Sleep survey results: infographics take-1

Posted September 24th, 2013 by

Just yesterday, we announced the results of the PatientsLikeMe sleep survey and found that a bad night’s sleep is the norm for people with health conditions. Over the next week, we’ll be sharing some sleep survey infographics with our blog followers and the PatientsLikeMe community. Here are a few to kick us off…

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PS- Don’t forget to share them on your own Facebook, Twitter and Pinterest pages (#areyousleeping) so everyone can learn more about how sleep (or lack thereof) impacts our health, and how the conditions we live with every day can affect how we sleep.

Survey Methodology
Between July 15 and 30, 2013, PatientsLikeMe invited recently active members to participate in the PatientsLikeMe® survey; 5,256 members worldwide completed the entire survey. The mean age of respondents was 51 years (SD: 13); the age range was 18-87; the margin of error was 0.3 year(s); one survey respondent did not provide age. The survey represents a summary of the current insomnia experience as shared by patients with chronic illness.


26 Comments

  1. I have had problems with insomnia for over 5 years. Prescription meds help me get to sleep but my sleep is constantly interrupted by pain…I am very lucky if I get 3-4 hours of sleep total in 24 hours. mostly just cat naps/dozing off while up in chair or propped in bed. I am active as much as possible do as much as I can but just hurt so much…I keep falling between the cracks of our medical/medicare system and am being untreated in the most part. I am so exhausted…I am so ready to die…..anytime the Lord will take me is fine with me.

    One of the more aggravating things about insomnia is anyone who has not had it simply does not understand that you can’t just “close your eyes and go to sleep.” I don’t wish this on anyone but I think just once in a while if they could know what it is like …..they just don’t get it!!

  2. I identify so much with that. When I first crashed with CFS I was sleeping at least 15 hours a day. Now I can’t get enough sleep, pretty much like you Judy. You just can’t explain it to people unless you have been there.
    I can get pretty low so I can relate to the part where you wish it would all just end. The thing that keeps me going is I am lucky to have a husband and adult son who I know would find it very hard if something happened to me. I stay alive for them. Otherwise it would be so easy to throw in the towel, so to speak.
    Our medical system is so inadequate.
    I hope things will get better for you Judy.

  3. I have had insomnia ever since my back surgery in 1991. This year I took a test in the hospital that showed that I awake often, and then I only get 5-6hrs of Stage 1and Stage2
    No REM sleep and NO deep sleep.

  4. I had a sleep study done about 5 years ago. I had been dealing with fibro and CFS for about 15years at that point and I had a history of the sleep problems described by contributors here. Mostly, my husband and I could not understand why I had such nightmares, would punch and kick my husband during the night, I would fall out of bed and one time I cut my head open on the nightstand on my way to the floor! Results showed I had severe sleep apnea. No one was more surprised than my family doctor! Using a C-PAP machine definitely helps with the amount and quality of my sleep. I still have trouble with most of the symptoms, but they less intense with medication and the machine. I take the C-PAP with me everywhere – it has already been on cruise ships and several trips to Europe!

  5. I’ve had sleep disorder for as many years as I can remember. My body certainly does not remember any normal sleep patterns. Yes I can get one or two nights sleep with a new medication and then it stops working. Sometimes I do not sleep for 10 days in a row … 10 nights .. lol … but the nights feel like days. Perhaps I should take a sleep study? With so many disorders I don’t think anyone can penetrate the fog that is my brain right now ..

