Chronic Illness & Sleep Experiences

[BookwormPrincess]

Hi all, I posted this in the Chronic Pain forum too, but would be interested in everyone elses experinces of sleep problems, quality too so I've put the same thread in here too.

Just to introduce myself, I suffer from Chronic Headache 24/7 and Fibromyalgia, which I have had for at least 14 years.

I am currently attending a NHS Pain Clinic Pain Management Course over 4 Friday mornings. The next session is addressing sleep , and I want to go prepared and confident enough to speak up about the topic (I wasn't overly confident in the last session since I was the youngest there by a good 15 years!)

So I thought I'd see if anyone else who suffers from chronic pain/chronic illness would be prepared to share with me their thoughts.

• How does the pain affect your sleep?
• Do you ever feel refreshed after sleep?
• Do you have problems falling asleep because of the pain?
• Does the pain often wake you in the night?
• If you are deprived of sleep, how does this affect your pain score?
• In your opinion, can you sleep too much or too little?
• Is napping beneficial or detrimental?
• Can you fall asleep even if your body doesn't need it?

As you can see, there are lots of things to explore. I'd love to hear your comments. Sleep is a very sensitive topic for me as I find people without pain underestimate it's role in the life of a pain sufferer. I have often been accused of being lazy for sleeping late in the morning, when if only they knew how terrible I feel if I don't get at least 9 hours sleep. When people describe hangovers, that is exactly how I feel every morning!


Look forward to your comments.
Thanks

 

[yeshuaslavejeff]

a customer of mine hadn't been able to sleep more than 2 hours at a time (because of pain/discomfort) for +6 years.

she went to a natural counselor and bought at a natural food store something called "Calm" (that's the brand name I think).

that night and every night after that for 3 weeks(when she called me again re another job) she slept sound all night!!! (and felt great upon waking)

she apparently also found other helps to lose weight, keep the headaches away, and, gradually, get healthy.

 

[BookwormPrincess]

a customer of mine hadn't been able to sleep more than 2 hours at a time (because of pain/discomfort) for +6 years.

she went to a natural counselor and bought at a natural food store something called "Calm" (that's the brand name I think).

that night and every night after that for 3 weeks(when she called me again re another job) she slept sound all night!!! (and felt great upon waking)

she apparently also found other helps to lose weight, keep the headaches away, and, gradually, get healthy.

Thanks for that.
Perhaps you mean the herbal tablet brand called 'Calms'.

 

[BigNorsk]

I have fibro.

The low dose amytriptyline actually works pretty well for me. I don't think I hardly dreamed at all for years, but I do a lot now. It was so strange. I wasn't used to the length of my dreams, I literally one night did the same dream three times in a row, no kidding. I also take tramadol. As well as an assorted cocktail of other pain meds as needed.

Anyway, my pain isn't so severe that it wakes me. But due to stiffness, if I do wake, it can be a real problem getting back to sleep. What works best for me is to watch some tv and it shuts my brain down just like a schoolkid and I fall asleep. Whereas if I just lie without any distraction I tend to notice and focus on the pain much more.

I'm never a bounce out of bed person because of stiffness and aches. But I would say that I'm not sleepy like I used to be. It seems strange when you down and bunch of pills and they all say may cause drowsiness that I am not near as drowsy as I used to be before treatment.

Sleep deprivation definitely ups the pain.

Marv

 

[BookwormPrincess]

I have fibro.

The low dose amytriptyline actually works pretty well for me. I don't think I hardly dreamed at all for years, but I do a lot now. It was so strange. I wasn't used to the length of my dreams, I literally one night did the same dream three times in a row, no kidding. I also take tramadol. As well as an assorted cocktail of other pain meds as needed.

Anyway, my pain isn't so severe that it wakes me. But due to stiffness, if I do wake, it can be a real problem getting back to sleep. What works best for me is to watch some tv and it shuts my brain down just like a schoolkid and I fall asleep. Whereas if I just lie without any distraction I tend to notice and focus on the pain much more.

I'm never a bounce out of bed person because of stiffness and aches. But I would say that I'm not sleepy like I used to be. It seems strange when you down and bunch of pills and they all say may cause drowsiness that I am not near as drowsy as I used to be before treatment.

