My feet won’t let me sleep

It’s 3 o’clock in the morning and I’m wide awake. My brain just won’t stop talking. It keeps going on and on about wondering where the word oreo comes from and wondering if penguins have knees. You know, I don’t really care. But my brain…my brain seems to think it’s extremely important. I figured since it was up, I might as well get up too. It looks like I’ll be watching the sun come up this morning and wondering how I’m going to get through my day. Somehow, as soon as morning comes my brain gets quiet and my body is ready for bed. Why can’t they coordinate better when it’s time to actually go to sleep?

Most of the time my sleepless nights are due to pain, muscle spasms, and an overactive brain. My brain and muscle spasms I can quiet with meds, but I don’t like taking them. I will if I really need them, and probably should have taken some hours ago, but I knew today was going to be a slow day so I’m not as concerned about needing a full nights sleep. But the pain, that doesn’t respond to meds. I’ve tried at least a dozen different types of meds. I’m either allergic to the ones that actually work or have tried ones that should work but they don’t for me. I have found one solution though to help with the pain in my feet…the neuropathy.

I have extremely hypersensitive feet. They are completely numb, but I can feel soft touches. It’s really weird trying to explain that concept to people. A touch on my foot is not felt as a tickle either. It’s pain. Intense pain. My feet feel like they are wrapped in saran wrap all the time too or like I’ve got tight fitting socks on.

I know they make bed tents for the foot of your bed to help keep the sheets off of your feet but the prices of those things were way too high. Much more than I could spend. I was talking about it with my brother and we came up with a design for one using pvc pipes. Our version cost only $16 compared to the $60 and up for what appeared to be flimsy solutions.

So since I’m already up, let me show you what we did.

This tent idea may not fix all your sleepless nights, but it just might help with some of them. If you struggle with sleepless nights and exhausting days, keep searching for ways to help you get some much needed rest.

With MS, we need sleep more than most people because our bodies and brain are working quadruple times as hard to do just about everything. You know your body better than anyone else. Listen to it…slow down and rest when you need it. I give you permission to take a vacation.

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About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

41 replies
  1. Karen Wilson says:

    I’m reading this at nearly 2 am my time. Coincidence? I think not there seems to be a foot connection at night. I have to wash and rub lotion on them before I can sleep. Stretching helps too

  2. Gabriela Soberanis says:

    This will be second dayday in a row that I can’t sleep. Yesterday because I was worried about getting on a plane and coming homehome for a visit by myself. Today because, if course, I got a case of optic noritus and I had to go to an urgent care to get some solumedrol. So that’s keeping me up. I really do hope this doesn’t ruin my trip.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks for the personal message. I get foot tremors and it stops the sleep until it goes away (about three hours). I do have sleeping pills but like you take them if really needed. One thing that did happen recently was my large toe on my left foot started to get uncontrollably itchy and I didn’t know what to. So I turned around and told the MS to leave me alone and stop the attack on my foot. Strangely in about five minutes from this it stopped. Now I don’t care if it’s physcology or anything else but it worked, and that is important
    I have tried this on other attacks and it seems to work but not completely as I had hoped but it is fun to see some results that I cam call my own effort..
    I do like the way he made the frame. It looks good and probably better than the others. That’s a good move.

  4. Asherel Pipkim says:

    Thank you so much for sharing your experiences with us. It is so reassuring to know that I am not the only person in the world who understands the many aspects of MS. But it is sad too as it means others deal with this also. To explain the pain I am in, cog fog, fear, fatigue and so many of the other facets of this spiky neurological disorder continually to others is what I find so difficult. I can’t explain me to me. How can I put into words what I go through to other people? Quite simply, I don’t. I say “I’m fine” or “I’m in pain” or try to amend a spoken sentence when the wrong word insists on making an appearance. Through your wonderful page I have gained so much comfort. Thank you once again xxx

  5. Julie Wicks Giltner says:

    Timely! I just told my husband last night that the only reason that the world thinks I am perky is that I take benedryl to sleep & am so pumped up with caffeine & Amantadine (my MS anti-fatigue med) that I am alert during the day (and therefore, sadly, I can’t nap). I hate being reliant on these 3 things to function, but if I didn’t take them I would be on a truly strange schedule (3 am like Penelope?) indeed which wouldn’t be so great for my job and family. Hoping that you get some rest Penelope….

  6. Lynne Robinson says:

    That is a great idea. love how it keeps the sheets off your feet. Ty for sharing! I sometimes have two water bottles in bed at my feet and use them inthe middle of the night or foot pain,

  7. Heather Adsit says:

    I love how you take the time to do videos 🙂 It puts a even more kinder tone to your already kind and caring words :,)

    Your wonderful Penelope 🙂

    I hope you get that rest 🙂

    I have a question for you or anyone who wants to chime in.

    Have you done a sleep study?

    I am suppose to but I have not yet because I have to stop one of my meds I use to control my seizures.
    I just learned FMLA takes a calender year 🙁 So it’s going to be almost two years my husband has to work for him to be covered.

    So I’m waiting till December before I can try anything 🙁
    And that’s if our marriage makes it.

    Any way… my mom did a sleep study and she was set up with the sleep apnea stuff because she has sleep apnea.

    She still gets shakes and other odd things like MS but she has not done a mri to check for ms.

    My nuro thinks she has it.

    My question is. Have you or has anyone done a sleep test?

    I keep getting told I would do so much better.
    I just hate getting my hopes up :/

    I am sensitive to almost all medication :/ So I’m not on any ms modifies. I have had allergic reactions to the pain meds. The ones that are antidepressant based as well as seizure meds.

