How do you combat insomnia?

Someone raised an important and interesting topic related to sleeping difficulties tied to lupus or other conditions brought about by lupus. I have heard from many folks about sleeping problems and their frustration in futile attempts to rectify the situation. Whether it be lupus-related symptoms, back pain from too much prednisone (my problem) or other medicines causing the insomnia, it is a tough pill to swallow (hah!) for those who are suffering. I confess to having no answers as to resolving the problem, but wondered if any of you have endured this nightmare and have overcome it. If so, could you reveal your solution in the hope that it can help others who have grown weary of this annoyance?

Here's hoping for future nights of blissful rest.

Thomas Franklin

I sympathize with you to the utmost, as I have been and am continuing to experience severe insomnia that was initially intermittent in nature for several years (i.e. periods of insomnia lasting 3 - 4 mos.), but has now become consistent and unrelenting for the past 1 1/2 to 2 years or so. Most OTC sleep remedies have failed me, as have natural ones such as valerian root, 5-HTP, etc… Over time, I have also been prescribed various meds in an attempt do induce sleep such as Ambien, Nortriptyline, Elavil, and even heavy hitters including chloral hydrate and even Xyrem (which is akin to what is commonly referred to as GHB, or the “date-rape drug”).

Finding what will work for you is a tedious process. I will be praying for you-- as I will be wide awake all night anyways LOL. Please discuss with your primary care physician, and be sure to let him/her know how severe the problem really is. Sleep is essential to our ability to tolerate the effects of our disease process.

One question-- a side note of sorts… You mention experiencing back pain due to prednisone. I have been taking is drug daily for two years with dosages ranging from 60 to 15 mg. My back pain is constant and relentless and now I must wonder if this medication is a contributing factor. Can you please elaborate on this for me please?

Shabre,

You might be suffering from fractured vertebrae like I have been. My doctors said this is almost certainly the result of high doses of prednisone. When I have taken high doses of prednisone (for a variety of reasons) over the last few years, I have experienced the back pain. Catscans revealed fractured vertebrae. I had four fractured vertebrae at one time. They say the prednisone weakens the bones, therefore leaving us susceptible to the vertebrae problem. For a long stretch my back pain was so bad I had to sleep in a recliner because I could only tolerate it in one position that could be had only in the recliner. I would suggest you ask doctors to schedule you a catscan of vertebrae. Have you been on high prednisone doses for a while? I found that when prednisone reduced to 10 or 15 MG my back pain slowly eased off. My pain in that regard has been more controllable.

Thomas Franklin

Shabre19 said:

I sympathize with you to the utmost, as I have been and am continuing to experience severe insomnia that was initially intermittent in nature for several years (i.e. periods of insomnia lasting 3 - 4 mos.), but has now become consistent and unrelenting for the past 1 1/2 to 2 years or so. Most OTC sleep remedies have failed me, as have natural ones such as valerian root, 5-HTP, etc... Over time, I have also been prescribed various meds in an attempt do induce sleep such as Ambien, Nortriptyline, Elavil, and even heavy hitters including chloral hydrate and even Xyrem (which is akin to what is commonly referred to as GHB, or the "date-rape drug").

Finding what will work for you is a tedious process. I will be praying for you-- as I will be wide awake all night anyways LOL. Please discuss with your primary care physician, and be sure to let him/her know how severe the problem really is. Sleep is essential to our ability to tolerate the effects of our disease process.

One question-- a side note of sorts... You mention experiencing back pain due to prednisone. I have been taking is drug daily for two years with dosages ranging from 60 to 15 mg. My back pain is constant and relentless and now I must wonder if this medication is a contributing factor. Can you please elaborate on this for me please?

I’ve definitely been having troubles sleeping for the past few weeks; even though it doesn’t help completely, what I have found that helps me sleep a little more than I was, is listening to “nature sounds” and relaxation/meditation stations on Pandora as I lay there trying to fall asleep. I don’t always sleep through the entire night, but it has been helping me at least fall asleep, which is a start

I take Trazodone at night. It gives me a solid 6 to 7 hours no matter how much pain I’m in. It’s an older antidepressant so it’s well studied. I’ve been taking it for over 15 years at doses much lower than what is used for depression and have had no ill effects. I have no “hangover” in the morning like sleeping pills give you and no memory issues. The only thing is that it can give you vivid dreams but those can be fun…lol I’ve had lupus since I was 7 so I’ve taken many meds and this is one of the few that I’ve never had trouble with except for the few times I forgot it at home when I’ve gone away for the weekend. One drawback is that you have to take it everyday or you’ll get nauseated and sick. It really helps with fibro pain as well. Sleep is vital to our health. I hope this helps. Hugs, Annemarie

What Ann A said I literally just heard from my therapist, regarding designating the bed just for sleep. She was talking about “mindfulness” too. She explained that it’s kind of like mediation. You are thinking about things to the greatest detail, about what you are feeling, literally, tactile feelings. For example, I feel the sheets are cool; there’s a little bump bear my shin; these sheets came from ____ store; my feet feel warm and cozy… I don’t know much about it but am going to look into it some more.