Sleep deprivation definitely ups the pain.

Marv

Thanks Marv,
lack of sleep sends my pain soaring.
I'm off to the course tomorrow morning.

 

[PolskiKrol]

I have some sleeping troulbe, tried most of the drugs out there. My one sleep doctor even put me on this thing thats supposed to knock you unconcious.... didn't work. Felt like I got hit on the head with a bat, but didn't work. Sometimes you just have to live with things. I know I can't sleep and I just have to get used to the fact of being tired all day, and function as best I can.

 

[BookwormPrincess]

I have some sleeping troulbe, tried most of the drugs out there. My one sleep doctor even put me on this thing thats supposed to knock you unconcious.... didn't work. Felt like I got hit on the head with a bat, but didn't work. Sometimes you just have to live with things. I know I can't sleep and I just have to get used to the fact of being tired all day, and function as best I can.

Yes, tranquilizers don't seem to help insomnia at all! I've had that feeling you describe - horrible.

Acceptance is definitely important when dealing with chronic illness.

 

[Buttermilk]

Thanks Marv,
lack of sleep sends my pain soaring.
I'm off to the course tomorrow morning.

How did you get on at the course?

 

[BookwormPrincess]

How did you get on at the course?

Hi Buttermilk,
The course went ok, but was not very enlightening for me to be honest. I guess I have already done so much reading about chronic pain that I had already heard most of the stuff. I'll look at my notes and try and post a summary of what was said, incase this will help anyone.

Off to work now. Thanks for asking.

 

[BookwormPrincess]

Hi all,

I thought I'd update you on how the course went.
To be honest, I don't feel there is a lot to say since all the stuff they went over I already knew.

They started out by telling us how important sleep is (as if we didn't know!). For example, it is only during deep stage 4 sleep that the growth hormone is secreted and seretonin levels maintained. The growth hormone helps with tissue repair and seretonin helps with mood and pain perception, among other things. Therefore, it is the quality of sleep that matters most rather than the quantity.

They talked about things to do to help you relax and sleep. Generally sleep medications and alcohol, while they are sophorific, they actually decrease the amount of delta sleep which is why you will feel unrefreshed. However, tricyclic antidepressants, like amitriptaline, can help induce better sleep.

They also talked about practicalities like matresses, pillows between the knees when sleeping on your side, that kind of thing - common sense to me, but maybe it was useful for others.

The main thrust of the course seemed to be stating how important routine is in going to bed and getting up. Having a wind-down time a couple of hours before bed is important, as well as leaving 3 or 4 hours between a meal and bedtime. Also, making the bedroom a place for sleep and sex only - no tv or work or other stuff so that your mind and body get into the habit of relaxing in that environment.

If I think of anything else useful that was mentioned I will add more to this post.

Hope everyone is coping ok. Thanks for your comments.

 

[ArabChurch]

Wonderful

 

[david01]

My fibromyalgia first started off with increasing insomnia, followed a month later by the pain, which I think was the result of deep sleep. I took Ambien way too long and had a sheer night of terror and excrutiating pain when I quit it. Tryicyclic sleep medicines such as Amytriptiline and Nortriptiline both gave me a reverse reaction of complete insomnia. I took Amytriptyline for 2 1/2 weeks before the doctor would believe me. Lunesta was horrid. The pain grew worse and worse. I ended up taking Temazepam, which is working well. After getting a clear fibromyalgia diagnosis I ended up taking Cymbalta and Neorontin (I was allergic to Lyrica and Lamyctal - nasty reactions). My sleep has been improving as I have been getting my pain level under control. Before I was around 9 or 10 on the pain scale day and night and got 1 - 4 hours of sleep a night. Now my pain is around 2 - 5 and I am functioning again. My sleep is getting longer. I was doing two rounds of sleeping pills a night and am now down to one with uniterrupted sleep being about 5 hours followed by napping. I cannot nap during the daytime because of the pain levels, but am finding that my exhaustion levels are coming out now that the pain is lower. I am learning to live with the pain and exhaustion and am hoping for more improvement. I hope this helps you. I appreciate the experiences of others here. Thanks.