  6. I have sleep apnea, so the machine, cpap, does help…however, it is uncomfortable for me to wear. I have been taking zopediem (generic for ambien) for three years now because I can not go to sleep without it. My brain is constantly wired and talking non-stop. I was just told by a sleep specialist whom I saw most recently that the FDA made a statement that ambien has been said to make a person “dumb” (for a lack of a better word). I am wondering if this is true because I feel that I have so much more trouble concentrating and remembering things. I wish I had not been on it so long, and want to tell those of you who maybe have just started zopediem/ambien…not to do so. Have your doctor start you on something else. I am finding it very hard to get off of this drug. I do not sleep at all without it. I just started having sleep problems around the year of 2007 when I was placed on yvanse-medication(amphetamine) for ADD. Are all these meds we are on responsible for our insomnia…and are doctors not telling us. Why is this information just now coming out on ambien from the FDA? I just saw my psychiatrist two weeks ago and he prescribed more ambien for me. I saw my sleep doctor yesterday and he informed me with what the FDA had come out with on the medication. You would think my psychiatrist would have known this? Just be careful…and sleep well, my friends. I try to exhaust myself with exercise from 3:30 pm-5:30 pm. The thing with exercise, is it hypes me up…until late at night…but maybe it will work for you. I suffer from fibro, and I am lucky that cycling has not caused me pain. I ride my bike for 18 miles at a moderate pace, then walk my dog even though it hurts my back and legs to walk (fibro?) I then do several sets of floor excercises, and then I take a hot as I can stand, bath with lavender or camomille. Hope over-exhausting yourself with exercise of some sort will help some of you out there with sleep problems. If you have not had a sleep study done and you have insurance, I would recommend this. It won’t help your insomnia, but it will help you fall into the deep sleep you need if you get to sleep.

  7. I don’t sleep through the night.
    I had a sleep study and was diagnosed with Insomnia. I was relieved to hear that. Why? The physician was worried that I had sleep apnea; where one quits breathing. Now, we can rule that out.
    I dream, usually nightmares. I have trouble falling asleep and I wake frequently.The doctors had me taking xanax, and presently I am off them completely. I wear myself out when I can and head to bed. I find myself taking frequent naps. I want 8 hours of sleep. I either wake up in pain or sleep unrested

  8. I haven’t slept thru the night in many years. I also had a sleep study about 10 yrs ago. It said that I rarely get to dreaming state and that pain was constant. That was at least 10 yrs ago. They told me pain meds affect sleep, so I got off of all pain meds–it took 3 or 4 years!! I still never sleep more than a couple of fitless hours of sleep…And my husband doesn’t understand why my memory is so bad…I have been doing this so long that it is the norm… I also had thoughts of ending it all, but my husband says he can’t be without me, & I know my son would carry that burden with him to the end of his life–I can’t do that to either of them… I HAVE TO find a way to think more positively. The funny thing is that I used to be a “Personal Coach” who helped others find there “happier place”. I had clients all over the country ! And, according to my credit card company, I was earning more than independent coaches elsewhere in the US. I have had clien tos from Canada to Mexico, Scotland to Hawaii & Alaska! AND I worked @ home making $1200.00 a month. But somehow, some way, my nasty ex-husband (the 1 that gave me a black eye WHEN I WAS PREGNANT)!! found a way to make me lose it all–way too long story!! Sure,it took some time to recover from that, & the “$#/&@$#, found a way,albeit very underhanded, to make me lose it ALL. YAH! It took a long while to get over that one! I guess what I am saying, I had no choice but to get off my but, lose some weight (it happens whenyou don’sleep-there are studies that prove it!), & find more joy. I went to the Humane Society & rescued a sweet 2 year old dog–she is 9 now. I walked her, a lot, and it did help. I feel way better and am the smallest size of my life, even maintaining after 3+ months on the couch after foot surgery at the end of August. Yah, I wore out my rt ft walking my dog-lost all the cartilage in it. So now I have 6 screws in that foot, and you know, I have been gingerly walking on it for the lst week, and it is getting better!

