Cueva
      Keymaster

      Whew, @terry, it sounds like you’ve been busy, Mate. Sorry to hear that your pressures are increased, but I hope that the tadalafil and macitentan will help decrease a bit. Are you set up for a follow-up Echo, or will they go by your symptoms to see if this combination helps?

      I’m happy that you picked up that hearing aid and bet your sweet wife will love that you can now hear her, hehe. Excellent update on your GCA update, no relapse is a blessing, and I hope this continues for you.

      I’m tired after just reading your update, so I hope you’re taking time to rest and enjoy the beautiful garden. Take care, Mate.

    • #33937
      Tracey
      Participant

      Hi Colleen and Jen, I love how you’re  always checking up on your phriends. I havent got anything going on for the next few weeks. We’re heading into our last bit of summer now in SA and have so many holidays coming up that you can take 8 days leave over the next few weeks and get 18 consecutive days off. Nothing operates in SA for a good three weeks around Easter and Christmas. When everyone is holidayed out I need to go and have additional tests to see why my diaphragm is not working so well. I officially became the 100% owner of my business today so I’ve got lots to do while the majority of the rest of the country is on holiday. That’s ok, I get to sleep with Billy and Enzo at night and they don’t 🤣. Thank you my phriends for being so caring.

      • #33947
        Colleen Steele
        Keymaster

        @traceyaustralianmigration-co-za congratulations on achieving full ownership of your business! That is exciting news! Enjoy your work but don’t forget to make time for rest and relaxation too! I think Billy and Enzo can help you with that!

      • #33950
        Jen Cueva
        Keymaster

        Awesome update @traceyaustralianmigration-co-za! I’m so happy to hear that you now have 100% of your business back. WTG!!

        I can only imagine how much work you have to make up for the lost time. Please do allow yourself some downtime with the boys throughout the day.

        Once you schedule appointments to get some answers about your diaphragm issues, please do let us know. How are you doing otherwise post-surgery? Is everything else status quo for the most part?

        Big hugs are coming your way to SA, my PHriend.

    • #33976
      Roger Bliss
      Participant

      Got a video appointment with the “plumbing nurse” on the 21st. Pretty much a waste of time as I am totally healed up and doing well. Guess they have to cover their butt’s after pulling my tube out.

      • #33987
        Colleen Steele
        Keymaster

        Best of luck @wheeldog with the telehealth appointment. I’m sure it is a protocol to follow-up and make sure there isn’t any sign of infection or change in symptoms. As long as there hasn’t been any of that then it should be a quick appointment for you. Let us know how it goes.

        • #34076
          Roger Bliss
          Participant

          It was quick. Everything is going well. My CT scan and x-rays showed everything looks good inside too.

        • #34079
          Colleen Steele
          Keymaster

          @wheeldog that is fantastic news! Congratulations!

        • #34093
          Jen Cueva
          Keymaster

          Excellent report, @wheeldog. Now, when is your next appointment with the cardiologist there in Alaska?

        • #34101
          Roger Bliss
          Participant

          May 4th. I’ll get back to you with the results.

        • #34114
          Jen Cueva
          Keymaster

          Yes, please do that @wheeldog. Hopefully, between now and then, you and Mary Ellen are getting all cozy back at home. Thanks again for keeping up updating us on how you’re doing.

    • #33985
      Jen Cueva
      Keymaster

      Hi @wheeldog, hopefully, this video appointment will be quick. I’m happy to hear that you healed without any more problems after they pulled your tube. Have you noticed any swelling? Do you first see an increase in shortness of breath when fluid starts accumulating? Please let us know how it goes and how things are going since they pulled your tube with fluid.

      Do you weigh yourself often to monitor extra fluid?

      • #33998
        Roger Bliss
        Participant

        There is a small bump of scar tissue there, it keeps getting smaller. So far not short of breath from the fluid. I will have them check it in a few months.

        Never tried weighing myself for fluid. My weight fluctuates one way or another most of the time.

    • #34007
      Jen Cueva
      Keymaster

      Hi @wheeldog, you are healed well except for that scar tissue bump. I’m happy to learn you haven’t noticed any shortness of breath and that you will have them checked in a few months.

      Most of us fluctuate daily with weight. My doctors have a “dry weight” for me, and it’s usually a 3-pound variance, but if I go above that 3-5 pounds, there’s a problem. But I typically notice increased bloating in my belly and swelling in my lower legs and feet. At times my hands also swell. I’m surprised that none of your doctors have suggested you keep an eye on your weight. It may be something to consider since you’ve had that fluid accumulation in the past. Yeah, I know, something else to do, hehe.

