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Painsomnia: An Exhausting Problem

Painsomnia: An Exhausting Problem

One of the most commonly reported symptoms of multiple sclerosis is fatigue. So it’s no surprise that those suffering with MS may hear that they need to get some rest. Indeed, many suffering from MS will certainly try to get some rest and will end up failing miserably at that endeavor because of what I like to call “Painsomnia”. Painsomnia is the inability to sleep or rest because your body is in pain. It’s something that affects a large number of those with chronic illness, myself included, and it can make the normal fatigue we suffer from even more unbearable.

There is a popular meme that is often distributed on social media that reads that “It takes people with MS five times more energy than people without MS to complete a simple task”. I don’t know if that is scientifically accurate but I can certainly attest to it feeling that way. Life with MS is draining! On top of the fatigue (which feels like trying to go through life while constantly swimming in quicksand), everything seems to exhaust me much quicker than it did prior to getting this disease. I was once a ball of energy that seemingly never needed rest or sleep. These days, I’m the opposite of that. I grind to a halt fairly quickly, faster if the weather is warm.

The thing with MS fatigue is that most of the time, no amount of sleep is going to help. You’ll still have to slug through many days and fight through it as best you can. However, that fatigue is made exponentially worse when you can’t get a good night’s sleep. To really survive that crushing fatigue, you need a good foundation of rest that is, unfortunately, very hard to get because of the MS-related pain that many of us experience.

For some, the pain is a burning sensation, like our bodies are on fire from the inside out. Others experience a dull but constant throbbing, or numbness, or even tingling. It may not even be what you normally consider pain, it could just start as a feeling in or on your body that doesn’t hurt per se but becomes intensely annoying. I have at times had a sensation where my legs felt like they were soaking wet, even though they were bone dry, and had been all day. Others develop an itchy feeling that they can’t find relief from. For many, spasms are another issue that just won’t let up at night. There are a wide range of different pain and sensation experiences that can affect our ability to sleep. I lump them all under my “Painsomnia” classification. No matter how it feels, it’s a physical sensation that makes it hard to sleep, hard to even get comfortable.

No tossing, turning, or counting of sheep seems to help. Laying in bed in pain really only makes you focus on it. That’s what happens to me after a while: no matter what I try to think of, my body won’t let me be distracted. It’s enough to drive a person crazy! All while your body feels beat up, sluggish, beyond tired, like you just spent a day doing hard physical labor. All you want to do is lay down, close your eyes, and drift away. But you can’t. Can you imagine being incredibly exhausted yet unable to sleep? It’s truly awful. All the while, you know how extra exhausted you will be the following the day. For people that deal with fatigue on such a regular basis, it seems like an especially cruel punishment to not be able to sleep.

People do their best to battle painsomnia, though none of the methods are exceptionally effective. Some utilize medications to help get relief from the pain or spasms. Others, like myself, who have exhausted many medications, rely on medical marijuana. And still others will utilize a sleeping medication, whether over the counter or prescribed. There are cons to each of those though, from unwanted side effects, to being costly, to adding additional grogginess the following day. I sincerely hope to hear from others in the comments on how they battle this common issue. If you’ve got a great solution, I’m sure many of us could benefit from hearing it, so please share!

Thanks everyone! – Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Nettieforce1
    7 months ago

    I now use cannabis, it helps a lot. Still experimenting with edibles and want a vaporizer.

  • Nettieforce1
    8 months ago

    There is nothing subtle about my pain. It feels like a giant is squeezing my lower legs without ever stopping. It is non-stop, level 10 on that scale. I don’t sleep, I stay awake until I pass out. I’m on all the standard me meds and a lot of morphine. Am now waiting for my cannabis card.
    Painsomnia is a great word, right on the nose. Thanks for your article.

