hi guys sorry for the long rant. just had a mental breakdown to my parents that i cant cope with how down and tired i’m feeling anymore. starting to think that it’s not so much the arthritis but more depression and anxiety. i was wondering if anyone had tried antidepressants or counselling to help manage how down i’m feeling about my health.
i haven’t spoken to any of my friends because i don’t want sympathy or attention and i don’t know how to reach out and tell them i’m struggling. people think i’m boring for not socialising or going down town when in reality i feel too fatigued and down to bring myself to go out.
i’ve also been having some intrusive thoughts about dying and what happens when i die and i stay awake at night crying because i’m scared that i’ve done nothing productive in life because of my illness and there’s all my friends who have cool jobs and have been to cool places.
i just feel like life has gotten abit too much for me and i need to finally reach out for some help whether that be counselling or more medication. my joints have been okay and methotrexate injections have been okay so far but i still feel so drained and fatigued which is impacting my mood and making me feel so depressed and down. kind of struggling for options on what to do and how to tell people.
thankyou for any advice
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oliviagodfreyxx
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Firstly sending you some supportive hugs and wishes. Getting your head round this thing called RD (or the unwelcome visitor as I call it) is so hard. It tries and tests at the best of times and depression and anxiety are sadly to say part of it. That being said we shouldn't let our RD define us, as good or as bad as it gets. We all have hopes, wishes and desires in life, with or without RD. Sometimes life takes us on a different path from what we were planning or expecting and we need to 're set the sat nav' so to speak. A life with RD does not mean we are destined to achieve nothing or no hope and it should not stop us from living a fulfilling life. It is so hard when you are young and I know from a previous post you work very hard and have mentioned your friends too. Have you a supportive GP who you can talk to and may be able to sign post you to appropriate services. I attended two sessions held by the NHS in my area regarding coping with long term illness and I have felt it valuable having talking therapy in the past as it is hard sometimes for friends to understand and you may wish to talk to someone independent. Again some relaxation sessions or meditation/ mindfulness. I wished I could wrap you up in a soothing blanket and say please don't think about others having cool jobs and going cool places and your friends may see you as boring. True friends wont judge you and accept you as you are. You are number one in your life and you matter. Try not to think about others having cool jobs and going places, sometimes all is not what it seems. I'm sure you too will have good times ahead, RD will always be with you but you can still live life to the best, we just have to factor in sometimes we may have to rest or take care of ourselves (have a duvet day or a be kind to me day). It's good to reach out, to rant, let off steam and ask for support and shows strength that you feel able to do this. So be proud and know there are people here to support you. Take care x
this just made me cry all over again!! thankyou for your kind words. i’m hopefully booking a doctors appointment tomorrow to see what they suggest. i’m trying to think of words on how to explain to my friends how i’m feeling. my family and people on this app are the most supportive, but on the other hand i feel like i’m burdening my friends or annoying them or feeling like an ‘inconvenience’ i know i’m not but my brain makes me THINK it. i try and plan little trips and days to look forward to but it doesn’t get rid of the reality of loneliness of my friends working proper monday to friday jobs and me being stuck in retail. hopefully a weight will be lifted off my shoulders when i get an answer from my gp tomorrow. thankyou for your help i appreciate it more than i can say x
More than happy to support you, as I know what it's like to be young and diagnosed...all be it a few decades ago now! I had lots of friends over the years and I've found it's not the quantity of friends but the quality of friendship that matters. Two lovely friends took me to a hospital appointment today, they didn't have to but they knew I would struggle to get there and wanted to help and support me. Never do yourself down, my first job when I was going to college was potato picking sometimes on a big potato harvester, sometimes by hand if it was raining. After that I spent 30 years working with children and young adults in some rewarding but very stressful jobs. So be proud of what you do Olivia and don't forget we should work to live and not live to work. Hope you get some good support from your GP and get some little/ achievable/ fun trips and days out organised with some rest and me time in between. x
Hello, although newly diagnosed your post resonated with me. I think Pippy25 has given you some very sound adivce and I am so glad that you are going to contact your GP. Do reach out to your family and closest friends. The majority of those who love us just want to understand what's going on and do their best for us. Just as we do for them. Try not to overthink what to say to others. It will come naturally. Sadly, there may be some loss of some friends on the way, but I bet you know who they are already. To others you will not be a burden. Remember the time will come when they will reach out to you for support, it really is a game of give and take, over the long game of real friendship.
