RA, Feeling Lousy and Down

Hi all,

My name is Jay and I am a 35 year old male from the UK. I was diagnosed with RA in November and have been taking sulfasalazine since then, which initially made me feel really drowsy, tired and not a lot better, but then went on to make me feel much better. I had a swollen little finger on my right hand and another finger on my left hand which had been painful on and off since I was 17. This was often misdiagnosed with various things, so it was a relief in some ways when eventually it was diagnosed as RA. I had chest, hands and feet X-Rays and the affected fingers showed that my joints/bone in the affected fingers had diminished a little.

More recently for some reason, I seem to be very snappy and not a lot of fun to be around. I have a lovely wife and 2 children (Daughter 3 and Son 6 Months). I find myself having to try very hard to appear alert and happy, although inside I feel tired, unenergetic, lethargic and generally unhappy. Very small and minor issues make me snap - something I am usually able to keep on top of. I have started reading into it and am concerned I have some form of depression.

I am not especially happy about taking sulfasalazine forever, although I have accepted that. There is no way I am taking more medication. I wanted to ask if this is common, or if anyone else feels like this. It's so frustrating that nothing seems to be making me genuinely happy and I feel like I am acting all the time. People at work have also noticed this change in my behavior.

If there is any advice anyone can give me, I would really appreciate it. I don't really want to go to the doctors, as I don't want a record of this. I don't really want to admit it to anyone hence joining here today. I have nothing in my life or any worry's that should result in me feeling like this and I don't understand it.

Jay

14 Replies

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  • HI jtdorset,

    sorry to hear that you are feeling so bad at the moment. Please do call the helpline and have a chat with us if you need to speak to someone. It is not unusual for people to feel the way you do when newly diagnosed. It can sometimes take a while to find the right medication to work for you as there is no one drug that works for everyone. You can call us on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm.

    Hope you feel better soon,

    best wishes

    Beverley (NRAS helpline)

  • Hi jay ,you may feel as if your alone but your not believe me at some point we all feel the same ,it's not a nice feeling,please don't hide how you feel talk about it especially to your family and sometimes meds don't agree with everyone talk to your rheumatologist,and sometimes we do get a little down and may get a little depression because of our health problems and need some help for a short time don't be frightened to chat to your doctor about this and remember your not on your own 😊

  • Hi jay and welcome

    Sorry you are feeling lousy. You are fairly newly diagnosed and although you say you were happy to have a diagnosis, it's still a major shock to the system to be diagnosed with a chronic long term condition. It takes most people many months to come to terms with it and googling it can be terrifying!

    The condition itself can cause depression and certainly low mood, but so too can some of the drugs we use......I'm pretty sure I have read that Sulfa can sometimes cause depression. You could try a search on here and see if there are any posts relating to Sulfa and depression/low mood.

    Could you speak with your rheumatology nurse in confidance and see what she/he thinks? If it is the drug causing the low mood you will need to let someone know so they can change you onto something more suitable.

    No one here is happy to be taking our cocktails of drugs,but for most of us it's a necessary evil......quality of life issue.

    I hope you manage to get some answers and are able to start feeling a little better. With a 3 year old and a 6 month old life must be pretty hectic! I have my 10 month old granddaughter 1 afternoon a week and it totally wipes me out! ( mind you am a bit older than you 😊)

  • When my children were young, I use to lie on my bed after they had both been put to sleep for the night and relaxed body and mind, as best I could. I loved listening to popular classical music. In an attempt to diminish the blues I would pretend I was my own best friend and talk to myself along the lines of how much I had achieved that day and how I mustn't be too hard on myself. It took quite a while to accept my energy limitations and to become self aware of when my RA fatigue was pulling me down.

    Sleep and more sleep was what best worked for me when time allowed. Coupled with the odd ten minutes away from people in work, somewhere nice and quiet helped me to recharge.

    Best of all was a hand made necklace made from child friendly plastic beads brought to my bed when ever I had a lie down and placed over my head by my daughter then aged six. She called them my worry beads. I still have them years later and will never forget the compassion she showed me.

    I sincerely wish you well and may you be showered with hugs to wash away any blues.

  • Hi Jay

    First off welcome to the site.

    I became ill very suddenly, aged 29, with a flu-like illness that lasted weeks, I never really recovered from it, although I forced myself back to work (too soon) after a couple of weeks.

    Long story short I was investigated for a malignancy, at one point when pressed the doctor at the time (a haematologist) told me they suspected gastric lymphoma. I will never, ever forget that moment.

    So a few weeks later, when they had ruled out any form of cancer, I was starting to show very obvious signs of an inflammatory arthritis. I was subsequently diagnosed with Reactive Arthritis. I was so relieved it wasn't anything malignant that I didn't really think too much about the implications of that diagnosis.

    Over the first couple of years it became apparent that it wasn't Reactive. I became depressed. Was it the meds? Was it the RA? Was it stress from work? A little of each probably.

    I got married, we had children. On and off meds (to start a family I had to stop whatever I was on at the time), partly through 'failing' either to tolerate the side-effects or not getting a response or having adverse reactions and rushing to A & E.

    I had two new hips. And more recently a new left knee.

    My children are now 7 and 5 and the meaning of my life, but I know I was depressed when they were babies. Certainly the first one as I was quite poorly and couldn't do the things I wanted to do with him.

    Children are stressful, particularly when there are 2 and very young. Add in a recent diagnosis of RA and sulfasalazine. Yes, there is a strong likelihood of depression IMHO.