  • Chispa56
    2 years ago

    Hello Devin…Thank you so much for this article. Navigating nightly pain from MS is an ongoing and often disappointing endeavor. I have tried numerous sleep aids and pain medications. The side effects often prohibit me from continuing use. I, like you, have found that medical marijuana is the most efficient and effective. I testified in Annapolis during the process of legalizing medical marijuana in Maryland. It was heartbreaking to see so many people who are suffering and begging for the government to legalize marijuana so they could ease their own or their loved ones suffering without breaking the law. My husband and my children have had a front seat to these nightly episodes of unbearable pain. Currently, I am receiving physical therapy and massage to give me some relief and give me exercises I am able to do and I am eagerly waiting for the dispensaries to open.

  • Devin Garlit moderator author
    2 years ago

    Thank you Chispa56! And thank you so much for your efforts to help legalize MMJ. I hope that it is legalized in your state soon, it really does make a massive difference in so many people’s lives.

  • AnniePizazz
    2 years ago

    This is my first comment after joining. I hope someone may understand, I’m not normal. LOL Normal is a dryer setting. Getting serious, sleep has become very elusive with MS. Sleeping pills, psychotropics, pains pills etc, only made all symptoms worse. I did some research on what normal sleep was. I found many articles saying 8 hours is ideal. But I also found interesting articles on sleep patterns over history of time. Before electricity once night fell, they would sleep, then wake then sleep. 4 hours sleep, a hour or so awake with candle light, then 4 or so hours more until sunrise. I then had an “aha” moment, My sleep patterns when not challenged by a work schedule, would naturally fall into a similar pattern. So for 20 years, I have changed the way I think about sleep. Not stressing, not worrying or not feeling upset that I am not sleeping normally, which these feelings only made the painsomnia (love that term) worse. I find myself now awake at odd hours, sleeping at odd hours – But I am sleeping some. I also have different things I can do at night, Depending on what keeps me up, I look to do something that advances my next day. Even if it is listening to music, writing in a journal, or something boring to make me sleepy. But even this is different now 2 years after diagnosis and 15-20 ? years maybe more, many more years of symptoms, my activities during the waking hours are different. So now, it is time to figure out what else I can do while awake.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for sharing AnniePizazz!

  • Marla
    3 years ago

    Since I have Narcolepsy as well, have twice the problem with fatigue. I spend the majority of time in bed. Even though I sleep a lot, I never feel refreshed. I just feel groggy and weak. Basically, I don’t have much of a life and it’s beginning to take a toll on me emotionally.

  • Devin Garlit moderator author
    3 years ago

    So sorry to hear Marla! I hope things get better for you soon! Thank you for sharing.

  • Erin Rush moderator
    3 years ago

    I am sorry you deal with this, Marla! As you can see from the many comments on the article, you are not alone. I hope your physician is proactive about treating your narcolepsy. Thank you for sharing and I sincerely wish you a good night’s rest! Best, Erin, MultipleSclerosis.net Team Member.

  • Hlaine7
    3 years ago

    Thank you for writing this story it makes me not feel so alone with these symptoms

  • Devin Garlit moderator author
    3 years ago

    Thank so much for saying that! I feel the exact same way! I’ve gotten a tremendous response to this one, so know that you and I are most certainly not alone!

  • Susan
    3 years ago

    Love the descriptive name. So accurate! After getting married several years ago, and getting rid of my adjustable bed, I found I can’t sleep in a regular bed anymore. Ugh. I can’t sleep on my right side or I get pain and spasms in my leg during the night and into the next day. Can’t sleep flat on my back either so I now sleep in my recliner which is equipped with a memory foam pillow and sheepskin I alternate with an eggcrate cushion and sheepskin. My backside is sore most of the time. So I think our next bed is going to be a double adjustable bed so I can sleep where I want. I have medical MJ but am having trouble finding an indica that isn’t so strong that it makes my heart rate speed up. Kind of unnerves me. Works good for the spasms. Need to maybe find more of a CBD variety I guess. It’s still touch and go in my state about dispensaries. The state did a sweep and closed them all down not long after Medical MJ was legalized here. They have a moratorium on the two dispensaries in the neighboring town at the moment so I am able to get my prescription filled there for the time being but am waiting for them to get a variety that has less psychoactive properties to better help me. Probably shared more info than I needed to. 🙂

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing some of your experience! I’ve found that with Medical MJ, finding the right strain can be pretty important. They all have different percentages and we all react to them a bit differently. Very sorry to hear about the issues in your state. A good dispensary can really help you pick the right strain. Hopefully, someday soon, this will be more accepted and understood!

