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RA and mental health

I am really struggling mentally recently. I feel like a shadow of myself, out of control, taking my anger out on my loved ones. I feel so low and know that my head is clouded with negative hormones and it's likely linked to the fact that my RA is still not under control. Any tips on getting through the lows?

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I totally feel for you. I was exactly the same. The angry pain frustration turned me into a monster.

First thing I did was to start meditating. 5 minutes first thing in the morning with an app called Insight Timer. Then I extended it little by little and most days I now do 15 minutes before I talk to anyone. Lying down in bed. It’s mostly breathing.

Then I got myself a therapist. This was sooooo important for me because I live alone and had no one to vent to. Being able to cry and complain and moan and tell someone how you truly feel without upsetting them is vital to getting better.

And then on top of that I had some massive family issues with both parents being ill. They still thought I was the one to be looking after them even though I was so ill myself. I couldn’t see a way out and was so depressed. So my gp suggested the lowest possible dose of antidepressants (citalopram) just to get me through the day without bawling my eyes out a dozen times. I didn’t want to do it. I can see how helpful they are but I thought I was strong enough to handle it on my own. But I just couldn’t.

So I started on a very low dose in November last year. I have now halved that again so it’s minute. It has totally saved me.

I don’t recommend it for everyone but living alone and a bit isolated I was left with very dark thoughts a lot.

The combo of that plus meditation and therapy has made me see life and living again as something to fight for. I have horrible days still but generally it works for me.

Counselling uk is a great place to start. Find a few that resonate with you and then email them. Most therapists will give you a free 20 minutes to see if you are a good fit. Therapy is like a partner. You have to like them, trust them and click with them. It’s worth trying out a few.

Bon chance xxxxx

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Thank you so much. I think i will try meditation, I've always resisted but I'm willing to try anything now.

I live with my boyfriend and I've been having horrible arguments with him recently. I realised it's because how I feel in myself, and there's no problem with him at all. But now i've made him feel like he's not good enough and I need to work hard to show him that it's not him, it's my issues and prove that I want to work hard to try to help myself. I was considering going back to counselling, so I will check out that website! I've been through the NHS before but it was only a 6 week course and it felt like they were trying to get me from A to B in such a short time. So now I'm thinking private will probably be better.

I'm also going to mention how I feel to my doc in my next rheumy appointment so he might suggest talking to the gp about anti-depressants. It's only a month away so I'll see how I get on.

Thank you for your advice, you seem very strong and such an inspiration! xx

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My darling hubby takes my ranting outbursts with a pinch of salt as he knows whats wrong. Sit your boyfriend down and make him listen to you with no distractions either and fully explain to him why you go off like you do it is because of the disease cursing through your body. I ask my hubby if he finds me crying just to hold me and let me howl. He says i don't know how to help you and i say cuddlling me is enough. He is brilliant he really is. Also explain to that darling boyfriend what exactly you are feeling inside mentally and bodily so he can support you that way even if it is only a cuddle.xxx

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Yeah that's very important. We're still learning how to communicate together about it, and how to help each other and what helps and what doesn't. He's getting better, but for the first year and and half of our relationship I was in remission so now he's learning to love this 'new me' (which in my eyes is actually the 'old me returned'). Tonight we are going to sit down and have a real talk about how we've both been feeling and get it out. baby steps! xxx

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Try and get a book or something like that and when you get up and you know it is going to be a bad one,then write it in there and how you feel. Then tell him to write in there how he feels then sit down and discuss it,not every night,but at least once a week. That might help you both.xxx

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Yes that's such a good idea! It also sparked an idea to keep a diary as well even if its just for me to get it all down on paper x

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Make it two diaries then your boyfriend can vent all his frustrations into it and at the end of the week you compare notes darling.xxxx

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Yeah that's true! I think coming home with these ideas will show him that I'm really committed to working on myself and on our relationship to not let my problems get in between us xx

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Hi Savannah! I went through the exact same thing last year, when my partner had known only the remission me, and had no idea what a constant mix of pain and fatigue would be like. To be honest, I never had it that bad, so the way it kicked in was new and unexpected for both of us. I really struggled with communication. I didn't know how to explain that I just don't have the physical or mental capacity to do even half of the simple things we were used to doing together before. You know, things as simple as weekend chores or a walk in the park. It's difficult to explain why that 20 minute walk in the park has resulted in you not wanting to or having energy to take a shower.

