I truly don’t know what is a matter with me right now. I am usually a bubbly positive person but this last month I am slowly but very surely losing the motivation to do things. I have recently been treated for low vitamin D and a flare up. The pain is better than it was but still having to take maximum amount of pain meds to function. Saw my Rhuemy nurse around ten days ago and had a steroid injection for flare up. Still finding it hard to walk with pain though. I currently work full time but am on annual leave this week thank goodness. I am feeling so overwhelmed at even the thought of going back to work next week. I am feeling like I am losing me. It is taking all my energy to get dressed right now and feeling very low in mood. So not me. Do I need a kick up the backside to snap myself out of this. Not sure if it is the pain wearing me down or me overthinking everything or grieving a bit of my life before diagnosis. I am so fortunate that I don’t have severe RA and for all I do have. Right now though I am struggling to find the energy and motivation to get through each day. I’m feeling exhausted and so unhappy right now. Just don’t know what to do with myself. My Rhuemy nurse is going to speak to my consultant and get back to me. I am so thankfully for the care I get from my health care teams. I feel truly lost right now. So sorry for such a miserable post. Just hoping writing how I am feeling will help just a little. Thanks for listening.
Feeling so low at the moment: I truly don’t know what... - NRAS
Feeling so low at the moment
Misery loves company 😜I too was like this last year RD wasn’t under control and I stopped going out or looking forward to anything. Yes I think it suddenly struck me that my body my brain had really changed. Mobility was a big problem and today I’m as stiff as a poker limping away. I’m lucky I don’t usually get much pain but hate the fact that walking my dog is a struggle 🥺 . The turning point was the fact my hubby was struggling to help me and I realised this disease was effecting him as well and decided I wouldn’t drag him down with my dark mood as well. We all need to moan now and then especially with people who understand. Sounds like your team are on the ball I hope they can help.
Hope you feel brighter soon xx 💐
Hello, being in pain is very tiring and depressing, once the pain is under control, you will feel better, this site offers a lot of support,
Speak to your GP about the depression, some ant depressants such as duloxetine aare used for fibro myalgia pain and low dose amitrypliine is used for nerve pain x
Good place to voice your emotions as a lot of us can resonate. We are not robots and have those up and down days. I had to up my mood vitamins - B and starflower to help me, not telling you to do this just find that thing that can give you the boost you need. Try and find something to take your mind away from the pain too. Speak to your drs or consultant to see if they can recommend something. Take care and keep us posted. Wishing you well☺️
It’s good to get your feelings out. We are here to listen.
Constant pain is very wearing.i hope your rheumatology nurse gets back to you soon.
The words I don' recogise me anymore is how I am feeling too. It is a grief process of acceping and reviewing how you need to adapt to the RA and then move forward at some point. Every time I know i have to go back to work I almost dread it as l know I will get so tired and the fatigue.
We are all here and we all have these days I'm sure xx
Try not to despair things will improve but it can take time.
As those above have said readjusting to the changes thrust upon you is hard but it’s necessary. You will find that there will be small steps forward from where you’re at now and rejoice in those. Try not to dwell on what you feel you’ve lost but focus on any small positives you can think of.
Meanwhile mope or rant on here to get the support you need.
Although I’m in a better place right now I can sympathize with how bad you feel. It’s not you, it’s one of the symptoms of RA and it can make you feel systemically awful.
I know that feeling of wondering if you’ll be able to drag yourself into work when you feel so terrible. If your RA is not under control, or if you’re having a flare, apart from the exhaustion and pain you get, you can also feel very low and ill.
It sounds like your RA is having a severe effect, so don’t be afraid to let your rheumatology team know how bad you feel. No point in maintaining a stiff upper lip if you are struggling to cope. It might be a change in med. is needed, for instance.
Meantime try to go with it and rest up a bit if you can. Take a day at a time. The chances are this is just a bad patch, and won’t last forever X
I understand your feelings, Summerrain14. I hope your cloud lifts soon.
In my experience, (this learned from a friend) if you can do 1 new thing at a time, even something small, but keep adding to this self-care, in time you will hopefully better.
Have you a list of special things that give you comfort? Time to read, favorite music, special foods, a walk in a special place, an art museum? Make a list of 5 things, 10 things, that being you joy or comfort and try to do 1 every day. Just loving yourself,flaws, pain, disability and all, enough to give self-care is important.