    • #34064
      Jen Cueva
      Keymaster

      Good luck with your video appointment today @wheeldog. Please let us know how it goes. It should be quick since it’s a follow-up after removing your tube.


      @cdvol3gmail-com
      , I’ll be thinking of you as you go for your SIBO test tomorrow. I know you had to fight for this appointment and will be grateful when it’s done, and you get some much-needed answers.

      Take care, everyone, and listen to your bodies. In between, do something fun that makes you smile.

    • #34121
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, isn’t your RHC this week, my sweet PHriend? How did your SIBO testing go? When do you expect to hear back from that? You’re in my thoughts and prayers, and I hope for positive results from your RHC. I’m so happy that you already love your new cardiologist.

      I meet with my potential new PCP in a few hours, so I would appreciate positive thoughts, vibes, and prayers that she will work out. Thanks much.

      Thursday, I have an appointment will my PH doctor. But some things changed, and I’m now under the care of my first and favorite PH doctor, who cared for me for over ten years!

      • #34126
        Colleen Steele
        Keymaster

        Going to jump in here and offer my well wishes to @cdvol3gmail-com too! Considering how much you had to fight for the SIBO testing, I hope it went well. Praying for your RHC too.


        @jenc
        we take hope wherever we can find it and it sounds like your doctor’s are great providers. I’m feeling hopeful that your new PCP will be a perfect match for you and thrilled that you are back under the care of a doctor your trust.

      • #34127
        Carol Volckmann
        Participant

        Hi sweet friend, I hope – really hope your appointment with your new PCP went well and that you are comfortable with her and that she will become a major coach on your team.

        Hi Colleen, thank you for you jumping right in there! The SIBO test took 3 hours to do but I was able to do it from home and will hear back, hopefully, within 14 days. My RHC is this coming Friday. My PH doc will be doing it and he tells me the basic results before I leave so that is good.

        Thank you both for your care, prayers and love ❤ 😍

        • #34209
          Jen Cueva
          Keymaster

          Hi @cdvol3gmail-com, thinking of you and sending you positive thoughts and prayers this week ahead of your RHC. That’s today sometime, correct? PLease let us know how things go when you are rested and ready to share.

      • #34214
        Carol Volckmann
        Participant

        Hey Jen, the good news: RHC went really well yesterday – right side of my heart holding steady, pressures pretty good. Left side a little bit better than a year ago!! Very good news.

        The bad news: my SIBO test came back that something went wrong and will have to do it again! I cannot believe it.

        Dick and I are hurting so much with the loss of our beloved Golden, Spirit. It is so empty without him.

        Thank you for reaching out always with your caring, compassion and understanding. 💔

        • #34217
          Jen Cueva
          Keymaster

          Hi @cdvol3gmail-com, I can’t imagine the pain and heartache you and Dick are dealing with as you grieve the loss of Spirit. My love and prayers are coming your way daily. – Big gentle hugs as I know Spirit was the light in your home for your both. How old was she again? That’s undoubtedly tough.

          That’s excellent news, and a positive RHC with those results; that’s a win! But I’m sorry about the SIBO test, and I know you were ready to have the effects back. Did they happen to mention what went wrong and how they will keep it from going wrong again? I can’t believe this and hope that you can get this done and your results back soon.

          You’re loved and cared for here, so please share anytime you need support, PH-related or not, my sweet PHriend.

    • #34135
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, thanks so much for your encouragement as you have your struggles. The PCP was friendly but was behind schedule by almost an hour, so I was at this appointment for over 2 hours, including lab work. That was not impressive, but she was kind and listened to my concerns.

      I’m happy you have that SIBO testing finally done after how long it took to get it ordered. Hopefully, you’ll have some results from this that help offer answers to your bloating.

      My thoughts, prayers, and positive vibes are with you this week, especially on Friday for your RHC. Please let us know how we can best support you this week, my sweet PHriend. Thanks for the brief update.

    • #34139
      Terese Tuohey
      Participant

      Hey Everybody!

      My doctor visit marathon moves on apace.

      My good news about my CT scan is they don’t have to do any biopsy at this time.  Yay!  My CT showed that the nodule they were watching is gone – but there is now a new one in a different place, so I get another CT in July so they can watch this one.  They are also going to check for iron deficiency in my blood (I have restless legs at night) and try to rule out Lupus or Rhumatoid arthritis as possible causes of these nodules.

