Will disease control and medication help fatigue?

[krillemy]

I am almost diagnosed with Seronegative RA after 3 years of symptoms and many doctors and hospitals. I have edema around my joints, pain in hands and feet, and stiffness, but the most debilitating is the lack of energy and the fatique that comes after doing too much (brain or body). Not that I can do much at all. I only take ibuprofen for the pain. What can I expect when starting on other meds? Will it only help on the pain, or also the general feeling of being ill and all? Thanks for any answer

[Madmusiclover]

Hi! Disclaimer: we are all different. Speaking for myself I have many more good days than fatigue days on my drugs. I also have so-so days, neither brilliant nor sparkling. Before my drugs I spent weeks and months fatigued and depressed. So yes for me things improved. I’ve also had one or two periods of ‘remission’ when I can almost forget I have RA. Glad you have a diagnosis, and hope it doesn’t take too long to find effective drugs for you.

[Hidden]

I was always told the fatigue is part of active disease. Really my worst symptom. Had a spell of 2years where life just passed me by. Started a new drug in September that has made a difference but Now have fibromyalgia which causes fatigue. I am in a better place.

The right drugs make a difference. You could ask for a steroid injection in the mean time to help . If your suffering look for help from your team and Gp.

This is a great place for help someone will always be happy to help . Keep in touch x

[krillemy in reply to Hidden]

Thanks. I was on 15 mg prednisolon for 1½ years as they thought it was polymyalgia. I stopped ½ a year ago to do testinging. It was a great relief at the time, but when I tried now for 5 days there was no real effect, so I stopped. I kind of lived on the hope that I "could always go back to pred." so now I don´t know what to expect. Sounds though like it should become better

[Hidden in reply to krillemy]

The difficult part is finding the right drug or combination as most drugs take 3 months at least to work.. patience is what we learn most. You will get there eventually x

[medway-lady in reply to krillemy]

Be careful with Pred. it is addictive and can be difficult to come off of. RA meds are a much better way forward.

[oldtimer]

I'm afraid it varies. I've had Rheumatoid Disease for over thirty years and some of the time I have been 'normal' (that is overactive and over busy) and other times completely wiped out. I've learned never to promise to do anything! I will do it if I can. If I need to be tactful I say I will have to look at my diary. Everyone says 'Pace yourself' which I do try to do, never putting more than three things on one day, but aiming for two.

The main thing is acceptance, the most difficult thing, that you will not be able to work at your previous pace.

[krillemy in reply to oldtimer]

Yes, normal if busy I was like that... Every where the is a talk about exercise, but I struggle to work the dog and keep up with the family activities.. A week in a rehabilitation hospital (left we completely ill for 2 weeks, and I did not do much real exercise. What is your experience?

[Boxerlady]

Things are good for me atm - just a bit of morning stiffness, the odd twinge and no real fatigue although I do make sure that I have a quiet day after a particularly busy one just in case I need to rest.

[krillemy in reply to Boxerlady]

Rest or exercise - it does leave me confused - but I do need a lot of rest

[Boxerlady in reply to krillemy]

I think that the main thing is to listen to your body. In the early days I was very cautious, took things slowly and factored in lots of rest. As the medication started to kick in, I gradually started doing more but as I said, I still factor in a rest day if I want to schedule a longer work day. I started swimming and Aqua Fit about 6 months into diagnosis (Autumn 2019) but obviously that stopped with lockdown. Since things have opened up, I've started again and interestingly I'm finding it a little easier which I think is because my medication is working better now.

[Hidden in reply to krillemy]

This is a difficult one rest or exercise…. I use to be really fit but I can only walk the dog once a day and only in the morning by the the evening I’m exhausted from doing nothing some days. Exercise now is gentle I will never get back to my classes . When I am bad bad exercise is a big fat NO!! I just can’t and when I push there are repercussions . I’ve been told to exercise little three times a day . This doesn’t work for me .

[krillemy in reply to Hidden]

Sounds like me, including the dog. Just went to help my son oldest son (23), with some dishes at his place, as he is down with a cold or covid. One hour standing doing that and the 300 m bike ride there, and I am beat, swollen and feet and legs in pain - so that was the exercise of the day. I also used to bike everywhere in the city, being 53 years, and quite fit. So I do not understand this "training" if one can´t do it without repercussions as you say. I will ask the Rheumatologist offcause

[Chockyuk]

After reading others experiences on here, I think I’ve been very lucky. I was diagnosed 3 years ago with sero positive RA, funnily enough, before my joint pain and swelling came along, fatigue was my first symptom. One day at work I just put my head down on the desk and dozed off, I thought what’s wrong with my, Dr thought it was thyroid etc 🤷‍♀️As I say I’ve been lucky, 3 years only on 10mg of Methotrexate, only one real flare when my foot swelled my Consultant added in Hydroxychloraquine, which was great for a bit, but I had to stop due to severe stomach pains.

