Image of woman sitting on the couch and reading at night.

Burning Midnight Oil: Struggling to Sleep

It is the end of the day, you cannot wait for bedtime. You follow a routine of bath, dinner, medication, and warm pajamas. Your body is ready, and your mind is ready. Take me to bed. It is winter and the nights are cooler, so the itching is less. You slide into bed and with some convincing, you drift off to sleep. Your body sighs deeply and sinks into the mattress. Then suddenly you are awake, unsure why, you try to turn over to shift your position, and then you feel it. It feels as if someone has ever so gently cracked each one of your ribs while you were asleep. Now if you are anything like me and your sleeping partner is a four year old dreaming cowgirl, then having your ribs broken is actually a distinct possibility. Too scared to move, as you are waking the reality of the pain is sinking in at a rapid pace. Roll over. Look at the clock and it is only 23:30, two hours after you lay down to sleep. That is when you know it is going to be a long night.

Growing accustomed to sleep issues

I know that so many of you will be able to relate to this. Struggling to sleep when you have psoriatic arthritis is one of the greatest challenges that I have faced. Considering that I have lived through three years of minimal sleeping and a colic baby, this is saying something. The beginning of this winter has been a rough one for me. Usually it takes around two months for the major winter aches and pains to set in on a daily and nightly basis for me. Not this year, we are aiming for overachiever this year in the department of putting me through my paces. Over the years I have become accustomed, and I use this term loosely, to not sleeping a lot. The few people who are very close to me have to listen to me grumble through the extra tired days, and they will ask me, “How do you cope?” Truth is though that sometimes, more often than I may care to mention, I do not actually cope. I just look ahead and do what must be done in that moment to remain a relative version of sane and “in less pain”.

The longer I lay, the more pain

I no longer go to bed a 9pm. I used to and loved it, but no longer do. The longer I lay down, the more pain there is. Ribs, shoulders, hips, back – they are my worst at night. Bedtime is now officially around 11pm. Sounds late, but I would rather have five hours solid sleep than eight hours of broken and disrupted sleep. By “solid sleep”, I mean getting up twice instead of 10 times. Before bed, I have a warm shower – not too hot lest I set off an itchy skin spell. I choose pajamas that are soft, smooth and not too hot, so cotton is normally the first choice. I drink a warm cup of herbal sleepy tea to assist my mind in shutting down for the night. My bed is normally made and the mood quiet and peaceful. Sounds a bit like a routine for baby person, doesn’t it. I drink my pain killers and crawl in to drift off until my inevitable rude awakening. When I wake up with all this pain, excruciating some nights, I no longer lie there and wait for sleep to come in bits and pieces again. I get up. No matter what time it is. I do not always do much, but I find that being up is less painful for me. I do small things, I make a cup of tea and pick up the things laying around the house. I straighten the house and bathrooms. When I feel that the pain is a little less, I will sit on my couch and read. Usually within an hour or two I am ready for round two of this sleep business. Warm bean bags and hot water bottles are always on hand during this nightly adventure to keep me warm and make me feel better.

My new investment for this winter is an eggshell foam mattress topper. On the advice of a friend whose mom suffers from rheumatoid arthritis, I bought one of these. I will be sure to let you know if it has the desired effect. It is said to relieve the pressure on your body and makes for easier sleeping.

What are your tips and tricks for getting through the long nights?

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Comments

View Comments (19)
  • Amyell
    9 months ago

    I know exactly how you feel. It takes forever to get comfy and finally you drop off! Only to wake 2 hours later because it hurts. I do the same as you, get up and move around until I feel I can try again! We bought a memory foam about a year ago and it does help. But I think it needs to be softer. See you in dreamland!

