Fatigue, Sleep and more

General
1

I have read several posts about fatigue and wanted to ask everyone, "What does fatigue look like like for you?" I know that everyone's experience is different. I am preparing for my 2nd opinion appointment and was surprised to find 25 questions just about fatigue! I was on NSAIDS for 30 days and it did nothing for my fatigue. MTX was added about a month ago and I am still getting used to the side effects, but the fatigue somewhat better.

When I am having a bad day, I will go to bed at 6 or 7 and will not wake until 6 the next morning to go to work. I work 1/2 day, and by the time I get home I am exhausted and go back to bed. I honestly could sleep for 4 hours, but after an hour or two, I get up and do dishes, pick up my kids, help them with homework. I take MTX on Friday and usually go to bed early because of the nausea. Saturday and Sundays are always unpredictable, Every Tuesday, I am exhausted to the point of wishing I could disappear. It exhausts me to even hear people talk. The last three Tuesdays, I can't eat, and by the time I get home I am nauseous to the point of dry heaves. I am assuming it is the MTX. Today is Tuesday :(

On good days, life is tolerable. I have some energy, I usually have to rest at some point during the day. I can help my kids with their homework, Usually these days are the day before MTX and the day after.

I have read the PsA symptoms post, but because fatigue is one of my worst symptoms, I was wondering about that... Thank you!

2

At my worst, just before I was diagnosed and began treatment with MTX (and later, Humira alone), I would work, come home and be done. ON weekends, I was just done. My husband says I basically spent a couple of years doing nothing but working and not moving from the couch.

Your experience with MTX sounds like mine. I injected on Friday evenings and spent Saturday napping. Sometimes, I spent Sunday napping also. By Tuesday, sometimes Wednesday, I noticed a distinct downturn in how I felt. Are you taking oral MTX or injecting? If you're doing oral MTX, talk to your doc about injecting. It may help--a bit--with the nausea.

I did notice the crushing fatigue left pretty quickly after I began treatment. I well remember the day I testified for a former client and spent the entire day in a very uncomfortable seat outside a courtroom in Louisville, Kentucky, then went to lunch with colleagues. Instead of being down that night and the next two days, I went to work the next morning.

Now that I'm three years in, with other physical ailments also being treated (200 mg Progesterone twice a day; 5 mg Methimazole 6 days a week), I'm doing a lot more. I noticed REAL improvement when I began Progesterone in October of 2014.

Now, we're swimming one to two days a week. I'm walking more and going to restaurants. I'm going to the grocery regularly. We've been to the mall several times, we've been to three concerts this year and were in Gatlinburg for three days back in October. For the first time in two years, we're having dinner with some old colleagues this Saturday evening. At some point between now and Christmas Eve, I'll be going to the library, also for the first time in two years.

I'm tired after I spend the day visiting clients (at least a one hour drive, one way) in various Kentucky jails and prisons, but I'm not down for a couple of days afterward. I try to schedule those on Fridays so I can spend Saturday doing nothing, if I need to. Sometimes I do, sometimes I don't.

I've also had to testify a couple of times this year, luckily those have been on Fridays so I can have Saturday to rest. I did a presentation at my agency's annual seminar this year--I was away from home for three days to attend that. Once again, I was tired but not down. I did make sure to schedule Friday of that week off. I spent the day alone, reading but because I was talked out and tired of people, not horribly exhausted.

Last week, I worked on my trial case and lived in a hotel room about 100 miles away from home. We did five days of very intense work, worked on and filed 10 motions, discussed a number of other motions and had other case discussions. I also visited the area one afternoon and saw my client another afternoon. Having PsA means I don't sleep well in hotel rooms any more--if it's not the left arm/shoulder and c-spine issues, it's the right hip.

The point of all of this is I took two naps on Saturday and another on Sunday--nearly fell asleep at work yesterday afternoon and today, I'm still recovering. It's not the awful, crushing fatigue like before I was diagnosed, but it's more than normal exhaustion from five hard days, including not sleeping well. Definitely a point to talk about when I see my rheumatologist on Thursday.

