Fatigue

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Right then my fellow sufferers , here's a question I, to be fair, keep asking. Should I still be getting the fatigue I am experiencing now that Meth and Benepali have my condition under control? I still have sleep problems at night, fidgety unless I take a codeine and I find I need a nap most days.


The meds have really made a difference, I cycle to these steps and then run up them, 10 times twice a week, which I never would have been able to do before Benepali. (old photo as the phone box is no longer there) Like I said though I still get fatigue every day and obviously it's worse after exercise. Is this normal? I'm nearly 57 so no spring chicken.


Comments

  • Lilymary
    Lilymary Member Posts: 1,742
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    I can’t comment on the effects of the drugs you’re on, but I understand that fatigue can be one of the effects of arthritis, although I couldn’t tell you why. I was just coming out of 3 years of (relatively mild) ME/CFS when my OA suddenly reared its ugly head, and the fatigue I feel now is quite different to that caused by the ME. It’s almost like walking with a limp is in itself exhausting, I feel my body is having to work twice as hard to do what I took in my stride before, and I find walking at half speed is more tiring than going full tilt when healthy.

    I can’t say whether fatigue is a by product of the auto-immune system going off message, but it wouldn’t surprise me, when the body is trying to do, or perhaps trying NOT to do, what it was originally designed for when the wiring has gone wrong and messages are going astray. But then I look at the pills I’m on, and every one of them lists fatigue as one of the common side effects.

    I wonder if it would be worth getting your body into more disciplined sleep patterns? Even when my ME was at its worst, I only very rarely let myself sleep during the day to make sure that I had a better chance of a good night’s sleep. Staying awake for hours at night is so miserable, I did my best to avoid it. There are lots of “tricks” to helping your body get into a better circadian rhythm, and preparing yourself for sleep is really important (no screen time, no caffeine or alcohol, nothing too mentally stimulating, write your worries down then forget them till morning etc.).

    But well done doing your bike ride and uphill run. Didn’t you know 57 is the new “spring chicken”? But if you’ve only just started on this exercise regime, it might take a while for your body to get used to it, perhaps build it up a bit more slowly for a while, then as your fitness improves you may find it less fatiguing.

  • Maturecheese
    Maturecheese Member Posts: 130
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    Thanks for the reply Lilymary.


    It could well be the auto immune jiggery pokery causing it but seeing as I have more chance of winning the lottery than seeing my Consultant I thought I'd ask just to see if anyone in a similar position to me is getting the same effects. By similar position, I mean back mobile again without any pain except for little niggles but still fatigued.

    As for the exercise it's actually a lot less than I used to do before i got RA and I sometimes do some light weights in the garden also. I have been doing pretty vigorous exercise since I was around 44-45, in fact the missus thinks over doing it up the gym 3 times a week might have caused the RA. (doubtful) I'll be honest though it's getting harder and harder to keep it up especially now I'm out of a gym routine. I can't see me going back to be honest so I'll just keep up exercising like I am now for as long as I can.

    As for the sleep problem, I appreciate the advice but |I'm so used to 'chemical help' that I can't see any other way working. I'm not very good at training my Brain to change my behaviour or I would have been a lot more successful in life.


    Anyway there it is and I am aware that there are many on here that are in a far worse place than me so I should be grateful that I'm able to to what I can at the moment.

  • Mike1
    Mike1 Member Posts: 1,992
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    I am knackered most of the time but only getting 2 or 3 hours kip a night I can't expect anything else. Unlike Lilymary I am unable to keep myself awake during the day as much as I would like to, I can nod off for 10 to 20 minutes at any time of the day despite what I may be doing. I don't have to be sitting or resting to nod off! And unlike Maturecheese I don;t get chemical help from my GP as he won't give me anything. Nodding off is one of the reasons that the DVLA have withdrawn my driving licence!

  • stickywicket
    stickywicket Member Posts: 27,723
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    The real answer is I've no idea. However, here are a few thoughts.

    I remember you've had it very bad for a long time and I'm wondering how much 'recovery time' your body has had. OK, you can't do anything like what you could previously but what you are achieving seems pretty good to me. Perhaps you're pushing yourself too far too soon and your body is simply complaining about it.

    Of course fatigue is part and parcel of arthritis but it can wax and wane. Maybe if you don't push yourself quite so hard.......? Equally, do you take pain relief as opioids can make us very tired? Are you still having regular blood tests during the covid chaos? Mine were left for 6 months then, when I had one, my iron levels were low (common with both RA and with the meds we take for it) so I'm now on a course of iron pills with another blood test booked.

    Sometimes, it's the little things.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stickywicket
    stickywicket Member Posts: 27,723
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    Afterthought.

    I often have what I call a 'meth day' either the day after I take my meth or the day after that. Not every week, just some weeks so it still takes me by surprise after all these years. Maybe if you eased up on the exercise the day after you meth.....take a day off?

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Maturecheese
    Maturecheese Member Posts: 130
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    Some good points there sticky. I take the opioids to aid sleep at night, not for pain and that quite frankly is because around 2 years ago when I had to give up drinking every night they wouldn't give me sleeping tablets. Now I'm in the ridiculous position of taking painkillers to sleep and I've pointed it out in the past so heaven knows what GP policy is these days. Luckily I have managed to keep it to 1 1/2 30mg codeine a night so not an addiction level.