  • ClairG moderator author
    9 months ago

    @amyell. I am so glad to hear that the memory foam works for you, even if it is just a little. I can never quite decide if harder or softer is the way to go with a bed. Here is hoping for a better night tonight. – Clair, Community Moderator

  • Rojo
    9 months ago

    bbthodges: I recently saw my Primary Care doctor who not coincidentally specializes in geriatric care. I have been experiencing leg cramps for a year. He explained how the years take a toll on foot muscles and hamstrings. When I lie down the weight of the sheet is enough to pull my feet, toes first, away from my body, so to speak, towards the foot of the bed. The good doctor says this unconscious stretching before sleep causes the cramping (if not dehydration or whatever). He recommended keeping a scarf or bathrobe belt in-bed or close by. When cramping starts, I hold the scarf ends with each hand; the midsection under the ball of the foot and gently pull/stretch my foot in the reverse direction, i.e. up towards my knee. It works for me about 75% of the time. The other 25% I toss and turn which takes longer but eventually works or I must pass out from exhaustion.

    It seems there have been enough posts that mention leg cramps to warrant a tag of its own as a symptom of arthritis. I personally believe the two are related and not simply a result of aging. Best wishes.

  • Mr Benn
    9 months ago

    Ditto on the avg 3 hours sleep every night for the last 15 years. I use a solid bed as foam makes me sweat like, well lets just say lots of rashes. Even car seats are a pain. Everyone I know still thinks I look fine & normal just makes me sick how ignorant they all are. Anyone i the medical profession nowadays makes people like me suicidal as they are so ignorant of how much pain like us go through. I feel you lady!

  • ClairG moderator author
    9 months ago

    @mrbenn Don’t give up the fight. How are you feeling today? – Clair

  • ClairG moderator author
    9 months ago

    @mr-benn, Oh my goodness, I can only imagine how exhausted you must feel. Really wish that the world would get with the program a bit and stop assuming that everyone who looks fine is. Fortunately we have each other and we all know whats going on. Foam, must be such a pain as an irritant. I am sorry that you get so little rest, Have you found anything that helps you rest better? – Clair, Community Moderator

  • Mr Benn
    9 months ago

    Beginning to feel like a rabid dog!

    You know ClairG things have progressively been getting worse & worse for the wife and I. My health is not what people think it is, and last week after 2 of my Doctors begging the Psychiatric Department of the NHS here in Cardiff see me as an outpatient, my old psychiatrist said they would no longer help me. They suggested group therapy, even though I tried to commit suicide 10 weeks ago. That person was so upset with life that he just wanted to jump of a cliff for 10 hours in total and tried to get to a cliff but my brain is so damaged that I could not find a #60 bus that would take me to the cliffs that I know of. The bus stop had been moved due to large scale works in the city. Not, just that the company that is dealing with my case for PiP for the Government is lying about me to the government. They said I never showed up for an appointment in April when the wife & I did. Then they said that there was a conflict of opinion on my second interview. It’s now 6 months since I made my claim for Disability benefit and nothing has been decided yet as I have had no interview. My MP Anna McMorin is absolutely useless to my case. I’m being treated so badly by the British Government I may as well try suicide again. The NHS is a joke as they don’t think I can be in so much pain with food intolerance even though the pain can be 9/10 and plenty of blood is lost through my back passage when this occurs, but they don’t GAS! Nurses are useless in the UK. They have become battle hardened so they don’t hear my voice. Lastly, after begging a certain member of the BBC to help he was interested at first, but became disinterested when I said I cannot go on TV because my wife may lose her job as she works for a very prominent American company that doesn’t take kindly to any publicity of any kind. A normal man would have turned by now, but i’m struggling and beginning to feel like a rabid dog towards society!

  • bbthodges
    9 months ago

    My dear ClairG. I so understand what you are going through but I am 70 years old and you are much younger. I am so sad that you are having so much trouble especially with a young daughter. About a year ago I was also diagnosed with sleep apnea and had to start using a cpap machine. It truly does help me sleep and reduced my times of getting up through the night. The best part of this process is that the sleep doctor prescribed melatonin to help me get to sleep quickly and long without groggy feeling. This is what I take. The brand is “vitafusion” and I use the gummy sugar free (great tasting) has natural white tea and passion fruit flavors. The dosage is 3 mg. The directions on the bottle say to take 2 but my sleep doctor said 1 so that is what I take. If you can remember to take it a little before bedtime it will help you sleep when you go to bed. It honestly works for me.

    I know what you mean about going to bed at an early to get some rest but it is just impossible for me to do that. The other night I was really bad so I went to bed around 8:30 and woke up at 12:00 and thought it was about 6:00 am and ready to get up. The rest of the night was terrible!