This went on for a while, accompanied by all the expected arguments, until I read something very cliché about someone sending their partner a link to The Spoon Theory, and that changing everything. I didn't think it would change anything but... it did. It took some effort on his end to adapt too, but he was willing to keep reminding himself about my spoons and referencing them whenever appropriate. Now he seems to know more about my energy levels than I do and he's been a great help. It's a struggle to get through that phase of adaptation and requires some consistent effort, but then it's much easier.

Another thing I've come to realize is that we aren't the only side who needs some support in terms of mental health. After we get to the stage where our partners understand us and support us, that's a pretty heavy load that falls on them. I know my partner is sometimes exhausted and he can bear through my tough moments and seem all cheery to help me, but when he's done, he is drained. We haven't gotten around to mental health professionals yet, but when we do, I'd rather he start because I have him as support, and in those moments he should have support too.

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Ahh thank you for sharing, it's good to have an insight into your situation as it sounds very similar to mine!! I will definitely share the spoon theory with my boyfriend, thank you!

I think you're so right about supporting them too, or at least understanding that they need time to recoup energy, and that it can be draining. I do try my best to always show appreciation and let him have space when he needs it. These things take time and we will get there. x

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Have you taken your boyfriend to a consult with your Rheumy?

Other halves often feel left out....& TBH often don't get how awful the early days before we get settled on the rights meds can be.

Ask him to come along....rheumies are very good art explaining .. I bet you've said " You just don't understand" few times haven't you?

We...no he probably doesn't..why should he ? It's new to both of you.

Try that..might help a bit.

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That's a good idea, he nearly had to take me to get my knees injected but he couldn't get off work so my dad ended up taking me. And yes I have said this to him so many times! It's partly my fault because I feel like a broken record talking about it, so when i hide it or just try to get on, i guess my frustration still comes out in other ways and he just doesn't remember that I'm still in pain/fatigued and struggling even though I'm not moaning about it. So i need to find a better way to let him know, I can't assume he can just read my mind haha.

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Let's face half the time we don't understand it ourselves.. ...especially if you've had a few good days, then all of a sudden you seem to be back to square one.

If really will help for him to hear a doctor explain ....with you he just sees you hurting so probably doesn't react rationally....but he'll be able to listen to the professional & ask questions without feeling awkward.

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Hi I also felt like this for a long time and couldn’t understand why I was so emotional . I didn’t want the antidepressant but they are so helpful ! I still have moments but not half as bad as before they really do help x

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You've been amazing Jules and you've come through it. Hugs. 😘

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I live alone as well. Depressing in itself. Took care of my mother 24-7 for the last five years of her life. She was ungrateful and miserable. No matter what I did it wasn’t enough. I had six surgeries while caring for her and no one to help me. I feel like she stole a part of my life and I let it happen. But it is what it is and I will continue to be a survivor. Reading your post, however, makes me want to go back to therapy. I have a good therapist and it does help to talk to him. Wishing you a good day.

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Hi Savanna

This sounds awful for you , not an isolated case though! I am not well controlled either and experience these periods of low mood and irritability.

I think fatigue is a huge factor. I think diet is too. When you have a craven for something like sticky toffee pudding with ice-cream its hell on earth fighting with yourself to ignore the craven. All the usual symptoms of RA can make us short tempered and narky.

I get those feelings out my system by escaping into beautiful surroundings. Forests, secluded beaches, anywhere scenic and peaceful. Make sure whoever you are around is understanding and an attentive listener. It's good to talk out those negative feelings too and to know the person beside you is being a kind soul. That helps immensely!

Of course you can always let off steam here too! It's normal to feel low from time to time with or without RA. Xx

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Hello!

Thank you, you're so right, I think my fatigue is the worst pest for triggering it. I plan to be stricter with my diet too, and I'm cutting out alcohol because it makes me feel even worse.

I would love to be around peaceful areas. I live in the city and I really do need to plan weekend escapes, I think that will really help. I crave it actually!

Thank you for your reassurance. It is good to let off steam and have others who understand xx

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We all let of steam at the injustice of our disease darling your not alone darling someone will always understand what your feeling.xxx

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Thank you so much that means a lot <3 xxxxx

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I live in the city too but I NEED to get out of it on a regular basis. If you can, try not to plan too much because it might not happen if your not feeling up to it. That then makes you feel worse, guilty and all those emotions start all over again. Instead, be spontaneous if your feeling ok. A change of scenery is medicine. I used to always love driving and loved the mystery of just going wherever! It was exciting, fun and mood changing. Car, music, dog, it's all you need to be happy! 😄 ......when pain free of course. Xx