  • RhondaStahl
    3 years ago

    WHAT A GREAT NAME TO GIVE IT! I only recently have developed this one (to add to my litany list of MS crap, aka sx’s) Last week I was so incredibly tired and my feet hurt like I had been on them all day, and I hadn’t, you know after you’ve had MS a few years you “forget” you have it….so I didn’t even think “MS pain” (Yes, I know crazy huh?) I thought, “Man, am I getting old.” DUH! Sometimes I get nutzo with self medicating (not dangerously so)…so I took 4 Motrin smoked some weed and went to sleep finally, awakened feeling great…or great for me #shrug

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing your story! Sorry for the delayed response, been having a bit too much Painsomnia myself lately!

  • IamDHP
    3 years ago

    AWESOME read! I haven’t found anything that helps the painsomnia. I have tons of meds, but marijuana chocolate bars help the pain not be so annoying.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading! Medibles are so helpful! Especially when chocolate 🙂

  • Cryptodad
    3 years ago

    thank you for giving us the correct name for this problem.

  • Devin Garlit moderator author
    3 years ago

    Thank you and thanks for reading!

  • sky65
    3 years ago

    Very interesting article, I was diagnosed 10 months ago with MS, I feel that I’ve been on a spiral down ever since. I have had spinal surgery with rods inserted and have had 1 knee replacement & require the other leg done now, but can’t find a dr to do now I have MS everyone solution put me in a wheel chair to limit my very frequent falls so I don’t hurt myself. I suffer chronic pain and have been a large regime of strong pain killers including lyrica, endonine, and currently take Gilenya for my MS I don’t sleep much due to the pain & have so many symptoms that you talked about that I never realised were being caused my MS Thankyou for helping me understand my MS better than I did before.

  • Devin Garlit moderator author
    3 years ago

    Thank you! The pain associated with MS is so often misunderstood or not considered an actual issue. I hope you find some relief and I’m very happy to hear you got something out of the article. It’s always nice to hear that! Thanks so much for reading and sharing your story here!

  • Deborah
    3 years ago

    Great article – thanks so much! I have PPMS and sleep has always been an issue for me. Not only do I have leg pain but my brain always feels like electricity is running through it and it’s nonstop. After I moved from South Florida to Denver to escape the brutal heat, I decided to experiment with Hemp. I started taking Charlotte’s Web Hemp Oil sold by the Stanley Brothers in Colorado Springs, which is legal in most states. It’s toned down the brain electricity to almost nothing. I’ve also tried all the muscle relaxers but always had side effects so I did some research and read about 5-HTP, an amino acid which increases serotonin in the brain. I buy the Natrol Time Release 100mg pills from Costco and I take one in the morning and one about an hour before bed. It’s been a miracle for me! Not only do I sleep like a baby but my mood has been lifted from the MS-related depression. I read many reviews on Amazon about how 5-HTP has changed people’s lives and it certainly has changed mine! I hope that one day, MM will be available to all who are suffering.

  • labsrspecial
    3 years ago

    Thanks for the info on the 5-HTP in the Springs here!! Happy shopping!

  • Devin Garlit moderator author
    3 years ago

    Deborah, thank you for sharing that! I am always interested in hearing what works for everyone else. All of us are so different and have tried so many things, it’s great to find out what works and doesn’t for others!

