Fatigue?

[kathy1981]

Hi, am new to the site, and am looking for advice! I've been taking mtx 20mg and hydoxychorlide since November with good symptom control. The last 3 to 4 moths I have felt exhausted a lot, despite getting plenty of rest. I could sleep from 6 pm through till alarm at 6 am. I take my mtx on Monday night and my tiredness tends to get worse Wednesday/Thursday. Has anyone else experienced this? I'm reading a lot on fatigue and am worried!

[sylvi]

It could be fibro that is causing the fatigue as if the ra is controlled it might not be that. A lot of people do have side effects from mtx and happily i am not one of them. There has been suggestions about increasing the folic acid to other days after taking mtx,but ask your rheumy about it and they might increase them to six days a week and not take them on mtx day. Speak to your rheumy before you do anything about the folic acid.xxxx

[kathy1981 in reply to sylvi]

Thanks for reply! I take folic acid on a Wednesday already. Will bring it up at my next appt!

[nomoreheels]

Hiya Kathy & welcome. Unlike Sylvi has said I still get bouts of fatigue even though my RD is considered quite well controlled, except in my feet that is but that's a whole other story. Even when my joints are behaving & my drug monitoring bloods are within normal ranges for me I can have weeks when the days are such an effort. I don't think I'm that unusual & don't have a diagnosis of fibro so I've sort of got used to it & accepted that it's my 'normal'.

If you've not been overdoing things or going through a particularly stressful time, if you don't have any other symptoms such as breathlessness, are a little anaemic or have heart related problems & you still don't feel refreshed after sleep then it's likely to be a bout of fatigue. I wasn't sleeping at all well because my OA wasn't well catered for pain relief wise, particularly my neck & lower back, until my GP prescribed amitriptyline. Once I'd reached the most effective dose my body rested enough to give a proper night's unwoken sleep, I cope with the days better & in turn the times I'm fatigued have become fewer. There again quality of sleep is important, so many things to consider!

I'm also on MTX (17.5mg) & have just one day when I'm more tired than normal but if that's increased to 20mg that stretches to 4 days so I think MTX itself can add to energy levels reducing. It might be worth asking your Rheumy if he/she thinks your current dose could be adding to your fatigue, I'm told it is a recognised effect.

I'm not sure increasing folic acid would help though it is a bit of a moot point, some prefer their patients take fewer weekly as there is the thought it can reduce the potency of MTX but my Rheumy suggested I take 6 a week, just not the day I inject. I used to take hydroxychloroquine but it became less effective over time though I don't recall it having any effect on my energy. The thing is we're all different & have different responses but if your fatigue is becoming disruptive I think you need to speak with your Rheumy about it.

I hope some of my experiences help & you enjoy being here. Oh & do try to keep to reliable sites when researching, NRAS & Arthritis Research UK & Arthritis Foundation, a US site, are all recommended reading. It's too easy to scare yourself silly on less reputable sites as there's so much guff out there! Ask here too, there's no question too silly or inconsequential, there's little we've not talked about here!

[smithfield in reply to nomoreheels]

Hi NMH,

As you know my pain remains largely uncontrolled, while waiting for Cimzia. You mention

Amitriptyline, what exactly is it and what does it do?

Hope you are well.

Smithfield xx

[nomoreheels in reply to smithfield]

I'm feeling much better thanks Smithfield. Amitriptyline was first licensed as an anti depressant but as with many meds it was been found to be effective for another thing, as a muscle relaxant. It relieves the tightness in the muscles that cervical & lumbar spondylosis causes & a bonus is that it also relaxes me enough to give a good relaxing nights sleep. It can take some fine tuning when to take it, too soon & I fall asleep in the recliner & need to tackle the stairs (downstairs, our bedrooms are below our living area) at silly o'clock in a sleepy state, too late & I'm more dopey when I wake than normal lol! Also if we're going out I'm the allocated driver as I don't drink so need to be ok to drive too so I take it as soon as we get home.

I started on 5mg & had monthly reviews with my GP until I reached the dose that's most effective, that's 50mg at night & 25mg in the morning. It's relieved the cervicogenic headaches i've been having for a good while & any I have now I guess are tension/stress headaches. Bet you're sorry you asked now!

I hope you've not much longer to wait for Cimzia, this has really dragged on hasn't it? I take it they've tracked down your file by now? x

[smithfield in reply to nomoreheels]

Thanks for comprehensive supply NMH, no do not regret asking.

Will speak to my GP I cannot go on much longer with this sleep deprivation I stiffen up so much at night then of course when I move the pain is excruciating so I end up sitting on the edge of the bed most of the night.To tired to read but not able to sleep. The body pillow helps me feel comfortable but then the circle begins.

