Had rheumatoid arthritis for 30 years .
Am now 75 and finding it is overpowering me. Am on lefluomide and Methotrexate but it has become a bit much . Pacing helps a bit but each day is an unknown till I’ve been up for a couple of hours and then I’m still tired.Blood pressure ok inflammatory markers ok.
Just fed up..
I know exactly how you feel with the RA and fatigue. I’ve had it for 20 years and on methotrexate and Cimzia. I’m fine for days at a time, then fatigue hits me, but I don’t realise it’s got me until after I’ve been up for a few hours. For example on Friday my daughter drove me to my brother and sister in law’s joint 60th birthday party, in a restaurant in Nottingham city centre, about 90 minutes from home.
We spent the evening chatting with family and friends, and drove home. I didn’t wake up until about 1pm on Saturday afternoon, then spent the afternoon on the sofa drifting in and out of sleep, before going back to bed at about 8.30 for another 12 hours sleep. Today, Sunday I’m still fatigued and fed up of it. I find it horrifying what one evening out of 5 1/2 hours including travel can knock me out for a whole weekend!
I am like that too, beginning to wonder if it's old age, I am 75
You are definitely NOT allowed to have 'old age' at 75! Take it from me - I'm older.
Old age is not a diagnosis and if you're suffering from excessive fatigue it's going to be from the usual suspects that you had when you were 50 or earlier. Inflammation is a frequent culprit - even if your inflammatory markers are normal and the lack of rise in inflammatory markers is something that also happens as you get older. What would have caused,for example, a rise in temperature or your blood markers like CRP, no longer does.
But, I'm afraid, there seems little we can do about the fatigue. Accept that you have to pace yourself. I have a rule, frequently broken, of not doing more than two things a day (it used to be three) but when I stick to it, it helps. But life has to be coped with and sometimes you just do more and then crash out.
I had a lovely weekend walking in the sunshine, later today I will know I walked too far....
I take it you haven’t any vitamin D deficiency as that can cause a lot of fatigue. Also, are your iron levels as they should be?
I’m on calcium and vitamin D tablets and my iron was ok at my last blood test.
Do you know what your ferritin is? Mine was 12, under 10 according to the NHS is anaemic as they aren’t keen to do infusions but the upper level is 300, so you can see how low it actually was although I was still in the ‘normal’ category. I felt absolutely exhausted all the time. I eventually went to see a specialist privately and had an infusion and now I’m so much better.
See if your GP will check your ferritin and thyroid, it’s a starting point.
I’ve just looked at my December blood results and there’s no mention of my ferritin level is, but my Serum transferrin level is 3.38 g/L [1.73 - 3.6],Serum TIBC is 76.4 umol/L and my Percentage iron saturation 54.5 %.
I don’t know if that makes any sense to you.
I don’t know to be honest, I only know they did ‘ferritin’. My rheumatologist did it for me as I was always telling her I had awful fatigue. She said my inflammation levels were fine, so I shouldn’t have felt that bad, so she did thyroid, vitamin d and ferritin. Turns out my thyroid was also underactive. But I suppose it’s different for each one of us. All I know is I felt so much better after my infusion. Only problem now is I’m having problems with my methotrexate, and I’m sure that’s because my iron is now so high (about 200 over the normal range) my liver is having problems clearing it and the methotrexate at the same time. So one gets better the other worse, typical eh - swings and roundabouts 😩
That’s good. I think then that our energy levels can get easily depleted just by the fact we have auto immune conditions, I have lots of energy for some of the time but not all.
I am like it too, can have a good night’s sleep but get up with as little energy as when I crawled into bed the night before sometimes it’s like wadeing through treacle……..
I’m 70 had RA 40yrs uncontrolled for25 of them. Been on Cimzia with methotrexate for 15 yrs but also developed OA and spinal cord stenosis in last 20 yrs. Yep I get totally shattered and suffer with fatigue, even had my 70th birthday party between the hours of 4-7pm, said it was so all the grandkids could come , the youngest aged 2 but everyone knew it was that I’d need to been in bed at 9😂. It was a lovely party hadn’t had one since I was 10, my 4 daughters arranged it all. Pacing made a little difference but I found I was missing out on so much I wanted to do. I now have learnt to take every day as it comes, I know I’ll feel tired after doing too much one day so I chill out as much as I can. I personally decided life’s too short to sit and watch it pass by. I’m still helping out looking after the all the grandkids all 8 of them at various times. Some during the week, some weekends and some holidays, I find it actually keeps me happy and that helps me cope, they make me laugh and yes occasionally I feel a bit sorry for my self as pain is not a friend to any of us. I’ve even taken up knitting again as my granddaughter said ‘mamma can you make me a cardigan’ it’s nearly finished it’s just taken me a long time to do it.
I think our age creeps up on us and we get tired, our muscles aren’t what they used to be but life’s to short to waste, just work out what works for you and if you have some bad days that’s life, just remember to live your life. I’m lucky I’ve found what keeps me going, hope you all do to. Please all have the best day you can, spring is here and the daffodils are out.
🙏 🙏
Hi Cal, NRAS have an informative booklet called "Fatigue Matters" which you can download for free. It explains fatigue and how to manage it.nras.org.uk/product/fatigue...
I think we all know how debilitating fatigue can be, so anything that may help is worth a look at.
Give it ago, you have nothing to lose. I hope you find s way to get on top of it.
🙏
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