Well controlled RA and fatigue?

[Dobcross1]

Hi I'm looking for advice on why I'm still getting fatigue when my RA is a lot better and nearly controlled? Is this normal? I don't know if I'm going mad, but it feels like as the disease has got better the fatigue has got much much worse! I haven't increased my dose of MXT over the last 6 months or changed anything so just don't understand it.

Theres no pattern - every week it's different days, but at least 3 days out of each week, mostly 4. Some days I wake up exhausted, others I'm ok early morning then by lunchtime I want to lie down on the floor! It's like trying to wade through cement and so debilitating. The only thing I can think of, is that as the RA has got better I've widened my food choices and also now drink 2 glasses of wine a week (on separate days). Has any one else experienced this? I'm not due to see Rheumatology till end of November and am due to increase MXT this week so that's why I'm concerned. Any experiences/advice welcome thanks

[weymouth321]

Hi , am 62 , diagnosed ra 10 years ago , like you , the fatigue is worse , spend majority of day lead on sofa - so frustrating - rang NRAS helpline, told see GP, who’s helped fast tracked ra appointment ; taken few weeks , but 6th Sept with Rheumy. ( also hope do ultrasound as hand knuckles twinging and numb tops of feet )

[Dobcross1 in reply to weymouth321]

That's a thought, I might ask the GP if he's got any ideas.. thanks

[Hidden]

Oh yes this has been me for the last 6 months fatigue is not the word but no pain but the longer the fatigue went on more problems with my joints. I was lucky to get 1 good day a week (relatively) I know my disease is active with just the fatigue as I can

see physical changes to my joints . Methotrexate is just not working for me I’m now going to start methotrexate injections as I failed the application for biological meds. Have to do this first before reapplying 🙄don’t hold out much hope this will work 😞

[Dobcross1 in reply to Hidden]

I'm on the injections. Hope they will help you. I really don't understand how the process for biologics works because first I was told you have to fail on 2 dmards then I was told the RA has to be severe to qualify - I give up!

[Hidden in reply to Dobcross1]

Same here I’m allergic to hydroxycloraquine and have had no quality of life I’m down to 1 1/2 hours work a day (they want me to leave) missed so many family celebrations and I can hardly manage a slow walk with the dog some days I can’t. Exercise was something I love I just can’t do it and I’ve put on a stone in 6 weeks. Pip was rejected now appealing don’t know the answer to all of this.

[precious123]

I am the same way. I understand your frustration. Increasing my methotrexate did not help with that part. I was not taking naps but back to taking them again. I believe it’s just the disease. Even tho my number are getting better on the methotrexate the fatigue has not got that much better. And some days it’s just worse than others. Sorry I couldn’t be of any help. If you do find out from your Rheumatologist let me know please.

Hugs

Peggy

[Dobcross1 in reply to precious123]

Thanks, it seems like we're all in the same boat. I'm definitely going to ask re why MXT not helping fatigue. Thanks.

[helixhelix]

I personally think it's very early days for you. You’re less than a year from diagnosis? And only 6 months or so with controlled disease?

So your body has taken a battering from having active RA, and you can’t really expect it to bounce straight back. You’ve probably been doing less than you used to, so have lost fitness, muscle tone, and lung capacity?

For me it was a longer slower road to get back to (near) normal. It took a year of so to stabilise on the drugs, and then reach remission. And then it probably took another year or so to get my fitness back. Trying to do any exercise when you just want to keel over and sleep is hard, but it really does make a difference. Well it did for me!

I don’t have the energy or stamina I did pre-RA (but I am also older too!). However as long as I’m not daft about it I can do most things now. And the MTX only makes me feel a bit tired the morning after, but that’s all.

Eat well, exercise and sleep properly and hopefully it will improve in small steps.

[Dobcross1 in reply to helixhelix]

Thank you everything you've said makes perfect sense and has made me think. Yes I had to give up the exercise I loved (only yoga and pilates, not spinning or gym or anything too active🤣) and I'm just starting very gentle yoga again at home. You've given me reassurance and hope, so again, thank you.

