*forever moaning* exhaustion taking over

These last few weeks have been a nightmare, I have been in constant pain and having random sharp pains in either my abdomen and chest, these pains last for a few seconds and just appear out of nowhere. I have been extremely tired to the point I spend most of my day sleeping... it has caused me to take time off from work. I'm weaning off perdnislone I'm taking 3mg (started on 40mg) last year, on 50mg aza, 100 levothyroxine and 200mg hydroxocholquine.

My question is has anyone felt so exhausted to the point the littlest of tasks such as climbing the stairs is too much? I feel like I'm always moaning and people just don't understand because I look 'okay' and since I'm 24 I should be healthy so me complaining of tiredness is just laziness right?! i just feel like I'm lying about my health no one seems to understand my pain 😔

19 Replies

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  • I'm so sorry that you feel no-one is listening to you about how you feel. It is very hard for people who are generally well to empathise or feel what's going on in another person. There are people who do understand though, and we tend to want to be around those people rather than the ones who never get it and judge. It's why forums like this are so invaluable.

    I have no medical advice to offer, so sorry, and hopefully the more experienced people here will be able to help. But I hope this extreme episode stabilises, and that you can get some of your life back.

  • Thank you so much for getting back to me, it's nice to know there are people out there that genuinely care.

    I think what's difficult for me is being the age I am and the taking time off work even though I look ok. I'm scared of how others will judge me. I guess you need to take it with a pinch of salt.

    Thank you again for being supportive :)

  • It is indeed a bitter blow to be brought down when you are young. It's not fair..never fair. But hopefully things will get better, so long as you get the right help and support (it might take a while to get right though, from what I'm gathering).

    Some people will always be judgemental I'm afraid. They just haven't learned how to be a proper human yet. I try as hard as possible to focus on the people and things that make me feel better, not those who want to fill you with their own negative stuff. I don't always succeed, but these days if I come across someone who is giving me a hard time (nothing to do with what I've done) I back away slowly :).

    It's important I think, because one thing I've learned about Lupus and other AI conditions is that stress and anxiety makes it so much worse. I had all sorts of projects and plans up my sleeve until this disease kicked in. It makes for some hard choices about work and lifestyle but it is where the journey takes us.

    Take care x

  • Hi imzi

    So sorry to read your having such a tough time health wise. Your certainly in the right place for getting understanding as to what it's like and how it affects our lives!.

    Just wondering have you had your abdomen and chest pain checked out?. Lupus can cause serositis which causes your symptoms in both those areas and I'm interested that your steroid dose is very low!. Great achievement to get to 3mg from 40mg but you could now be in a flare specially as fatigue so bad!. Are you due to see your Rheumy?. Might be worth trying to bring appt forward by asking the clinic for a cancellation. If steroids increased slightly for a short time , it might just get you better. Also your Aza dose could also be increased if your bloods ok. Do hope your better soon, it's no fun being ill. X

  • I went for an X-ray yesterday for mg chest. I had an ultrasound and X-ray for my abdomen they didn't see anything. It's a pain at night as when I apply too much pressure on my sides the pains start.

    Rheumy are wanting me off the steirods now as they don't seem to be helping much. I'm having to reduce the dose every two months! Was on 100 of the aza but it was affecting my lft so brought it down to 75 where it started to affect my wbc but it seems ok at 50.

    I spoke to my rheumy last week about all this but I don't think they want to see me until my next appointment in August.

    Thank you so much for getting back to me and being so understanding. I really appreciate it x

  • Hi imzi

    I'm glad you've had your chest and abdomen tested and there're ok. Doesn't mean though that your not being affected by inflammation hence having the pain!. Glad you spoke to your Rheumy but sorry your next appt isn't till Aug!. You could ring the clinic and ask to have a cancellation especially if your still in pain. Aza can affect blood counts and it's interesting you've had to bring the dose down twice because of changeable readings. It is possible to be switched to another immunosuppressive. This could also be why your suddenly suffering as well as you've reduced the steroids so well!. That is a great achievement as they can be hard to reduce!. Lastly, what painkillers do you take?. You might want to discuss this with your GP if you still get pain. It's horrible feeling ill , do hope you get relief soon. The illness can fluctuate and you may suddenly hit a better time!. I do hope so. X

  • That's the story of most of our lives, being told how great we look, when we're feel like we are about ready to collapse on the inside. It's one of the most difficult parts of having this chronic illness. I'm sending you a great big hug and hope you get through this exhaustion soon. For me it seems to come in waves I can feel pretty good for a couple weeks and then terrible for a while, but we never know when it's going to hit. Also chest pains, stomach pains, joint pains, headaches all come and go. You never know when you wake up in the morning what you're going to have to face. Just know that we are all here to support you. Xo, Nan

  • Thank you so much for taking time out to reply.

