Fatigue what's it about: I've had a complete no-no of a... - NRAS

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Fatigue what's it about

cathie profile image
15 Replies

I've had a complete no-no of a day due to fatigue. Does anyone know what it signifies? Apart from having to rest, I'd like to know whether it shows that our meds are busy paving the way for a miraculous recovery of sonething

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cathie profile image
cathie
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15 Replies
Philip profile image
Philip

miraculous recovery , God I wish lol, it's not funny and it sometimes makes us cry, personally I think it is the RA RAther than the meds.

With me it comes and goes but doesn't go fast enough for me lol.

I hope you regain some strength sooooooooon, lie back put ya feet up and try to relax, not always easy I know lol, no harm in trying though lol.

Philip

I think it's them damn tnfs .... (or are they anti-tnfs?) Anyway, I think there's a chemical basis for the fatigue we get i.e. it's symptomatic of the disease. And some meds do cause tiredness of course, as well. I don't suppose any of us really feel our meds are working if fatigue is still a big problem though - I don't know about you but persistent or severe fatigue seems to me to be one of the worst, maybe THE worst thing this disease throws at us. I'd put up with a day or two of 'being tired' due to Mtx, but crushing fatigue day in, day out .... nah! I'd want a re-think if that were the case.

skinnycappuccino profile image
skinnycappuccino

Hello Cathie! Oh I sympathize!! Fatigue is just so extremely frustrating and annoying, isn't it!

I think in some way it does show the body is busy doing other stuff so it kind of slows down less important things like concentration, proper breathing, blood pressure etc. (clearly those bodies have got their priorities wrong!!). When I was withdrawing from my steroids I experienced severe fatigue and that was because the adrenal glands were trying to adjust to having to produce their own steroids again so I figured that this was my body's priority and it needed all available strength for that.

Obviously, if the body is busy mistakenly attacking its own joints then that also takes strength and can lead to fatigue. And, as postle says, some meds cause fatigue (probably also because they're hard work for the body). I had terrible fatigue on MTX, it' better with the Leflunomide now.

I read somewhere that with biologics, the first thng that people notice is often that the fatigue goes away before the joints get better. I wish!! My biologic works really well on my joints but I still experience fatigue, I'll have to pay attention if it gets worse or better around the time of my injections!

I hope you'll feel better soon and that your meds will kick in!!

Love,

Christine xx

Scottishlad profile image
Scottishlad

I am afraid fatigue is part of the disease. I have more energy when the RA is under control.

Cecil

cathie profile image
cathie

I've had RA for about 14 years now. And I'd distinguish between normal and extreme fatigue and I wonder whether that's connected to meds. I used to have days on mtx when I could barely function. Week 4 enbrel I'm having similar, but I can't figure out a pattern yet.

Jora profile image
Jora

I wish I knew the answer, as I too had a complete wipe out yesterday. I've wondered if it follows a spell of over- doing it (I'd had a long journey the day before and although I wasn't driving the train, I do find travelling very tiring). Or is it to do with diet. Or is it depression. But I like your theory best. Next time I have wipe out, I'll try to imagine the healing process. I hope today is better for you.

cathie profile image
cathie in reply toJora

It was more a question rather than a theory. But I think there are different kinds of fatigue. The one I had yesterday was the wipeout variety unconnected with overdoing anything or stress. Perhaps seeing fatigue as part of healing is a positive way of dealing with the problem

pineapple_head profile image
pineapple_head

I suffer with fatigue and my joints are well controlled, therefore my RA should be under control. I'm being investigated at present for fibromyalgia by a neurologist in collaboration with my rheumy because of the pain, fatigue and restless legs that I'm having. I think that fibromyalgia do co-exist with RA.

sparker profile image
sparker

Hi cathie

I blame the meds I'm afraid. I was completley exhausted most of the time before I stopped and was in bed most evenings at 7 and tired for most of the day, at its worst not having the energy to get up at all. I am now awake at 7 and well able to stay up past 12! Have to say driving my family a bit mad with my energy, but I honestly feel like I have been asleep for 5 years. Not had my consultants appointment (June) so don't know what my bloods are like so I am just enjoying the new me and going with the flow for however long it lasts.

cathie profile image
cathie in reply tosparker

It's great to have this energy I'm sure your family are delighted! I hope you're ok off the meds

With me it's a mix of both. I have wipe out days and even weeks with horrible sore skin if I've traveled anywhere far and had to work at the other end. These I feel are part of my RD or broad spread of autoimmunity including Hypothyroidism, Raynaud's and Sjogren's. I can tell what my ESR is going to be like on the strength of them - presently 62. I also have wipe out days that come after I've injected my MTX - where I feel deeply chilled and very unwell and have to hide in bed for a couple of days. There's no winning in this autoimmume business it seems re drugs versus disease activity. It seems to me that the more autoimmune symptoms a person has the more likely the fatigue is to be a problem because my RD is quite quiet most of the time and yet still I feel unwell and exhausted a lot of the time too.

cathie profile image
cathie

I think the autoimmune bit is the elephant in the room isn't it. A great big question mark. If its so individual, then our fatigue can be down to all sorts! I feel as though I need to wake up, but haven't yet.

Yes - with me it's my eyes and skin problems that make it worse - they are so dry and tight all the time I'm sure it adds to the general feeling of exhaustion. I it's quite inevitable that if your body is fighting inflammation all the time then it has to work twice as hard as most well people's. Fatigue is the big common denominator shared by all autoimmune diseases.

Fanacapan9 profile image
Fanacapan9

Trying to reduce prednisolone, been on them for 5/ years, and swear there killing me, I have ra and or also PMR, any one any suggestions please. A x

cathie profile image
cathie

I think you need medical advice to reduce pred. Its tricky. I've been on it for 4-5 months and have tapered off it successfully, but it wasnt easy. If you've been on it for years you definitely need medical support otherwise you can get quite ill. I was given advice on here - to reduce it very slowly, as you get near the end of the reduction, to try reducing one day and the previous amount the next. But medical supervision would be indispensable. Good luck.

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