    I am still getting my 3 monthly blood tests but only because I keep refusing to be put on a 6 month regime. This is because, known to my consultant, I have a drink on a Saturday night usually between 4 and 5 1/2 units and I want them keeping an eye in my liver what with 20mg of Meth a week. Actually I'm hoping I can get the Meth reduced back to the 15mg I started on if I ever get to see the consultant again.


    The fatigue is worse on days that I exercise but I haven't noticed a correlation with meth days or post meth days, it seems to be all week. I just can't help pushing it when it comes to exercise, it's in my nature but I don't know how much longer I'll be able to as it just keeps getting harder.


    Hope you are keeping well as you are one of the old school (if that's the correct term) on here along with Dreamdaisy.

  • N1gel
    N1gel Member Posts: 161
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    For what it's worth, what I find fogs the brain is the anticipation of the effort. I used to be extremely active, now just the thought of a day doing routine tasks with OA brings me to a halt.

  • Lilymary
    Lilymary Member Posts: 1,742
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    I can relate to that Nigel

  • stickywicket
    stickywicket Member Posts: 27,723
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    MatureCheese - Thank you for asking. I am, as we Yorkies say, 'fair to middling'. I was distinctly better before I banged a bare foot ón the door jamb last week and executed a beautiful hop skip and jump before landing on my dodgiest THR. However, I think I've got away with a swollen foot and beautiful purple hip so no harm done😉 DD is also good enough by our low standards.

    I'm really out of ideas for you. I think, n your situation, I'd book in to see a good physio. My gut feeling isstill that you're maybe trying to push your body too hard. It's had a long lay off and will need time to get back to running up steps at least. The meds might be a bit responsible too. Maybe just cut back a little for a pre-determined amount of time and see if things improve. If so, re-introduce the exercise(s) slowly.

    As for the nightly cocos - maybe you could do as I used to (though mine was for pain) and just keep them with a glass of milk, or water and a biscuit (I never do pills on an empty stomach), at the side of your bed to be taken if absolutely necessary. Have a bedtime routine - warm drink, spot of reading, no 'blue light' from electronic stuff and see if your brain learns that that means sleep.And try not to nod off suring the day as that will make sleeping at night harder. I think fatigue is different from sleepiness. My body can feel utterly whacked but it only needs rest not sleep.

    We are constantly learning with this disease. And then re-learning. Good luck.

    Catriona - hello and welcome 😀

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • KazandNoo
    KazandNoo Member Posts: 129
    edited 16. Aug 2020, 21:00
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    That's so true Mike,cats are expert sleepers! I find I've been nodding off in the afternoons this weekend,been overdoing it at work this week and the more my joints hurt the more tired I feel. I went down to 4 days (I have Wednesdays off now as well as Sat & Sun) to help with pacing but still it sometimes gets me! I do tend to do what Lilymary advises,I just take the cocodamol if I wake through the night in pain, I don't know what the answer is,just take it day by day and keep going!👍
  • Airwave!
    Airwave! Member Posts: 2,468
    edited 16. Aug 2020, 21:20
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    I’m surprised you need to ask and the answer must be obvious to you? Any illness can be the cause of fatigue (a generalisation) and the pain and worry of arther will be the catalyst. You are going through a cyclic action called ‘boom and bust’, doing too much at this moment and not recovering before you do it all over again. We’ve all been there. Acceptance can help us realise the extent of out illness, come to terms with it and exercise enough to stabilise our joints and be a force of good for our general health which must include patterns of sleep.

    There you are a slap on the wrist! Comes to terms with your illness, your age and what you are trying to put your body through. A Pain Clinic Course will certainly help, talk to your GP about a referral. The rest is down to you.

    its a grin, honest!

  • Lilymary
    Lilymary Member Posts: 1,742
    edited 16. Aug 2020, 23:11
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    Ah, the joys of boom and bust. It was hubby’s birthday on Thursday, so I rallied my bones and we went for a gentle stroll round the village, with a spot of light gardening the following day. Bearing in mind said stroll round the village is less than equivalent to the walk from the car to the bottom of the entire mountain I would have climbed just a few years ago, in the scheme of things it wasn’t much of an achievement, but my hip has been beating me up ever since. I am now capable of beggar all, other than ricocheting off the furniture as I hobble round the house. I never learn. Should have been resting up as I have a heavy day at work tomorrow, which means by Tuesday I’m going to be really suffering.

    As Airwave says, acceptance of our new limitations is sometimes the toughest part, but it’s essential to nursing our bodies to enable us to get as much from life as possible. Sometimes “pushing the envelope” is exactly the wrong thing to do. Great when you're a thrusting young wannabe surging forward in life, not advisable when your body has already caved in. Different strategy required. Ignore the motivational speakers, ignore the fridge magnet philosophy, listen to your body. And be kind to it.

  • Airwave!
    Airwave! Member Posts: 2,468
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    P.S. try some non-weight bearing exercise.


    its a grin, honest!

  • KazandNoo
    KazandNoo Member Posts: 129
    edited 17. Aug 2020, 13:01
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    Can I delete the above post?


    Edit - I have removed the comment. Looks like there was an error in encoding a picture upload 😔

    @Brynmor

  • KazandNoo
    KazandNoo Member Posts: 129
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    Thanks,it was a video of my cat,but I think I did something wrong somewhere!