Hoping someone understands

I was diagnosed last May with RA. 2 years before that I went to the Dr cause I was unable to move my hand. I would sleep with braces on wear braces during the day till one day I couldn't move my hand. It hurt so terribly. I was sent to a rheumatologist. He told me I was overweight and getting older. I was 40, 160lbs and 5'3". I went home , cried,and lived with the pain for 2 years in pain and shame because I thought I wasn't getting any younger or losing any weight. Then I started to get pain in my knees till I couldn't walk. I was finally seen by the same Dr who 2 years prior had told me I was old and fat and there was nothing wrong. He then told me my RA diagnosis and put me on methotrexate. It seems to help but I'm always tired. I wake up tired and I have 0 energy for anything after work. I feel like I'm neglecting my husband and children. I work then just want to sleep. Does anyone have advice on how to deal,with fatigue or thoughts on taking methotrexate?
Thanks

Hi. I’m wondering if you need a different doctor. They should be willing to work with you to find a treatment plan that works for you. They shouldn’t dismiss your symptoms. For me, I had too many GI issues to stay on methotrexate, but I’m doing well on hydroxychloroquine. Fatigue is better, but, for me, never goes away entirely. Starting an anti inflammatory diet did help. I don’t go crazy with it, just some easy changes.

Hi Lorita. I think it takes 2-3 months to feel the benefits of methotrexate, so I wouldn’t give up hope yet! How are you doing with the side effects?

Ok firstly - yes to a new doc like people above have said. Unless you are doing hand-stands on a daily basis, I fail to see how your weight could cause pain in your wrists/hands - what a patronising pile of rubbish!! I would never go back to that person ever, **EVER** again...!!!

Secondly - fatigue has been a HUGE thing for me too. Yes, I have joint pain (and fibromyalgia and Sjogrens) and yes it can be bad and sometimes all at once, but the day-to-day problem I couldn't seem to manage or overcome or try to get around somehow was the incredible fatigue. Like you, I used to work all week and be completely spent and slept all weekend. I'm not exaggerating - some weekends it would be 20 hours sleep on Saturday followed by 18 hours Sunday and then I would drag myself through the next week. (Oh and isn't it great how you can have fatigue like that and then RA will hit you with insomnia? Ah the irony of it all...!!)

OK hang in there with my long rant, but I swear - THIS IS THE GOOD BIT - I met someone who had tried LDN (low dose naltrexone) and it really helped their fatigue. So I tried it - AND IT HELPED!!! In fact, the medical profession have started using it now to treat fatigue in long COVID cases cos its working for that too. My rheumatologist didn't seem to listen to me at first when I asked about it, so I went to another specialist doctor who helps women with stuff like fibromyalgia and fatigue - we did all the thyroid tests etc (that needed to be fixed but we found that I still had bad fatigue even after it was corrected), so then she put me on 4.5mg of LDN per day (you need a script but its a compound medicine and has to be made up at a compound chemist) and it was such an improvement for me. PLEASE NOTE that LDN is **NOT** a silver bullet - it will not cure the fatigue and I do still get fatigue and I do still have to be very careful and manage my energy and not overdo it - however I am much, *MUCH* improved now that I've been taking it for a while (over 3-6 months) and I do not need to sleep all weekend anymore, just some afternoons some weekends. I will admit that I do sleep about 10-12 hours on weekends though (less work nights).

Unfortunately sometimes you have to say something is bothering you over and again to certain doctors (or even find alternative doctors) in order to be listened to. I found this out the hard way when I started getting RA symptoms in a rural city in Australia and I asked and asked and asked my doctor about the pain and they basically told me the pain was all in my head and implied that I was a hypochondriac who was seeking attention. Its almost like paying someone to insult you - no thanks!!! So I finally travelled to the nearest major city where I had family to see a decent doctor that my Aunt was seeing and that is when I finally got a proper diagnosis. This new doctor was very good at his job and cared about patients, so he did a broad blood panel to test for a whole bunch of things and then referred me to a rheumatologist. I think its super easy to forget that Doctors are just like any other service industry - there are bad ones and good ones and you have to hunt around sometimes to find the good ones, usually through word of mouth or references from people you trust.

As an aside, I'm on methotrexate and biologics and the occasional anti-inflammatory - none of these help me with fatigue, they all help with pain but never seem to touch the sides for me in relation to the fatigue. For a while I thought maybe it was just dealing with the pain that was making me tired but trust me - its not just the pain. Its a thing in itself that you need a doctor to help you with.

I hope this helps, and like Susan KM said - please be kind to yourself. It can be really frustrating at times when your body won't let you do what you want but I swear to you that there are new medications and breakthroughs happening all the time (look at biologics!) so hang in there and maybe look for ways to 'cheat' in life that you didn't even think about doing before RA (e.g. one thing I do now that I never did before is to get groceries delivered as it saves me a lot of time on the weekend and after work - I no longer spend time driving to the shops, wandering around the shop filling the trolley and waiting at the checkout. Might not suit you but just an example).