      Onward!  Teeth are cleaned and I got a good check at the dentist’s.  Next up is meeting my new hematologist on Friday and a check-up with my cataract surgeon next Monday.  Whew!  That should do it for a while!

      I had my ECHOcardiogram yesterday, and good news!  The right side of my heart has returned to normal size!  It was enlarged because of the CTEPH/PAH.  So between the surgery and the meds I am on, things are looking better.  (An enlarged right side of the heart can equal Right Heart Failure – not a good thing!)

      I gained a little weight, and the Dr is concerned that I may be retaining fluid, so first I watch the salt in my diet closer, and if I still gain, it’s time for a diuretic  (which I do NOT want to start taking).  So I’ll be super careful, and if I don’t gain anymore, or even should lose some, it’s not the salt that is the problem.

      My 6-min walk test had me at 97% of what a normal person my age with no medical problems would do.  Dr. is pleased.  Me too!

      I’m hoping all this good news continues!  Thanks for all your support!

      • #34146
        Colleen Steele
        Keymaster

        @tervo what an awesome update! Even the little bumps in the road you mentioned sound manageable. Really happy for you! What a nice way to step into Spring!

        Praying that the remaining concerns are manageable and that you will continue to experience improvements!

        Question: Did you by any chance copy and paste your comment to the forum? There was a lot of code attached but I cleaned it up for you. When members copy and paste their comments often turn out like the following example.
        Me too!</div>
        </div>
        <div>I’m hoping all this good news continues!  Thanks for all your support!</div>
        <div dir=”ltr”>

      • #34149
        Roger Bliss
        Participant

        @tervo Glad to see I am not the only one doing the doctor marathons. Hey we are doing our part to make sure their luxury car payments get paid on time…….eh?LOL

        Looks like you have had some good news…….congrats. Hope you continue to see positive improvements.

        Am I reading this wrong??? Are they telling you low iron causes restless leg? If so It makes me go hmmmmmmmmmmmm. The wife’s side of the family has hemochromatosis. That is too much iron in the blood. All on her side of the family…..including our son…..have to give blood on a regular basis to keep it in check. They all have restless leg too. From what I have been hearing restless leg is hereditary. Keep in mind I have no medical background…..just passing on medical info I know about in our family. Between the wife and me…..our son has all sorts of weird diseases to look forward to.LOL

        My legs were mildly swelled…..they put me on a diuretic for a few weeks……didn’t do any good. Seems like every time I get off a drug the better I feel….same with that “pee pill”.

         

         

         

        • #34157
          Jen Cueva
          Keymaster

          Hey @wheeldog, yes, low iron (anemia) can cause restless leg syndrome (RLS). Here’s a little more information about this. I know several with PH who have anemia, including some members.

          You cracked me up with your comment about your son having “weird” diseases to look forward to. I know, unfortunately, we do inherit our genes from our parents. I tell my mom not to tell me of her new health concerns at once because I am NOT looking forward to adding anything else to my hot mess express.

        • #34176
          Colleen Steele
          Keymaster

          @tervo, @wheeldog, @jenc I’m following the iron/restless leg syndrome discussion because my husband has it and it’s getting increasingly worse. He takes medication for it but I don’t think he has been told about the iron connection and that it can be hereditary. Interesting!

        • #34180
          Roger Bliss
          Participant

          @colleensteele If you are interested in getting in a discussion on restless leg, my wife can join the forum and explain more. She refuses to take prescription meds, but has some stuff she does to relieve it. Nothing she does works 100% of the time, but some stuff works some of the time. She has done extensive research on it and may be of help to some on here who have it.

        • #34188
          Jen Cueva
          Keymaster

          Hi @wheeldog, it would be great if Mary Ellen wants to start a new topic about RLS. Although she doesn’t have PH, those with RLS may benefit from her experience and research.

          Thanks for that suggestion.

        • #34196
          Colleen Steele
          Keymaster

          @wheeldog I forgot we actually started a restless leg topic in 2020. Here is a link to it.
          Pulmonary Hypertension and Restless Leg Syndrome

          I don’t know if my husband will join the forums but I can certainly pass messages and questions back and forth. We welcome your wife to join any time! It would be so nice to chat with her.

          My husband really struggles with it. Come to think of it, I do remember his mom complaining about it too, so maybe it is hereditary for him.

        • #34187
          Jen Cueva
          Keymaster

          Hi @colleensteele, I hate to hear that Brian suffers from RLS. My dad does, and this keeps him up at night. He would wake up 3-4 times per night when I stayed with him. But my dad would also grab snacks. Usually something he shouldn’t be eating; he has diabetes when he’s up with his legs.

