New Here..a few questions...

Hi, I just thought I'd introduce myself and possibly ask a few questions to people that are maybe more experienced with RA than me, if that is okay.

I'm a 24 f and was diagnosed around a month ago but have had symptoms for 2-3 years, really. I'm finding things quite difficult at the moment, I'm extremely fatigued and tearful and struggling to get University work and every day errands done. I'm just wondering if anyone with personal experience has any tips for fatigue and low mood. I have a history of mental health issues in addition to this so I am struggling quite a bit at the moment with acceptance of this condition and also remaining motivated. 

Has anyone else personally struggled with acceptance and low mood? If things have improved, what do you feel has helped with that? 

Thanks for your time :)

17 Replies

oldestnewest
  • Hi Hanorwar,

    Welcome from another newbie.

    I'm in a similar situation, newly diagnosed and really suffering with fatigue.

    I struggled to carry on with work but eventually it became too much and like you I became very depressed.

    I've had some help through my GP and I am starting to accept and deal with things better.  I'm still really struggling with fatigue.  I've been on methotrexate for 4 weeks.

    I give myself small tasks, I don't know if that's possible with your uni work, and rest when I need it. I try and get a bit of fresh air when I can, even if it's only for five minutes, it helps with my mood a lot. 

    Hope you feel better soon

  • Hi Celticstar1, thank you for your reply and welcome too! :) Making small tasks definitely sounds more manageable in terms of housework and uni work. I guess with Uni work I'm still getting into the swing of things as a mature student and I agree with the small tasks things, I may benefit with setting small targets over time to get the big assignments done. I absolutely agree with the fresh air advice too. I always feel better after being outside but for some reason lately, always put it off. Thanks again you've given me some great points to think about. 

  • Also, I hope things improve for you soon. Keep fighting :) xx

  • Mtx takes about three months to fully get into your system so be patient,get out as much as possible,i like to get out into my garden even if it is only to read the paper. Do a bit rest a while do a bit more. xxxxx

  • Hi Kai, thank you for your time and interesting links! I definitely agree physical health is important. I'm still very dedicated to a healthy diet and exercise (adjusted when needed). 

  • Hi Hanorwar, don't be afraid to let your unit coordinator (tutor, lecturer etc.) know that you are struggling with the work load due to what you are going through, I'm sure they'll be very sympathetic and willing to extend deadlines on assignments and stuff when needed. I'm currently studying too, and my unit coordinator mentioned at the very start that they know 'shit happens' in life and they understand.

  • Speak to your uni about getting help with your coursework and your mental health issues. They will support you.

      Fatigue well i am sorry when you find out let me know as thats my worst symptom,but i do have more than ra.xxxxx

  • Hiya Hanorwar & welcome. We do seem to have a few younger newly diagnosed members introducing themselves just now & it may help you to help one another, particularly with those who are also at uni, you can share tips on how manage coursework & uni life so that's a positive. 

    It is difficult to manage fatigue, particularly when at the start of treatment when the meds are still building up but rest as must as poss when you are able & hopefully you'll start to notice improvement in not just your symptoms but fatigue itself as it can also be due to disease activity causing lack of energy. 

    It may help to you see your GP about your low mood, to determine if it's acceptance of the disease & the 'worry' of that, or if there's something other underlying which may benefit from some form of treatment or counselling. It's not unusual to feel down at the start of treatment, we each have different ways of coping with the diagnosis but it needs determining. Getting out as Sylvi has suggested helps lift the mood, even if it's just for the fresh air.

    Maybe a read through the NRAS site will help if you haven't already, it's full of useful advice nras.org.uk or even talking to someone who understands can be of help, the helpline is free from a UK landline, 0800 298 7650 Monday - Friday between 9.30am and 4.30pm, though being a bank holiday they won't be open today. Obviously, keep posting here, we've all been where you are just now & always happy to share experiences & if we can we will help. :)

  • For me, the key is planning. I make lists of the things I need to do and prioritise them. 

    I plan NOT to do more than one major thing a day. If I have the energy later then I might add something off my list. 

    OK  it doesn't always work, like now when I have a sore throat as well and feel so tired that I can't do what was planned. Then I have to have a "down day" when I sit around and watch the birds, or go to sleep. 

    Some days, I have a "full of energy day". That's when I need to take care not too do too much or I know I will have a "can't do anything day" the next. But often it means that I can do a FEW of the non-essential things then.   

    And I keep telling people "my condition is unpredictable". I'll let you know if I can do it, but don't rely on me, as I may not be able to .... Some people get annoyed about that - but that is their problem, not mine. Sorry if that sounds selfish, but I have enough to do coping with my emotions, let alone someone else's. 

  • Hi Hanowar,

    I will tell you that the beginning was incredibly hard for me. Once I was diagnosed and a course of treatment was prescribed (meloxicam for the pain along with methotrexate), I just expected to get better. Instead, it got worse and worse and I became less and less mobile. I became moody and depressed. I hated people who asked "how are you feeling," even though they were just trying to be kind and sympathetic. It was awful. I saw a psychologist who tried to help me accept the disease. I won't say that it was a success, but at least she let me grieve my former active self. Once I started Humira, it was like a fog lifted and I started to feel better and then I actually got to a point of feeling better than ever and challenged myself to learn how to use the monkey bars (something I never did even as a kid) and to train for a Tough Mudder (I didn't compete, just did the training). I did get a flare since then and I went into remission (from about November 2014 to March 2016) and now I'm on less medication and flaring a bit, but the time I felt great since my diagnosis gives me hope that I will feel great again. And feeling poorly is just a reminder that I need to do a better job of taking care of myself.