Our journey makes us who we are. Despite the challenges I've had and the terrible pain I live with, I know I am a better person as a result. I
Take care, Summerrain14. I wish you peace and happiness.
I have times like that too, usually when RA is active for too long ie I adequately controlled.
So it does seem to be normal with RA. Pain wears us down too. However, I hope your rheumatologist can suggest a plan to tackle this since you need to work too. You are right to share. 🤗
As others have said, this is a good place to let it all out to people who understand how you are feeling. We all have low spells with this this disease, I had a wee bubble to myself a few days ago too, but it will pass and hopefully you get a better care plan soon.
Do let us know how you are getting on ?
It’s not you, it’s the disease: can make you feel like you’re wading through treacle or been hit with a sledge hammer at times & so unpredictable. I spent first year thinking I’d get back to old me & banging my head against brick wall basically, it takes ages to acclimatise.
I think depression goes with it; it’s a lot to deal with & fatigue is the worse. Don’t forget GP too if that’s the case, mine were lovely, also referred to cbt course for chronic diseases. Not a cure but any little bits that help you cope on bad days can help. Sounds like you need some time off sick if possible for pain & much needed rest. Full time work is a big ask with this. Take care, hope things improve soon x
Reading your post makes me think how much of it sounds like me. I am so very tired most of the time too. When I wake up in the morning, after a good eight/nine hours sleep, all I think is just how very tired I feel - I have to make myself get out of bed. I also find it difficult to walk and I come down the stairs sideways one by one and go up one by one. I thought it was because I injured my right foot twice just before and again after Christmas (as you do 😒) as it swelled up very badly but then soon after, the left one decided to join in too. At first it was thought that apart from the injury, the Amlodipine I was on for high BP was to blame but I am beginning to wonder now if the RA is involved in this conspiracy somewhere too as it has become red with a rash - it should be getting better by now. I hardly ever go out shopping now - my husband does most of it. The only times I go out are for medical appointments either hospitals or GP. I seem to have become another person and I don't like it. I resent this RA so much and I am terrified that I will get a flare as bad as my initial one last June/July where my hands swelled so badly and like others on this site, were excrutiatingly painful. It has changed my life and I think made me a little depressed because of it.
I feel for you, feel for everybody on here who is having a hard time with this disease.
I think depression sets in very easily. I was of very low mood and anxious coming to terms with this. The gp suggested anti depressants which I refused initially because of pride really. I wanted to believe I could beat this dark feeling naturally. I couldn't. I accepted that and have been on Paroxetine for quite some time now which has helped.
Being part of this amazing supportive group of people is also an anti depressant medicine which helps too! I try to focus on keeping my mind clear of negative thoughts but it's not easy when in pain and exhausted. It is an extremely frustrating disease. I feel like a prisoner inside my own body sometimes. Its not just the immune system that's being suppressed, everything is! Life is in slow motion now mentally and physically.
Do whatever it takes to feel better.
As summer rain has said, writing down how you feel can hopefully help to release those feelings. x
Very well put Shalf
Do you ever catch yourself looking at people and feeling envious of them because they look so fit and healthy. I find myself thinking I wish I could be like that again. What upsets me greatly is that I used to love gardening but now I can't do it because my hands and my thumbs start creating havoc when I try. I also used to love driving my car but I can't do that now for the same reason. Oh well, maybe one day.😒
Sending a virtual hug 🤗 I hope getting it off your chest helped, fatigue is pants ☹️ hope you feel better soon.
I'm wondering if your flare wasn't properly managed by the prednisone? There are so many aspects to this disease and its treatments, and certainly grieving and despair. Just three weeks ago I was very down, very unmotivated, actually frightened of how low and inert I was becoming. I finally reached out to the rheumatologist, had steroid injections in my knees and in my thumb, and a tapering dose of prednisone. Within three to four days, my interest in life returned, my pain lessened, my mobility increased, and I began to look forward to the future again. I firmly believe that for many of us rheumatoid disease impacts our brain functioning and our moods. I'm being switched to another biologic and I begin tomorrow. I say all of this Summer, because, looking back, I was functioning about a 3 out of 10 in my life, and the prednisone brought me back up to a seven or eight. Talk with your rheumatologist, there is hope. Thinking of you, and sending best wishes for some speedy relief.
