Running out of steam….: I simply just don’t know how I... - NRAS

NRAS

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Running out of steam….

I simply just don’t know how I continue like this for the remainder of what has become my miserable existence of a life.

Sorry if I upset anyone but I’m 2 years in and cannot bare this forever! The drugs they make us take are destroying, I am exhausted with it all, so tired of it now.

How do I keep going, so tired 😪

37 Replies

I have had many chats with hubby like this in the past year and even Tuesday night sitting by a log fire he asked how I was and I said I just dont get why 3 years in I dont feel I have any part of my life back yet.You are not the only one and it is hard and very lonely even with friends and family cheering you on or not.

If feeling like this its great you have come on here. I said recently I think I would have prefered at the start of the treatment an IF moment ....if the drugs dont work it could take time. I was told take the MTX and hoping in 13 weeks you feel better.

Many on here have done well and live good lives but a few of us it takes longer than the norm and this means days swinging from highs to lows. If anyone had told me 3 years ago apart from Oa you will have RA fibro and asthma and not working and not being a social butterfly, I would have laughed like a drain.

So what have I done I have spoken to my GP and Ra team ( If you have good ones use them) and I have also called the NRAS to talk out options and whys. Called a good friend to cry. Or come on here to rant.

I have read a lot, researched a lot and questioned a lot.

Find something to grab on to each day. I bake if frustrated. Today was almond and cranberry scones.

Walking even if 100m as it hurts is still good for the soul.

I dont know what the answer is as I am still searching for Narnia but we WILL get there x

in reply to Deeb1764

Thank you for your time x

Green230461 profile image
Green230461 in reply to Deeb1764

You just need to hang on and celebrate the little wins

rabbits65 profile image
rabbits65 in reply to Deeb1764

They sound delicious !!!! Almond and cranberry scones . Well done you . 😂

rabbits65 profile image
rabbits65 in reply to Deeb1764

They sound delicious , Almond and cranberry scones , well done you 😂

There are no wins. I watched my mother suffer from this for years, ignorant I was of her battle but now I know it inside out! We all chat on here with our hopes, some seem to have success stories and I am very happy for them but right now I don’t feel my story will end well.

I say that because I don’t have a partner to fall back on, I have a mortgage to pay with dependants to consider.

I feel so unwell most of the time, I even complained in a shop because they only had a self serve option which I didn’t have the energy for! That’s not me, it’s an exhausted me & in my opinion no meds really truly work I even question my diagnosis because I never have any inflammation issues yet feel awful.

RD is such an ignored disease, still have to drag yourself to work etc, just a few achey joints right?

Chockyuk profile image
Chockyuk in reply to

I can totally empathise as to how you feel and I’m so sorry this is happening to you.

I’m separated and living on my own since my son has gone to Uni. I have bills to pay, so not working is not an option, plus I’m 59, so not exactly a spring chicken.

My RA was under control for a few years, but now it’s spiralled, inflammation levels really high, despite having a steroid jab a few weeks ago and being on Mthx, been like this for months now, having to take time off work as I couldn’t get out of bed, plus extreme bone crushing fatigue. Yesterday I walked the dog and went to the shop, I spent the rest of the day exhausted on the sofa from the exertion.

I have no words of wisdom for you I’m afraid, apart from, I hope things get better for you.

You say the meds haven’t worked for you? Have you been offered anything different, or just the usual Mthx etc?

It is really hard there is no denying that.

Sorry you are having a prolonged period of feeling absolutely crap, you've alot to cope with whilst feeling endlessly tired and in pain ; I've come to the conclusion that time is still going to march on whether I try and fight it, try to accept it or try to ignore it. How do I want to live my life ?

I know its not as basic as I've stated but I've kept on the fight and im getting help now with my rheumatology team. I know you are tired but maybe contact your rheumatology team for some help?

Like you I had a family member with RA and I saw what it did to her, I look at it that she was never on the type of medication I'm on, and im fortunate for this.