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I also went down the nhs route. I had one phone call and then two sessions with different people from nhs sessions. They didn’t know me and just read my notes. I only had 20 mins each time. It didn’t help at all. You need a bond with your therapist which is why going privately helped me. Luckily I found someone who is semi retired and she only charges me £30. I now see her every two weeks. It’s been amazing. X

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That was my experience too! I definitely need to get to know someone and for them to get to know me, it takes time and a bond. I'd be happy to pay that, hopefully I can find someone at a good price. I already feel a bit better just thinking about it because it feels like I'm taking steps to help myself x

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I get rid of much of my pent up anger and frustration by ranting at some of these crazy plastic politicians on tv. I do try to keep expletives to a minimum, but admit to failing miserably on times. Don't think it works 100% but I don't often argue with my wife so seems like it's doing some good. I've always loved listening to music which is my way of meditating I guess. It all seems to help get me by as I haven't blown a major fuse...yet!

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haha I'll give it a go! Currently letting music soothe me at my desk :)

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LOL :-) I doubt very much that the weird freaky stuff I'm currently playing on my stereo will do much to sooth you. :-) Seems to work for me though, which sums up my personna I suppose.

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Hi savannahseger was going to say similar to Jules13 you have good advice there only other recommendation if you have not already tried is similar advice CBT ask for referrall it would be senior OT or phycologist it is 1 to 1 and can last for 2 to 12 months and you bond a relationship is good treatment .hope things improve soon for you

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Thank you for your advice! I have tried CBT before but i found it to rush me abit. I think I would really benefit from attending an RA group meeting, I'm going to look into where they are in my local area. Thank you! xx

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Yeh sometimes CBT they can be rushed depending who you get I was lucky that way.chronic pain or wellbeing courses are ok if not tryed but very few with RA on them .hopefully you can find an RA grouop meeting in your area to attend

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Not RD but I have had two long-term courses of CBT and they were life-changing. They lasted for about a year each time and they not only offered a guilt-free way of unloading emotional burdens but also taught me how to change my thinking on challenging situations and dealing with them. As a hard-core cynic on these therapies, I can only say that they worked for me. Hugs

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I really didn’t get on with cbt either. I also found that cbt therapists don’t always have the same training as psychologists which really worried me. They deal with the current and that seems sensible but a lot of my pain and frustration was triggered by other stuff not just the illness. Support, or lack of it, related to a lot of other stuff. So I would still have a look at uk counselling and see what feels right for you.

I would love to join an RA meeting but sadly my closest one is over an hour away.

Xxxx

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It is very hard with all the ups and downs. Good advice on here. I agree and I had three six week sessions of CBT . She was the only one that knew all the different things I was going through in different areas of my life as I didnt want to burden my oh. It really helped so hope you find what helps you. I have to say my oh gets the rough end of the deal. Keeping them close emotionally really helps. Be kind to yourself. All the best.

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Glad I'm not alone! And lucky we've got such resilient and kind other halfs aye :) Thank you xx

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I can relate. After many years I still feel like I am navigating through a life I never planned , never wanted and stare at this reflection looking back at me and most of the time don’t recognize what I see. It leaves me feeling lost.

It’s so important to reflect on who we are and try to remember we are still the same person. Our life has just taken a different uncharted path and though a little harder to navigate, we haven’t changed. I still have the same loves, wants, needs, dreams.... we are still trying to figure it all out along with our loved ones. And they are grieving with us... a life that should have been. It’s hard to remember that sometimes. But we are in it together and we need to be in it together. You and your boyfriend are on a life journey together. When you hurt he hurts and understanding will come with time. Include him as much as you can and like was said... talk. Maybe he won’t get it but he can try. Don’t forget to have fun together and make time for yourselves when you don’t talk about your illness. And take time for you, for self care. It’s important to recharge, refresh, rebalance even when we feel at our worst.

I still remind my hubby every now and then. But not as much as I used to 😉❤️ this moment will pass... take a deep breath and remember your not alone.