  • labsrspecial
    3 years ago

    Devin my name is Melinda,19yrs with MS secondary progressive I also have turned to medical marijuana- and have found so much relief at night, during the day from pain! Cold weather, Warm weather. It has been an added relief and benefit to my daily living and my life in general. My pain scale days now stay at about 3-4, from a 7-9,!!! Too me that is huge! From sleeping 14 to 16 hours/ day on pills(forced sleep). I go to bed at night at 9pm get up when I choose- PERFECT living– The right strains, knowledge, not everyday is perfect but is way better then then it was when I was a pill popper!! Please don’t give up on your medical marijuana–

  • Devin Garlit moderator author
    3 years ago

    Thank you Melinda! I most definitely haven’t given up on medical marijuana. It’s a massive help for so many things, though I haven’t used it much at night time. I just wish it were a little more inexpensive and easier to obtain! BTW, I wrote about my experience with that here: https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/

  • hQpyf7
    3 years ago

    thanks Devin for putting into words what i’ve been saying to doctors and friends & family for years. though not near as accurate are your examples. word finding thingy. the hidden pains that people/doctor’s can’t see, like a bone fracture or spots on brain, yet we ms’rs have these weird sensations.

    for years i’ve complained about the “itching inside my spine”, intestinal pains, and right eye pain and dull throbbing pains and of course the pins/needles thingy.

    some of us have other issues that are not ms, like spine injuries, that some doctors say the associated pains are ms, or won’t operate due to ms. not everything is ms though, right? a new surgeon says i have severe problems in cervical damage(not ms though it tweaks my ms i’m sure). i think i’m gonna try the surgery as i’ve tried every thing else for that over the years. may be that would help a bit with that pain.

    i only mention that because some doctor’s don’t get the ms pain thing. after you’re diagnosed with ms then all of a sudden everything one has symptom wise is now ms related. which is frustratingly silly.

    so glad you posted your words. i’ve sent them onto my family to hopefully explain what I haven’t been able to these years verbably. and will keep it for next appt just so i can remember the descriptive words! ms and its funny fleeting memory thing, right?

    the MM thing has been suggested by quite a few top notch neuro’s for my ms and especially the sleep-pain issues. i may try it, I think about it often when my sleep is bad. i still use the VA and it is federal care and MM is against federal law. a catch-22 thing from my perspective. most docs at VA would prefer patients get relief and try things, that is they wouldn’t care in this day and age. but there are some that would see it on a test and could write neg comments and that “could” lead to, in extreme case, discontinuation of service or meds. just sayin. veterans have seen odd things at VA. too bad the feds don’t release the use of MM versus state laws. and some states just have too many hoops and high MM cost that people don’t want to deal with. almost like that carrot hung in front of you for relief.

    like many ms’rs, we get to a point that we say screw it all, we’ll try something new. some folks in our ms groups have found good consistent relief from MM especially the better quality sleep. for now I’m on the fence but glad you wrote about it and its pos help.

    so happy to read you have found some relief and of others too. appreciate your story and insights.

  • Devin Garlit moderator author
    3 years ago

    Thank you so much for reading and sharing your thoughts! I very much appreciate hearing from others and I hope your sharing of this article will help! It hadn’t dawned on me the catch-22 of MM and the VA. I’m sorry to hear that. My grandfather also had MS and relied on the VA and I know that did not always go smoothly. I hope your experience is better than his. You are also not the first person to have a not so great experience with regards to discussing pain without your doctors. Hopefully as more awareness is raised, more doctors will realize just how awful and real a symptom of MS pain really is. Thank you so much again for sharing your story here!

  • Azjackie
    3 years ago

    Another great read. Thank You. Painsomnia is a great way of explaining it.

    I suffer from burning tearing back pain, fatigue and spacticity frequently, imbalance always, and stress. All of this prevents me having a restful nights sleep and I often develop depression. I try meditation for relief.

    It is difficult not only for me but for my family, boyfriend, and friends to watch me suffer. They don’t know how to help. Just as we fatigue I think they do to from helplessness.