    I guess the bottom line is, I had to find a way to make it all ok, ON THE INSIDE. My sleep is still really bad, but I look for ways to make me happy. My dog makes me happy. MD

  9. Sleep problems are new to me. They started with an upper respiratory infection about 3 weeks ago. I have been treated with cipro and another antibiotic said to be somewhat stronger than cipro. The URI has been cleared up for about a week. but I still have trouble going to sleep. I go to bed about 10:30 and usually don’t go to sleep until about 12:30 or 1:00 AM. Even then, I wake up a couple of hours later. Then, I stay awake again for a long time. Five hours of sleep is all I get, usually. I am troubled by sort of reflexive cough that I cannot control and that produces little or no mucus. I have to sit up in bed to go to sleep. I was diagnosed with IPF on June 12, 2012. The reflexive cough is very bothersome.

  10. I was diagnosed with Lupus nephritis last fall at 67 years old. At this time I have more trouble with diabetes managemen. Until I read this blog I didn’t realize I had trouble with insomnia. I wa k e at about 3 or 4 am and return to sleep about 6am. I fall asleep around midnight or 1am regularly. Everything that happens to me I chalk up to lupus. My doctors don’tdon’t know much about it.

  11. I can’t get comfortable and wake often with a body part numb “asleep.” I’m fatigued as it is with the severe psoriatic arthritis all over my body and when I don’t get sleep it’s so much worse. My job accommodates me (gratefully) but it is hard to exercise while being so tired. I know it’s needed and I try but I’m so exhausted. I usually go to bed around 11 PM and it never fails, I’m awake at 1 am, 3 am, 4 am and give up by 6 am. When I sleep well I have less pain. It’s a vicious cycle.

  12. I thought my 48-72 plus hours of little sleep were bad until I read the 10 days of no sleep one person had! In those hours I may get in a 2 hour nap and some nodding off that occurs at weird times. I nod off briefly sitting on my walker as I wait for the bus, reading, at a table while eating(the clang of dropping silverware awakens me), at home while typing at the computer(I awaken to find two or three lines of a single letter repeated, one time a ‘z’, short for snoring, I guess), and at other odd times and places. It is embarrassing to have people come and ask me if I’m o.k., though I do appreciate that there are people who care enough to make sure I’m o.k! In 1995 I was diagnosed with sleep apnea and periodic limb movement disorder and put on Sinemet. In 2008 the sleep study was repeated with little or no REM sleep if I am remembering correctly. I was diagnosed with RLS not PLMD and put on Mirapex and CPAP. That year I began to have tremors in my left hand, but was told it was essential tremor and that ‘I was just getting old’. Since age 50 my degenerative arthritis has worsened with varying areas of severe degeneration of the spine and knees. A total knee replacement of one knee was done in 2010. In past years beginning in 1995 I had cortisone injections in the one knee and in the lumbar spine as the pain was intolerable. In May of this year(2015) I had an epidural cortisone injection for a compressed L4/L5 nerve that had been severely painful interfering with ability to function in ADL. In 2011 was finally correctly diagnosed as Parkinson’Disease. Through these years I ended up with other pain related issues of diabetic peripheral neuropathy, increased severity of RLS to 24 hours daily such that to be at rest was painful; a constant need to stretch legs, to want to rub away the crawling things inside and with other chronic pain with most meds no longer helpful. I also developed a pinched ulnar nerve. Before the Parkinson’s and for at least a year after diagnosis I would sleep almost solid around the clock day after day. By 2012 the lack of a full nights sleep was creeping up, but I was so grateful to be able to stay out of bed that it didn’t register that my ‘normal’ sleep was getting shorter. In May 2014 had severe lower limb edema with diagnosis of chronic venous insufficiency. Walking hurts as legs are heavy and edema of entire feet surfaces makes walking painful and causes an imbalance already part of Parkinson’s. This causes near falls and odd movements to keep from falling which can also cause pain. About four months or so ago the lack of sufficient sleep became the severe insomnia described earlier. All these ‘things’ have not been addressed early medically even though I have been up front about symptoms. Because researchers look at this info I want to say that I have long had major depressive disorder, anxiety, high blood pressure, obesity, TBI and am dealing with a rare genetic eye disease with no cure and no treatment.