          He often soaks in a warm bath and says that helps a little. His doctor tried a few prescriptions with him for RLS with no results. I encouraged him not to eat snacks but drink a little water when this woke him at night. I also suggested he stretch and do his warm soaks and then try to go back to bed. He also likes the AC on ice-cold, as he says that helps. He froze me to death practically.

      • #34156
        Jen Cueva
        Keymaster

        Hi @tervo, wow, it sounds like you’re smashing this doctor marathon, my PHriend!Hopefully, things will resolve or stabilize with the modules with these routine CT scans.

        That’s such a blessing that your heart has returned to normal size. You’re right; RHF is not something we to progress. For you, this has improved, and I’m so grateful to hear this exciting news!

        Hopefully, the weight gain was you enjoying some good food while in Florida, hehe. But hopefully, monitoring your sodium intake will make a difference, so you don’t need to add a diuretic.

        Now, I bet you have a little more “spring” in your step. Thanks so much for sharing your encouraging update. Now, maybe do something fun as you round those last few corners this month.

    • #34183
      Terese Tuohey
      Participant

      Hi, again!  I’m thanking all of you who acknowledged my good news at the MDs.  I have 2 more ‘big’ visits ahead of me:  a new hematologist and my cataract surgeon.  Then I can wind down for a while.


      @wheeldog
      (Roger Bliss), yes, low iron can cause restless leg syndrom.  I’d be interested in whatever your wife takes to help hers.  I did take iron pills for a while, but when my blood test came back normal, my dr. told me to discontinue it.  Don’t know what he has in mind for me this time.

      Just to comment on your last column, Colleen, I sometimes have trouble sleeping, too.  I have oxygen at night, and that machine has become my white noise.  If I can relax my shoulders, it puts me right out!  I’m not recommending the O2 machine, but piano music or white noise, it all helps.

      Also, does anyone have both an in house O2 concentrator and a travel-sized one?  Any problems getting both?  My in-house unit is over 30 pounds and hardly what I’d call portable. Nonetheless, we do take it to FL, but for overnight trips, it is a real pain!

      • #34190
        Jen Cueva
        Keymaster

        Hi @tervo, You’re almost done with this doctor marathon. Hopefully, you’ll conquer the last two like the others. Manny had cataract surgery last year and did great with his. Your new hematologist may have other ideas for your RLS.

        Your comments on the O2 machine putting you to sleep, Manny says the same. He is now used to hearing it, so when I was away helping my parents for the week, he had difficulty sleeping. Plus, I wasn’t next to him, hehe.

        I do have my home O2 concentrator and my POC for travel. But we had to pay for the Inogen, and I use that for travel. When I was at my late grandmother’s with my mom, she had one there that the DME company said wasn’t theirs, so I used that at night instead of my POC. I know some on Medicare that have both a home concentrator and POC. They are both rentals.

    • #34201
      Roger Bliss
      Participant

      Hello, this is Mary Ellen, Roger’s wife. He told me of the interest in Restless Leg Syndrome here and I’m happy to share my experience if it helps anyone and always anxious to hear how others deal with it. It started with me all of a sudden about 19 years ago and I am able to manage it for the most part after trying a lot of things. My Dad had it, my older brother and also my son have had it so there does seem to be a genetic factor in my family.

      In my search for relief I have found research that tracks it back to medieval times. That early info says it is a brain syndrome similar to Parkinsons but it never develops to that disease fortunately. It is prevalent in northern European DNA. I also read that there can be different causes such as Diabetic neuropathy, varicose veins, spinal problems that affect the nerves in the legs. (I guess that would be neuropathy also) Some people have it so bad it goes all the way up their back and down their arms. Maybe that is from a spinal cause but I am just guessing.

      As for the iron issue, I think that connection is very possible. The previous generations in my family have a history of Hemochromatosis. Iron does not get used as normal resulting in it accumulating in organs, including around the heart. It is also prevalent in northern European DNA. Hmm, maybe not a coincidence. But maybe low OR high iron can cause it.

