Tired, lonely with RA

I have RA, palidromnic rheumatism and on metoject pens , I have woken up this morning and everytime I try and stand or walk on my leg it feels like a knife being stabbed inside my hip, normally I'm just stiff and tired, but recently more tired than usual and really fed up, I was undiagnosed for around 20 years and was finally diagnosed by the age of 32, which was a relief in a way that after seeing many doctors and scans and tests someone was actually able to tell me they knew what it was and what was causing it, but this pain this morning makes me want to cry, want to give up , its effecting everything even intimacy which then causes arguments because SO feels unloved , any one else have this or feel this way, I'm tired of not being able to play with my kids and do things I could 2years ago 😭

Comments

  • Poppyjane
    Poppyjane Moderator Posts: 470

    Welcome @bubblegum226 to the online community. Thank you for your three posts this morning.

    You have a number of conditions that you have struggled with for years. Today you are in considerable pain combined with fatigue and are generally feeling unloved. Activities that you could do two years ago are more difficult now. Many of our members will be able to share this same feeling of loss and to share their ways of coping. So well done for reaching out because this is the right place for you to share your ups and downs with others.

    I attach some links which I hope you will find useful

    https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

    https://www.versusarthritis.org/get-help/helpline/

    The Helpline as you see is open Monday - Friday if you want to talk with someone , meanwhile do browse the website there is a wealth of information and members are always ready to share their experiences.

    We look forward to hearing from you again

    Take Care

    Poppyjane

  • Lilymary
    Lilymary Member Posts: 1,669

    That sounds so miserable for you @bubblegum226 , can you review your meds with your GP? These ones don’t seem to be doing the job. Pain can be so exhausting, and wears you down emotionally as well. It’s awful when it affects so many aspects of family life, but being honest with family members about how you’re feeling, and reassuring them that you still love them will help.

    You may find some of the tips in this link helpful

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    To get yourself moving again, the Let’s Move with Leon exercise programme, also through this site, may help you to get yourself moving again, it’s quite fun, and you can make it as gentle as you need it to be.

    sending you a gentle hug ((()))

  • I have tried to Express how I feel and my pain but SO just doesn't seem to get it , his response Is that I wasnt like this 3 years ago when we met and that it seems like i justin his words cant be arsed , he complains that I just get into bed and go to sleep that i dotn touch him, he feels unloved , he basically wants sex every night and if not for a few days goes like a stroppy teenager, I currently still work as a carer and most days I'm just stiff and tired then come home to 3 children and house work I'm trying so hard to please everyone but just feel today like giving up, feel useless and sick of this stupid disease x

  • Jewels
    Jewels Member Posts: 194

    It's not your fault hun it's hard and he should be more understanding don't feel guilty you didn't ask for any of this hope you feel a bit better soon hun 😀

  • I am very recent to arthritis but I feel overwhelmed too - and I don't have kids or a tough job like yours! Not a relationship counsellor but sounds like your husband could do with giving you a LOT more understanding. I wonder if there's any resources out there designed for partners, to explain how it feels and how hard it is.


    Lately I have found giving myself some self-care and love has helped, actually a bit of a 'pity party' before picking myself up again. Trying to fight it just seems to make it worse. For me, that pity party looks like ice cream and trash tv in my comfiest clothes, in bed with curtains closed. Your life sounds a lot busier though, is it possible to take some time for yourself like that?


    Overall, major virtual gentle hugs being sent your way.

  • Jona
    Jona Member Posts: 406

    Hi bubblegum226,

    Sounds like your really having a rough time perhaps your hubby needs educating on your conditions and how they affect you, brave by the way coping with everything and trying so hard but don’t be hard on yourself going undiagnosed for so long obviously has delayed your correct treatment maybe hubby should be made aware of that fact and mine is degenerative so the word itself is self exploratory

    Maybe suggest he Google’s your conditions but take a look with him so you can both understand fully if meds aren’t working see your consultant or gp take hubby along with you perhaps your nurse could help you explain

    Your coping with a lot at present so be kind to yourself and hard as it may seem try to think of some positives

    take care big hugs

    love Jona 😊💪💐

  • stickywicket
    stickywicket Member Posts: 27,223

    Arthritis affects everyone in a family but in different ways. It can be really tough but the storms can be weathered. I know. I've done it. I suggest you have a good read through here https://www.versusarthritis.org/about-arthritis/living-with-arthritis/sex-relationships-and-arthritis/ and then maybe have a chat with someone from our Helplines. You can deal with this but you do need help right now.

  • Lilymary
    Lilymary Member Posts: 1,669

    You care for your children, you care for the people in your charge at work, your husband wants you to care for him. Who’s caring for you? You have a condition at causes pain and fatigue. You can reassure him that he is still loved, but perhaps ask your husband to go with you on your next doctor’s appointment, and get him to read the links Poppyjane has provided. Being in a long term relationship, and raising a family, is a team effort, specially when the going gets tough.