3

Before my diagnosis I did have fatigue but attributed it to working sixteen hour days seven days a week, getting older and approaching the menopause. I don't recall even mentioning it to my rheumy until I was on methotrexate which made it WAY worse and I couldn't get through the day without a two hour sleep at lunchtime and even more at weekends when I could rely on my husband to help out in my business.

Stopping mtx helped, a bit, but by then I was in the full grip of my PsA and things were getting worse and worse. I don't recall that leflunomide helped my fatigue all that much but it probably did by putting me somewhere between pre-diagnosis and mtx states but then that started to run out of steam or maybe my disease activity ramped up even more. I then had a short three months on Humira which didn't help at all with anything. I've now been on Simponi nearly two years and whilst I still get tired, managing what I do to avoid exhaustion is a vital element of my overall disease management/treatment. My first year on Simponi was a bit skewed because I'd started another drug around the same time which didn't agree with me and also caused fatigue ... and it took a while to realise this was part of the problem!

I still get the odd day like you describe - exhaustion to the point of wanting to disappear - that is spent in bed or lying around. For the most part it is in response to overdoing it. A good day for me now is one where I can wake/get up around 8:00am and make it through an average (non-working) day without needing to sleep during the day, although I still rest a while reading or watching TV, and go to bed between 10:00 and 11:00pm. But I can't have two active or busy days on the trot, that finishes me ... so tomorrow I'm meeting a girlfriend for a long lunch which means I'll need a quiet'ish day at home on Thursday.

It's a delicate balancing act.

4

Jules's point about dealing with this disease being a delicate balancing act and paying for overdoing it is spot on. I also meant to add that I still have odd days where I'm at home reading, but they're maybe once every four or five months.

My sleep habits have also changed since I've had this disease. I think partially as a result of PsA, either untreated or not quite correctly treated, I would have difficulty getting up in the morning. In the last 15 months, I think because I *am* properly medicated, I'm waking up between 6 and 6:30 a.m. most days--now when I sleep to 8, that's sleeping late--and dropping off between 10:30 and 11 most every evening.

I'm doing better during the day, i.e., not falling asleep at work, because I am better rested, my Vitamin D levels are fairly normal and I'm correctly medicated. Somewhere on this site is a discussion of Vitamin D levels and auto-immune disorders--my doc does blood work to keep tabs on mine because some folk with auto-immune disorders have trouble with Vitamin D levels.

5

When I first had symptoms, fatigue quickly became the worst one. Eventually I could only do 'normal' things for an hour or so before lying down although severe joint swelling was part of that too. Your description sounds very familiar to me. I was a smoker back then and one thing that really sticks in my mind was that there came a point at which I simply did not have the energy required to smoke a cigarette so I just stopped. A good job too, you might say. But when a nicotine addict is just too knackered to smoke anymore, despite a really stressful time, then you know fatigue is real!

Mtx helped with fatigue a lot, little by little. Humira's helped even more. I still get tired easily but overall I'd say I have more consistent energy now than I have done for maybe a decade. There's hope and I wish you well. What you're going through is tough but with a bit of luck it will not be like this for too long. Don't forget to drink plenty of water, get some regular exercise if at all possible and eat the best possible diet. Sorry to sound like your granny but these things really, really help.

6

Thank you all! I guess I am still getting the feeling from others that this is something that if I would just make up my mind that I was going to feel better that I would... It helps to know that I am not just lazy - today every step that I have taken has hurt. Exercising is an issue. I live in Fl so heated pools are hard to find and regular exercise, even walking is torture. I am hoping that the MTX will kick in soon and some the fatigue will get better. Thank you all!

7

LRoland, yes, we all experience the fatigue differently. I remember sitting at my desk at work and wondering how on earth I was ever going to make it out to my car to drive home. I'd have to say the fatigue was one of my worst symptoms too.

I'm impressed with your rheumatologist! A questionnaire that asks about so fatigue in so many different ways has to be a good thing. My clinic does the same, every time I go.

If you suspect mtx may be a factor, don't forget to tell your rheum!