    Take care of you. It will get better. But do seek help if you need it!

  • im sorry your going through this i was the same as you in the beging after getting diagnosed woth RA i kept on thinking these things happen to other people, not me. i know that sounds selfish but thats how i felt at the time you will go through many emotions the anger the feeling sorry for youself etc but no matter how long it takes your rhumatolagist will find a cocktail of diff meds that make things more bearable it took 2 and half years for the right combination of meds was found to work for me but please dont panic he also told me everyones different and not one med or dose of meds or combination of meds will work the same way on everyone to tell the truth i was starting to think nothing is going to work but then by adding the second different injectable embrel that wirked most of the time apart from when having a virus which takes ages to clear up cos if low imune system like a cold will knock you for six norm i would of worked and carried on through the cold but since having RA im in bed for 3 or more days bearly able to move cos of stiffness and pain the bigest thing is learn to listen to  what your body tells you if all you done is changed the bedding to fresh on the bed if you feel worn out rest if you cant take a nap then sit with feet up nice and quiet and also a big one try try try to stay away from getting stressed this can cause a big flare up of your RA your appitite on certain meds may change at times you cant face having a meal other times you feel so hungry you cook then ear anout quarter  of it and cant manage the rest other days i say i can eat for england haha try to not stagnate if working carry on for as long as you feel able to have you spoke to your manager to let them know you got RA you need to put this in writing with proof like doctors letter hosp appointments etc the work place has to try and accomadate you with RA and working there like  if your feet knees suffee then they have to change your roll in the company fir sitting job or supply you with a chair so when your knees feet hips hurt to much you can hav a sit down sorry im rambling on some what i just wish you all the best

  • From an oldie to a youngster lol ... You will learn to deal with any pain you feel but it takes time. Don't push or expect too much of yourself. Allow yourself to have bad days. My first reactions were... why me followed by anger, panic not knowing how to cope, my employers reaction. Nobody tells you of the emotional turmoil. The silly simple things you will struggle with. Fortunately i have had a very understanding husband for the last 41 years and 2 sons. Let friends and family help you and ask for help. You are young, will learn quickly and you'll deal with this just fine. Get the balance right and know when to rest. Take care, i'll be thinking of you.

  • hi there...ive recently been diagnosed and i know how you feel...im feeling like i need to get a grip..but i cant somehow...i cry randomly and am so emotional and thats hard because i dont want to burden other people with my problem.....

  • Hi Hanorwar,

    Welcome.

    I'm sorry to here you qualify to join our band but we're a good band who plays well together and hopefully we'll help you through these tough times.

    Mental health wise get someone to talk to either through your GP or by self referring (in the East. Midlands a person gat refer themselves to the Talk-Talk service) either way there will be a waiting list - your uni will have a counselling service unless you are doing an OU course. I live with depression and have done so long before the RA came along so I know the added struggle there. I find mindfulness meditation helps and listening to a guided meditation as I go to sleep helps me get to sleep - there are several good APPs out there including Buddhify, Mindfulness, Sleepfulness and Omvana. 

    Know that you are, at the moment, grieving for your loss and also know that you are going to find out who your 'friends' are and who your 'acquaintances' are and you'll probably be suppressed by who steps up from being just an acquaintance to being a compassionate friend and who turns out to be a shallow fraud of a friend - don't bother wasting your energy fighting this or being negative about those who just didn't get it cos that's no good for you or them -they didn't get it end of story move on!

    Be compassionate with yourself - it's OK to live with chronic long term conditions and it's OK to have crappy fatigue riddled days 😎

    All the best

    Ali

  • The good news is you have a diagnosis and treatment. I was diagnosed 10 years ago and visualised I'd be in a wheelchair living in a bungalow by now. I'm not. I am still on the medicines I was first put on. I do have trouble pushing my father in a wheelchair but he's 6ft tall, but I can. If you can, afternoon naps are great, but not too long. I still loose days unpredictably to fatigue.there is a bereavement of the person you thought you were.Dont be afraid to get help from a person outside your family be it talking therapy or lifestyle coaching.live your life as I often say I may have some joint issues but it doesn't stop me talking!

  • Hi hanorwar I'm sorry to hear that you are struggling . I too have mental health issues, I have bipolar,just be careful of steroids mostly injections they have caused me to end up in a psychiatric hospital twice and then was told that steroids can affect people with bipolar (pity that it wasn't mentioned even though they new of my mental health issues) so I now stay away from them even though at times I really needed something to help with individual joint swelling and pain but as everyone mentions different medications have different reactions to medicine, I just want you to be aware of the possibility that they can have an adverse effect on people with bipolar,hopefully that won't apply to you xx 

  • Welcome, I'm still in my first year, acceptance is very hard, I'm still grieving for how I was, grieving is the only way I can describe it. The fatigue & tiredness are my main issues now that my "flare" is under control. I'd advise you to read the NRAS site and hang around these forums, information is key to getting to grips with all this stuff. I'd also speak to your mental health advisor and/or GP. You are not alone. I know nothing yet but I am learning and its a real handup.

You may also like...