❤️

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Such nice words, making me feel a lot better, thank you! Very good advice too. I need to remember these things more, before I get into a panic. <3

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Hi my lovely, sorry you are struggling but you are certainly not alone. I’m sure we have all gone through times of frustration and sheer anger. We do take it out on our nearest and dearest but if he loves you and cares he will understand. Talking is the best therapy and communication is key with this disease. It’s too easy to say “I’m fine” when really you’re in agony but don’t want to seem like you’re moaning all the time. As others have said it’s a good idea to take partners to appointments so it seems more real. I recently took my husband to my infusion and I think it hit him a little. (Although not enough to participate in any cooking or cleaning 😂) I’ve worked in mental health as a nurse and am also a qualified counsellor so if you are struggling please pm me for a chat. You’re stronger than you think. If you find it hard to talk then write your partner a letter, even if you don’t manage to give it him it will have got all of the thoughts and feelings from your brain into paper. A diary is also good advice that you have had. Take care, we can all be there for each other xxSarah

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I can't believe how many people have responded saying they have had similar situations with the people closest to them too. It really goes to show how RA affects our lives. I'm really going to practice communicating better about it though and definitely going to keep a diary, I'm hoping even though it's tough it will make me into a better person when I learn to handle these things.

Thank you for being so kind! It would be nice to stay in touch :)

Take care lovely xx

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Seems like lots of good advice here. What has really helped me is painting and music which I think is akin to meditation. I’m an artist and didn’t work for the first year I was diagnosed.. partly couldn’t! But even though I’m still trying to find the right medication am back and working. Close my studio door and work to music for as long as I can. Think it’s also helped with pain relief as takes your mind to a different place. Just said this coz I read u like music. My pain doc walks around with his headphones listening to music when not working! As far as your partner is concerned... communication is the key. I think they , like most people ,have no idea what we go through!! U will be fine I think🌞

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I would love to get back into painting. I have a box full of art supplies I have neglected this past year. Definitely need to get motivated to create something again! I'm already feeling a lot more inspired just talking on here getting ideas to get back to my true self again, and art used to be a massive part of my life! Thank you :D Hope you are well xx

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Luckily with art, you can express yourself with different mediums and be as loose as you want. It’s getting it out that’s important. I’ve started dancing again. Around my house. Not pretty delicate dancing... flinging myself awkwardly around and moving the body parts that don’t hurt.

Whatever you choose it’s all just a relief. Xxx

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That's so true!! Keep dancing :D xxx

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Just go for it! Instagram is a brilliant place to show and see other artists work for inspiration . Not only that but links to galleries. Set up a space with all your stuff and put the music on!! ...enjoy.x

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You are not alone. Pain has made me behave badly. I always thought I was a kind, mellow person until RA came along and stole my halo! Don't be too hard on yourself. You can always explain your behaviour to your loved ones . I really feel for you . When you are Pain free, treat yourself to outings doing something that makes you feel good. My counsellor told me to FILL UP MY TEAPOT. And that made sense to me. This is a mad, frustrating disease and as someone said on this site we learn to navigate it. I hope you find relief and hope from all the lovely people here. I know I have. Warm wishes, Rosie. Xx

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You've put into words how I was the other day. I did have a good chat to my boyfriend when I got home last night and he is starting to understand but he did still feel sad because he feels like he's not making me happy enough if I am still having such bad days, but I need him to know that it's got nothing to do with him and it's not his job to fix it, just to understand.

I agree it's important to care for myself and treat myself, I'm going to book myself a massage or acupuncture in the next few weeks and also maybe go out for coffee on my own and just read and relax. I already feel so much better talking on here, it really is a great community to talk to.

Take care! xxxx

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Good on you. Actually that's just what I am doing tomorrow...having a cuppa at my fave cafe on my own. I do it often. Sending a big cyber hug from Rosie. Xx

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Enjoy! I hope you have a fab day :) xx

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I use cannabis oil to help with both pain and mood.

Unfortunately it's not yet legal in the UK for Athritis sufferers so technically I am breaking the law.

It's a risk I am prepared to take as the benefits are worth it.

Hopefully soon it will be legalised for medical use in RA and other conditions.

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We have CBD oil in herbal shops here but it's very expensive and not strong. I actually have a friend who makes it out of hemp plant and she gave me some that she says is stronger and more effective than store bought CBD oil. I've only tried using it the past 2 days but I'm feeling hopeful. x

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Hi there, I can relate to all of what you have said and have gotten some great advice from all the wonderful people that have replied to you, I would definitely pick up the paint brush I do the same but I paint furniture and upcycle vintage pieces it keeps me sane I also find that swimming is the best thing for calming and relaxing I try and swim everyday but I live in Australia so it’s easy for me to do here. Floating in a pool is the best thing I can do for myself. In all aspects of my life. Including saving my poor husband😁

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Thank you! I hope you're doing ok, glad we can relate and all help each other though. I have a pool at my gym, just need to get myself there more often! :P x

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It’s not illegal here at all. It doesn’t contain any of the naughty stuff that’s in grass itself. It’s in my local Holland and Barrett and you can get it online at most health shops now.