Thomas, i didnt know that prednisone caused back pain. Now is this because of the deterioration of the bones or something else? I;ve been experiencing some pain in my back and lately its been a little more persistent and causing slight sleep problems - is this the prednisoine? Ive been on it for the last 3 years?

Anyways, to answer your sleep question the non-medicine way... I worked in a psychology research lab for a few years. We had a few studies that dealt with sleep and in particular my senior thesis dealt with sleep and ways to improve it. Here are some tips: 1. Dont watch tv, dont eat, or do any activity like reading, crossword puzzles, etc at anytime during the day/night (the exception is sex). All the previous items awaken your body and you want the bed to signal your body to sleep. By performing these activities whether it's at night or during the day, it signals your body to awaken. If you use your bed only to sleep, then it will become a signal to get tired and fall sleep.

2. Create a bedtime routine and follow it every day as best you can. If you get your body used to going to sleep and waking up at particular times, your body automatically becomes accustomed and more easily falls and stays asleep.

3. Try not to eat near bedtime. This might give you energy thus making sleep harder.

Good luck! Sleep well!

Hello im so sorry that you have to go through this I see a doctor for this they give me some zolpidem /10 mg it help me

I am taking Tramadol and melatonin at night. I have my good and bad nights. I have noticed I don’t wake up during the night as much and do feel more productive during the day.

It does cause deterioration of the bones, according to my doctors.

b1007 said:

Thomas, i didnt know that prednisone caused back pain. Now is this because of the deterioration of the bones or something else? I;ve been experiencing some pain in my back and lately its been a little more persistent and causing slight sleep problems - is this the prednisoine? Ive been on it for the last 3 years?

Anyways, to answer your sleep question the non-medicine way... I worked in a psychology research lab for a few years. We had a few studies that dealt with sleep and in particular my senior thesis dealt with sleep and ways to improve it. Here are some tips: 1. Dont watch tv, dont eat, or do any activity like reading, crossword puzzles, etc at anytime during the day/night (the exception is sex). All the previous items awaken your body and you want the bed to signal your body to sleep. By performing these activities whether it's at night or during the day, it signals your body to awaken. If you use your bed only to sleep, then it will become a signal to get tired and fall sleep.

2. Create a bedtime routine and follow it every day as best you can. If you get your body used to going to sleep and waking up at particular times, your body automatically becomes accustomed and more easily falls and stays asleep.

3. Try not to eat near bedtime. This might give you energy thus making sleep harder.

Good luck! Sleep well!

I do not like to take an additional med to sleep so I have found that a bedtime routine is important. You reset your clock and your body relearns that it is bedtime. Also, I agree with b1007, You do have to give it time, I also agree with Ann A. part of my bedtime routine is taking a shower to regulate my body temperature. Sometimes when the insomnia just doesn't quit , I will get out of bed, read or watch tv for a short while and then start my bedtime routine again. this usually does help me to eventually fall asleep.

Between serious flares I tend to get insomnia. During this time, I usually take a steaming hot bath every night before bed, a cup of hot milk, and sometimes a warm compress over my eyes. I used to like to drink kava tea, but unfortunately did some research, and found that it is terrible for your liver and kidneys. I know that these are the basic things to try, but sometimes even if you can't get fully to sleep, it helps to rest your body and mind a bit, even if you don't reach sleep. I wish I could be more helpful, but I guess what I really want to say is that you are not alone in this, and that my heart is with you!

Lots of love!

Thanks for your concern.

sweetpotato said:

Between serious flares I tend to get insomnia. During this time, I usually take a steaming hot bath every night before bed, a cup of hot milk, and sometimes a warm compress over my eyes. I used to like to drink kava tea, but unfortunately did some research, and found that it is terrible for your liver and kidneys. I know that these are the basic things to try, but sometimes even if you can't get fully to sleep, it helps to rest your body and mind a bit, even if you don't reach sleep. I wish I could be more helpful, but I guess what I really want to say is that you are not alone in this, and that my heart is with you!

Lots of love!