    Take last weekend as example. My Brother and I were visiting our elderly parents. Keep in mind my Brother is supportive, intelligent, and understanding. He has been a fragile diabetic since 1998 on an insulin pump.

    After dinner I got up to go to restroom before driving. I fell really hard on the floor down the hall. I crawled 3 feet to the sturdy door frame to stand. Everyone was asking each other what happened and my Brother blurts out “put her in a wheelchair”. Not only was I hurt and startled from the fall but heartbroken from his comment.

    As I was crying driving home, I realized he was exhausted from helplessness.

  • Devin Garlit moderator author
    3 years ago

    You discuss a very important issue that I see very frequently, even with my own wife. That helplessness our family can feel. I can not imagine what it is like for them to have to sit back and not be able to do anything that can really help us. It must truly be awful. That leads to situations like you mentioned, that frustration at not being able to help can boil over, no matter how well intentioned they may be. Thank you very much for sharing that.

  • tfs
    3 years ago

    Thanks for another good article. I think I am a lucky one so far, and I do take an anitdepressant at night time which also works for insomnia. I have to commenton Stephanie417 comment though. It is so very difficult when significan others are not supportive. That is my situation as well. Fortunately, I live near a major centre that has an MS Clinic. I was referred to an excellent neuro-psychiatrist who helps. Be proactive with your own health care. Depression is really tough.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much! You are so very right, not having a significant other that is supportive can be truly awful. Glad to hear that you are getting support that you need. Thank you for contributing here, it is always very, very appreciated!

  • Stephanie J
    3 years ago

    My name is Stephanie and I’ve had RRMS for 23 years. Fatigue has always been there, but had just recently starting affecting my daily life in a very difficult way. I no longer can do things I’ve always done and the word “can’t” is a very hard pill to swallow. I don’t have any answers but I’m looking for one also. My husband says he understands but it seems that he is bothered by my lack of what i can’t do without the understanding. I’ve started heading into a depression and I’m desperate to find a way to help him understand. However, he says he knows it all and I can’t even get him to read information about it. Does anyone have a suggestion, or maybe been through this same thing. For 8 years he was wonderful, now he just send disgusted and annoyed me. I try my best, but I’m just so tired. Any helpful info would be great! Stephanie

  • Devin Garlit moderator author
    3 years ago

    While my current significant other is very understanding, I like many of us, have dealt with my fair share of people close to me not really understanding. In a away, they can never fully understand, but you at least hope that they can educate themselves on the topic. I often think reading about our disease is the number one thing anyone can do for us. I don’t have any sure fire suggestions. But I’d say, and you probably have done this, sit him down, explain how important it is for him to understand and read information about this disease. Really explain just how important it is too you. I hope that he listens and the situation improves for you. If not, you have the whole MS community behind your back, remember, you are never alone, and there are people that understand!

  • LeeAnn
    3 years ago

    I suffer every night from trying to get to sleep. I keep getting told that I have to develop a better sleep pattern and stick to it. Oh really?? No matter how much I try to explain my situation it lands on deaf ears because every one knows about this better than I do!! So I turn a deaf ear on them and do what works for me. I have tried so many different things and the only thing that helps is to just stay up until I’m ready to drop and usually I can go to sleep then. It may be anywhere from midnight to 7 am before I can go to sleep so I sleep until almost noon. I get the itchy feeling, spasms, sore muscles in my neck and my head feels like it’s laying on rocks instead of a gel memory foam pillow. I just recently went through a bought with severe vertigo which put me in the hospital twice. I still get small episodes of it but I can deal with that. I know that finding what works for one doesn’t work for the next person and I just do what works for me. MS is an unforgiving disease that I wouldn’t wish on anyone but it is what it is and I deal with it. What else can one do except be thankful that it’s not anything worse because there definitely are worse things out there that a person could have.