File eventually turned up but when I said to the rheumy nurse that I was going to complain about their system for tracking files she got all flustered and said it was'nt missing a secretary had it. I think it was all a red herring to cover the fact she had not sent it off promptly as she had promised to do.

However it was sent off to the health provider this week, not sure how long their process takes just hope it is quick.

I am so pleased you are feeling better, I was worried about you as you seemed to have lost your sparkle.As I have said before it is not just the RD it's the add on's that come with it.

Take Care

Smithfield xx

[nomoreheels in reply to smithfield]

I know that routine! I'd manage to eventually drop off (through sheer exhaustion) & then I'd move slightly & that was it for the night, awake & upstairs not knowing what to do with myself. Tried all the things you're recommended not to do, watching tv, reading, no drinking anything too late & making the bedroom sleep-friendly but nothing worked because it was pain not an active mind, though you do think all sorts when you're up, hurting & on your own! Then your mind wanders & you start worrying about something inconsequential which is just as bad. I hope your GP recognises how difficult it is & can help.

Ok, so nurse was covering up, not helpful. At least they've started the ball rolling so hopefully not too long to wait now. You're clearly ready to start, it's inhuman the hoops you've to jump through especially when the risk of damage ranked up when unmedicated. x

[smithfield in reply to nomoreheels]

Oh those awful middle of the night mind games.I have done the same NMH painted the room a light relaxing blue, do not use the phone or the television or the kindle nothing works as you say just a little turn and you're off. It really is like a slow torture. I used to love my bed now I dread it.

That is my argument about the biologic's delay I had a really nasty flare a few weeks back and my mobility and energy was at zero., you know the feeling.

I have ended up with a pressure ulcer on the base of my spine which possibly could of been prevented.

My knees have also deteriorated rapidly in the last few weeks.

Deterioration that biologics are supposed to prevent.

Just hanging onto this is the last hurdle ( hopefully)

Take Care and have a good weekend

Xx

[moomie]

I asked my lovely Rheum Nurse this question on Wednesday. My fatigue has been a problem since a bad flare from Christmas which is only just getting controlled. I take SZZ HCQ Preds 7.5 and she has just upped MTX to 25mg. Oh folic acid 6days

She told me it comes with the disease and mtx can also cause it. You need to listen to your body and not to push yourself. If you feel like you need to rest then do so. I know if you work it gets hard. Some days just a 30 min nap can help to refresh you but then there may be days when you are just wiped out. This did make sense to me and descibed it .

She also told me that there have been seminars for Rheum Nurses on the subject because a lot of patients mention the fatigue as a problem. Her feelings are that they cannot yet have a cure as such other than to listen to your body and get enough rest.

I hope this helps you. It did me because I felt guilty and annoyed with myself that I was being lazy and could not push myself more.

Best wishes

[Dotty7]

Hi Kathy

Fatigue is a bigger problem for me than pain. I'm on mtx and hydroxy too. My rheumatologist added Vit D into the mix to help with fatigue.

Things I have found helpful include rest, rest and more rest, eating a good diet, reducing stress, being outdoors in the fresh air whenever possible (there may be a Vit D link there), and being active when I can be.

As others have said, it's a symptom of the disease as well as a side effect of the drugs, and its significance is only recently being recognised by rheumatologists. So don't beat yourself up - it's real and it makes a difference.

Good luck,

Dotty

[NanaFifi in reply to Dotty7]

Couldn't have put it better Dotty! I too am on metho and hydroxychloroquine also calcium with vit D. Both my lupus and RA are active at the moment and the fatigue is really bad. Listen to your body Kathy and good luck. X

Fifi

[kathy1981 in reply to Dotty7]

Thanks Dotty. I was very active and ran many miles and walked everywhere before the ra. I now find that some days my head is so fuzzy and my limbs so tired that all I can do is sleep. Yes I rest and rest some more, but it's constant really. Going from a very active 35 yr old with a very busy social life to this is really frustrating and getting me down. Does it get better?!

[flow4 in reply to kathy1981]

I have been on mtx since early March and find my energy goes up and down like a yo-yo. It does seem to take months and months to find a 'balance' of meds that works for each person individually. I would say that if your fatigue is disabling, then it suggests you need to try a different combination of treatments - maybe less mtx, maybe some dietary changes. Personally, I have found that the amount of water I drink is important, and *sugar* causes inflammation and exhaustion these days! I'd suggest you experiment a bit with what you eat and drink, and talk to your rheumy team about whether you've got the right balance of meds...