You are not alone. Ive been feeling very low and not my usual happy go lucky self. Its affecting home life too. Its easy for ppl to say it will get better especially if they are not going through something similar. I find going for a walk or doing something you like helps a little. You are not alone and hope you get some of that mojo back. Thinking of you xxx
The constant pain is exhausting, then you start to feel low, then it starts a downward spiral of misery and loneliness which is difficult to shift by yourself. That was me too last September, October and November.
It’s horrid. It isn’t me now though. I had three CBT sessions. I wasn’t convinced it would work, but it did for me. It might work for you too.
You mention you’re grieving the life you once had and that’s probably the issue. Apparently I have a mild form of PTSD as although I thought I’d come to terms with this, in reality I hadn’t and assumed nothing would significantly change in my life. To be fair, it hasn’t really. I just end up cancelling things last minute which made me feel even worse.
I would go back for a session in a heartbeat. Might be worth a shot?
Hi ..l feel exactly the same very low mood and not very positive just come back from my holidays and don't feel any different...the pain really wears me down..l had the injection before l went away but doesn't touch me now..oh for my life back..anyway am seeing the consultant in 3 wks ..chin up xx
Great you felt you could share here, it really does help to write things down and put it in some kind of order. It is good to hear you have started treatment for vit D deficiency. I was found to have that last winter, on top of the RD... I too felt in so much pain and depressed, but, after a couple of months, once the vit D really got back to some normality, I couldn't believe what vit D deficiency could do to the body!! so much pain! I did begin to pick up and this winter, although I still have bad days, I can feel that my body is happier as is, on the whole, my emotions. (still on "over the counter" vit D each autumn/winter, as soon as the sun disappears for most of the day). There is definitely a grieving period for the life we have lost, and that hits periodically, depending on what has been happening in our lives, and having vit D deficiency on top will exacerbate this for sure! Good that your medical team are sympathetic and going to help you.. that is precious! I really hope you find relief in the coming weeks... One other thing I try and do, is each morning when I wake up try and think of one thing I did/do right, that others appreciate about me, and what one thing can I do today to help someone else. Still don't like the "new me" and it doesn't take the feelings away, but it takes my mind off all that I am dealing with for a little while, and makes me realise "I am still useful". Take care and I hope the coming weeks find you growing stronger. And as other comments, if things don't improve, have a chat with your GP as well for help.
I think you are describing fatigue. There is a leaflet by NRAS ‘Fatigue Matters’ good for you and your family. I too was very very low and I self referred to the mental health services in our area and was accepted on to a group therapy talking course for 10 weeks.. it was helpful.
I found once my RA was under control not only my pain lessened but so did my low mood, inability to think straight and total lack of energy. These are caused by the disease. I’d sit and sob in a chair. Those days are gone.(more or less) It took 5 years to get an effective drug for me.
Unless they have classed you as not ‘severe’ don’t classify yourself. It is a progressive disease. Not being able to walk without pain sounds severe to me.
I wish you the best treatment. Other drugs than metho are available. It did nothing for me. Keep going. X
Unfortunately I think you've hit the nail on the head with the grief bit.
It's a loss of identity as each new 'can't do' appears and you come to terms with it. Problem is, coming to terms with things takes energy and clear-thinking, the very things we lack most in the peak of a flare. I know my mood is down at present, it had been a liitle better but rock bottom again today and so much of that is tied up in the fact I'm still working through what I can't do. I just need to work out what I can!
I love OilpainterAizonaUS's suggestion of a list of things that do make you feel good, it's a positive way forward.
A number have mentioned anti-depressants and they may be worth a go. They don't have to be long term but can just give your brain that boost to allow you to think straight. I wish I could take them (had them for two bouts of horrendous PND and literally wouldn't be here today without them, scary stuff) but they affect my heart and the GP has given up . . . in the nicest and safest sense. But then, I'm quirky to put it mildly.
CBT also mentioned above and worth a shot. It could give you life-skills that you can keep coming back to. The vicious circle (cycle, depends what you read) makes sense of so much. I teach it to PND mums every week . . . just need to apply it to myself a bit more!
Trust the sun peaks through the clouds for you soon - can you spot a crocus or daff trying to flower? they put a smile on my face.
Eventually you learn to accept the new identity but you need to feel
Better first.