But a few weeks ago, I started getting extreme fatigue again, and on Tuesday last week I woke to joint pain in my knees and hips, I could hardly get out of bed, then finger swelling followed. Saturday I could hardly get off the sofa, I felt completely exhausted. Anyway, had bloods done yesterday and sure enough, ESR and CRP very high again, so back to a jab in my bum on Friday and upping the Methotrexate (which I hope will be ok, as it usually raises my ALT) 😖

But fatigue, it’s always a first indicator for he all is not well.

I hope you get yours sorted, reading posts from other forum members who have had this disease for a lot longer than me, it seems it can take a while to get the drug combination right.

But until then, I nearly always say yes to seeing friends and events, but if I have to cancel late minute due to fatigue, they have all known me long enough to understand. How I wish it wasn’t so, but I’ve come to accept that rest is a must, although, being out and taking your mind off it is also a tonic.

Take care

💐

[krillemy in reply to Chockyuk]

Yes - makes sense. More difficult though if I want to get back to work?

[Chockyuk in reply to krillemy]

Yes, true, working when you are extremely fatigued is so difficult, especially when you get people saying ‘oh you look really well’.

I’ve explained that more than once to my GP and Consultant, I really push them to get my meds right, as I’m separated from my husband, I just have to work as I have no other option, bills, mortgage.

Despite my advancing years, needs must, although if I could take early retirement I would be out like a shot. Working full time during these past 3 years since I’ve been diagnosed has almost killed me, it’s very difficult 😔

[krillemy]

Do people manage to keep a job in general? Even part time seems far away

[Madmusiclover in reply to krillemy]

I was fortunate and went part time then retired on a small works pension. I was also able to work from home a lot. Now I have an effective drug I don’t think I could work more than 3 alternate days a week. Flares still happen, and most mornings don’t happen at all.

[Mmrr]

Fatigue was and has been one of the major issues with my RD. I'm now on Toficitinib and Leflunomide, the disease being better controlled than ever before, and ....the fatigue has at last lessened.I still need to pace myself, make sure I get enough rest / sleep, but a great improvement.

[krillemy in reply to Mmrr]

So good to hear! When I was young I worked on the first clinical trials with biologics - anti TFN-alfa - Now needing the same drugs is really something

[Mmrr in reply to krillemy]

Goodness, that must be a lot to get your head around ? Working with and now needing the drugs ?

[krillemy in reply to Mmrr]

Well it was 25 years ago I did have scleritis when very young, and was told I was predisposed to RA. I look forward to treatment.

[Feank]

@like

[Feank]

Since I've stopped methotrexate my fatigue has decreased by the bucketloads! I'm no longer fuzzy muddled in a fog world.More alert and with it!! Some of these drugs we take are powerful and altho they help with pain and keeping our disease in order...we suffer in other ways. I do hope you stay well and rested and have a happy day.

[Madmusiclover in reply to Feank]

Agree. Recognise all those metho side effects.I’m on a JAK now.

[krillemy in reply to Madmusiclover]

My biggest problem here in the beginning years is fatique, after 2-3 hours of activity, brain or body it hits me like a hammer. Mornings well, first 2 hours like I have a hangover - so mtx does not sound like an improvement

[medway-lady]

If you achieve remission which is the main aim then life is normal. It does take time so patience is vital and not giving up because of side effects after a few days as they often go away as the body gets used to the meds. And if you've given the med. a few weeks and it hasn't worked then it'll be try another one. Unfortunately there is no one size fits all medication but there is a pattern of prescribing. Be careful with Ibuprofen that can have side effects and make sure you get your blood tests done as requested. It's a journey but definitely life will get better. x

[Lovetodanceto]

Well hey there krillemy really know how ya feel I have a lot of fatigue crazy however have been like this since I was a teenager. Well I had to give up my exercise class once a week as I couldn't cope feeling like a steamroller had rolled all over me. Really hope things improve for ya with treatment take care 🤞