Constant Fatigue from Pain..advice for sleeping better??

[Danimal]

I'm having a bad day...my fatigue is really catching up to me and I am just so sick and tired (har har) of feeling this way. I don't feel up to doing anything save reading, shuffling around the house and laying in bed! :(

I take ativan to help me sleep at night and that does help but I'm wondering if there is anything else out there that people use to help them sleep?? :zzz: I don't mean medication..I mean other things.

I'm still recovering from surgery 2 months ago and I know that has a lot to do with why I am so tired all the time but I'd really like to regulate my sleeping so I can start to feel better and have a better shot at coping with my pain. Any advice would be much appreciated. :p

Danimal

Please visit my blog..Chronic Stimulation (a diary about living with a newly implanted stimulator)

http://www.chronicstimulation.blogspot.com/

[snorp]

Hello Danimal,

I have been a reader but until now haven't posted a thing. Reading your blog not only was informative but also gave me a bit of inspiration. You are a couragous young lady who is not going to let this get you down in the long view. I'm 56 and have been dealing with this hell for over 12 years. I'll save you the wonderful magical medical tour but if it's out there i've done it or been offered it. I used to be able to tolerate a good measure of pain but now I'm a woose. The sleep thing is a constant struggle. I now sleep in more of a coma state than regular cyclic restful slumber. That's more of a dream I have of one day being able to sleep for 10 hours and wake with the, "oh it's a beautiful day" attitude. The fatigue and draggy feeling you have I would think is a side effect of the opiates, along with stress, depression, and a general feeling of ok what next. I have to time the morphine to be more active at night cause otherwise I'm a sloth. Pain is something only a person who has experienced the chronic side along with brushes of agonizing acute elephant thru your eurethra kinda thing. (sorry, but it's the only way I can think to really describe it).

OK, enough rambling. Sleep. I referenced the pain experience wondering if you have had the experience of, "it hurts when I do nothing and hurts, a bit more when I do something, so I just need to get over it and do something and let the pain bring it on." If like me, there is a time element to calculate of down time to the something you chose to do. Dizzying to follow I know,sorry. Anyway, the point is, I find sleep easier, no strike that, more cooperative when I exhaust myself. Duh, right, makes sense, but it isn't foolproof. Uh-oh, may have found a Freudism there.

So.....I circle back to the inspiration you gave me. Following your blog, your courage and never say never attitude pulled me out of a course of crach and burn because of the constant alwaysness, (just made up that word), of the pain. However, walking the dog, if like my dog, may not have been the best of ideas. They seem to pull in directions not all that helpful. At any rate I would suggest that you let your depression alone, let it run a bit, you deserve it. From what I read of your personality, it will be short lived. So, enjoy it and I know thinks will get better in time. Remember when before all this you would have given a lot for just some personal time. I know, the thought seems lame now but there will be another day. BTW, I've been married to the best person it the world for 35 years. It seems to me that you will be that same kind of person to your husband. I hope to communicate with you again. There are more technical conversations we may be able to help each other with.

The power of the universe be with you! Thanks for the inspirations!!! :applaud:

[bollefen]

Sleep ah blessed sleep. I can count on 1 hand the number of nights of good sleep I've had since my injury incomplete L3-4-5 Cauda Equina.

Chronic Pain is my issue, have a dorsal spinal stim, not working as good as yours.

Tried and use all the different sleep meds to no satisfaction and nothing organic works either.

If you find something let me know.