8

Fatigue is definitely a universal symptom I think 99% of PsA sufferers would say they have dealt with. Thinking back in the years before I started having the first "pain" symptom, which was sore and throbbing fingers and pitted nails, I had the crushing fatigue. So bad that I was beginning to think I had narcolepsy--I would fall asleep 2 minutes into a car ride, and as the driver I had to fight to stay awake to drive the 10 miles to town! At work, by 10 a.m., my vision would get blurred and I'd be so exhausted I felt like I could disintegrate. Do you guys get that horrible exhausted feeling, too? After a couple years of that, the overall stiffness and achiness, tendonitis and muscle weakness started and just gradually got worse. Geez, you guys, we sure put up with a lot, don't we? And it's such a weird disease--at least for me--I don't get obvious swollen joints, although I did have overall swelling and I look skinnier now that I'm on Enbrel. But, nobody besides my doctors noticed the swelling! My rheumy could see and feel it.

LRoland, you mentioned MTX. So, you aren't on a biologic? I never took MTX, but I did have a huge improvement in my health since I started Enbrel 17+ months ago. I haven't had fatigue since I've been on Enbrel. I don't have the swelling or stiffness--well, very little stiffness--and no muscle weakness or tendonitis. It is amazing how Enbrel has helped me. I do have some pain from PsA damage, but at this time I'd much rather deal with that than go back to feeling as awful as I did before I started Enbrel. Good luck to you, LRoland, and all of you who are still battling fatigue and any other PsA symptoms!

9

Grandma J, no I am not on a biologic. I was just diagnosed 60 days ago. I went to my GP, knowing that it was arthritis in my hands,and at the time was having trouble with my toes and ankle. I did not know enough to even understand the difference between the osteo and inflammatory. It has been very aggressive since and I now have problems with my shoulders lower back, one knee and wrists. I have an appointment with another Rheumy at a research hospital in March because I do not think this doctor is very aggressive in treating PsA. I am lucky that my GP knew something was wrong in the early stages, so I don't have a lot of erosion, just early erosion so far, but it is consistent with the type that you see with PsA.

10

For me, it depends how well my diseases are being treated. I have multiple autoimmune issues, so if one of them is out of whack or flaring, the exhaustion/fatigue and sleep are off in different ways.

Mostly it's either all day fatigue, like you feel when you're coming down with something or it's hitting-a-wall exhaustion, where all of a sudden I just feel like I could fall asleep any second,...or actually fall asleep when I don't want to.

My sleep issues are twofold - if I'm on prednisone, have anxiety,am in severe pain, and/ or don't fall asleep soon enough after taking hydrocodone, I have trouble sleeping. If I have a lot of pain, I have trouble staying asleep once asleep.

People who have never experienced this type of fatigue don't know how impossible it is to just work through it. You can't explain it, either. My husband struggled to understand and then one day he got hit with the flu and didn't have the energy to do much of anything...even get himself a cup of water. After patiently struggling through the day taking care of him (struggling because I was off treatment for PsA at the time for neuro diagnosis), I explained to him that what he was going through as far as fatigue went was similar to what I experience on a daily basis when my disease isn't properly treated....and sometimes when it is. He now has something to relate to, but had to be IN it to really make the connection.

11

Everyone gets tired! And modern life is very tiring. Nobody gets as much sleep as they'd like to. Most people work longer hours than they should. You just have to put up with it and push on through.

That's what I'd have said (or thought) before I experienced disease-induced fatigue for myself. The pathetic thing is I was beating myself over the head with all that for way too long and not until I found myself pinned down by fatigue at times, physically unable to get up off the bed or the sofa, did I start to re-evaluate.

It's important to recognise that fatigue is a real symptom if only to put an end to self-flagellation and the guilt that goes with it. And so important to know that it very often improves. As does quality of sleep .... that has taken a long time for me but it's great to finally sleep normally much of the time.