This disease isn't fair, everyone is different and on the days I feel dire I don't want someone telling me to contact Drs, or say it will be OK; I understand how you feel, ive found nothing will change for the better unless I make it. Most days I havent got the energy but I've got to keep trying.

Maybe contact NRAS and get someone to advocate on your behalf if you've had enough, people care about you, you are not alone, we understand what its like to run out of steam and keep posting here x

in reply to Marionfromhappydays

Thank you, I know am not alone with how I’m feeling. I feel so unwell and not with swollen joints and pain- just feel exhausted is this normal?

I feel very alone and actually am. Not that I want to do anything stupid I won’t, my personality is to fight but I feel so tired.

Marionfromhappydays profile image
Marionfromhappydays in reply to

I have days when I am exhausted but I wouldn't say everyday. I'm not working at the moment so that has alot to do with it

Same. I can’t imagine having to work at this point in my life. I had to retire at 57 as I was no longer able to work. I really need to work for financial reasons, but can’t.

madme1 profile image
madme1 in reply to

Believe you me Hidden, RA truly lives up to its name of the sleeping sickness. It's especially hard in winter when you just want to curl up and hide from the rest of the world. Try to make sure you're getting enough vitamin D as having low bit D levels can make you feel awful. If you want to cry then have a bloody good cry, I know I do often enough! 😊. Try to turn your mindset to do even the smallest of things. Have a goal, no matter how small and make it personal to you. Posting on here is an achievement in itself, and I've found so many good supportive friends on here. You are not alone in this.

Oh I do know how you feel and echo it at the moment. Until lockdown I was working and forced myself to continue doing so as I thought it was good for me. Retired at the start of lockdown and live alone. My biologic then failed and I tried another along with MTX, neither of which have helped. Feel totally exhausted and have a conversation with my dog about whether to bother getting up each morning. Obviously I do as she has a complicated drug regime that I have to follow. Am waiting for a f2f with rheumy which he promised but am losing hope of ever finding anything that works for me. This disease is so isolating and I want just to be able to do the simplest of things without agonising pain and constant fatigue. Oh well, bring on the Tunnocks tea cakes! Even those Ocado has stopped stocking. Am so grouchy I even complained to them about that. Am definitely turning into an old curmudgeon. 🥵

Of you ever need an emergency supply of tunnocks im here ready to post 📫 😅

CripLady profile image
CripLady in reply to Wobbies

I saw them in the Co-op last time I was in… they have a dark chocolate option now x I was going to post a picture as I am aware of their cult following on this site 😂 Though that may have been the biscuits actually….

Wobbies profile image
Wobbies in reply to CripLady

Oh yes wafer biscuits too are nice but not as good as a teacake.

madme1 profile image
madme1 in reply to Wobbies

Yes but one that refuses to accept things just because you're told to do so!

Chockyuk profile image
Chockyuk in reply to Wobbies

I’ll have to Google Tunnocks Tea Cakes! 👍

I’ve been feeling the same. I work for a school, so am on half term this week. I had a my second steroid jab in 3 months beginning of October, so I thought I’d make the most of this week off and arranged all sorts of nice things with friends, but last weekend the stiffness suddenly started creeping back in my knees and hips, plus the exhaustion, so I’ve had to cancel all my plans. Like you, I get up for my dog, even taking him out is difficult, I try to avoid the park during the peak times, as I walk so slowly, like I’m 90 years old.

I feel life is passing me by 😔 and as you say, this disease is isolating as I can’t join in anything at the moment. I’m hoping it doesn’t get worse, as I’m due to go back to work Monday 😖

Gosh, I’ve just realised my post is very depressing 😂

I hope things change for you soon, but you have all of us on here as support. 💕

Wobbies profile image
Wobbies in reply to Chockyuk

It is all so frustrating isn't it.