As far as the fatique is concerned. I have just had a physio appointment and am being enrolled in a strengthening and reconditioning gym group - aimed at helping fight fatigue and control muscle loss. Might this be something to consider?
Although, you are going through an emotional rollercoaster, it is clear, in your message, that you do know the steps to take to move forward. Keep reaching out, you never know whose hand will grasp yours and hold it firm. There really is a lot of kindness out there.
thankyou for your advice it means the world and more, as soon as it is under control the better, it gets tiring being in a low mood for days on end, maybe that is why i am so fatigued, but i’ll be sure to check out the gym group, i don’t do much exercise or meditation etc so i will give it a try, my diet isn’t the best either so i need to make adjustments to that too. thankyou for your kind words i really appreciate it x
Years ago I saw an ad for meditation at a local evening class and initially though I can't squat on the floor for starters and any 'ohming and umhing' and I'm off! The teacher who was in her late 60's then was fab and I loved it. She adapted things so I could be chair based ,even putting two together like a bed so I could sort of lay back and meditate when others lay on the floor and I was able to safely get up, instead of requiring a JCB or the fire services to lift me up as I can't do lying on the floor and getting up in once sentence. I learnt so much about distraction techniques and when all this 'monkey chatter' (thoughts, worries, anxieties, fears, overload, stress and pain) was going on, I didn't mind a spot of 'Ohming and Umhing' at times! I can't say if it works for everyone, but I learned some helpful coping skills which I still use now. Oh and a little tip, don't go with friends, do this for you as it's something you have to focus upon yourself and not like going to a fitness class, as you are less likely to go if your friend or friends don't like it and you do.
it would be very helpful to have some useful coping mechanisms. also it would be someone to do on my days off work rather than laying about in bed all day feeling sorry for myself, i find it makes me more tired. i go swimming when i have the chance but it would be nice to do something different like meditation/yoga etc. i’ve always been interested. although i cant squat at all either !! i’ll definitely look into it thankyou so much
Pippy25 has said it all very well. Your not on your own we all have these negative thoughts and regrets .As my mother would say all the money in the world doesn’t make you happy but the little things in life make everything worth while. A cool job brings stress and I bet your friends suffer from anxiety but they don’t admit it.You are very young to cope with this so ask for help from your Rheumatologist or Gp so things can be easier. It’s heartbreaking to read about your struggle but there is hope . Please keep in touch whether your having a good or bad day.
thankyou all of you for your kind words, it does mean a lot especially when i don’t have many understanding people around me over here. i’m hoping i’ll be able to be fit in at the doctors tomorrow, the sooner things are under control the better x
Hi Olivia, lots of support here already so I’ll answer one of your questions.
I was in a bad place before Christmas. I didn’t leave the house for almost three months as suddenly, everything spiralled out of control and I became more and more isolated. It was awful, I have a very small circle of close friends. Unfortunately, I never even heard from one of them and that was tough. It’s changed my relationship with her completely.
Enough was enough and I went for two sessions of CBT privately. I think I made the poor mans ears bleed. He thought that I had a form of ptsd and I hadn’t come to terms with my diagnosis, nearly four years ago now. I would urge you to consider it. Just being able to say what you want to someone else is liberating. Am I back to normality? No. Am I much better. Definitely yes. It was the best thing I did. It may work for you too. I think it’s about accepting that yes, things have changed, but life is still good and everything will be fine.