12

Ah, yes, sleep! Other than one small stress related blip around ten years ago, I have always been a great sleeper. As a baby/toddler/child/teenager I was the sleeping offspring all parents want! Then along comes PsA and my sleep quality deteriorated significantly and it seems permanently. Some spells are better or worse than others so this does impact me during the day. I try not to dwell on it too much and just accept. When I get overtired and still don't get a restful night is when I will take amitriptylene for a while to help re-set things.

13

I have a little different problem than most people.....I don't care to sleep much because my life is too short to spend extra time sleeping. When I was younger and in the age where I actually thought it was important to get my "beauty rest", I always got 8 hours of sleep at night. Now, it's really unusual to get 8, and I would say 6 is the average. My days are pretty much full of things to do--sometimes relaxing things, like watching TV, but things that keep me "busy". I've always had in the back of my mind there will come a day of eternal rest, and as far as I'm concerned, my 62 years has gone by waaaaay too fast and that day is getting closer and closer. My mom has always been really active and before she was 80 she never took a nap. When asked why she kept so busy, she'd say, I'd rather wear out than rust out!

Having autoimmune disease with fatigue being one of the major symptoms, it's not easy to keep up that attitude. Looking back, I don't know how I managed, being exhausted all the time. During the last couple years before starting Enbrel I didn't think I'd live past 70 because of the pain and fatigue from PsA. It's so much better now--I actually feel spoiled, and dread the day Enbrel stops working.

14

I have a similar attitude I think. I suspect I do a bit more lazing around than you do, but that's by choice these days. Fatigue can get so that there is no choice, or at least that's what I found in the early days. And I was shocked by that.

Grandma J said:

I have a little different problem than most people.....I don't care to sleep much because my life is too short to spend extra time sleeping. When I was younger and in the age where I actually thought it was important to get my "beauty rest", I always got 8 hours of sleep at night. Now, it's really unusual to get 8, and I would say 6 is the average. My days are pretty much full of things to do--sometimes relaxing things, like watching TV, but things that keep me "busy". I've always had in the back of my mind there will come a day of eternal rest, and as far as I'm concerned, my 62 years has gone by waaaaay too fast and that day is getting closer and closer. My mom has always been really active and before she was 80 she never took a nap. When asked why she kept so busy, she'd say, I'd rather wear out than rust out!

Having autoimmune disease with fatigue being one of the major symptoms, it's not easy to keep up that attitude. Looking back, I don't know how I managed, being exhausted all the time. During the last couple years before starting Enbrel I didn't think I'd live past 70 because of the pain and fatigue from PsA. It's so much better now--I actually feel spoiled, and dread the day Enbrel stops working.

15

I doubt you do more lazing around, Sybil. My house is usually a disaster and I don't bake and cook like you do. I'm just more involved with little kids, that's all. I dawdle and get sidetracked easily when I'm doing housework, so what takes most people a couple of hours takes me all day!

16

Thank you for all of the information. I feel kinds normal now.... I really wanted to go Christmas shopping today, but when I woke up this morning I could tell that it would not happen today. I could have gone, but I would have been dragging the whole time and would not have enjoyed my trip and probably would have forgotten half of what I went to get. I guess I just need to accept my new "normal."

17

This is such a great discussion! Like SixCat said, I feel like my fatigue is "crushing". It comes, and there ain't nothing I can do about it; I'm out until my body decides to let me get up. There are days that I can get a good night's sleep (10-12 hours), and get up for a few hours and then sleep again for the rest of the day. It is unstoppable! However, when my meds are just right, an afternoon nap is sufficient to fend off the Sandman. I have noticed that my fatigue will come back when there is a sudden change in the weather, and even if the meds are working well, I will go down for a day or two. My symptoms are more severe than the average Joe, though, so that may not be common for others.

You mentioned the side effects of MTX, and that they are a problem for you. There are a few things tht can really help reduce or eliminate the side effects. One is very easy: drink lots of water. Most of us get nowhere near the recommended amout of H2O per day, and making that change can really help reduce some of the side effects. Also, MTX depletes folate in the body and supplementing with folic acid can be a game changer. You'll want to talk to your doc about this because the prescription doses are much higher than what is available OTC. Finally, taking MTX via injection can really help prevent many of the GI side effects. The shots are pretty easy and only once a week. If MTX is beginning to work for you, these small changes can help you tolerate the medication so much easier.