RA is an absolutely awful disease to learn to cope with. It took from late summer 2015 till last summer for long lasting relief to become established for me; short bouts of relief in between when a drug would work for a while.It was exceptionally disheartening. Divorce thrown in.. lost a huge amount and had to live on savings till ESA granted after Appeal… also older than State Pension age but that too was moved farther and farther away…

I still have to pace myself, fatigue and joint damage being issues. But I posted yesterday on promising research that could well bring a cure within years.

I would think that because none of us is identical even if closely related as in mother-daughter, that it cannot be assumed that you will experience RA exactly as she did.

But this community is an excellent place to have a good rant and find others in the same situation. I hope it helps you. 💐

Awww Hidden, the fatigue is one of the most awful things you have to cope with having RA. At the beginning of my journey and start of flares I was sleeping!! 14 hours a day at one point.

That is the real truth. I found at one point due to a problem with my ankle that I did have to knock on doors. I am quite shy and not in my nature to do that, but I had to, to make them listen. From your post I can see it is not the only concern you have, as you said you have a mortgage to pay and dependents, so that must be stressing you out ad adding exhaustion. I hope you have a good Rheumatology team behind you, please get in touch with them, I know it is harder at the moment because of what is going on, or get in contact with the rheumatologists secretary or nurse helpline if they have one. To give you some hope I was put on a host of drugs, that was not controlling my RA, but then I was put on a biologic and am now in drug induced remission. Sending you a big hug x

Hi, I feel so sad for you. I have been there, more than once in the 24 years of living with RA.If the medication is making you feel so bad, then you must ask for it to be changed. The goal of any RA meds is to improve your life and if they don't do that there are a whole list of others you can try. I have tried many, some worked for long periods, now I have one that brings so much relief and life is almost normal, despite the allergic reaction! Even for me there are other drugs to try. It is a bit of a roller-coaster, but you will get there.

You have choices, the specialists advise you what they think you should take and do, but you can ask for alternative medication.

I hope life looks brighter soon.

Some days I feel so exhausted with it all that I don’t know what to do. All I know is that I have a God who knows my struggles and no lean on him when I can’t do it myself.

You say you have fibro. Do you think it is possible that you have ME as well, as the two often go hand in hand? I do & ME makes anyone exhausted. When I first had it, I would often sleep all day. When my husband came home from work or my son from college at about 5om they would find me asleep in bed & assume I was having an afternoon nap & I had to admit that I hadn’t got up yet. This went on for about 3 years & then I developed a big hobby of making greetings cards to sell for charity & gradually the tiredness crept away. I have so many illnesses now that it is unbelievable & I seem to collect more as the years go by but life is short & there are so many things to do that I keep going in the hope of doing, at least most of them. At present I am writing a book. I know it is hard but it is possible to bear it especially with hobbies. I have prolapsed discs, degenerative disc disease, gout, migraines, breathing problems, sleep apnea, deafness, hiatus hernia, both knees & hips need replacing and other things as well as the ones you have. I know it’s hard but please try to keep going.

So sorry to read your post. RA is a b….. horrible condition for many reasons. However we have to learn new ways of living because what is the alternative. I’ve found ways to help me cope, my amazing husband, family, friends and I try not to focus on how I am feeling or I would become overwhelmed. I hope you have people in your life who love you and if so try and keep going for them, focus on the positives and make sure you have good advice, and good pain relief.

I really wish you well.

Get back on the phone to the medics and tell them how bad you feel, would be my advice. They are there to get you right. I hope you can summon up the energy to insist.

Oh they’ve left the group, that’s sad, I hope they get some help in some way 😞

I'm in the same boat, endlessly waiting for appointments, pain 24 hours a day. Only my wife keeps me going.

For those who aren't aware - if an avatar is grey & blank like this one & 'Hidden' where the username would be it means that they have deleted their account. In this case it wasn’t locked to only Community members (there's no little padlock next to the replies count) so they'll still be able to see replies left after leaving. In this case anyone can read the post. This member can't reply though unless they join again. If there had been a padlock they wouldn’t be able to see any replies.