You’re in an awful place right now. Take baby steps and things will change. The sun is still shining, even if it’s behind the clouds right now. 🌞🌻
thankyou for your reply, i have an appointment today with the doctor so hopefully we can sort something out. thankyou for being so understanding i appreciate it a lot xx
Hope things have improved for you Cwendyn, I am the same with regards to friendships. I've known lots of people over the years, some takers,some givers, some givers and takers, yet it's the quality not quantity of friendship which matters the most as I'm sure you know. I've had some difficult life events to deal with over the years and still have and were it not for the few friends I have goodness knows what I would have done. Things in life can get so overwhelming and having RD and other illnesses brings this to home more so and I feel it is showing strength to stand up and say I need some support in talking or working this out and this can only be a good thing...that and having as I call it my 'Mary Poppins' bag of coping mechanisms, distracting techniques and be kind to myself tasks (the last one is hard for me as i've not been used to doing this up until recently having to care for my late parent(s) which I can draw on as a way of helping myself. I love your comment about the sun still shining, I hope when it appears it shows golden rays of warmth to you and us all. Take care
It must have been really tough looking after your parents. I was fortunate I think, although my father died many years ago, way too soon. My mum was incredible. Rarely ill. Died at 89 after walking to the shops which she did most days. I can’t begin to understand how hard it must be to care for a parent. I really feel for you. To look after someone that had looked after you for so long must be heartbreaking.
I’m an independent so and so. I run a business and the majority of my clients are healthcare. It was one of them, an osteopath that said enough is enough. And she was right. I’ve never even thought I would ever need help through counselling. It was definitely the right thing to do.
Love the Mary Poppins bag of coping mechanisms. One of my team has crohns. She always says she’s in Pollyanna mode. Rarely let’s things get her down.
Thanks Cwendyn, I don't know if this will resonate with others but looking after your parents you start to become the parent to your parent as you have to protect, care, love and it's really tough when you have your own health issues to deal with and a family who basically wont help or support. It's only when both parents are not here any more you become the child so to speak again, but your parents are not here. It's a strange feeling I can't describe and I too have had to undertake some bereavement sessions because I recognised that under the circumstances I had been suppressing my mum's passing to support dad in his grief and when he passed suddenly and very unexpectedly there was this 'void'and recognition that I needed to address this and be able to talk about both my parents passing to someone who was not 'emotionally invested' in me or my parents life (I hope that makes sense). As for my 'Mary Poppins bag, I've had this in different forms for many years. I worked for 30 years with children and young adults and had a practical 'physical' version, which catered for many a need and eventuality, alongside a 'practical coping' one as some of the youngsters in one area I worked in some children had learning needs or challenging behaviours. Then when caring for my parents I'd have the same a bag of physical and practical coping mechanisms, alongside my own bag which has got me through many a difficult time. Pollyanna mode is a good one to have, I'm a bit like my Pippi Longstocking...a bit of an independent soul. Although I don't live with a monkey and a horse! Take care
Hi Olivia. I know exactly what you’re going through. I’m now in my 40’s. I’ve had reactive arthritis since i was 21. This comes with a package deal of a severe eye condition called iritis. Plus i have glaucoma. I’ve been having an infusion of infliximab every 6 weeks for the last 15 yrs. I’ve been going to Moorfields eye hospital for 27 yrs. The consultant told me my vision is deteriorating. I’ve had multiple steroid injections in the eyes over the yrs. Other various procedures in the eyes too. Last August i had steroid implants injected into the eyes. (Very painful). But worth it. The vision improved almost immediately!!! I had been so nervous leaving my flat. Barely saw the pavement. Sorry for going on. The thing is. I’ve been these implants might only last 4-6 months. The Moorfield consultant told me i should go on humira, as the infusion has stopped helping my eyes. The rheumatology staff stopped my infusion & i have been crippled with the arthritis ever since. I feel like i’ve gone back to square one when i was first diagnosed. (But not 21). I have severe, chronic pain all over my back & legs. Walking with a stick. Some days i can hardly turn over in bed. Plus i’m extra moody. Exhausted all the time. Feel about 90!! They’ve told me they’ll try & puy me back on the infusion & give me an extra drug for my eyes. I see people running up stairs & walking with no problems & i envy them. No fatigue. I envy them. I know how you feel.