    So I was put on cannabis.

    It’s mostly cbd… the part that dose not have side effects.

    But it still has a relaxing side effect so it helps sleep but in the day I still wake up from time to time tired.

    With the cbd I don’t notice I’m waking up but my phone gadgets have been catching it :/

    When I don’t take it… I’m up till 2 trying to go to sleep.
    Fall asleep for a few hrs and wake up with about 3 hours of rest and can’t sleep no more :/

    So I know it’s helping but I don’t know how well.
    I don’t like meds myself :/

    I hurt in the morning… bad…

    I can be tired but my body feels like I’m sleeping on nails.

    Idk but it sounds like neuropathy my Dr has siad.

    The foot thing you said was spot on.

    My right leg feeling is gone from the knee down.
    I can feel some things but others I cannot.
    It’s like my foot is far away.

    I am use to tripping over nothing due to it 😉

    I never thought of the blankets bothering.

    I’ll have to try some things and see what helps 🙂

    I’m just curious about the sleep thing because I have not tried it and I wonder how much hype it is.

    Darn MS 😉
    I told it it can move any time and I will be ok with it moving out of my brain.
    I just have not gotten a response 😉

    • Marie Caruso says:

      Hi Heather, I had a sleep study at home with a cpap and it showed that I have sleep apnea. I slept with the machine for about 3yrs. I couldn’t take it anymore because the mask would rub sore spots on my face. I decided to go without, that might be part of the reason I’m up all night, I get about 4hrs of sleep a night and take little naps during the day. I have slept on a recliner now going on 4 years because of my back and leg pain and I can’t sleep flat. Anyway I hope you have better luck than me if you need the machine 🙂

    • Heather Adsit says:

      Thanks for the reply 🙂

      I am not to sure how it will go.

      I’m a tad bit cloister phobic.

      It takes allot for me to stay calm in a mri. Sometimes they give me meds to stay clam.

      So thinking of a mask on my face.

      Idk how I would react.

      It’s nice to learn some have had help from them.

      I hope they come out with better tools for this one.

      I will see once I get the test.
      It will be one more thing I can mark off my list of trie it and see if it works 😉 lol

  8. Leah
    Leah says:

    When I hit the sack, my legs and feet seem to go into overdrive. They start spasming and are on fire. I don’t know which one feels worse. I take meds to help relieve my spasticity yet find they really don’t work much. Instead, I rub essential lavender oil on my legs and feet which seem to calm them both down after a short while. Sleep…what’s that? I was up at 4:30am, decided to make my husband’s lunch and then went back to bed only to be woken up again at 6:15am from our alarm lock . Between having MS and now going through menopause, sleep is a rare commodity. It should be placed on the market as a luxury item…with the lack of sleep we all experience, I’m sure it’s value would soar through the roof! Moreover, I have a wonderful husband who “snores”…this is not so wonderful. Like you Penelope, falling asleep is difficult, so when I begin to feel drowsy, I head for my couch to catch a few zzz’s. By the way,what a clever invention…cudos to you and your bother!:)) Thank you for your video.

  9. Judy
    Judy says:

    Thanks for your video, Penelope! Loved it! What a constructive thing to do when you wake up in the middle of the night! Pardon my non-techie question, but what did you use to make the video? xo

    • Penelope Conway
      Penelope Conway says:

      I used my iPad for some of the video and my laptop for the parts with me in it. It’s a mac laptop which comes with the iMovie software, so I used that to put the clips together.

  10. Bonnie Burkley says:

    Pray sleep comes soon, dear one…I have to put socks on my Saran covered feet…so strange this MS…I can’t stand my feet not covered.sometimes 3pr. Socks day!!! This would be one! My sweet husband of 50yrs. has heart problems…I have been with him…not many nights apart. He has gone through my 36yrs. of MS with me….now it’s my turn! I know our Lord and our good children and grands will be help for Gramps and Nana! Love you, Pen!!!❤️✨

  11. josephine regan
    josephine regan says:

    This so describes how I feel . It takes ages to go to sleep my big problem is restless legs and arms they always start when I go into bed .last night I was so tired I really needed to get to sleep but no way could I sleep I was in and out of bed trying to settle my legs and arms down .I find sometimes eating a bananna and drinking tonic water helps but not last night .I got up this morn at 8am having had about 2hrs sleep I did a few jobs around the house and by 10.30 I was exhausted and I went back to bed and slept until 2pm.My sleep paternis all over the place and there is nothing I can do about it MS is a horrible condition .I just have to sleep when I can and my couch too is my friend .

  12. Julie Mitchell Dilbeck says:

    You guys are so smart! That’s a great idea.

    I know someone else with diabetic neuropathy in her feet. She places a big pillow under the top sheet, against her footboard, and that creates a tent for her feet. That might work for someone else, too.

  13. Nicole J Aromandi says:

    Thank you for sharing your experience I was recently diagnosed with MS and your posts help me so much…to know I am not alone I will be vacationing with you on my couch today.

  14. Liz Gordon says:

    Thank you
    I share many posts from your blog to bring awareness to MS. I find it is one of the most difficult illnesses to explain and no one believes it can’t be ‘fixed’. Your posts really help to just put it simply.
    So thank you again

  15. Beatrix Huber says:

    Uhoh. The same here. Got awakened by 2 am, which adds up to only 4 hours of sleep for me. It’s 1:30 pm here in the meantime, and I’m holding up doing chores and housework… just veeeeeeeeeeeery slow, wonder WHEN I’ll snore off in a quiet corner! Hang in there, Penelope, you’re not alone in this. Hope to sleep longer next night, for you AND for me. Hugs from abroad.

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