  • suze b
    3 years ago

    Hi LeeAnn, Can identify with a lot of the replies to Devin’s great article, painsomnia is a big one for me for 25 years now, like you i’ve tried a lot of different ways of dealing with pain & fatigue but staying up until i’m ready to drop works well for me too, usually i get about 4 hours before i’m tossing and turning with the pain again, sometimes I’ll manage to get back to sleep but more often i have to get up and wait for exhaustion to return, hence I loose a lot of my day time with the need to nap. It’s a really difficult part of MS and very few people truly understand it so i’m grateful to read others who share the experience, thanks 🙂

  • DonnaFA moderator
    3 years ago

    Hi, suze b, we’re glad you’re here! You’re not alone, as you can see, with having sleeping problems. Getting A Good Night’s Sleep With MS? A New Study May Be Onto Something some tips and tricks, and an interesting concept, that may help you to catch a few more z’s or at least in providing talking points to bring to your doctor.

    I wish you many peaceful, painfree nights. -All Best, Donna (MultipleSclerosis.net team)

  • Devin Garlit moderator author
    3 years ago

    So sorry to hear you have these issues as well. Also sorry to hear that you deal with what many of us deal with, people that believe they really know how to help you. People have great intentions but it can be so deflating to here something like that. Sometimes, you just want someone to listen and understand. Ugh, I have had bouts of vertigo and it is truly, truly awful. Thank so much for reading and sharing your thoughts. We may not solve all of our issues but it is still comforting, to me at least, to know that we aren’t alone, that others are fighting this battle too. Thanks again!

  • Julie
    3 years ago

    I experience a heaviness to my body as though it feels like lead. I feel as though I’m carrying a heavy box when I’m not. I also have the fatigue, terrible muscle spasms that are on the inner thighs, calves, ankles and feet and on top of my ankles. Itching is another problem that is as annoying as always feeling like you never slept. I love with my non- understanding family and I want so bad to have my own secluded place to sleep whenever I want and to be away from everyday stresses.
    I’m tired of feeling defeated all the time.

  • Devin Garlit moderator author
    3 years ago

    No problem, thank you for commenting and sharing what it’s like for you. I deal with that heaviness as well. The itching sounds awful! Sorry to hear that your family doesn’t quite understand. That too, is a common issue for many of us. I always urge folks to share as much from this site and others as they can. Sometimes, it takes reading about others to understand your own family. Thank you again!

  • Julie
    3 years ago

    The itching is as annoying as always AND there’s always that feeling that you’ve never slept^ Sorry, my brain goes so fast I can’t keep up.

  • Julie
    3 years ago

    Even tho I hate that others are going thru this, I’m really glad to know I’m not in this alone. I have been dealing with this for 10 years now and I have yet found a dr that can help me with the pain. Mine is burning, like someone is holding a match to my leg, and me thinking that if my feet and legs really were on fire, I’d be too tired to put them out.

    I too have tried pot. I was surprised to find that it helps like no other drug I have been given. The problem I have is that it is still illegal in my state and looking to buy any makes me nervous. Someday someone has got to start listening to us when we say it helps. Maybe then we can medically use it without fear of fines or jail time.

  • Devin Garlit moderator author
    3 years ago

    Stephanie417,
    Thank so much for the tip. That sounds useful and I’m sure folks, including myself, will try that out!

  • Devin Garlit moderator author
    3 years ago

    Julie, Tim2101, I hope the time comes soon than later that medical marijuana is legalized and made more available around the country. It really is so helpful to so many. Just an FYI, I talk about my experiences with it here: https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/ I prefer to make a tincture and take drops under my tongue. Thanks so much for reading and sharing your thoughts!

  • Stephanie J
    3 years ago

    I also have the”ghost itch”i found if i shock wherever on my body i feel the itch with an ice pack for a few minutes or cold water. I was told by my doc it somehow reprograms or resets the brain and it really worked for me! Done it since Everytime it starts up again and it’s worked Everytime. Hope this helps!

  • trloftus
    3 years ago

    How do you take it? Do you eat it or smoke it? How much works for you? Thanks.