All i can say is. Don’t be hard on yourself. Be gentle with yourself. Take every hr, every day as it comes. When i feel low. (I’ve been really low recently). I just get a big bowl of soup, chunky buttered bread & watch as much comedy stuff on tv. I get my tablet setup in bed & within minutes i feel ‘improved’. I can be laughing one minute, then feel emotional the next. But mood swings are normal with this disease. Then if i’m up to getting up. I wash my face. That can help. I make a list of things to do & VERY SLOWLY try & pace myself. You feel fantastic when you’ve achieved the smallest goal. I also like to sing. Very therapeutic. Is there a choir you could join near you? I also keep a diary of how i’m feeling & look back to see if i’ve improved. Have you thought of having some counselling sessions? Talking can really help. People do understand how you feel. This is a depressing condition. Not life threatening. But literally a pain!!! (Oh & by the way. There’s nothing like a hot cup of tea & a nice chunk of cake too!) Hope it helps knowing people out there know how you feel. Good luck.
i’m so sorry you have to deal with all that, it’s very unfair. no one deserves to have to live like that!! i have a gp appointment today so hopefully i can discuss with them how it’s making me feel. i am too hard on myself sometimes so going to take the day to myself and see what happens. i’ve never thought about a choir so i’ll make sure to see if there’s any in my area, it sounds like a nice idea thankyou for being so understanding i appreciate it a lot xx
I’m glad it helped knowing someone out there understands. Why not spoil yourself & get your nails or your hair done? Little things can help & make you feel ‘normal’. I really enjoy singing. (Unless someone’s shouting in my ear!!) It’s an emotional thing. You can really let out your frustration. Have you thought of taking up a college class? A hobby you like? Acting or art classes? My brother suggested that to me. Something that can take you out of yourself & you’re not always thing about your health. I’m going to. When i’m more ‘normal’. Good luck with your gp. X
i enjoy photography but i’ve already done a college course in it and the next step would be uni, which i don’t think i’m ready for even though i’m almost 20. it’s something i’ve always thought about doing thankyou very much x
What a lovely post with some good advice. They do say laughter is the best medicine and if it is I want it on repeat prescription! Seriously though you are right in what you say I've had this disease for 18 years and others along the way have crept on board. I think pacing, perhaps readressing things if the day is not good and you had A B and C to do and taking every hour and day as it comes. Joining a choir too is a really good idea and I used to be a member of one years ago. I think I may look into that myself so thanks. I was sorry to read about your situation with your eyes and know of someone who has iritis. So hope you are getting all the support and treatment you need at Moorfields. Take care x
Hi Pippy. It’s always reassuring when people agree & understand what you’re talking about. It feels good to know you’re not going mad!
I woke up feeling crap this morning. The same awful pain. Then i got a lovely hot bowl of soup & bread, painkillers & must have had a lovely few hrs sleep. As i woke up feeling more refreshed. So i thought i’d take advantage & took my Christmas tree down. (Had been in too much pain before!) Plus i hoovered & i felt fantastic that i’d achieved something. Like on Miranda with Heather Small. ‘What have you done today to make you feel proud’? It’s a bit of a silly comedy. But that’s what i need when i’m in so much pain. Now i’m celebrating with a coffee & lovely chunk of chocolate cake!!!
That is spooky as I too was singing in my head before the same song!! I had started the day ok and then a migraine came on so plans A and B were put aside and plan C blanket and sofa came into action until it passed a little while ago. Plans A and B are still on my radar and maybe tomorrow.
Hi. That’s the way to do it. Pace yourself. Push yourself a little. But if you can’t manage something. Don’t beat yourself up. (Bloody painful). Just be gentle with yourself. If you overdo things. You’ll go back to square 1. When i’m ‘normal’ i know my limits. I love to go for walks around old parts of London. But if i walk anymore than 30 mins i have extreme pain, swelling & fatigue. So i stop for a cuppa & take the bus home. Or walk back slowly. Knowing your limits is very important!!
