ALS News Today Forums Forums Living With ALS cold and swollen feet

  • cold and swollen feet

    Posted by tomd on March 16, 2021 at 10:11 am

    One of my recent ALS symptoms is cold and swollen feet. I understand that these symptoms are likely due to lack of movement.

    I’m dealing with this condition by wearing compression socks in the day, elevating my feet above my heart a couple of times a day, and having my caregiver give me foot massages.

    I wonder if others have this condition and how you deal with it.

    marianne-opilla replied 2 years, 11 months ago 12 Members · 14 Replies
  • 14 Replies
  • carolyn-barry

    Member
    March 16, 2021 at 11:56 am

    Thanks for sharing what works for you.  My feet are very cold most of the time, and are purplish in color often too.  I don’t have swelling very much luckily.  I also try to move them when I can, but I tried compression socks and had to give up wearing them.  I had too much trouble getting them on my feet, due to my poor leg and arm strength.  One thing that does help is putting a heated throw on my legs and feet, during the day, when I don’t have my shoes and leg braces on.  I find that helps me quite a bit, plus it feels great.  I’ve even tried using a large heating pad on low, in bed at night, at least for a few hours.

  • marianne-opilla

    Member
    March 16, 2021 at 3:42 pm

    I have the same issue with my left foot drop. I also spend most of my day barefooted because I feel more stable in bare feet.  But it is winter, so my feet get very icy.  My golden retriever is a great foot warmer and i wrap blankets, heat pad, socks when I rest.  You could get heated socks or foot warmer pads.

    My doctor said it is because the atrophied muscles cannot circulate the blood.

  • nancy-gilkeson

    Member
    March 16, 2021 at 3:58 pm

    Cold hands and feet are daily visitors here at my home too!  I use two pair of wool & cotton blend socks at night now.  I put one pair on regular and tuck PJ leg bottoms  into the cuff of that 2nd pair of socks, which has been helping the feet at night.

    Thankfully I can huddle near the pellet stove, reheat hot water or coffee in microwave to warm hands still, but also use “flaxseed warming pillows” heated in microwave occasionally, for hand warmth.  I had made a bunch for family Christmas gift-giving a few years back & the “leftovers” are certainly appreciated now by myself!

    That makes me think of something else…felted soaps.  I’ll start a thread for that.

  • mike-minardi

    Member
    March 16, 2021 at 4:29 pm

    For swelling, you might ask your Dr for a water pill (furosemide). You certainly don’t want to risk DVT (blood clots) due to lack of mobility. You can also buy compression boots on Amazon. They run about 20 minutes and then you remove them. They are much easier to put on than compression socks

  • kristinesj

    Member
    March 17, 2021 at 4:39 pm

    <span class=”TextRun SCXW193933262 BCX0″ lang=”EN-US” xml:lang=”EN-US” data-contrast=”auto”><span class=”NormalTextRun SCXW193933262 BCX0″>Hello! I purchased the compression boots from Amazon. They are an absolute godsend. Admittedly, I </span></span><span class=”TextRun SCXW193933262 BCX0″ lang=”EN-US” xml:lang=”EN-US” data-contrast=”auto”><span class=”NormalTextRun DictationCorrection SCXW193933262 BCX0″>use</span></span><span class=”TextRun SCXW193933262 BCX0″ lang=”EN-US” xml:lang=”EN-US” data-contrast=”auto”><span class=”NormalTextRun SCXW193933262 BCX0″> them for more than 20 minutes. They run for 20 minutes and then I have them turned back on again. They keep my feet </span></span><span class=”TextRun SCXW193933262 BCX0″ lang=”EN-US” xml:lang=”EN-US” data-contrast=”auto”><span class=”NormalTextRun ContextualSpellingAndGrammarErrorV2 SCXW193933262 BCX0″>warm</span></span><span class=”TextRun SCXW193933262 BCX0″ lang=”EN-US” xml:lang=”EN-US” data-contrast=”auto”><span class=”NormalTextRun SCXW193933262 BCX0″> and they keep the circulation going. Also, I was given a pair of diabetic slippers that allow me to adjust for the swelling and these have kept my feet toasty warm.</span></span><span class=”TextRun SCXW193933262 BCX0″ lang=”EN-US” xml:lang=”EN-US” data-contrast=”auto”><span class=”NormalTextRun SCXW193933262 BCX0″> I hope this helps!</span></span><span class=”EOP SCXW193933262 BCX0″ data-ccp-props=”{"201341983":0,"335559739":160,"335559740":259}”> </span>

  • david-crellin

    Member
    March 18, 2021 at 7:24 am

    I also suffer from cold feet and lower legs. I’ve just ordered an electric foot warmer that takes both feet and reaches up the lower leg. I’ll post an update once it arrives and I’ve tested it.

