Since being diagnosed with an inflammatory disorder three years ago I have suffered with various symptoms most of which are now well controlled and stable.
The severe pain in my joints and other parts of my body and the excruciatingly painful headaches thankfully seem to be kept at bay by medication.
The only problem which has been constant for most of this time has been a debilitating fatigue and tiredness. My CRP which was extremely high at the start of my illness at 337 has been at normal levels for around two years so I am assuming this would not be a contributory factor. Other important markers such as liver and kidney function etc have been mostly normal over this time also.
I have also undergone a sleep study which identified a snoring problem but no evidence of sleep apnoea and have had a Mandibular advancement device made which I have been wearing every night for the past few weeks chasing an answer but with seemingly no benefit or improvement in my issues with tiredness.
I have previously asked my Rheumatology department whether the Methotrexate I have been taking for approximately two and a half years could be responsible but have been told that the medication would not be the cause. I stopped taking Prednisolone and Alendronic acid around a year ago so I know that they would not have been a factor.
If anyone has had a similar experience I would be very grateful for any comments.
Thanks
Elwyn
Written by
Hightower62
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I’m fatigued whether disease controlled or not. NRAS have a good booklet on it. Try popping ‘fatigue’ into search on this site. You are not alone. My rheumy really isn’t bothered about it yet it’s so debilitating.
I hate to tell you but I’ve been in remission for a long time but I still suffer from fatigue. Unfortunately it’s probably something you’ll have to live with 😔
My rheumatologist says fatigue is the one symptom that is difficult to manage, even when meds are controlling the inflammatory arthritis. I think it’s a case of learning to pace ourselves. There are booklets on fatigue on the NRAS and NASS sites, that suggest how to manage it. Methotrexate can contribute to it, I’m on 25mg and thankfully it doesn’t exacerbate mine. I’ll try and find the link to the booklet for you.
I found that an iron supplement helped with some of my fatigue, as did increasing my folic acid (consultant increased prescription). I still have occasions when I'm wiped out though.
I wish there was an answer on how to manage the fatigue but it just wipes me out some days, I have reached the point now where I stop myself trying to push through it and have to let it be.
My fatigue was so severe I was also diagnosed with Fibromyalgia. Amitriptyline helped me greatly as it makes me sleep more soundly. Not having ‘deep sleep’ can affect fatigue levels. Stress for me was also a major factor, so I cut out as much stress as humanly possible.
Even now though, when I have considerably more energy than I did, I have one day on, one day off. If I do ‘too much’ I may need a couple of days in bed, and if stressed/poorly can be in bed for a week.
Small changes made a difference. I cut out gluten, got counselling, totally avoid ‘ready meals’, take a multi-vitamin / supplement every day along with additional B12, stopped smoking (it was only 2/3 a day, but this also helped), gently built up fitness levels, lost some weight. It’s an ongoing process.
I am 12 years in with RA (42) but my fatigue predates that by a few years. But because I was in my mid-late 30s this was ignored….
There was no magic cure for me, I just pace and rest better, and do the one day on, one day off thing… it’s just a matter of finding out what works best for you. And to make things more fun, everyone is totally different…. 🤪
I find fatigue to be by far the worst of all my symptoms as it impacts every aspect of my life. Therefore , any medication that makes it worse is not an option for me . Methotrexate definitely made it worse. I slept three days every week when on it and after 10 months of that ( put on a stone in weight ) I’d had enough. The only thing that helps me is pacing ( occupational therapy very helpful with this) Id love to find a quick answer to this and if I do , I’ll be sure to share it . I also play ocean waves sleep sound every night for eight hours and find this improved my sleep quality massively , which helps.
Fatigue was one of my presenting symptoms and remains with me 6 plus years on.Pacing yourself can help manage things, but unfortunately it is a symptom that many people with RA experience.
Yep, fatigue really gets me. Strangely I had a couple of days without fatigue recently and felt great. I coped with pain much better and I realised just how much fatigue had been affecting me. After a couple of nights of being wide awake, it's back again.
Yes I do get fatigue depends what I've done day before i.e. had a coffee with friends or similar enjoyable event. had our grandson over etc etc. Think both the condition and the meds is a lot for our bodies to deal with and must be taking up energy.
Lately especially in hot weather I got fainty as well as fatigue so have had a f2f appt with the GP who kindly , thoroughly checked me over, and I'm waiting on result of blood test to check Vit D, Vit B12, iron levels and my sugars.
Good you've had your sleep pattern checked, perhaps have similar checks like I have?
I was talking to my husband today about various difficulties. His RA is controlled but his lack of stamina has certainly impacted our lives. It's a hard one to accept.
I can totally agree with all the other responses here. Just a thought....it may be worth getting your thyroid checked as RA and thyroid issues ofter come together . Best wishes 🙂
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