[Dotty7 in reply to kathy1981]

Yes! I was knackered like you are now. Eventually I had to give up teaching because of it. Then I rested almost constantly for about a year and let my body heal itself, along with the drugs. Now I run a market stall one day a week, bake for it one day a week, and spend the rest of my time looking after horses, either my own or other people's. I still get tired, and I still have days when I can barely move for tiredness, but because I am now self-employed I control my own time and I can work around it. It was major upheaval at the time to get to this point, but it's so much better.

If you had broken your leg you would expect it to be in plaster and to rest it for as long as it took to mend. Your immune system is a bit broken right now, and it will mend, but you have to give it some time to heal. Just because we can't see our immune systems we aren't as kind to them as we ought to be.

Take care,

Dotty

[Diddydriver]

I took 20 mg MTX plus hydroxy, lefl, folic acid 6 days, vit d and I too suffered fatigue. I discussed this with my rhumy nurse and she made me an appointment to see my consultant who changed the MTX tablets to injections, I have now had 6 injections and I must say that the over whelming fatigue has been an awful lot better, I now just feel a little tired but with a short rest I feel energised again. I have been able to do a lot more than I did on the tablets. So maybe a good chat with your rhumy nurse is the way to go. Take rest when and where you can I hope you feel better soon. X

[kathy1981]

Thanks everybody for the comments, all very useful. Very new to all this and trying to gage what's normal and what isn't!

[Victoria-NRAS Partner Moderator NRAS]

Hi Kathy

Sadly, fatigue is very common. We hear about it a lot on the helpline. We will have a booklet on this further down the line, but it's in early stages of development at the moment. Arthritis Research UK have some info on fatigue which might be helpful. See article on this page and link to their booklet on the right:

arthritisresearchuk.org/art...

Victoria

(NRAS Helpline)

[Jeanabelle60]

Fatigue has re-entered my life with a furry. I have been on Pednoiswhateveryoucallit......the steroid! Anyhow I am being weened off it and this morning I felt like my body weighed three times its size. I can do nothing that doesn't leave me exausted. It's a long time since I have felt like this. I have a long awaited dentist appointment for this afternoon and I just really wish I didn't have to go.....I don't want to do anything but lay down on this sofa and sleep even though it m not long out of bed.......my pain is returning too but I knew this old happen I just didn't know honk it would appear so soon......I'm still on 4mg of steroids a day. God I'm so tired.....its an effort to type this reply so I'll end it now and wish everyone as good a day as possible. Jean

[nomoreheels in reply to Jeanabelle60]

Jean my lovely, I also take a steroid though not pred, I take deflazacort, 3mg & didn't relate it to fatigue... but that's not my reason for replying, whittering as usual! No, what I was wanting to say is that I go for a lie down, only an hour each day on the bed If we're not doing anything & sometimes I fall asleep & other times it just rests my joints. Just wondering if you could get into a sort of routine & did the same it might help a bit? I know how it feels when your body feels as though you're walking through treacle & everything's an effort & that itself is tiring. It's not giving in to it, all I'm doing is still having a siesta!! They're not daft you know Spaniards lol, best thing they ever invented except we're not sleeping off lunch & copious amounts of wine!!!

I hope all's well at the dentists & nothing is needed. xxx

[Jeanabelle60 in reply to nomoreheels]

Walking through treacle, that's exactly how it feels. I cancelled my dentist appointment, went out to the garden and attached my new garden hose came in and went to bed. I'm not that long out of it! I'm able to sit upright so that is an improvement but I'll be laying down again as soon as I finish this reply. Thanks for your reply heels, it's always good to hear from you, take care darlin. Jean XXX

[linda-5502]

yes I know what you mean.

[munchkin]

Fatigue is also a major problem for me also. And no I don't suffer from Fibro either I think it is just part of the RA. I can fall asleep in the middle of a lesson whilst marking books.

[Dotty7 in reply to munchkin]

I can so identify with that! I used to get in from school, fall asleep, my daughter would wake me up to ask if we were going to have any dinner, I'd provide basic food and parenting, sit down to do marking and preparation for the next day, and wake up in the small hours with my nose on the books. I don't miss it!

[beeckey]

Hi all just back from holiday i was trying to do a online shop it was taking so long because i kept falling asleep doing it my hubby said he has never seen anything like it and that has on like that.Plane was delayed after we got on it so tried to play cards but kept falling asleep and dropping the cards it can happen like that now i am sitting here very tired but cant sleep wishing you a good night but doubt if i will have one x

[Hidden]

Hi there. Every time hubby takes methotrexate he's exhausted for a few days and can sleep for England bless him. Regards, Sue