I hope you start feeling better soon!

18

I have been reading a lot about "The Spoon Theory" and "But You Don't Look Sick" by Christine Miserandino. It really helped me understand my fatigue. If you have not read it I highly suggest. I wasn't sure if I could post links, but it is easy to find. It may already be part of the Newbie's Guide, but it is a theory used to describe the everyday living experience when a disability or illness presents a reduced amount of energy available for productive tasks.

19

At my last primary doc's appointment we discussed my fatigue, again; I don't think she's very "up" on the PsA because she always seems baffled by my response to her questions "I'm ALWAYS tired" I tell her. Though adding Humira to the MTX, and taking Vitamin D (and I also take a B-12 daily) help some, I am always tired. I prefer to sleep about 9 hours a night, and on weekends can do a solid 10-12 (sometimes with a nap, though not often, I'm not a good napper, too anxious).

It's about 100 x worse when I've been achey or hurty - pain is EXHAUSTING and will only add to the fatigue. If I'm nauseous, again, it's worse (I take MTX by injection, but still experience nausea - in fact until last week I was nauseated for 4 weeks solid after missing an injection due to an infection. I swear skipping an injection makes it worse when you pick back up again).

Before treatment I was in university and working mostly full time - I'd go home on Friday after work and SLEEP until 8 or 9 in the evening, eat something, then sleep until the next day. In grad school I'd fall asleep on the couch watching Doctor Who with my girlfriend. When I first started MTX I would zonk out if I sat still for 5 minutes, comfortable or not (that was horrible, because I kept having to ask professors for extensions). Even now I'm prone to passing out if I get comfortable in front of the TV.

I have noticed, however, that the fatigue is somewhat helped by activity - I started doing yoga 3-4 times a week back in September of last year (2015) and since starting I've seen some additional mild relief in the overwhelming fatigue I often had before, but I'm still always tired. But, it's nice to go and feel like I've moved my body some - and since it's yoga, I just modify where I need to, if I need to, when joints hurt (or, hell, I can spend the entire class in child's pose if I want!). It doesn't help with the nausea or loss of appetite, but it's nice to move in ways that don't seem to hurt, and often make some pains less (although after the endorphin high wears off those aches will come back). It also seems to have helped some with weight loss, though that might also be from the month of being too nauseated to eat much, or from finally losing the water-weight my NSAIDs caused (which I've stopped taking altogether now because my system doesn't seem to tolerate them AT ALL any more - tramadol for me from now on).

Regardless, pretty much anything makes the fatigue worse - so a good day is mostly one in which I only have one thing adding to my normal level of fatigue rather than multiple.

I'm lucky though, in that my partner understands my limitations - she was with me from the beginning when I first got diagnosed, through my first allergic reaction to sulfazine that resulted in an ER trip, etc. On bad days she'll make me tea, or run to the store for applesauce, or make dinner.

I echo other suggestions on switching to injectable MTX if you're not already - while I still have nausea off an on, it's not nearly as bad as when I was taking it orally. If your Rheum thinks you're ready for a biologic (and you're not already taking one) that's worth trying as well. And making sure what ever pain management your on is actually working also helps - especially if it's causing additional side effects that might make your fatigue worse (I know the water retention, heart burn, and other gastic issues I had on NSAIDs made my fatigue worse). But also, you may have to adapt to a new level of "normal" fatigue at some point and accept that this may be a "new normal", at least for the time being. I've had to really learn to work within my limitations and not try to do too much or I'd just pay for it later. It sucks, since I remember when I used to be able to do all sorts of things (and I'm only 32 damnit!) - but I'm working on being ok with being able to do less.

Oh, one more thing - I almost forgot - If you experience persistent nausea one thing I've found to help is candied ginger and jasmine tea. Both seem to help dampen that stomach irritation to a point where I can either eat a little something or focus on work.