[hawker955]

Hello Dob, You say well-controlled but whenever someone mentions fatigue I recall my severe anaemia during the first weeks. On starting biological therapy my anaemia improved 99% within 2-3 weeks, so very quickly. I rarely suffer such fatigue now. But generally I think that the condition still takes a lot out of us and fatigue just catches up with us eventually. How else does the RA affect your life? Sleeping pattern? ., Your General activity level? Methotrexate is a potent drug originally for leukaemia so it can hit the bone marrow and cause fatigue I think. Have you checked with your rheumatologist or the rheumatology nurse? Don't be fobbed off by just being told of course you have a long-standing ullness. Ask them how specifically it is making you tired? Something probably shows on your haematology blood test I would expect.

HTH?

[Dobcross1 in reply to hawker955]

I've noticed that one thing people on biologics say, is that it improved fatigue symptoms for them... maybe that's not such a good function of MXT or it takes longer. It's now the fatigue which stops me doing things rather than the RA. My sleep quality at night is up and down at best. It's not that I want to sleep during the day - it's more a bone tiredness where I need to sit/lie down all the time. My bloods in regard to CRP are fine but were never that high. I'm going for my usual blood test next week and will definitely ask re the fatigue and anemia etc

Thanks for your reply its really helpful.

[helixhelix in reply to Dobcross1]

Ask for anaemia, B12 and Vit D....if any of those are a bit off it won’t help.

[Dobcross1 in reply to helixhelix]

Thank you I will do.

[Ruth12345]

Hi. I'm 2.5 yrs diagnosed and on a cocktail of pain relief and dmards. It took about 18 months to get pain and inflamation down and 2yrs for a level of fatigue that I can manage. I'm not as I was but now feel I have my legs back and live with wings that have been clipped rather than having no legs or wings I'm just saying this as it's been a long road to get to a state I can live with and plan with the realisation I may have to cancel. I have struggled as many others have with how long this all takes but many of us get there. I know there are others that have a longer rocky road than me. Having my B12 and vit D tested after 2 yrs helped and had 3 month's of tablets which has lessened the fatigue. I say all this to encourage you that things will improve. I wish you all the best.

[Dobcross1 in reply to Ruth12345]

Thank you. As with HH's reply, yours is very encouraging and gives me hope. I'm a very impatient person so am probably trying to run before I can walk! I need to give it more time and will have B12 and vit D tested and advised. Thanks again.

[Ruth12345 in reply to Dobcross1]

I completely get it. I look back and realise how much aggravation I gave my rheumy once I started to get some fight back. Don't underestimate the fact that it is long time to get meds that suit and it's not nice and your reaction is so very normal and understanding. My rheumy got the measure of me and said a number of things that I didn't always like, but all when reflecting have been helpfull. One was that my impatience and drive was a good thing, he said it would help me reach my potential with RD as some people become passive thus becoming less able and reluant on others. Those are a mix of my words softening how quite harsh he was, if you see what I mean.

[Dobcross1 in reply to Ruth12345]

Yes I completely agree, our impatience to get better asap and drive to push for that does at least have a positive side! Thanks again for your (and your Rheumy's!) wise words! I😁

[Biofreak]

I am also suffering great fatigue as well even though I am on a biologic and consider my RA is quite controlled at present. HH is right. I asked the rheumatology nurse to check my B12 level last week ( waiting for the results). My husband has recently found out his B12 level is very low and he's been ill and exhausted for months. Do you take omeprazole as apparently they can impede B12 absorption from our food intake with long term use. This is the cause in my husband's case as he has been taking it for years because of gastric reflux.

[Dobcross1 in reply to Biofreak]

Thanks - it seems so many of us are suffering with the dreaded fatigue. I'm not on omeprazole (just the odd Ranitidine) but am going to ask to get Vit D, B12 tested as HH suggested. I've also increased my MXT today so we'll see if that helps. Many thanks for your reply and I hope you feel better soon.

[Biofreak in reply to Dobcross1]

Thanks you too x

[Nocciola]

Hi Dobcross1, you say you have widened your food choices and added 2 glasses of wine per week. Could it be that? Have you tried going back to how you were eating and drinking before, when you felt better, to see if that makes a difference? When I was at a retreat where I was eating dessert every day and drank 2 glasses of champagne in one week, it made me feel very sick and exhausted, and my crp went from 0.9 to 3.1. When I returned to my normal diet, my crp returned to less than 1.

[Dobcross1]

Hi thanks for your reply. Just this week I'm trying to drink more water, cut down on certain foods and cut out the wine completely so hopefully that will help. It's great to know sticking to what suits you really helped you and it just goes to show how important food (and drink!) choices are. Thanks for letting me know your experience as it's really spurred me on.