Kindly,

Bill

[bigbossman26]

The sleep thing is a constant struggle. I now sleep in more of a coma state than regular cyclic restful slumber. That's more of a dream I have of one day being able to sleep for 10 hours and wake with the, "oh it's a beautiful day" attitude. The fatigue and draggy feeling you have I would think is a side effect of the opiates, along with stress, depression, and a general feeling of ok what next. Top all of that off with sleep apnea that requires the use of a CPAP machine and you have described my life for the last three years to a tee!! WOW!! I don't know if it helps to know that I am not the only one out there who would like to smack the hell out of the guy/gal in the commercial who wakes up to sunshine, blue sky, birds chirping, etc. saying "what a great day!!" I have not felt anywhere near that for a long long time..... A person tends to think that a restful night's sleep is only a myth after a while. I too find that if I "force" myself into doing some sort of activity painful or not to the point of total exhaustion that I can then at least close my eyes when I hit the pillow. How I sleep is another story all together, legs thrashing, tossing, turning, spasms to the point that I nearly sit up in the middle of the night some nights, wild very vivid dreams/nightmares, dry mouth, and a slight bladder issue that requires me to get up at least twice a night. AARRRGGGHH When will this end, so I can get back to my somewhat "normal" life (HA HA) whatever that is, not sure anymore.......Thanks for letting me chime in here, and if anyone out there knows of a "trick" to being able to sleep at least one good night, please reply to this thread ASAP, I'm sure there are a lot of others out there who can attest to the issues we are speaking of. Peace, Brian

[arndog]

How about ambien?

[metronycguy]

i thought i was going to lose my mind last summer due to lack of sleep/constant fatigue.
the problem is i couldn't nap during the day to get any relief . i would fall asleep within minutes many times and be woken within 10 or 15 minutes by severe shocks, nerve pain. i slept very poorly at night also, since as soon as i lay down, if i didn't have enough meds to win over the pain time bomb. i would be awake from the pain and than take more opana, trying to take enough to knock the pain out so i could sleep, but not too much , cause i didnt want to wake up dead. i shit my bed big time one night, so i figured i was getting close to a permanent nap. i would have to chase the pain have to go through that routine 3 times a night, maybe getting 3 hours sleep .
with my my injury when i lay down the pain gets much worse , it only takes minutes usually when the shocks starting firing.
i would take 100mg breakthrough opana over 8 hours and still have a horrible night due to the pain.
i am doing pretty good now, luckily my insurance has paid for my new BT med,which is very expensive, stopped the lyrica, which wasn't doing shit.
fentora, it works pretty quickly, but on some bad days i take high doses. by accident i discover that another med that i was trying to come off of due to its i think black label warning when taking with my new 24/7 med methadone. i was taking xanax too and the pharmacy said i wasn't suppose to take both methadone and xanax together. so i started tapering off , i got down to about 50 mg a day, however my pain was off the wall, my intake off fentora went up 400 percent. i was waking up t 3am with pain again and at 5 am i needed more fentora, then i would have to start the day with fentora and i saw i would have to raise the methadone, since i was taking bt med way too high and too often.had to get up cause the pain was too intense and i didn't want to start out the day with a super dose of fentora.
i realized than how well the xanax worked syngericly with the fentora. i was only taking 2mg of xanax a day, figured that was a lot better than raising the methadone and taking double up the $4000 a month of fentroa
today i took a nap midday, i can take naps again. i just have to be very careful
i also take ambien-cr for sleep. i have been on it for so long though, if i really need sleep 800 neurontin tablets, cut one in half, it usually works

[fishin'guy]

My rheumatologist let me in on the xanax thing. When I have the "electrical" shocks of pain, I take 30mg of morphine and .25-.20 of xanax, and it really does help in conjunction.I am down to having these only about 2-3 times a month. I am so blessed , from what I've read on here, so many have it so much worse. You all have my sympathy and prayers.