  • Katfish
    3 years ago

    I have that feeling like my feet are wet too! When I mention it to my MD, he thinks I’m nuts. I don’t know what causes this, but it’s very real, incredibly annoying, and often keeps me awake. I hate you have this symptom as well, but I’m glad to know I’m not alone

  • Devin Garlit moderator author
    3 years ago

    I am glad I am not alone either! I’ve met very few people that have it! I actually didn’t even mention it to my neurologist at first because I thought I was crazy. When I finally did, he said that he has heard of others with MS experiencing the same thing! So we are not alone! Thanks SO much for commenting, it’s such an odd symptom!!!

  • Amiracali
    3 years ago

    Hi Gavin,

    Thanks for the great blogs! I too have massive trouble sleeping, and staying asleep, along with big-time fatigue!

    I use Temazepam to sleep, and it definitely helps to have no Tv or excessive stimulation an hour before I even contemplate sleeping.

    Sometimes I get anxious when trying to fall asleep and will take a lorazepam for the anxiety. I also have a magnesium supplement I take which is supposed to be a natural sleep aid.. It has helped with the spasms and spasticity.

    It literally takes me about 2 hours to get to sleep

  • Devin Garlit moderator author
    3 years ago

    Thank you! I’ve never tried either of those medications. Like you, I do sometimes (ok, often) experience excessive anxiety at bedtime. It’s certainly a big contributing factor to me missing sleep. Thank you for the comments, it is always helpful to see what others are doing and exactly what I love seeing here. That’s how we all begin to help each other! Thank you again!

  • 1ywc1gu
    3 years ago

    Hi, when I saw your article, I got excited. But my biggest problem is being fatigued and in pain when I WAKE UP! It takes me hours to fall asleep and generally I can stay asleep but the morning (I use that term loosely) is the worst! I feel like I’ve run a marathon in my sleep!

  • Devin Garlit moderator author
    3 years ago

    1ywc1gu, Amiracali, elsiesue, thank you all for reading and sharing your thoughts. Waking up exhausted does seem to be a pretty common issue for folks like us. It’s certainly something I like to mention when I try to explain MS fatigue. Sometimes, no matter how much sleep you get, you still awake exhausted. My wife and friends know that I have a long waking up process that includes lots of coffee, taking provigil, and just being in my routine way before I can take on any challenge the day might have. Best of luck to everyone and thank you again!

  • elsiesue
    3 years ago

    I was diagnosed just 4 months ago. I usually fall asleep pretty easily but I am tired all the time. What struck a chord was what you said about mornings. I am tired when I wake up and it takes me all morning to get myself going. Then I get my one and only spurt of energy albeit small about mid afternoon. Very frustrating as I feel like I have wasted so much time in the morning doing nothing.

  • DonnaFA moderator
    3 years ago

    Hi, 1ywc1gu, thanks for sharing your thoughts. You are not alone. some of the sentiments you’ve expressed are echoed by the community in You Know You Have MS When. You may also be interested in Management of Fatigue which has some tips and talking points to bring to your doctor.

    Thanks for being here, we’re always here to share information and support. -All Best, Donna (MultipleSclerosis.net team)

  • Amiracali
    3 years ago

    My doctor prescribed me Modafinil for this issue.. It makes me alert and reduced the brain fog significantly

  • remr1
    3 years ago

    Hi Devin,

    Great story! Boy, you hit the nail on the head with that one!

    Yes, I thought since I switched to Tecfidera from Avonex, it seemed my “painsomnia” went away. Well, I guess that’s why they call it Relapsing Remitting MS.

    I guess I’ll have to deal with it–guess I’ll plan my day around it.

    I have another definition for Soma pain. It is “S”itting “O”n “M”y “A_ _ ” pain. I think Soma is a true medical term.

    Mark

  • Devin Garlit moderator author
    3 years ago

    Another perfect term! Thank Mark for reading and sharing that!