  13. I was diagnosed with insomnia around the age of 16. I just could not sleep. I started with night quill and over the counter so sleeping meds which work at first but then need more to get the initial reaction. I was put on ambien which worked well but my insurance only covered my first script so then I just had to deal. I’m now 30 and on bad weeks I’m up 3 nights by the 3rd day I’m so exhausted tthat start to have hallucinations. Idk y my mind is wired at night but can sleep during the day but let me say sleeping all day is depressing in it self. I get so depressed that I sometimes won’t even bother getting out of bed for days without even taking a shower. I suffer from depression and very bad anxiety which only makes sleeping nearly impossible. I’ve been on ambien, restoril, trazadone, seraquil, along with others but it seems these meds work for a couple nights then my body builds a tolerance. I just want to sleep at night and awake in the morn ready to start my day. No one understands this about me. I’ve been told so many times just go lay down close tour eyes… Ummmmmm I WISH it was that simple but its not. I hate being up all night then sleeping during the day but man do some ppl think I just do this BC I want to. I don’t feel line I’m normal at all and my family’s and loved ones comments get so frustrating. If I could go to sleep at a decent hour I absolutely would. I don’t like my life at all the way I have been having to live it. I’m back in church. I found a new church and by far the best church I’ve been too. Its called excel. Visit their website @ http://www.excelchurch.com all of our pastors messages that he preaches are there free of charge. I’m hoping my regained faith is going to help but I’m 6 months in and I still can’t sleep. This is my 2nd night no sleep. I need someone to talk to who understands how uncontrollable insomnia is BC no one around me understands that I can’t control it. The most heart breaking thing us when my teenage daughter is with me and I sleep the day away then she gets upset and I’m left feeling horrible. I missed a Councillor appointment I was suppose to go to with her BC she has a hard time explaining and or talking to her but she talks to me about everything so I was suppose to go with her and help her get out what her Councillor needs to know but I fell asleep BC I didn’t sleep for two days. I felt like the biggest piece of crap. She was so disappointed in me and her father was furious. How do I get them to understand I just can’t control this. I seriously need someone. I need help!!

  14. I am 77, for close to 30 years I have had hand tremors, then came movement in shoulders, body and legs. At times I get this odd feeling in my chest that id hard to explain is kind of an out of the body feeling that I am away out from my body and I need to reach very far out and pull myself back inside. At times it’s like I have to release my shoulders for them to shake to release something. then for many years I have suffered with Restless Legs with a kick every 30 seconds. I have been on many different drugs for Parkinson’s with no results until Requip and now Requip XL 8 mg twice a day are a great help not a cure. My nights are not good.

  15. I have ALWAYS have had trouble with sleep from birth to adult age. I guess part of it is due to PTSD, not knowing who or what will happen while I sleep. It didn’t help matters much that I grew up in a VERY DYSFUNCTIONAL family setting.` I also have other chronic, life changing issues that I have to deal with as an adult. I have fibromyalgia, arthritis, profound deafness & progressive hearing loss in my “good” ear. I had a stroke when I was 41 yrs of age (am 57 now). It does help me to have my dog here with me. 🙂

  16. In going through the comments saw my name. Did not remember posting June 2015. I can say that the continuing insomnia is doing a number on me when I can’t even remember such a recent post. I continue to have 24-72+ hours of no sleep other than the afore -mentioned sleeping in strange places. Both my PD and the eye disease, MacTel, have worsened somewhat. Poor balance remains my most difficult symptom to conquer. I believe the insomnia was responsible for a serious fall two days ago. I fell backwards reinjuring lumbar spine and both hips, left very, very painful. I had hoped, perhaps unrealistically, to have the recent physical therapy give me the improvement needed to put away my walker. I had seen that happen to someone in a support group for PD. I have generalized pain issues from different conditions and that definitely affects my ability to sleep. My sleep study for this Monday had to be cancelled as I have to take the bus there and back and problems from the fall make that too difficult to do. Will reschedule, but had looked forward to finding out what may explain some or all of the insomnia.