      So this is what’s in my bag of tricks:
      *Hydrate well before bed. (It’s worth it even if it means a trip to the bathroom in the night,
      lol)
      *Take some Magnesium before bed. I like the CALM brand drink
      *Do some leg stretches before bed
      * A heavy blanket across the legs. I have never actually tried a “weighted blanket” but have
      heard they work well for some people.
      *No alcohol near bed time, especially red wine for some reason. It might be the tannins they
      usually contain.
      *If the jumpies still start up I get right up and stretch again then give my legs a good massage
      with anti- inflammatory salve or cream. I use Nettle or Devil’s Club but there are several
      online that may work.
      *Heat may help so a heating pad or hot tub may stop them. But also, the reverse of cold may
      settle them down too. (I know that makes no sense at all)

      This usually takes care of it but once in awhile it doesn’t. In that case I just get up and walk around and try not to fight it until whatever is causing it gives up and I can get to sleep.

      It’s a very mysterious condition and no doctor I have ever spoken to about it can come up with anything besides a type of Parkinson’s medication which I sure don’t want to try. My hobby is studying herbal medicine so hopefully I can find something I can use in that area. Until then….good luck to us all 😊

      • #34216
        Jen Cueva
        Keymaster

        Hi @wheeldog, Mary Ellen, that temperature thing you mention makes sense. This is probably because I’ve watched my dad with RLS. He often says soaking in hot or warm baths helps, and other times, he wants the house ice cold. When I was there last month, I asked him which one of us was at the age of menopause? LOL.

        Yes, please do chime in at any time. We are happy to have you join the conversation.

    • #34210
      Terese Tuohey
      Participant

      Hi Roger and Mary Ellen!  Thanks so much for all the helpful tips about restless legs.  I’ve been taking my calcium pills at night and my magnesium in the AM.  Maybe I should reverse the order?  I’ll give it a try!  Can’t hurt.  I know about the extra bathroom trips at night, so that’s not a problem.  I usually just get up and jiggle around some to get whatever is ‘bugging’ my legs to stop.  Sometimes it is so bad my shoulders and neck move, too, so you may have something there about it going up the spine.  It looks like I’m spastic or something when it happens.  My doctor is working on it.  First check out the iron in my blood (last time we did this it proved I was normal, so I don’t know about it this time….)  The funny thing is that it doesn’t happen on any kind of a regular basis.  It just seems to do it when it wants!  Do you find that, too?  It usually starts for me when I relax, either in a chair or bed, and sometimes, it starts after I have been sleeping for a bit and then wakes me up.  Very peculiar.  Anyway, thanks for the tips and I’ll give some of them a try.

    • #34212
      Colleen Steele
      Keymaster

      @wheeldog — Hi Mary Ellen! Thank you so much for the information and for sharing your experience with Restless Leg. My husband struggles with this and seems the older he gets, the worse it gets. He isn’t on the forums but I am going to pass on what you discussed.

      Some of it he is doing or has tried, but not everything, and I don’t think he knows the history of RL. His mother complained about the symptoms so his is probably hereditary too. He didn’t know about the iron connection and think he might be surprised to hear about the Parkinson’s historical link.

      It’s nice to hear from you. Please feel free to jump in and share or ask questions about any forum topic.

    • #34246
      Terese Tuohey
      Participant

      Hi, folks!  I managed to get through my medical marathon!  My teeth are clean, my eyes have been checked, my 6-min mile and it’s attendant bloodwork, ECHO and doctor visit were all good.  My CT showed something the doc wants to watch, so that is the only thing I have on the summer agenda – I need to have another CT to see more about this.  The cardiologist and OBGYN visits aren’t til later in the summer, for the for next few months, I am golden!  YAY!  Thanks for cheering me on.

      And Mary Ellen, I changed the order in which I take my magnesium and calcium so the mag is before bedtime.  That and leg stretches have helped (not cured, but helped) my RLS.  I also heard that taking statins long term could be a cause of RLS.  Have you found anything about that in your research.  I’ve been on simvastatin for 20 years – about the same time I noticed my RLS.

      • #34257
        Roger Bliss
        Participant

        I’m so glad you have found a bit of relief at least. Baby steps.  I think the magnesium is good for promoting sleep even if a person does not have RLS.  The statin thing is interesting and I have never heard of that. I’ll keep my ears open for more. The fact that the RLS started when you went on the statin is maybe not a coincidence.    I was reading lately that the B vitamins and Vitamin D 3  deficiencies are found in patients with RLS so lately I am making sure I have plenty of those.   I don’t know much about statins but I wonder if they might deplete other vitamins?