    I really hope that you can get something or do something that will help you have a better night’s sleep. You also talk about having cramps in your legs. That is also terrible. I have them during the night and just cannot move! It hurts so bad and I need to get up and stand on them but it is so hard to do. I already have a hard time getting on and off my bed so something like that just paralyzes me.

    Take care of yourself and your daughter and I will be praying for you.

  • ClairG moderator author
    9 months ago

    @bbthodges. Thank you so much for your wonderful message and your well wishes. The nights are long, we could almost have mid night tea parties. I am hoping as we start heading towards summer that I will be getting some relief. I am glad you have something that works, I will certainly look into it and chat to my doctor. Yes getting up to stretch a cramp in a leg is no joke when the rest of your body does not want to work along. Thinking of you and wishing you a peaceful nights rest. Warm Wishes, – Clair, Community Moderator

  • Rojo
    9 months ago

    Pre-diagnosis I lived on five hours sleep a night forever (not a pain-related issue). I often worked 3-11 because it fit my sleep cycle. Over the years I’ve tried EVERYTHING to develop a 7 or 8 hour sleep routine. It doesn’t happen. Pharmaceuticals are either overkill or ineffective for me. Short story: I learned to live with it.

    Post-diagnosis: three years ago arthritic pain began interfering with my sleep. I’d wake after two hours d/t shoulder pain or back pain (side or back sleeping). Thankfully it’s not a 365 occurrence, but episodic. If I’m taking arthritic meds that effectively decrease inflammation I get to sleep. If not, the only effective relief I have found is to get out of bed asap and walk 50-100 feet. That particular pain disappears. I immediately get back to bed and usually get another two hours sleep. Yeah, it sucks, but if I remain in bed the pain stays and gets worse. Then I get no sleep plus I’m grumpy and disorganized.

    As with so many of the symptoms of this cursed disease, movement makes a positive change for me, especially when it would usually be my last choice. My best wishes to you all.

  • ClairG moderator author
    9 months ago

    @rojo Thank you for sharing, yes I must agree , getting up is the better way to manage and helps taking the pressure what hurts the most. Thinking of you. – Clair, Community Moderator

  • bdmc
    9 months ago

    It’s summer weather here in PA so the air conditioning is on non stop. I love having the room cold when I sleep but lately have been in pain all night. Fingers are the worst, but also feels like muscular pain everywhere (waist when I turn, along my forearms, feet, ankles). Also suffering from cramping down my right thigh. Very painful. Diagnosed psoriatic arthritis and take methotrexate, low dose of prednisone and remicade. This pain and daytime fatigue is really wearing on me.

  • ClairG moderator author
    9 months ago

    @bdmc – I am sorry to hear you are suffering so. the cold air from and A.C can certainly make it worse. Strangely I have also been suffering from cramps in my legs. mmm. Are you happy with the treatment that you are on? When are you due at the doctor, maybe mention to them that you are struggling. Thinking of you. – Clair

  • NurseNeptune
    9 months ago

    This is like you write this from my brain. I am really struggling with the lack of sleep and my husband just thinks it’s a simple fix like turn off the TV 30 min before bedtime or don’t do my skincare routine right before I lay down… its frustrating enough that I cannot sleep but then your partner thinks its such an easy fix like I haven’t tried just about every idea under the sun. Sigh.

  • Rebecca moderator
    9 months ago

    Ah, sleep. If only it were so easy, right?

  • NurseNeptune
    9 months ago

    Seriously. I get so (unnecessarily) upset with my husband because of how he can sleep so fast and easy. It just annoys me, lol

  • ClairG moderator author
    9 months ago

    Hi there @nurseneptune. I always think it odd, that others find it so simple. I hear you and I feel it 100%! The fatigue that comes with it. Do you get up or do you lay and wait for sleep to come? – Clair, Community Moderator

  • ClairG moderator author
    9 months ago

    @nurseneptune Indeed it is. I hope that tonight you will get some rest. – Clair

  • NurseNeptune
    9 months ago

    I tend to pace around the house. I can’t just lie there but I’m also exhausted so I want to lie back down. Ugh. Vicious cycle!

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