  17. I have had insomnia for about 18 months now. It started with not getting to sleep until after 3am, every few nights or so, which meant I had 4 hours sleep because I woke up at 7am. Then I found I would nap for 10mins here and 20 mins there.

    I have several health conditions going on, I was forced to take medical retirement from my job when I was only 36 as I had an accident in 1993 that ultimately put me in a wheelchair. I wasn’t paralysed, I suffered from extreme back pain that wasn’t dealt with properly by the medics at the time, and after a fall in 2010 they were forced to operate, the operation was successful and I could walk with sticks but then I had an accident at the health centre that put me right back into a wheelchair, and I have very bad arthritis is my spine with adhesions, I also have hypothyroidism and I’ve just been diagnosed with pernicious anaemia.

    Admittedly I have had sleep problems because of my back, but as I said 18 months ago I started sleeping for 4 hours a night only, and then I’d go with one or sometimes two nights in a row per week with no sleep.

    I don’t feel tired, I seem to go to sleep suddenly and I always wake up at 5am every morning irrespective of what time I go to sleep so, it could be that I’ve only had an hour or so, because I fall asleep later than 3am some nights, and when I waken in the morning, it’s not as I used to wake up, dozy, and half asleep, sort of warming up to getting moving for a new day, no this is straight awake, where I could start work right away if without a thought, it’s as though I haven’t been asleep, and regardless of how little sleep I have which can average 4 hours as I said, then I feel rested, although I can’t possibly be rested with only 2 hours sleep, but that’s how I feel.

    This is not sleep as I once knew it, this is a who,e new concept – as though my brain suddenly switches off, and switches on with full power, with my body in tow, to face the day. I tried to stop napping, as I don’t work and I’m at home most of the time, but to be honest, it made no difference to the night activities, so I reckoned that if my body wants to nap every now and then through the day, then it’s not stopping me sleep at night, because I still don’t have the proper sleep at night even though I don’t nap, which to me doesn’t make sense at all.

    Then I find after many weeks of little or no sleep, that I am so exhausted, that my body completely gives in to a whole nights sleep, and I waken from that feeling refreshed to face the day ahead.

    I believe that Pernicious Anaemia can cause abnormalities in the sleep pattern, and having been in the early stages of treatment of that, I wonder if my old sleep pattern will return. That information I read said that the brain forgets how to regulate your sleep patterns, and in my case my brain seems to forget how you go to sleep, because no matter how hard I try, sleep eludes me when I need it most. Without sleep, my body fails to fight infection, to recover and renew cells successfully, and I do firmly believe that my current sleep process has aged me years in the space of 18 months. I now have bags under my eyes, and all the other characteristics facially of someone who fails to rest properly.

  18. I will turn 60 the end of this year. I have suffered since I was 5, according to my Mom who passed over Sept. 2014. My story is a long one and will hit the highlights, or lowlights as I think of them now. When I was 5 I would wrap my painful joints with ace bandages. I would continue to play. Until one day my Mom said I had asked for another ace bandage. There were no more I had them wrapped around most of my joints. My Mom had stopped and looked at me. I wasn’t complaining so when I asked for the bandages she gave them to me.that was the beginning.My right knee would dislocate many times during childhood. Never told my mom, I thought this happened to all kids never told anyone. As I got abit older, the pains in my chest started. I now know it’s the Fibro in the muscles and tissues in my chest. I’ll finish another time. My neck is very painful tonight. Warm, gentle hugs to all goodnight.

  19. I’ve just recently started having problems sleeping. I think a lot of it is due to a med change and also that I no longer drink. I can’t remember having sleep problems before but I drank for a very long time so it’s possible. I’ve tried melatonin and velarian root to try and help me sleep and neither works. I really don’t want to take a sleeping pill but I don’t know how much longer I can deal with this. I’m walking in a fog going on as little as two hours of sleep up to four hours of sleep. I’m at the point where something has got to give.