Hi Olivia. Like Cwendyn above, I have seen a counsellor for a few sessions since my diagnosis and found it helpful, both in terms of coping with the emotional rollercoaster and also strategies for coping with pain, flare ups etc.
Just wanted to add that if you haven’t done so already, it might be worth asking your GP to check you out for any other reasons why you might be feeling down and tired, as sometimes there can be physical reasons for this as well as mental. Might be worth checking things like anemia, thyroid, B12 or Vit D deficiencies? A few months ago I found out that I was B12 deficient, and I have found that after a few months of supplements, my mood now seems much improved? Might just be a coincidence but I just wanted to make the point that it is worth approaching the problem from both angles, both physical and mental. Sending you a virtual hug.
thankyou for your advice, i’ve had bloods done twice by the gp ever since i’ve been feeling like this and he said they were the best he’d seen! no problems at all, which is why i was confused and upset as to why i was feeling so fatigued and down, so my mum suggested it might be more than physical reasons than just my arthritis and maybe it has started to get to the point where it’s impacting me mentally. i have a gp appointment today so hoping i can sort something out soon. thankyou again i appreciate it
I've been in that place quite a few times. And I needed help getting out. Speak to your GP and ask for a referral to your Community Mental Health Team. I was offered this the last time and through them went on an 8 week Meditation and Mindfulness course run by the NHS. It was a commitment and I had to face some ghosts but I learned about myself and got a bag of tools to use when depression threatened again.
I haven't had a chance to read through everyone's responses to see if this has already been suggested, but if you are in England you can self refer to your local NHS psychological therapies service without going through your GP first (although I would suggest still booking a GP appointment to discuss how you are feeling) go to the following website: nhs.uk/service-search/find-...
Also please feel like you can contact our Helpline here at NRAS - they can be a listening ear if that's what you need and help with information and signposting to further help and support. We can also put you in touch with one of our Telephone Support Volunteers who is close to your age and living with RA so you can talk to someone who can understand what you are going through. The Helpline is open Monday to Friday 9:30am-4:30pm on free-phone 0800 298 7650 or anytime by email to helpline@nras.org.uk.
You are doing a really good thing by reaching out, wishing you all the best.
You have lots of great advice here about strategies.
I just wanted to say that , just like many others , I have been where you are emotionally due to RA and other things.
I am having counselling and have found that it has really helped. I self referred through the nhs on line via the IAPT website as it was the quickest way to access counselling.
Sometimes you have to reach the bottom before realising how things are . The important thing now is to get support to turn things around. It will happen , things will seem better soon x
thankyou very much i’m glad i went to see my gp today, they gave me a number to ring so will try and sort some counselling out. fingers crossed! hope you are well too x
Hi there, I can relate to your post as if it was mine. Have been diagnosed with RA over 4yrs now and have run the gauntlet with MTX and Hydrocloriq and its side effects but have also been hiding and trying to beat the low moods,anxiety and feeling life is not worth living for nearly a yr when it all came crashing down last August while one day going to work where I tried stepping into the rd in front of a car. Seeing someone in crisis support that day saved my life as I was sent to see a psychiatrist who confirmed I was severely depressed and admitted me for counselling and medication which I rejected to start with but realised fairly quickly I had to engage with them to recover. It was very hard telling the people I loved and cared for what had happened,but found only a warm and caring response from them and not, Oh something else to worry about (that though was mine and mine alone) so yes,it is v possible what you are dealing with is depression which you need to getadvice on and help for and please trust your close friends, tell them what is really going on and let them be there for you. It will make a world of difference for you as it has for me, out of hospital,getting out-patient counselling and managing my RA and life so much better😀
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I learnt so much about distraction techniques and when all this 'monkey chatter' (thoughts, worries, anxieties, fears, overload, stress and pain) was going on, I didn't mind a spot of 'Ohming and Umhing' at times! 
Feel so down 
Feel so down like nobody is taking me seriously!
Come down with something and feel dreadful! 
Total loss of feeling down right side
Ear discomfort and generally feeling poorly and run down.