Honestly don’t worry. You aren’t breaking the law. X

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I can sympathise with you

Dnt know if it's coming to terms with this condition or because I am not in control either . It's still early days and I have even lost my appetite , accustomed to trials and tribulations though , I'm sure all will improve , my sense of humour helps , and you know what they say about laughter , it's the best tonic , take care and know your not alone .

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I know it gets easier. Hope you can come to terms with it too <3 Thank you x

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I think it's the hardest thing to deal with. You have put up with this horrible disease. I got sent for CBT but I found it useless. My only idea would be Psychological input. I hope you have some refief.

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Thank you! We'll get through :) x

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Hi Savannah. It seems it is my turn now to be overwhelmed by RA! Yesterday I thought i would go on my own to the physio ( 5 months ago i had a bad accident.... a horse stomped on my ankle and it is still healing and i have only just started walking) .... my son usually drives me. Because i havent been able to take any RA meds since the accident i am flaring.

Well the short walk from car to physio with my cane.... sent my pain levels into overdrive.

I came home and lay down and waited and waited for painkillers to kick in.

Today i am stiff and sore ... it reminds me of when i first got RA. I feel so miserable. Depression is hovering... i wish i could cry. I have lost a lot of muscle tone due to the broken bones in ankle.... they took longer than usual to heal. My knees are starting to collapse like they used to beofre methorexate.

BUT i did go to the shops on my gopher and have a cuppa and went to the library and grabbed anything! Too sore to care! Got an audio book and a couple of books that looked okay.

But i know this will pass. My physio wants me to use my stationery bike to build up muscle and yes thats a good idea. I will do it BUT NOT today!! lol.

I am grateful for so many things. My son cooks for me and he has a pain syndrome as well and is very understanding but i am sure he gets frustrated with me just like i get frustrated with him. He doesnt put things away.... and i know its the pain ... but i need things to be tidy when i am feeling miserable. LOL!

The loneliness of RA is hard too. Since getting RA I have written a couple of little books. Haven't done it for a while and would love to do it again. Maybe i should write about someone who has RA and solves a murder!! In her neighbourhood!

'Thanks for your good wishes. xxx Rosie

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Hi Rosie,

What a difficult time you're having! It is totally ok to take each day as it comes and rest up as you heal, try not to be hard on yourself for giving your body the time that it needs.

I definitely think you should keep writing! Don't give up on the things you love.

Sending you so many positive healing thoughts xxxx

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Thanks so much Savannah. I will pick up on writing again. I can type in bed! It was so good when the pain lifted. Took all day. I am in bed now listening to the Nutcracker Suite. I have my 2yr old grandson tomorrow for a few hours. He is adorable and well behaved. It's the highlight of my week. Xx

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You are not alone ! I think we all go through this at times...... I have had complete meltdowns on my hubbie, and bitten his head off at times. He is usually great with me and gives me a cuddle and tries to reassure me that we will get this sorted eventually.............

I feel really guilty at times, and pathetic, as I am not able to do all that I used to be able to do ! My hubbie now refers to himself as Dobby the house elf on occasion..................

Try and explain how this bloody horrid disease makes you feel and how frustrating it can be, to your loved ones, they will never truly understand the pain, and it doesn't help when you look from the outside alright, but it may help them a little bit!

Try doing something you love, watch a favourite film, pop some fab music on and sing your heart out to it, spend some time with a friend who makes you laugh................

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I can relate to all that people are writing here.

My husband has Alzheimer disease, not too badly yet thank goodness, however, he forgets that I am not well and does not understand anything about the disease even though I try to explain to him.

Today I have been really grumpy with him, which makes me feel guilty.

He is in his own little bubble and does not pick up on body language very well.

I may try counselling as it sounds as if it might help, the feeling of loneliness. I have a good daughter and friends but don't want to bore them

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That sounds difficult. I would say never stop talking to your loved ones because you think you will bore or burden them, they are there for you to listen and it does help. You're not on your own in this! Take care x

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Very good advice, and you totally described what's it like for me and my boyfriend! I'm working on things, and it is getting a bit better :) Hope you are well x

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Contact iapt the nhs self referal mental health service. Details of your local telephone numbers are on the website. Or your gp will give you details. Its a good first step to access the right help. I contacted them and after a phone assessment they advise about the next step and which is the best route to go down for support. Good people.

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I saw a clinical psychologist for a 4 week programme which I found very useful. It might be worthwhile asking for some help, either via your GP or rheumatologist.

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