  20. I am 81 and I began 6 months ago not sleeping unless I take Benadryl or Tylenol pm or melatonin or all of them which gives me a about 2 hours of sleep. My Dr. Prescribed Ambein but I really don’t like being dependent on it because it really knocks me out. Suggestions, please.

  21. I have been using sleep aids since 1977 after I was discharged from the military. I haven’t had a normal nights since. I have tried everything. I use a combination of Ambian ad klonopin. The best sleep aid was over prescribed by doctors and isn’t prescribed anymore. triazalam worked best for me period. I have a real hangover from the ambian, the Ambian gets me over the threshold and the Klonopin keeps me asleep. it just takes me a good hour and half to get moving in the mornings. my sleep studies are the same I zilch for good REM sleep and I am constanly on the move in my sleep to the point where I’m tired when I wake up. my suggestion is save your money sleep studies are a waste of time and money.

  22. I would like to tell my insonnia esperience- after 35 years of light, light sleep and long waking periods it all ended the day I took the first thyroid tablet. For 4 month now have been sleeping heavyly every night. It is such a big difference!

  23. Wow, is all that I can say so far. There is so much information on this thread that I am excited to read more and more. I have also been diagnosed with sleep apnea. At one point in my life I was overweight which is one of the contributors to not sleeping well. I am suppose to sleep with a mask and did at first. Then, I became ill and stopped using it all together. It did help but it was very uncomfortable to sleep in one position all night. Anyhow, now I have exchanged day for night and visa versa. A lot of the time I sleep during the day. At night I have a very hard time to fall asleep and when I do it is not for long. I wake up from any little noise, mind you I have always been a hard sleeper the type you can throw a grenade next to the bed and I would not hear it. Now, no more I really miss those nights that I could sleep good. I have taken sleeping pills which help when I am already exhausted from days without sleep otherwise they do not work. I just do not take them unless I really really need them which is not a good thing but any how I have lost 40 pounds being sick and I am no longer obese but still my lack of sleep keeps me down most of the time. Today, I got up at 4am and can not go back to sleep this is an almost everyday thing. If I sleep past 5 am it is sleeping in so to speak for me. I am just tired all the time and really feel like doing NOTHING AT ALL during the day except sleep if and when that happens. Thanks for the information I have read lots of posts and they have been helpful to me
    Thank you and good luck to all.
    Vivian.

  24. Winter is my worst time of insomnia I think. At least this winter has been. I am either freezing or hot. I am 74. I got to sleep for 2 hours and then stay awake for 2 or 3 hours– I was staying in bed, however I now get up and play games on my computer Slots, or solitaire until that makes me sleepy. Then I got to bed. And will sleep for about 7 hours. If I have to wake up at a certain time I will set my alarm. I don’t think it’s my diabetes 2 I think it’s the weather. I have low blood pressure and temp when I lie down. My temp lying down is 94 therefore I have an electric blanket to keep me warm, once warmed up I am fine. sitting down my temp is usually about 95.5. Blood pressure is always low one time it was 90/50 and other times it’s 112/50. When I was in the Navy they told me by all accounts I was dead. When I have been in hospital they go nuts but they don’t listen to me I know me they don’t know me.

  25. interested in getting off of ambien, interferes with my memory and thinking. any advice welcome

  26. I don’t function well when I’m having insomnia. I need 7 – 8 hours sleep to feel rested and sometimes I get it. On other nights I have trouble going to sleep and staying asleep. Like one of the commenters above I wake up at the same time regardless of how long I’ve slept. On the bad nights I won’t know I’ve been asleep except for remembering a part of a dream. I try not to watch the clock but it is hard to not check and see how long since the last time I was asleep. I have diagnosis of MS, bipolar, fibromyalgia and high blood pressure all of which I take meds for and try to manage with adequate rest. My heart goes out to those who suffer with insomnia every night at least I have some nights with good prolonged sleep.

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