Date: 24.07.2012
From: Mick
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Subject: Fatigue
I know that fatigue is a common,almost universal complaint made by people with RA,but my GP,Rummy and specialist nurse don't seem to be able to help.I sleep well at night,on average at least 8 hours but if I get up at say 7.30 in the morning,I am almost always totally knackered by midday and have to sleep again,so that despite a good nights sleep plus up to 6 hours during the day,I'm still tired all the time. For me it is the single most incapacitating thing about having RA in that it stops me from interacting with life in general.The only advice I have found on the subject of fatigue suggests things like a balanced diet,pacing ones self and taking regular exercise. I do all the above but nothing seems to work. I,ve been like this for around 3 years so any advice would be greatly appreciated.
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Date: 24.07.2012
From: Kim
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Subject: Re: Fatigue
Hi Mick
I know exactly what you mean. I have had ra for nearly ten years and my fatigue just seems to get worse and worse to the point of just going upstairs sometime I have to have a lie down. I have been to my gp recently who has tested me for everything under the sun but has come to the conclusion it is just a combination of the ra and the medication I take that is making me feel so exhausted. I have two yooung children who are now off school for 6 weeks and I feel so guilty as cant take them out much when my husband is not here as just so exhausted. I have just started to take a multi vitamin and mineral supplement to see if that helps but cant say I have noticed any difference yet. I guess that all we can do is listen to our bodies and rest when we feel really tired (easier said than done!) My gp did suggest taking an anti depressant as although she does not think I am depressed (and neither do I) it may help with the feeling of fatigue. I have declined to do this at the moment as I take so many other tablets I really cant face anymore at the moment.
I hope you manage to find something soon that can help you, if you do pleae let me know!
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Date: 24.07.2012
From: davina
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Subject: Re: Fatigue
hi mick i know the feeling like many others here its a stain to do anything and even just house chores become difficult. like kim said we just need to listen to our bodys and rest hopefully not at work so you get sacked lol. just rest where you can and even if you go to be at 7pm do it as thats what your body needs x
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Date: 24.07.2012
From: Sciqueen
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Subject: Re: Fatigue
Hi I was exactly how Kim has described her fatigue and complained each time to gp & rheumy consultant and told the same thing - it's the combination ra and the meds we take. Neither did anti d's help, I am on a low dose. 3 wks ago I started cimzia and that has made such a difference. I now feel energised and the fatigue is not a problem. I rarely sleep during the day now, 20-40 mins max. If I sleep during the day I cannot sleep at nite. I think this reduction in fatigue must be a common benefit to all anti tnf? Perhaps other could verify this??? Good luck with managing your fatigue pacing is still a good idea, although in reality hard to do.
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Date: 24.07.2012
From: Chris
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Subject: Re: Fatigue
I hear you Mick, there is a weakness in the muscles that seems to go with it for me.
I'd agree with it being the single most debilitating thing.
I know my immune system has switched on when i get it. @Sciqueen, i can confirm that the latest biologic i took (uztekinumab) did get rid of the fatigue. Unfortunately for me it wasn't strong enough, and i'd oscillate between the 2 states over a 12 week period. Totally agree about the pacing, if only i could listen to my body more....
It is hard to do, spent 30 years of my life trying to listen to my body less! However even small changes in pacing usually pay great dividends.
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Date: 25.07.2012
From: Mick
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Subject: Re: Fatigue
Thankyou Kim,Divina,Sciqueen and Chris for your replies. If nothing else I derive a great deal of support from knowing that I'm not alone in my daily battle with fatigue.I'm pretty sure that the meds contribute to the problem,especially Methotrexate.I have nothing but praise for the way the NHS has looked after me since I was diagnosed 4 years ago,but I feel the focus of research is centered on the physical,ie skeletal problems involved with RA,and little time is spent addressing the problem of fatigue.When it comes to pain and mobility,I have good days and bad days,but the fatigue is ever-present and I,m sure that without it I could return to some kind of employment....RA is bad enough but living on my £ 90 pw ESA payment is a prospect that I do nt relish.I do pace myself,but today for instance I slept for 5 hours,and that,s on top of a full 8 hours sleep last night,and that's not the way I want to spend my life!
Thanks Sciqween for the tip about cimzia,I'll look into it.
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Date: 25.07.2012
From: Colin W
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Subject: Re: Fatigue
Mick , when I had RA first , long time ago used to suffer pretty bad , could not read or watch telly without going sleep , problem seemed to be the quality of sleep & not the amount , main thing I notice was that I never had a dream so seem to not have the right kind of sleep also suffered mid depression at same time & taking something for it helped both , at time used St.John's Wort but had to change it because its intereaction with Mtx , for fibromyalgia they do something similar & give people low does amitriptyline which does similar thing idealy you want the RA under control & waiting myself to start another anti-tnf drug without all the side effects
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Date: 26.07.2012
From: hawker
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Subject: Re: Fatigue
Two things: lack of sleep if the pain is bad at night, but that doesn't seem to be the case.
Also, anaemia. I complained that I wanted to sleep all the time and it was explained as being due to my Hb being so low. It improved dramatically when I went on to anti-TNF, although it has taken another two years for the anaemia to completely disappear - I'm hoping it stays away of course!
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Date: 26.07.2012
From: MICK
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Subject: Re: Fatigue
Hi Hawker,thanks for the rply. I,
've had tests for anaemia and also for thyroid function. Thyrriod was found to be low so put onto Levothyroxine but after 2 years I'm still fatigued so it was nt that. Anaemia tests showed no problems. Perhaps fatigue is just a symptom of RA.
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Date: 27.07.2012
From: Kim
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Subject: Re: Fatigue
I think Colin is right about not getting quality sleep as I never seem to go into a proper deep sleep as cannot get comfy at night. Im going to ask if I can take some kind of sleeping tablet that will just knock me out and see if that helps!If we could only get some decent sleep it would give us the energy to be able to deal with the daily joint pain and stiffness!
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