  • OliviaJ
    3 years ago

    I do all the same things you mention and I read on my e-reader to distract myself. Plain old extra strength Tylenol helps too (on top of baclofen and gabapentin and medical pot). If I’ve used it all, I watch the time tick by till I can take another Tylenol. Eventually, one or the other or all of the above finally work and I get to sleep. I’ll imagine you and all other people with MS awake when I am and will send loving kindness your way. Best to all.

  • Devin Garlit moderator author
    3 years ago

    Thanks OliviaJ! Appreciate it!

  • DonnaFA moderator
    3 years ago

    Hi, Oliviaj, thanks for sharing your thoughts and good wishes. We’ll be thinking of you, too, and sending good wishes your way as well. If you have one of those nights and need someone to talk to there is usually someone around here or on our Facebook page who would be happy to keep you company. -All Best, Donna (MultipleSclerosis.net team)

  • Catgirl66
    3 years ago

    Painsomnia says it all! Sadly, I’m still looking for whatever will help me to sleep. I do know I function MUCH better on the rare occasion that I get a good night’s sleep

  • Devin Garlit moderator author
    3 years ago

    Catgirl66 A good night sleep does make the next day much, much better. If only it were easier for us to get! Thanks so much for reading!

  • New to me
    3 years ago

    Glad to see others are willing to share how Med MJ is helping with their MS I have only recently discovered its benefits after trying MANY scripts, It also helps with my muscle spasms and myoclonus I was sceptical at first but kept reading about successes and in a moment of desperation tried it with almost NO relief so I thought uh huh it’s bunk but I was told to try different strains and on the 5th strain is tried (bluedream) it felt like a big warm comforting hug washed over my body relaxed (first time in a year) my myoclonus slowed and I slept like a rock! I am no longer a skeptic!…. Thank you for your aritical

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and commenting. MMJ has been very helpful to me and many others. Check out this article about my experience with it: https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/

  • mamak1118
    3 years ago

    Again, it’s the heat that causes problems. A lot of times I’m too hot in bed, so I throw the blanket off my legs. But the fan and AC hit my legs which causes throbbing pain! If it gets to that point, the only thing that alleviates it is a warm bath in some Epsom salts, and then I have to rush back to bed and try to fall asleep before the pattern repeats itself. Many nights I’ve had to take multiple baths just to calm the throbbing. UGH!!!

  • Amiracali
    3 years ago

    You may want to add a magnesium supplement or magnesium oil to rub on your areas of extreme discomfort. Just adding the magnesium supplement has reduced my spasms tremendously. I would recommend a raw magnesium supplement as it comes from natural foods and absorbs better

  • kicknMSback
    3 years ago

    Mamak, there is a lotion out there called Serenity that has among its ingredients, magnesium and it works to help my “micro” spasms, spasms and leg pain that my RLS gives me when the medicine starts to wain. Maybe it might help with you. The company also makes a Rejuvenation that might give you some pep, also. Good luck.

  • Devin Garlit moderator author
    3 years ago

    The heat this summer has been rough on many of us. I often think that if I could just have a consistent temperature, I’d feel so much better. Thank you for reading and sharing!

  • DMT
    3 years ago

    Dude, I’m totally right there with you. I live in South Florida and its been insanely hot! So that just adds to the fatigue and spasms etc etc etc and when sleeping is a problem on top of everything else, it all seems insurmountable. But keep your head up man, where all in this together!! I use cannabis in addition to baclofen at night time and it definitely helps with getting some sleep. I also practice yoga everyday for about an hour. I read some form of exercise/stretching helps with getting sleep
    Keep up with the blog posts they’re a big encouragement!

  • Devin Garlit moderator author
    3 years ago

    Thanks man! The heat this summer has been especially bad, I think of us with MS are having some rough times. I definitely need to try my medical marijuana before bed, I’m sure that’ll be helpful.

    Thanks, always nice to know others are reading what I put out there!

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