View Full Version : Fatigue, how do you manage?

11-01-2012, 04:41 AM
Hello Everyone!

I recently had a flare from my SLE and ofcourse went to a few doctors. Apparently I now have fibromyalgia too. Yippie. So I haven't been sleeping well. Real fit full. I go from dead asleep to wide awake.

My rheumatologist has me on Lyrica now as well as the plaquinel and tramadol and etodolac and to be honest, I'm more pooped then usual.

I think the stress is keeping me awake. But 3 of the 4 drugs I take daily cause drowsiness so I'm dead tired all the time.

We all have lives and jobs or kids...How are you functioning?

My doctor keeps telling me to work out which will help with the enormous weight gain but that makes me hurt. I tried coffee which I despise and my blood pressure was up on my last visit to 146/80.

I'm frustrated. I'm tired. And more moody than life itself.


11-01-2012, 04:47 AM
Silly iPhone. Sorry for the double post. :)

11-01-2012, 05:20 AM
Hi Phoenix,

There is a difference between fatigue and tiredness, or drowsyness from the meds.
I have fatigue, but I am not tired/sleepy. Like our Rob always said, fatigue feels like you are wearing a lead blanket, that is dragging you down.
The Lyrica is supposed to make you sleep, at least, that is what I thought.
I sure hope, that you can get help and feel better.


11-01-2012, 05:59 AM
i have fatigue - it feels like you are worn out. slow and lethargic, it almost hurts to move.

i have sleep problems - i cannot get into a restful position and switch off the brain.

the 2 are very different for me. but can and usually do happen at the same time.
the treatment for each is different.
sleep problems can sometimes / often be cured with medication, (herbal or perscription)
fatigue can only be cured by rest and medication if inflamation is involved.

doctors prescribe drugs like lyrica and depressents to slow down the brain, and settle down the highs and lows that we get into when fatigued. I presume the doctor wants the lyrica to work with the tramadol and etodolac, the combination should work as anti inflamitories on the muscles and a relaxant to the brain.

remember i am not a doctor, but i do have fibro and lupus combined as well.
i ask all of my doctors lots of questions, i suggest you talk to him next visit about what he is trying to achieve with this combination of drugs.

by understanding what the doctor is trying to achieve, you are more able to understand what is happenning to your body.
knowledge can remove some of the frustration you feel from the fatigue.

11-01-2012, 07:14 AM
I do link fatigue and tiredness to the same source although I know I should not as they are different.

I can deal with the sleepiness. I cannot however deal with the body aches and pain. The unwillingness and nonability to move or do things I used to.

The Lyrica I believe is being used to treat the pain/muscle spasms and new side effects as well as help with the actually falling asleep. I feel that it makes me tired and allows me to sleep for around 3 hours. After that I'm up again.

I feel like the constantly not sleeping is adding to the fatigue and over all horribleness I've been having.

Is there anything you do to maybe fall asleep? Something you do in particular to combat either your tiredness or fatigue?

11-01-2012, 11:09 AM
I haven't been able to work or have a life because my fatigue is so bad and if I do anything I start to get sick after an hour. Being just sleepy I can deal with because with some caffeine and a shower it starts to go away. I had a big problem with sleep it would take me hours to fall asleep and I wouldn't stay asleep for more than a couple of hours, I just told my doctor and after a few different sleeping meds I found that trazadone worked for me. Talk to your doctor because medication works differently for everyone.

11-01-2012, 01:23 PM
I'm forcing myself, one step at a time, to go to work each day (except the days I have to go to the doc, which is entirely too often). My job has a tendency to force me to stay awake, with high brain activity, but when I get home, I have a tendency to "crash", which I try not to, since that interferes with the night sleep cycle... Anyhoo, "time of day" might matter on some of your meds. Like steve suggests, talk to your doc's office, and ask them about a good "cycle" to get into with the meds. I was taking a daily low-dose anti-depressant, which "slowed down" the brain or something, to where I could sleep better at night. It wasn't anything major, just a slight increase in "sleepability", if you will. I still have bad nights with it, just not quite as many.

11-01-2012, 11:59 PM
I too am at constant war with fatigue, yet at the same time sleeplessness.

Medicine provoked fatigue or my general fatigue are always biting at the reins of my life. As I just explained to my family (which is a kind of contradicting concept)but for me staying active keeps me going. Whether its pushing myself to do a load of laundry or working in the yard-getting up and doing ANYTHING not only makes me feel less tired (not the normal tired-I refer to this as the "good tired", but lightening that "lead vest") but also makes me feel accomplished-and personally that alone for me is some pretty potent medicine. I can understand first hand, how much some of us are physically unable to do things day to day. Heck there's some mornings the physical task of actually crawling out of bed seems more pain than its worth, but some pains can worked through. We're all going to have "bad days", "ok days", and "better than most days". Everyone's different, but I think we can learn when we can push a little and when we can't. A happy medium.

And speaking of happy, for me it's not just a physical effort, your state of mind has to take some of the load. If I find myself feeling especially lousy, I turn to my "fall backs of happiness". Maybe it's turning up the toons, watching a comedy skit, talking to a good friend/family member who brightens my day, reading the comics or revisiting better days (such as a photo album or home movie), If I mentally feel good, my body feels just a little bit better. Stay positive, which is a feat in itself, but it does the body good!

Exercising also boosts that energy (again there's the good and bad tired-we want the good tired). I myself have a really bad back, a shattered knee, one wrist that's completely useless and the other soon on its way, along horrible gout in a leg (just some of the biggies)-so I began going through TONS of exercises figuring out what personally worked best for me. I may not make the Olympics lol but it's something, which I think counts more than nothing at all.

