Feeling.. tired and in pain

Hi there

I started on methotrexate about 6 weeks ago, alongside hydro and steroids, just wondering when I am likely to start feeling better? When do these miracle drugs start to work?

I am really struggling at work, lack energy, severe pain, inflammation in hands and wrists, complete brain fog! I used to be a real go getter, had a high profile job, now I manage a small business centre and even that feels too much some days, most days.

I am paranoid about taking any time off work, don't want to let anyone down, my team, the students, myself and equally the problems having a sick record can bring! Sadly this is becoming more of a struggle... how do others cope? Any tips for what helps you get through the day, for living not existing? I have a great deal of positive things in my life and want to grasp them, take hold of them and enjoy them without this constant feeling of pain, lethargy, a real lack of energy, not completely tired but no energy either.

Pains in my hands, fingers, wrists that make typing difficult, writing all but impossible, constant tingling, hot, pins and needles, unable to hold/grip things..madness. I am but 47, don't want to feel this way, want the old me back, pre RA! Lively, energetic, engaging, enjoying life, living. Please, do tell me how you cope with this, positive stories, alternative medicines? Diet? How it impacts on work and how you minimise this.. any tips or suggestions would be greatly received.

Thank you all... Happy Wednesday ☺

11 Replies

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  • Hi Karen--- just a quick reply as I am off to work. Ithe took about 9 to 12 weeks before I started to notice a difference. I have gone from not being able to cut my own food up, at my worst, to nearly being ""ME" again. 😊

  • Mtx takes up to 3mnths to really take effect to get into your system. Sorry your not feeling too great,but if the drugs work you will soon start to feel brighter.xxxx

  • Hi Karen. All I can say is hold on. On my 9th week of MTX I started to feel better. You only have 3 to 6 more weeks before you start feeling better :)

  • Methotrexate takes about 3 months to kick in. The steroids should be helping you although the tiredness and brain fog still keeps on fighting

  • Hi- positive thinking and rest...oh and move lol. Try and stay as 'normal' as you can day-by-day as I find it helps. I asked for some wrist supports from the hospital as it rested my wrists at the beginning. Paracetamol gets me through the day pain-wise. It will improve ☺

  • Hiya Karen. As has already been said MTX can take 12 weeks, maybe longer, but hydroxychloroquine can also. This will be why you've been prescribed steroids, to help bring the inflammation down whilst waiting for MTX & HCQ to do their job.

    My first meds were HCQ, a couple of NSAIDs & a short course of steroids & I responded pretty much straight away, or rather I responded to the steroids. You don't say what dose you've been prescribed but maybe a slight increase or the addition of an NSAID would tip the scales & ease your inflammation more effectively. Another thing, are you resting as much as you can when you can? That can make a difference, or rather early on I found if I tried to carry on as I did pre diagnosis, just did that bit too much, then I lost the beneficial feeling of my meds (at that time the steroids & NSAID as this was only weeks in).

    The lethargy, even fatigue is the RD running through your body so don't fight it. Once you're responding to your meds, about the same length of time again since starting treatment, you should notice that starting to ease. But fight against it & you'll feel worse. It's all a huge learning curve when we're first diagnosed but don't worry, you'll start to understand the signs & if you listen to your body you won't go far wrong.

    Be assured your Rheumy won't ask you to remain on any meds you don't respond well to but both HCQ & MTX are probably the better of all the DMARDs for the newly diagnosed. Alternatives will be discussed if you're unfortunate & you don't respond adequately enough but that's further down the line, no point concerning yourself with that at the mo, concentrate on resting when you can to let the meds you've been started on work.

    Take care & if you've any more questions just ask, there's not much we've not discussed, no question too daft! 🙂

  • Hello Karen! What a lovely name :D

    I don't relish in being the bearer of bad news, but I put this in the category of "things I wished someone else told me" and that is that it could take a long time for the methotrexate to work. For me it was 7 months of agony until I added Humira to the mix, and only then did I have relief. Once I did, I tried to wean off methotrexate and it was only then that I discovered it actually served a purpose, as the pain and inflammation returned, even with Humira.

    So you might keep feeling terrible for a while. The best thing I did was to take a few months off and really take it easy. I know that's hard, especially when you feel like people are counting on you, but like the airlines say, you need to put your own oxygen mask on first before you can help others.

    Good luck and gentle hugs to you!

  • Hi, give it time. I'm on methotraxate for 4 months now and feeling great! It takes about 3-4 months to start working

  • Hi Karen - I am on the same meds as you, what dosage are you on? We all can relate, like you I was the high flier, constantly on the go, for me I have had to approach this with what have I gained, despite the pain. So what have I learnt from having RA:

    - to slow down, nothing is mission critical

    - eat better, defo more Veg 😊 - ( no cakes, for now.)

    - Be creative, experiment with my cooking, created some wonderful recipes

    - say No

    - spend more time with my friend and family

    - change my work commitment where possible. I work from home more days. They gave been great for which I am thankful!

    - pamper myself (hot Epsom salt baths)

    I guess not in a selfish way but a bit more focus on me and my needs.

    What really helps: family, eating well, relaxing, vitamins (B12 great for your mood), this forum, talking, accepting that this is what I have been dealt with, and I will get better, despite those achey days ..😊

    All the best.

  • I started myx 15 yrs ago and remember it healing my psoriasid quicly, in three wks and then around 6-8 wks my hands hips and knees eased up. I would expeience flares so during those times used my lunchtime for relaxing physical thetapy sessions. Those really helped me to get thu my workday. I have degenerative disc disease which made it too much for me to continue so i reLly understand your position. I wish you the best and hope you find yourself feeling better each day.

  • Hello everyone

    Firstly, thank you all so very much for your responses, kind words and positivity. It really is great to have such words of encouragement and will certainly help me to keep on pushing through.

    Thank you all xxx

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