Hi all, is there anyone with a similar experience as mine that can advise or help in anyway please?
I am 73 year old woman with previous good health, diagnosed 17 months ago with acute RA.
I have been on Prednisolone (high dosage), now on 17 mgs, 5 infusions of steroids. I inject 17.5 ngs of Methotrexate. The treatment has not worked so I am soon to inject Imraldi which I hope will help.
My exhaustion is increasing daily, at its worst the day after injecting Methatrexate. I literally can't stand for long.
I am very, very fortunate to not have bad pain, more of a discomfort and I am grateful for that I promise, especially after reading everyone elses story.
Does this sound similar to anyone elses experience please?
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Unfortunately yes, my biggest problems were brain fog and fatigue, more recently my joints have catching up in terms of heat and pain.
I found keeping well hydrated and eating carbs helped with MTX, but also I accepted that the day after injecting, was a being at home day often doing little. I tended to prepare food the day before and tried to eat well, watch some TV.
Have you heard of the spoon theory ? It might help you manage your fatigue. Each spoon being a unit of energy, so for me getting up and making breakfast is 1 spoon, showering another , I generally have around 8/9 spoons per day without exhausting myself. If you Google spoon theory and rheumatoid arthritis you will find lots of information. Hope this helps.
The fatigue is one of the most difficult things to cope with. There is a good booklet produced by NRAS (available I think to download from the website too) on managing fatigue.
Hold on to the idea that it will improve once the inflammation starts to settle down. It doesn't go away, though, so you need techniques for dealing with it.
Especially after intermittent treatment regimes, like methotrexate once a week, you need to set aside a couple of days after the therapy for resting. On other days plan ahead, to tart with, probably only one activity, building up to a couple if you find that's possible as you improve.
And I would echo the suggestion of reading, and using the 'spoons' idea and explaining it to other people.
And never say 'Yes' to anything....always say you will have to see if it's manageable with just the effort of daily living and give it some thought before agreeing.
Hi, I too suffer exhaustion, more than pain, and recommend trying to remember to pace yourself. For instance, if you can’t stand for too long, break activities like walking/ shopping etc, to include sitting breaks for a short while to save your energy. Also you can try using lighter things around the house to help so you aren’t getting tired, like not lifting a heavy kettle but filling it using a smaller plastic jug instead. I find doing little bits of an activity at a time are enough, broken up by a rest, a cup of tea or a half hour read of a book - you can always pick up the task you were doing again a bit later on! Also learning to say ‘no’ sometimes to other people’s requests can be helpful, (something I’m not good at at all!) Best wishes. Hope your treatment starts working soon.
Fatigue is my enemy it is so bad there are days I don’t leave the house. It really is the hidden symptom of RA trying to apply for pip but they just don’t get it you can’t explain how debilitated you are unless you experience it. I only work one and a half hours a day I don’t earn much be I need the money but I’m exhausted afterwards. I know how you feel you might be one of the lucky ones when the meds start working things get better 🤞🏻
I am nearly 77 and developed RA at 73 after abt 12 years of PMR, began on hi dose pred 40mg tapered v slowly to 7.5 in 2014 ish. RA diagnosed 2015 and they now say it was prob there for some time b4 that. Started MTX autumn 2015 but had to stop, then sulfasalazine but had to reduce to 50%. Started annual infusions of Truxima July 2018 and 2nd round began today OK. Fatigue and brain fog were big probs along with pains in hands n feet. Slow start mornings, gentle stretching and slow swimming all helped, as does automatic car. Hi strength B12 helped brain fog really well. Pacing is essential...e.g small shop. after a.m swim, then cuppa, sit down and light lunch, p.m siesta and good diet . Hope this helps. Where are you? BT6 by any chance; your photo looks so familiar!. Margaret A ??. wish you better. xx
Methotrexate made fatigue and brain fog much worse for me. I’d let rheumatology know if it carries on. 17 months seems a long time. Hope humira works well for you instead x
Fatigue at that level is terrible. I only have one suggestion because everyone has covered the other things. It's worth asking your GP to do a blood test to check your vitamin B12 levels. I am borderline anaemic and if my B12 levels drop which happens sometimes, I can barely stand because I'm so exhausted. B12 levels are often missed when we have bloods taken.
In my case exhaustion is probably the main symptom to cope with as my pain and stiffness is now mostly under control. The ‘spoon’ idea as mentioned here is a good one though I find it’s tempting when you feel ok to try and squeeze another spoonful in! The problem is that the fatigue tends to catch up with you unexpectedly and suddenly. I also suffer with sweating when I get at all hot. This is reported by many people with RA but doesn’t seem to feature much in medical advice.
I do hope you feel better soon. I know it’s easier to say ‘rest’ than do so but it is the only way in the end!
I am exhausted nearly all the time and as soon as I start to do something, I want to fall asleep. It is so frustrating. I also suffer with sweating at the slightest little thing I do and am always mopping myself up with a towel.
I had bouts of fatigue while on methotrexate and I got pretty sick on it missing days of work. I am also your age. I’ve been taken off methotrexate and to be re-evaluated in a month. All of my sick symptoms have gone since I’m off the methotrexate but I’ve also been on a dairy free caffeine free diet and I added no processed foods to the list as well. I was to have an endoscopy on Friday but yesterday they cancelled it because there are no longer any symptoms. I still have some pain and my legs but they both have peripheral neuropathy so I’m not pain free. I think the meds are causing your problem and I hope you speak with your doctor about it as they may have ideas to help. Wishing you good things.
I'm surprised that the prednisone isn't taking care of the exhaustion. For 8 months I have been taking pred. (from 50 to now 18 mgs) and have to make myself ease up on activities. Also, I take MTX and sulfasalazine since diagnosis 7 months and 5 months respectively, ago - for RA. If pred. isn't taking care of the fatigue, my personal guess is vitamin B12 deficiency. Of course, I'm no expert so it's a guess for me going by the posts from the people with more experience than I.
Additionally, I am doing a pred. taper down and a MTX increasing dosage since the RA is not well controlled and one of my doctors thinks I have PMR as well as RA.
It is difficult to target what I am suffering from, in point of side effects and trouble with the disease because it changes every day it seems. Sorry I can't be more helpful.
I am also 72 and before this had no physical trouble and was very active.
I would like to thank everyone in this fabulous group that have taken the time to try to help me.
I find this site so comforting and informative.
It is incredible how differently we are all affected by this rotten disease.
Will keep you updated as I start injecting Imraldi in a few weeks. I have been told that if this works (fingers crossed - just remembered I can do this anymore) I may be able to reduce steroids which 'should' help with fatigue.
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