[snorp]

Understanding the original querie was how to sleep with out the aid of meds, my post didn't include my coma recipe. I tried working with my PM but he refered me to a sleep clinic. Wires on the head and torso, who can sleep with this crap on, but that's the routine. Like Bossman, I start bedtime with lying down only to be forced to sit up after 2-3 hours. Have become well adapted to entering a semi sleep in the sitting on the bedside technique. Anyway, I've had two sleep studys now and the results are klonopin for restless leg syndrom and sleep help along with 3 liters of O2. The klonopin does help very well, but it is more of a coma as I've stated rather than regular sleep. The body seems to be grateful by mid morning for it. That started 7 years ago. Now, the doseage is the same, 1 mg, and for assured coma I have to take 2, which I rarely do. Have found the lazyboy to be a last resort, but that's usually when the birdies are waking. Any attempt at biofeedback methods for sleep, ie, self-hypnosis, along with a moist heating pad, gets me perhaps a nap for 30 to 60 minutes. So Danimal, the search for the golden fleece of sleepdom is sought by many. Should you find it, let's bottle it or write a paper and at least the economic part of this nightmare will be over.

[Danimal]

aw..thank you all for your nice responses. Looks like sleep eludes most of us. My ativan does help get me to sleep but it doesn't help keep me asleep. I do notice that if I wake up in the middle of the night and take my next dose of methadone, I can get better sleep in the early morning hours but I'm not always up enough to do that and then there isn't always water near my bed and sometimes I can't get myself out of bed to get water, etc.

I was on ambien for awhile but, oh man, that made me do crazzzzy things. Sleep eating, mostly. One time, I woke up in the morning and found an overturned box of coco krispies in the living room with a giant serving-size spoon inside the box. I had no memory of that! I would also get into little fights with the fan and the curtains. Apparently, I decided one night that the fan (whom I most affectionately dubbed "fan man"). had an attitude and he and I had to have a little talk about it. My husband said that I told "Fan Man" that I "had my eye on him." I was quite entertaining to my husband but, needless to say, I wasn't getting good sleep on the stuff so I switched to ativan.

It just stinks because, without good sleep, our pain is worse...and when our pain is worse, we don't sleep well. It's a nasty little cycle, isn't it?!! :zombie:

[Danimal]

Snorp,

Thank you so much for your kind words about my blog! I'm really very happy to know that it may be helping other patients so your response means a lot to me.

I'm sorry that you are in so much pain too..and that it's been a 12 year road for you. Ugh.

I definitely think you are right about doing something to tire ourselves out...I just have to be careful about what I do! Sometimes I push myself and end up making my pain worse. But I do notice when I exercise, sleep is a bit easier. I was doing water aerobics before my surgery and think I will try to take that up again when I can. And maybe going on longer walks with my dog would be good.

Anyway..I hope you are having an ok day. Hang in there...

[goat]

I usually take 1mg Melatonin before bed; more than that I feel groggy the next am. It's natural, safe, effective & CHEAP. These excerpts from respected MEDLINE articles may be helpful:

Critical Care (London, England) 2008; Vol. 12 (2)
Melatonin use was associated with increased nocturnal sleep efficiency. Doses of 1 to 2 mg could be used

Journal Of Neurology 2007 Apr; Vol. 254 (4), pp. 459-64.
Melatonin significantly improved subjective quality of sleep

[Danimal]

hey goat:

thanks for the post. I was taking melatonin for awhile too...though it wasn't quite as helpful as the ativan but much better than nothing. I think I may have to switch back to it when I try to become pregnant. My high risk doc. said it was ok to take during pregnancy, whereas ativan prob. shouldn't be taken during the 1st trimester, if one can help it.

Danimal
http://www.chronicstimulation.blogspot.com/

[metronycguy]

[QUOTE=fishin'guy;1019694]My rheumatologist let me in on the xanax thing. When I have the "electrical" shocks of pain, I take 30mg of morphine and .25-.20 of xanax, and it really does help in conjunction.I am down to having these only about 2-3 times a month. I am so blessed , from what I've read on here, so many have it so much worse. You all have my sympathy and prayers.[/QUOTE
i dont think my pain management doc knew about it, i know that methadone warning for a dirt nap said other meds that had c2y6 such as xanax, are dangerous , but i think tegetrol also has this c2y6 and that should also work well with me.
have to look it up tomorrow