    I'd never been depressed before I became ill. I didn't really know at first that I was. I went to the GP because I thought I had RA in my jaw and wanted an opinion. He took one look inside my mouth, noticed my cheeks were scarred and realised I had been grinding my teeth so much I'd been causing the jaw pain this way. He told me to go away and stop worrying. 🙄

    I went away and carried on worrying. And self-medicating. Eventually I cracked, went to a different GP, and asked for help. I was signed off work for two weeks and given antidepressants. I've never been back and that was 13 years ago, roughly.

    If you bottle it up and try to hide it from everyone around you, there is a very good chance that you will reach your limit too. Again, IMHO.

    I went to see a community psychiatric nurse for a bit who told me not to go down 'that route' because of the stigma attached to mental health issues. I kid you not.

    I also saw a psychiatrist at the behest of my employer. He diagnosed me with moderate depression (which is fairly bad) and sent me for cognitive behavioural therapy. That helped a teensy bit, but after a few sessions the therapist told me it was no wonder I was depressed and that she couldn't do much more.

    Things are good now though, like I say my children mean the world to me. I was their main carer for a while until recent back troubles stopped that, but that's another story.

    I'm not sure what help I can offer as I never really found any myself, apart from time. Time to adjust, to a new life, a new health condition, new children.

    Try talking to someone, even if only one person - you need an outlet.

    I hope I have at least given you a perspective on things, and feel free to ask any questions (PM if you prefer).

    I feel your pain.

    Ade

  • Hi Jay and welcome.

    Please don't be so hard on yourself. Its OK to feel down, you're having to cope with a lot. I'm doing a mindfulness course at the moment which is helping me to cope, it's giving me the tools to face life's difficulties. If your interested I can give you the details of the free online course. If it's not for you, you will find loads of support and good advice here.

  • Dear Jay........ I had very much the same reaction to sulphasalazine, it seemed to totally change my personality and I found myself overeacting to everything, falling out with friends and generally feeling very depressed. As soon as I came off them and once they were out of my system, went onto something else......I think it was hydroxychlorquine.....all those feelings went. So please talk to someone about an alternative drug and I hope you will feel much better.

  • You are normal! Join the club of people who have had a diagnosis of a long term illness and major changes to how they have to look at life.

    You need to explain to family that it is not them that is making you irritable, but the disease, and ask for understanding when you are snappy. Unless you are open about it, they will creep around you wondering what they have done.

    Ask for help. No-one else knows what you need, no-one is a mind-reader. We all, here, understand how difficult that is especially when you have been the "one that does things".

  • High JT welcome.

    I am so sorry you feel like this but there is no shame in feeling depressed it is a disease. I really suggest you give your rheumy team a ring rather than struggling alone and beating yourself up for being miserable. It may well be a side effect of the medication in which case they will be able to do something about it. I can only stress you are not alone. Try and talk to your family they are probably struggling to understand as well.

    If it helps any I take prednisolone and some days I am a bitch.!! But yours sounds deeper please give your team a ring.

  • Hiya Jay & welcome. Your experience is a bit of a tricky one for me & one I think I can empathise with. Whilst the disease itself can cause us to feel in a low mood, even depression being a chronic disease from a recent experience it can also be due to meds. You see why I think I understand is I recently had sulfasalazine added to methotrexate & had to reduce the dose to half as I was experiencing for the first time a mood so low it bothered me. I also had nausea which has eased since the GP prescribed an anti emetic & my lower dose has helped with both that & my mood. I chose to mention this to him & also my Rheumy nurse as I thought it was important enough to do so & I'm pleased I did. I wasn't 'labelled' or thought of negatively, quite the opposite, it was recognised that as I'd had no other newly introduced meds that this was most likely down to SSZ. It is a side effect & whilst considered rare it is known.

    Please, don't concern yourself about being considered to have possible mental health issues which may or may not be down to meds or the disease itself... it's been a heck of a change for you, long-term unexplained pain, recent firm diagnosis, hefty meds, change in how you've been feeling away from your norm, fatigue all would test anyone, even the strongest of personalities. Please do speak to someone about this, it could be as simple as my experience & either reducing your dose or a change in treatment may be all it takes to change things for the better. But the first step is that you've recognised that things aren't as they should be. There's every chance if it does prove to be your SSZ that a different med will suit you just fine & be more effective, it's better than the alternative for sure, I have personal experience of being med free with this disease & it's not good.

    Keep talking here, you'll find you're not alone in feeling as you do.

  • Well done Jay, it;'s early days for me, and I'm a very positive person too... but I love exercising and the sense of achievement, especially setting goals like you can on Strava. Good luck.

  • I just wanted to reply to say thank you. I wanted to reply at the time because the amount of messages I got back and what I took from them was amazing. They were so heartwarming. I read all the new threads daily and feel like I can begin to contribute now. In an update to my previous message and I am pleased to say I am through the other side. I actually had a chest infection, with took away the affect of the medication and it coincided with a flare up and it was one of the worst I have had. The result of your messages was that I opened up to my wife and also work colleagues about how I was feeling and how I felt this had affected me and also took the time to explain RA in greater detail, which I think was perhaps a shock to my wife and colleagues. Being open about my feelings, exercising and increasing sleep really helped. I was disciplined in my sleeping patterns and slowly felt better. Today I feel great. But the responses from this site were a major major contributor. So thank you.

  • Jay really well done! A chronic illness feels like a lonely place until you open up. Your reply has brought happy tears to my eyes.

    You also know from this experience that any hit to your immune system (a chest infection in your case) makes you feel horrendous. The experience is so magnified compared to before without RA. I have found this and so when I do come down with a cold or something I take the time I need to get better and am kind to myself.

    It's such an adjustment to life but you've made a fantastic step by being honest and open with those around you. I really hope life continues to be good to you!

    T x

  • Thank you. Again, such a lovely response :-)

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