I’d try talking therapy before drugs myself. Gosh this is hard isn’t it? You need help don’t try and heal yourself! Ask your gp. Get support.
Ha! And here's me thinking I was responding to the original post. You obviously saw a little more of 'me' than I thought.
I agree I need support . . .on so many fronts. Main carer for my mum (82 yesterday) and she is due a hip replacement at the end of March. Should have been September 2018 but they found a heart murmur at pre-op. This in turn led to a diagnosis of an 'odd' anaemia which turned out to be a NHL. Six sessions of chemo agreed, had four and contracted shingles very badly. Finally had the heart sorted via a TAVI (leave you to work that one out!) which they think caused trauma and she ended up with an aortic dissection. Conservatively treated, tear still 15mm long . . .
Eldest gearing up to finals, youngest in A level year but sruggling with mental health and husband falling apart trying to support us, work full time etc.
I'm the glue that holds it all together but just not managing it at present.
MTX jab last night. Today is yuk!
Thank you for responding - I need a bit of nagging to do something.
I seem to go through the same thing every year and this past year the physician asst mentioned S.A.D. seasonal anxiety disorder, and it then made sense to me, winter season is hard on those with pain and R.A.,we just want the warmer weather to feel better, so they put me on a low dose antidepressant along with vitamin b, i also took a weekend away and left all my stressors at home and focused on just me, when i returned home i felt so refreshed and new and back to being me, its a good start to recognize and being able to talk about how you feel, hope the comfort in knowing you are not alone and brighter days are ahead, hope i could ld be of help, take care🤗
I get S.A.D but the other way round any kind of heat or humidity makes my life unbearable. So look forward to winter 🤷🏽♀️🤷🏽♀️
I can't believe that reading what you are feeling like Summer rain 14 that this is how I have been for the last 2weeks! and didn't know what to do. Though I don't have any advice thanks for say how you are as it how I'm feeling and I didn't want to ring rhuemi nurses as I didn't think I should (I've never rung them) as I thought it was just me and that I was just moaning. I don't have RA as bad as some and the only exercises I can do is walking but walking can be an issue at the mo as I get extremely fatigued. GP says take tramadol until it passes so is this what you all do? I take Hydroxichloriquinne for my RA and paracetamol but at present my fybromyalgia in my shoulders and back is bad. I don't want to waste any one's time as I know the nurses are very busy but it does help to have an outlet to get it out of my system.
Well this has now turned into a bit of a long post but by heck it feels good to speak up
I hear you Tiggiecat.
I have both. RA which is currently very active and Fibro too. I hate feeling so weak, fatigued and practically immobile especially today.
My gp suggests physio for Fibro but my body seems to be rejecting exercise of any form at the moment. It is so difficult and scary being a patient of incurable diseases. When in severe pain I wonder what they will suggest next to help.
Keep expressing yourself it's good to let it out and everyone here is eager to listen and support. x
Aww Tiggiecat I so understand. I did hesitate before sending my post as was thinking I didn’t want to burden others who have their own daily battles to face.
I am so pleased I did as the support and responses have helped me so much. Knowing it has helped you a little too makes me so pleased I opened up about how I am feeling at the moment.
I would strongly encourage you to contact your Rhuemy nurses and not just ride it out so to speak as your GP says.
Your rheumy team need to know what is going on for you so they can help.
The steroid injection has helped me a little but has also highlighted to me and my rheumy nurse that a medication review is likely to be needed.
You speak up as often as you need to. This forum is such a great place to be for support and for us to feel heard.
Let us know how you get on won’t you? x
Tiggiecat always share the good and the bad but don’t suffer if you know your struggling then you need help. Last year was a bad year for me and I left it 6 weeks before I asked my clinic nurse for help at this point I was on my knees... oh boy did she tell me off ... I was told i shouldn’t leave it and that’s what they are there for. If you don’t hear anything soon do chase them. Hope you feel better soon
Summerrain14, I'm there with you lost motivation to exercise, especially since my Pip review in which they took great delight in taking money off me for trying to exercise. Part of me thought what's the point of doing that? Sometimes I do think back to when I was working, but you know what, deep down I'm still me and I'll never let RA take that away from me. It can have the rest but not that! It's mine! 🤣 🤣 Keep trying and keep challenging yourself, remember baby steps and never forget you are always loved but love yourself too! You are an amazing person with a body that's doing its best to cope.
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