I've actually began seeking out ppl with physical limitations-who better to learn from or encourage, than ppl like myself? One such friend has now dropped 103lbs in the last 10 months! He contributes a main factor in his success is having a support network-just like this is. We may not all be able to find those buddies we can work out with in person, but there are SO many out there on the web-on exercising sites-dealing with limitations and feeling hopeless. Human inspiration is a magnificent thing to behold. We're all dealing with issues, why not connect with someone, help someone, succeed with someone, touch someone's life-you may just find that even if your struggling with your own battles, you can begin prevailing by sharing what you think hinders you!

Sorry lol I get carried away. Anyways-another idea is fatigue from anemia. Kidney issues alone can cause it along with so many other things-for me, when my anemia spins out of control I definitely feel it. My b12 for instance has a nasty way of reminding me by causing painful palpitations.

Sleeplessness I haven't successfully conquered yet. But my dr has given me a script sleeping aide-I take it on a must need basis, because frankly, who likes taking yet another pill?! Lol meds can also cause it as I'm sure most of us know. Pain is a huge factor in my sleepless nights (mostly because me and pain medicines do not get along) but I've found taking a warm bath or shower before bed not only relaxes my stiff muscles, but soothes some of the aches. Same as snuggling with a heating pad (mine has a 15min timer). Knee pillows!!! Oh my goodness lol must have! My husband thought I was crazy-now he can't sleep without one! Lol I also purchased a memory foam/down pillow topper, which has helped too. When u go to bed, think about your bed, your surroundings, anything that you can change or make the feat of sleep more appealing-both physically & mentally. It's a precious commodity, especially those with sle-if you think it's worth a shot, try it! Experiment, it's worth the effort : )

11-02-2012, 12:20 AM
I also wanted to add (because I know heat can cause inflammation) that for me this gel a friend (who also has joint problems) gave me called "biofreeze" works wonders on swelling and inflammation pain. I know there's things like bengay (sp) icy hot etc, are out there that may work too-personally I find it burns much too bad. Or that for tendinitis- applying a cold pack for 15mins followed by a hot pack wrapped in a warm damp cloth also helps tremendously. My sister has fibro m. And I know that lyrica does pack on the lbs (along with throwing insulin levels off), there may be an alternative (she's seeking one out now). She also obtained a prescription cream to rub externally which she says helps a ton-sorry I can't remember the name of it

Hope any of that helps

11-02-2012, 04:22 AM
My method for dealing with fatigue is quite sophisticated-

I grit my teeth, cuss alot, and drink gallons of coffee.

Seriously, fatigue, both physical and mental, is something I struggle with nearly every day.
It's a source of constant frustration that I've never found a truly effective means of dealing with.
Like many people here, I'm exhausted, yet I cannot sleep well.

There are some really good suggestions in this thread, and I will be trying a few of them.

Thanks for all the good information and ideas everyone,


09-27-2013, 07:36 PM
Last week while in the worst flare I've had..I did something I said I would never do & it has me eating my words happily! I've weighed pros & cons to come to what has single handedly helped my stress, mood, pain & fatigue never could I have realized how beneficial it is for me AND my family! I lave decided that I will cut corners to save enough money to pay someone to clean house for me WHEW! I can finally breathe, take better care of myself & spend wonderful moments with my family even during a horrible flare I highly recommend it...barter for it, trade for it, cut out another indulgence once or twice...I thought I would hate it but I'm loving it :)

09-27-2013, 07:48 PM
Add on to my prior post...I don't want anyone to think I'm not active..I am but try to include fun times with family maybe even walking & talking together. And even though someone is helping me keep house I still do the things I feel I can without over exertion..cook, fold clothes etc. everything is just flowing better..if I have to lay down, I'm not laying down stressing over what I couldn't get done,,lessening my mental stress & the family is happy I've done this for us :)

09-28-2013, 05:45 AM
I think it is fabulous! I would if I could. Anything to get to feeling better and the stress level down

09-28-2013, 11:26 AM
I absolutely agree as I also have a house cleaner. Think about the "spoon theory" concept..... we who have Lupus have extremely bad fatigue and I don't know about you but I'm not going to waste my small amounts of energy on chores if I don't have to,, I save my spoons for my kids. No one knows how long we will be around but if I do retire early then I want to leave as many good memories behind as possible, and stressing about chores isn't one of them!

09-29-2013, 02:50 PM
I need to read the Spoon Theory, I see people mention it quite a bit on here ..this is all new to me (the forum that is ..I've had SLE for at least 13yrs)
I'm glad Shanna & others that agree..because before getting help it was a source of pride to do it myself, but I wish I'd resorted to it years ago! There would have been many more good times had but better late than never. It took me a very long time to use a riding cart at the store when I was in bad shape but a therapist helped me "see" that it would help spare me in ways that would benefit me & my family...I'm OVER the pride bit! LOL

09-29-2013, 08:51 PM
Here is a link to The Spoon Theory. It has helped many of us


09-30-2013, 05:11 AM
Hi peeps.

I just put a post up in regards to this...kinda.

I'm so glad that its not just me struggling with this damned lead blanket/spoon-less-ness. Wat a nightmare.
How to be satisfied with what we have.....what an awkward idea!


09-30-2013, 10:46 AM
I have found for me it's the path of LEAST resistance...they all seem crummy but not fighting against it is helpful for me. Oh & thank you for the link tgal it is spot on...wonder if anyone has some spoons to let me borrow so I can go grocery shopping:)