        Another thing I read is that it is affected by low dopamine, the happy hormone. With the heriditary situation the person does not produce enough dopamine on their own.  This is going to sound really crazy  but chocolate is said to raise dopamine.  I love chocolate and usually take a quality piece of chocolate in the evening.  Not Snickers bars, lol, but I use a quality  dark chocolate of 75 or more percent cocoa.  They can be a little bitter but it raises my happy bar.  Who knows??  I think we just have to try things to figure out what works for each of us.

        • #34262
          Jen Cueva
          Keymaster

          Hi @tervo, kudos to you for crossing the finish line for your doctor marathon for a bit! It sounds like, overall, you have had some positive appointments. Try and enjoy the break by doing something fun; you deserve t!

          I’m happy that you’ve found Mary Ellen’s suggestions for RLF helpful. You mention statins and RLS. Interesting, I read this article online, it says that adding coenzyme Q10 can help add those nutrients back in. Mary Ellen, @wheeldog, you’re right; statins can deplete nutrients.

          I hope that you both enjoy the rest of your week. Maybe some chips and salsa and Mexican-themed meals for Cinco de Mayo!

    • #34258
      Roger Bliss
      Participant

      Mary Ellen wrote the post about RLS but forgot to post it was her.

      I visited my cardiologist today. Nothing much new. He was extremely happy that UCSD had me stay on the drugs he prescribed. He referred to them as “medical gods”. He was there 40 years ago for 4 years.  He set me up with a Echo to be done on the 10th to send Dr Yang at UCSD.  Got an x-ray of my lungs today to see how the fluid is doing.  Don’t have another appointment with him till Aug 15th.

      I didn’t realize how fragile a doctors ego is. Hope my   pulmonologist doesn’t get upset that they took away my Tyvaso.  Not going to get an appointment with him till the results of the Echo come out.

      Got an appointment to see my “regular guy” on the 16th. Guess my oncologist in SD wants to deal with him. My “regular guy” is a PA and very easy to talk to. Doesn’t have a big ego and I think he enjoys having access to the “gods” at UCSD where he learns a lot. I like dealing with him. He once lived in AZ and understands “Valley Fever” and knows how to test for it, which my be a possibility in my case……who knows. Dr. Yang suggested I get tested for it as I have a couple of nodes in my lung.

      I will update after my next appointment.

      • #34263
        Jen Cueva
        Keymaster

        Hi @wheeldog, you made me laugh reading about the medical “Gods” and the doctors and egos. It sounds like your medical team there is doing an excellent job. Your “regular guy” sounds like a great match.

        When will you hear back about the fluid from your x-ray? May 10thy is your Echo, next week? That’s fast! It sounds like you continue to do alright without the Tyvaso. How are you feeling overall after being home now for a little bit?

        Please keep us posted on your results and upcoming appointments. Thanks, Mary Ellen, for your response and information about RLS. PLease pop in and share anytime. Although, I bet keeping Roger in check is a full-time job.

        • #34270
          Roger Bliss
          Participant

          Actually got the results today.The heart center has an app similar to the my chart at UCSD. There is a minimal amount of fluid and doesn’t need to to be drained.

          I am feeling good……got lots of work getting ready for summer. I seem to keep busy all day. Have to stop and catch my breath when I over do it.

    • #34275
      Jen Cueva
      Keymaster

      That’s excellent news, @wheeldog. Minimal fluid and no need to drain it will hopefully continue to be your new normal.

      Overall, it sounds like you’re doing well without the Tyvaso. You needed to stop and catch your breath before you overdid it, too, right? Maybe you can slow and take those breaks when you feel SOB and then start again and continue with this. Yes, I bet summer keeps your business busy. Take care of yourself and listen to your body, which it sounds like you are doing.

      Thanks for sharing your update with us all. Enjoy a nice weekend. How’s the weather in Alaska this time of year? I would guess mild but warming up.

      • #34286
        Roger Bliss
        Participant

        I am taking more breaks today. I should have everything done in time to go to work.

        Weather has been good lately. In the mid 50’s during the day and high 30’s at night. The best part is all the sunlight. We are just about to 17 hours of daylight now. It will get up to 19 around solstice and then start going down.

        • #34288
          Colleen Steele
          Keymaster

          @wheeldog I just read that you got your results back and things are looking good like the weather apparently! I hope you can make time to relax this weekend.

        • #34296
          Jen Cueva
          Keymaster

          Kudos to you for taking those breaks, @wheeldog! I can bet you can be stubborn when things become busy with the gravel business. Shall I ask Mary Ellen? LOL

          That’s a ton of sunlight, Roger! Hopefully, that doesn’t mean you’re working 17-19 hours daily! Keep us posted.

Viewing 21 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account