SLEEP ,,, LACK OF ,,,,,,

hi i have RA in my fingers and wrists for past 4 years  , Had joint replaced in both ring fingers this year. I inject methotrex 25mg weekly  and take 5 mg  folic acid 6 times a week, had to come off Sulfasalazine and Hydroxychloroquine these past 7 weeks as my bloods went down. 

I havnt been sleeping too well for about a year now, i am normally still awake at 2am then wake around 5am so roughly only having 3 hours sleep every night . Tho not much sleep I dont feel tired during the day.

 Any one else have lack of sleep ? Is this due to the RA . ?

Thank you for reading. x

Oh yes, I had this (and still do at times) I tried everything under the sun, and my rheumy finally had to prescribe Trazodone, it helps most nights for sleep. It is so important for those of us (or anyone!) to have proper rest each night, otherwise for us RA'ers, it just leads to painful flares.

Melatonin might help.....as might a few other "sleep aid" supplements/OTC medications though the most common, Benadryl, Dramamine and Doxylamine (the active ingredient in most OTC stuff marketed as "sleep aids"), I'm not a huge fan of personally.

It's possible that prescription medications might be more effective, but again, many of the most commonly prescribed for sleep are, in my personal non-doctorial opinion, not such great things -- for example, Ambien which has some horrid side effects (sleep walking, amnesia, weird behavior, the non-time-released version will help you fall asleep but not stay asleep more than a few hours for most people so it doesn't address your 5AM wakeup problem, etc) and isn't really a long-term solution.

Then again, taking melatonin long term isn't the best idea either as it will suppress at least some of your own natural melatonin production (which may be low to begin with, given your insomnia).

Personally I have always found the antihistamine/anti-nausea/anti-vomiting medication Promethazine to be tremendously helpful for falling asleep, having restful uninterrupted sleep, and sleeping for a long duration -- in fact it often caused me to sleep much longer than I would even back before I had insomnia.

However, now that I am having my existing insomnia made significantly worse by the benzodiazepine withdrawals as I undergo an aggressively paced (much faster than recommended, though with many aids to ease the process--that said, few things really make much of a dent in benzo WD) valium taper....promethazine is a big help but doesn't make as big of a dent as it did before because your GABA system, which benzodiazepines activate by making your GABA receptors "more receptive," is very important to proper restful sleep. Since my GABA system (and the others it interacts with such as NMDA and Glutamate) is so far out of wack from benzo WD, virtually nothing can punch through the overstimulation and other sleep-disrupting symptoms it creates. Making several small dents is about the best I've been able to do.

Purely pain related insomnia--and I'm not saying that's all you're looking at, as someone with your condition and taking the medications you've listed could have any number of other things contributing to the problem as well--is a tough nut to crack. Controlling the pain is pretty much the only single long-term solution that I know of; compensating for it in other ways is a very complex process and often involves rotating different things because you will eventually become tolerant to most of them and they will stop working, or at least you'll have to end up taking more than recommended....which is sometimes OK, sometimes not so much. As I said: it's complex.

You mentioned your doctor won't prescribe "sleeping tablets." Maybe, particularly if you don't specifically say that it's for sleep, asking for promethazine tablets (I'm not suggesting you lie, but if you have any problems with nausea etc, you could get them for that reason and then use them for dual purposes) might be something your doctor would be more receptive to. You could also inquire what things you haven't tried yet that he/she suggests for your insomnia.

Also, "adjusting to it" may be part of your problem, even though it's a coping mechanism I recognize all too well from my own reactions to feeling like I couldn't sleep even if I wanted to at a given (usually obscene) hour of the night.

Oftentimes, having a light on bright enough that you can read a book is enough to suppress melatonin production and other sleep-inducing processes in your brain. Total darkness is essential to falling and staying asleep. If you must have ANY light exposure after your ideal bedtime hour, it should be toward the red end of the spectrum and contain as little blue light as possible, as it is the blue end of the spectrum that activates the "wake-up/stay-awake" systems in your brain.

Doing anything that makes you think, or keeps you stimulated in any way, will also keep you up even if you feel like you couldn't sleep anyway. It may not seem like those things are part of the cause, but they are definitely contributors -- I know this from my own personal experience as I often find myself watching videos or doing things on the computer, using my iPhone, listening to music, etc etc to keep my mind off how terrible I feel from the severe sleep deprivation that goes on for weeks on end.....and recently since I *forced* myself to stop doing all that and just try to go to sleep as close to my ideal bedtime hour as I possibly can, I am actually much more successful in doing so.

Our cases may be a little different since as I said I am currently dealing with some big complicating factors on top of my very severe (and currently untreated, as a few months ago I went off pain meds since I am between doctors) pain...but the fundamentals of the problem are generally much the same.

I hope all this helps at least a little. Following all my suggestions would produce the best results I believe, but if you can follow at least a few of them, it should make a difference. Good luck and rest well!

I wasn't aware that was a significant factor in virtually any auto-immune condition, but thanks for the heads-up....as far as my own goes--commonly called Reiter Syndrome AKA Reactive Arthritis/ReA even though it is far more than just arthritis in long term chronic sufferers--I've never noticed it to have any correlation whatsoever with flaring, FWIW.