I was diagnosed with RA 53 years ago!! and I am still here. I was 23 at the time and thought it was the end of my lovely life. But that was not true. There are so many new medications every year and I have tried quite a few some work and some don’t. There are so many things you can still do that give pleasure especially holidays and grandchildren. I have now been diagnosed with severe heart failure but still enjoy life. There are so many people with all sorts of illnesses many are not obvious. I hope you can try to see the good things in life and good times with family etc. I wish you the very best.

It's so comforting to be able to come on here and speak to people are in a similar situation. I am awaiting an emergency appointment (5 week wait, which is fairly short compared to most trusts apparently). I'm in such a huge amount of pain and living on codeine and it scares me to see quite how many tablets I have taken over the past month. I was in remission and managed to reduce my medication for two years but after a particularly stressful time, I am now in a lot of pain every day. Aside from that, I feel an overwhelming sense of disappointment in my body and how it has let me down. I do know, I can get back to where I was before and am focussing on hanging in here. Sending a lot of gentle hugs to all xxx

That sounds delish

You'll be in good company here, know only too well how you feel.Was diagnosed 2012 and started treatment 2013, this last year however has been my worst.

For various reasons unable to consistently take my MTX so flare after flare after flare.

Felt just like you and said so at my last f2f appt with RA team 3 weeks ago. Given the usual cortisone injection and told will get a letter for an appt to discuss adding meds to MTX oh joy.

So I grab what treat I can to cheer me up, be it my fave chocolate, watching nature out the window, listening to fave music. Also at times I've taken prescribed antidepressants at times. after chat with the GP

Virtual hug and hang in.

So sorry you feel so dire, Hidden. Terrible way to be. I can't help at all, only to say that on my side I've had RA for 24 years now and although ups and downs over the years, I always felt it never got the better of me and I did well again on meds. But this year for some reason things stopped working & so did a biologic and my life has completely turned on its head. So much chronic daily nightly agony & pain, so much debilitation not able to look after myself, nor my partner who is chronically ill, the house, or work or anything. Strongest painkillers & anti-inflamms only taking an edge off sometimes.

This has gone on so many months while carrying hope the biologic or something would work, but no luck. Only this week have some temporary reduction in some pain and some better mobility as on yet another course of steroids while waiting to start a Jak-inhibitor (which I'm also dreading in case it doesn't work and will be at wit's end again, plus their possible side effects sound horrendous).

Sorry to go on, but I totally empathise with you feeling you have such a miserable life and losing hope that life will ever improve again. Hang on in there. Part of me is strong and will not let this RA keep me down, however absolutely crippled in agony I feel. You have strength in you too. It does sound as if you have something else going on though, not typical of RA, so worth pushing to get answers and another look at your diagnosis. I feel glad of this forum as it's the only place I can feel the burden is properly shared by people who know all about it. Take care and wishing you well xxx

You poor lamb. My heart is going out to you. Do talk to your GP to see if he/she can help in any way. Have you got anyone you can talk to locally about this? If not then this is the place to be. As you will read in the comments below others have been through this. It doesn't help that there is so little understanding of the whole RA problem...'Are you better today? Has it gone now?'...how we wish it had. We can look well whilst feeling so poorly and even close friends and some family have no idea what we are going through. Do keep posting your feelings here, don't bottle them up, scream them out to the rest of us. ❤️

GI problems such as nausea and vomiting are the most common side effects associated with methotrexate, affecting between 20% and 65% of rheumatoid arthritis (RA) patients who take the drug. Up to one-third develop mouth ulcers or sores. Many also complain of headaches, fatigue and an overall “blah” feeling.Maybe this is the time to speak to the rheumatologist or nurse specialist and tell them your not coping with the methotrexate there are other options I couldn't deal with methotrexate as my liver didn't like it. Your allowed to question why you feel the way you do. Also speak to your gp maybe you need bloods checked. You probably don't need telling but pace yourself try not to do too much. I do remember despair at the beginning but now I'm working and better. Sometimes it time is all it takes but if you feel so bad please speak to someone

versusarthritis.org/about-a...

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