    Up to now I’ve been using a microwaveable grain bag and then wrapping my feet in a down gilet. Toasty, but damp feet are the result – you need to have a cup of water in the microwave to stop the grains catching fire.

    David

  • carolyn-barry

    Member
    March 18, 2021 at 7:38 am

    I just saw my dermatologist and when she looked at my feet, with purple areas and ongoing coldness, she said I have Raynaud’s syndrome in my feet, as I do in my hands.  She said it is all due to the poor circulation in my feet, in addition to the neuropathy.  Thanks Kristine for mentioning the fact that compression boots help you, as I actually have never heard of these.  I looked on Amazon and I am considering ordering them for myself.  I noticed that most don’t have a heating element, to then provide the warmth I so desperately need.  I found a pair that has the heat and I probably will order them, in hopes that they help.

  • Deleted User

    Deleted User
    March 18, 2021 at 8:19 am

    My circulation in my lower left calf/ankle/foot is weak because of the loss of muscle. My right side is not so bad yet. Muscles perform an important part in circulation, and when they atrophy swelling in the legs and feet occur.  The build up of pressure slowly causes it as the bodies ability to push blood uphill (so to speak) is diminished. Bodies are designed circulate blood using muscle, and when it slows down in the lower extremities it results in heat loss, resulting in cold feet. Heat dissipates through the skin. If you can, wearing pressure socks or any sock does help. I use them on and off as needed. In Florida the temperature is warmer, so I don’t notice it as bad (maybe).

    Another thing about loss of muscle in the foot is that the more you lose, and the more you walk, the more likely it is that you will see changes in the arch. My arch is about gone, they adjusted my KAFO (Knee Ankle Foot Orthosis) to help, but it definitely is still getting worse.

     

    PS…if you get a lot of swelling it is important to do something to control it because swelling increases the chance of blood clots…pressure socks help prevent that.

  • nina

    Member
    March 18, 2021 at 4:00 pm

    There’s lots of good ideas here. I have poor circulation and DVT so I use compression socks often. I found socks that zip up and it makes it much easier to put them on.

  • christine-moretti

    Member
    March 18, 2021 at 5:10 pm

    My feet and hands are always cold. Luckily, I don’t really have an issue with my feet being swollen. I agree with the other comments that blankets (and gloves) are my friends.

    Being barefoot is rather uncomfortable due to my neuropathy, but I did find these stretchy shoes called Fitkicks that allow my feet to feel stable yet flexible. They even go over my brace.
    Here’s the link if anyone is interested. They are quite comfy.
    https://fitkicks.com/

  • david-crellin

    Member
    March 21, 2021 at 3:03 pm

    Update on foot warmer: wonderful! The CareCo footwarmer I bought on Amazon(UK) has three heat settings and a removeable liner. Once I’d removed the foam insert (why was it there?) it worked a dream. No more freezing feet. It’s mains powered. Love it.

  • nancy-gilkeson

    Member
    March 24, 2021 at 12:20 am

    Wow, thank you all for input.  Im not swelling, but the alternating air boots, zippered socks, fitkicks, & footwarmer with multiple settings, all sound helpful.

  • suzanne-akerman

    Member
    March 24, 2021 at 8:20 am

    A cardiologist at the Mayo Clinic in Rochester, MN told me my left foot was cold because the nerves that control the muscles that are around the blood vessels don’t work properly. It is down to the microscopic nerves and muscles around blood vessels. Nothing to do with major muscle movement.

    Of course, raising my foot above my heart makes the blood redness of my foot and minor swelling go down. I am still mobile with my AFOs. My feet are on the floor most of the day. The cardiologist said to wear compression socks, so I do on my poor left foot.

    My husband suggested I get electric heated socks. I thought no way. But I did.

    All heated socks I tried had tight tops. We cut the socks off just above the battery cord. I wear leg warmers, so they cover the cut socks.

    Four levels of heat in the socks, controlled with a remote I carry in my cell phone pocket.

    The cardiologist also told me to keep my cell phone on me at all times. We have wifi calling, so my cell phone works anywhere in our house.

  • susan-guarcello

    Member
    May 20, 2021 at 3:39 pm

    I use the leg boots twice a day. Purchased them on Amazon. I use heating pad at night both are very helpful.

  • linda-mck

    Member
    May 20, 2021 at 4:44 pm

    Hi all, great advice here. I am going to try the vibration foot pads, am researching atm. I’m thinking one with TENS function as well to stimulate. I live in Queensland, Australia so cold feet aren’t such an issue, although keeping socks on my feet is, with foot drop the socks swivel, any tips on preventing this? thanks Linda

    • marianne-opilla

      Member
      May 21, 2021 at 11:52 am

      I have foot drop too.  I have athetic/running/hiking socks from my “former life” that are tight and dont move on my foot. They are stretchy fabric, no cotton. Nike, Adidas, Darn Tough socks are a few brands.

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