And I know many other people with other auto-immune conditions who have had the same experience (admittedly not Lupus, though I do know people with Lupus) regarding no problems with melatonin, sometimes at doses far higher than the ~3mg sublingual or up to 10mg oral that most experts say you shouldn't exceed because more can suppress your natural production.....but for those people, their production may not have been normal in the first place and being semi-dependent on those high doses of melatonin to sleep is much better for them than the alternative(s).

Personally, I suggest trialing 3mg melatonin capsules or tablets orally; if after one dose you notice no negative issues like a flare (which could of course just be coincidental, but if there is one immediately after, be cautious with using it again and see if it happens again the same way some time later perhaps) then try two of the 3mg time-released tablets you can get from SwansonVitamins or other supplement suppliers (I find Swanson's house brand to be the best deal I'm aware of for most things) about 30mins before your ideal bedtime and see what happens then.

The time-released form works better for me at helping me sleep longer, though right now with my benzodiazepine taper I still wake up like clockwork pretty much every day some time around dawn and have to take some gabapentin and tizanidine to fall back asleep for a few more hours (the gabapentin seems to make me have ultra vivid dreams when taken at this time, during those few hours, but not as much during the night)...I sometimes add D-Phenylalanine to make the endorphins my body produces during the early AM night hours last longer at higher levels by blocking the enzyme that breaks them down....since like other amino acids, D-Phenylalanine absorbs best on that first-thing-in-the-morning empty stomach and that's the best opportunity of the day to hold onto those endorphins produced overnight.

Just about anything could set off issues in a sensitive enough person, and now that I have refreshed my memory and done a little research, I see that yes indeed in certain conditions it can--at least in statistical studies--have a negative effect on flare intensity though I'm not clear on whether it's likely to trigger them on its own for more than a certain percentage of people with maybe one or two conditions such as Lupus. I'm sure some people with those condition(s) have had flares that were preceded by using or trying out melatonin for the first time, but correlation is not causation.

I don't mean to sound doubtful; and I'm certainly not intending to argue with your point, which stands -- the risk is there. I just wanted to make the counterpoints that I also have many anecdotal reports of people with quite severe auto-immune conditions not only having no issues taking melatonin, but having it in fact make a very positive impact on their lives by aiding considerably with their insomnia.

I'd be very curious to know what the mechanism of action is that is so problematic for the people who do have issues with it and flaring/worsening flares. It might lead to a way that one could reverse that action (if melatonin is an agonist for that pathway, for example, maybe an antagonist of the same pathway would have benefits?)....

In any case, thanks for bringing that to my/our attention and I will definitely add that caveat to my future posts here & elsewhere about melatonin.

update,

prescribed AMITRIPTYLINE to help me sleep took one last night slept 5 hours !!  maybe was too tired or good pills to work that quick,

also NAPROXEN for the pain,

xx

 

Everyone reacts differently to different meds, OTC or not. But I am in agreeance with couchtater on the Melatonin. I have had insomnia for 11 yrs now. I pretty much have always run on sometimes NO SLEEP for days and let my body naturally crash after a week or so. By body rejects medications after I have been on them for 2 wks or less. Sometimes a week. I was using Melatonin for the first time this last yr and I was SOOO happy how great it worked the very 1st time! I swore by it. Then, after a week or so, it started to KEEP me awake. My back hurt, my legs hurt, and racing thoughts. Most nights I am up until at least 4am. Many nights I can't even force myself to sleep with all lights and sounds off! When I see the sun coming up I try to force myself to sleep and sometimes do for an hr or less.
My doc prescribed flexerall 5mg for me about a month ago. For the 1st 2 wks they were absolutely amazing! I slept great for the 1st time in over 10 yrs! But unfortunately...all good things come to an end. :( It lasted about 2 weeks and no longer has ANY affect whatsoever on me. :(
Hope everyone else is finding a solution for their sleep problems! :)

Golitho,
I can't speak for everyone but I rarely sleep. Oddly enough, I too feel much worse after a full 8 hrs of sleep. I feel like I am really dragging and have the worst migraines! Some nights/days are worse than others but they all end up making me feel like dung the next day. I will either not sleep at all, or finally fall asleep after tossing and turning for hrs, or have these really crazy nightmares where I wake up out of breath and again...can't go back to sleep for hrs if at all. Last night, I didn't fall asleep til around 3:30am(one of my early nights) and I woke up at 4:15, back to sleep around 5:30 and woke up tossing and turning again at 6am. Nothing has seemed to work for me so I just deal with it.
Does anyone have a partner who just doesn't understand the affects RA has on our bodies or our sleep habits? Or am I the only one???

I have inflammatory arthritis rather than RA, but I also have trouble sleeping. Mine sort of cycles, sometimes I have trouble going to sleep and sometimes I have trouble staying asleep. Overall, I probably average three to four hours of sleep a night.

After years of trying to sleep "normally" and avoiding naps because the "experts" say they make insomnia worse, I finally listened to my wonderfully supportive husband. He'd been telling me for years to "sleep when you can." So I may nap a couple of times during the day and evening, anywhere from 10 minutes to an hour or more. I'm so glad my home situation allows me to do that, as I'm no longer so sleep-deprived that I can't make clear decisions.

This information was very helpful. For a long time I thought I just needed to get a new mattress. got the new mattress and was still having trouble staying asleep. I have had RA and Lupus for the better part of 10 years now.