Disappointed and hopeless

I dont really know what im trying to say but I suppose I feel like Im not coping with everything how I should be, its not like ive never had anything to deal with or been In this much pain before, I thought I was a strong person, but everyone around me that has an illness like or the same as me (RA and Lupus) seems to just take things in there stride and alot of them work and lead a normal life whereas I spend what seems like most days crying in agony or laying in bed. I started on methotrexate just over 2 months ago which seemed to be starting to work I could do more with my days, exercise and was more positive but I feel like ive taken a massive leap back over 2 weeks now ive been in agony burning crushing pain all over,numbness and sharp pains,along with my other symptoms and havent been sleeping and its getting me really down, ive had to cancel alI my plans and feel helpless and scared.I feel like i gave myself and my family hope that something was working and now Im worse. I went to the doctor yesterday who gave me steroids which i really trying to put off taking again but know I have too.sorry for the moany post im grateful for what I can do but it doesn't make this any easier.El x

Last edited by

10 Replies

  • Hi Ell1

    I am sure we all understand. We all put on a brave face, but it gets to a point you cannot do it anymore. I have been suffering from a big flare up for the past week and today it has reached its peak. Just want to go home to bed and cry.

    No one can understand what you are going through and your family is there to support you so dont worry about telling them you are in pain. Lack of sleep is awful and can make the pain worse as you are exhausted. My doc prescribed with some tablets to help me relax. I had the best night sleep!

    Dont worry about being moany, we all have our days

    Take your steroids to see if they help but please ask your doc for something to help you sleep

    Sending lots of hugs

  • Thankyou I know you can all relate I just needed to moan to someone who understands I think you can be brave most of the time but when everything adds up it overwhelming and the tiredness makes everything worse I've taken the steroids as I know they will help just going to try and relax and get an early night. Hope you feel better soon too, Thanks :) x

  • As pickle says 'take the steroids ' they are the helping hand you obviously need at the minute. Two months isn't really long enough for the methotrexate to work fully so the steroids will tide you over and improve your quality of life until it really kicks in. Wishing you the best 😊

  • I'm sorry you are having such a bad time. My daughter is 22 and has ankylosing spondylitis and Crohn's. Please follow her on Instagram @ashton.stubb and Facebook Ashton Stubblefield. She has been having a rough go as well and can totally relate with feeling like you've lost your whole life...socially...school...work. It would be a great person to connect with. Young people with these terrible diseases have a whole set of different problems. Hope the steroids kick in fast for you. We all hate to take them but when it gets to the point you are at they are a God send.

  • Thanks for your message, ive followed your daughter on instagram, she seems like a brave and inspiring women and I do know there are many of us that have to come to terms with a condition at all ages and I do know ill feel better, starting to already.thanks:) x

  • Chin up, I feel like this, when I'm going through a flare up, I like yourself am normally very positive, but when your in pain and the flare up is bad it's very hard to remain positive, I'm sure once the flare dies down, you will again feel a little better, chin up, just keep going don't let it beat you up, I hope this had helped you feel a little better🌈

  • Thank you,it has :) x

  • Morning. Don't be so hard on yourself. Yes, it is a struggle and every day seems to bring it's own struggles. Don't compare yourself to anyone else and keep doing what you can. Also don't see it as you a moaning, you are just sharing with us. The pain is a constant and no medication seems to take it away. Some days are just better than others. Here you can speak your mind and share as much or as little as you like. We are all in this together. Stay strong and thinking of you. Kind Regards Ilse

  • We all feel like that some time, the lack of sleep usually tips me over the edge I get something to help me sleep and that helps me cope better. The steroids will help to get it under control, then you can get fit, which always helps. You will get there.

  • Hi

    Never feel you need to apologise for feeling how you have described, we have all been there and we all feel that someone is coping better than us sometimes. But please don't beat yourself up about it, you are doing a great job, just getting through the day sometimes can be an achievement. Return to your doctor again explain what is happening for you and ask for help. I hope that you have good friends and family around you who understand just how awful things can get with lupus so don't be afraid to tell them how bad it is for you. My thoughts are with you and I wish you relief from this difficult time. all the best

You may also like...