    I'm finding every day harder to deal with I have got to the point that I don't even go out because putting on make up and getting dressed with just tire me out even before leaving the house! People must think I'm being ridiculous but this illness comes with challenges and I hope we can overcome these challenges we face :)

    Thank you for being here xx

  • I find out if I go out just for a little bit every day it makes me feel better even if I'm tired, I go out to a store, or go out for a walk, or go to the gym even when I don't feel like it. It lifts my spirits just to get out of the house. It's hard to do but sometimes I just have to put 1 foot in front of the other and do it. I know it's really hard when you don't feel like it, I understand how you feel because I have been there. I've even gotten used to not wearing make up all the time, I've even let vanity go ha ha. My best to you.

  • I've felt that exhausted for ages. I'm always borderline anaemic and tablets don't seem to work very well. My previous rheumy admitted the rheumatology side tends to just focus on joints and inflammation but aren't good at dealing with fatigue. I had an iron infusion which has helped loads. Maybe an option if you have anaemia? When it comes to fatigue, don't take no for an answer - I'm bad about this too and think it's just something I have to accept and learn to deal with. But if there is any probable cause for exhaustion it needs investigating.

    I wish you hope!

  • Thank you for taking time to reply. I'm sorry to hear that you had to suffer with this exhaustion, it's draining.

    Fortunately I am not anemic therefore my exhaustion is down the to the disease, I'm glad the iron infusion worked for you.

    I'm getting my bloods checked next week and according to that I shall arrange to see my rheumy.

    Thank you 😊!

  • Hi Imzi,

    It is reported that almost 90% of people with lupus experience extreme fatigue; making it one of the most common symptoms alongside joint/muscles aches and pains. Last year we published a blog article on managing fatigue which you can read here: lupusuk.org.uk/managing-fat...

    We published a blog article on ‘pain management’ which contains tips and information that I hope will be of help to you: lupusuk.org.uk/pain-managem... .

    Please keep us updated, all the best.

  • Thank you for sharing those links I will definitely have a read.

  • So sorry you are going through this at such a young age. I hate this dreaded disease I live with now but thank God I have only been having symptoms last couple of years and got diagnosed this past September. Our children are now grown so I we were able to do a lot with them growing up. I can no imagine how it would have been raising our two children and struggling this way. I feel exhausted most of the time now. I take the same meds you are taking but I take 10 mg of prednisone. I was in hospital a couple months ago with bad pain in stomach and chest. They said chest was ok but did a scan of my stomach area. I had a bacteria infection in my colon and had to take some strong antibiotics to clear it. That was causing the stomach pain ans since chest x-rays came back fine, they said it maybe was anxiety caused by the pain I was having in stomach. I take vitamin B12 for exhaustion but it does not seem to help. I have to just do what I can when able to and limit everything. I am 55 so is not as hard for me as for someone your age. Gentle hugs and hopefully you get some relief and something to help with some energy for you.

  • I'm sorry to hear that you ended up in hospital. Sounds like you have had a tough few months. I hope your on the road to recovery.

    I was kept in overnight in hospital just last month for my stomach pains where they did an ultrasound and X-ray but couldn't see anything being the cause of pain. I got an chest X-ray done the other day but no results as of yet.

    I just have to accept my fate and take each day as another reason to become a stronger person 😊

    Thank you for getting back to me and I hope your feeling better 💕

  • I'm so sorry you have these symptoms. You are not alone. I felt just like you a few months ago. Doctors wouldn't listen and tests came back 'normal' all except vitamins. I started myself on vitamin b12 and D and C. Then on my next visit to the Gp I asked about my results as nobody had told me. They were very low but still 'in range'. I carried on taking them and tiredness has almost gone. Aches and pain in the morning but mostly better. Chest random pains gone.

    The doctors make you feel like you are forever moaning but you just until you get some treatment. It is a terrible feeling I know.

    I wonder about your vitamins. Also when I was completely off steroids I felt better too. Maybe the side effects are worse on a low dose I don't know. It is trial and error as we are all different so what works for one person doesn't for another. Doctors fob you off most of the time. It has taken me 2 years to get to a place where I don't complain as taking the vitamins has helped me enormously. Only by researching myself as a result of HealthUnlocked have I begun to feel better. So keep on at those doctors. They must help you.

    I understand your pain and wish you all the best for recovery.

  • I went to my gp today as I have reached the point of giving up.

    She said my lupus is active she told me this straight away as my face is covered in rash and from my symptoms, she has suggested me to alternate between 3mg and 4mg of prednislone for the next few weeks so I will try this and see if it helps.

    Also been told with my condition I shouldn't be working full time (I'm only 24 and have my whole life ahead of me) I was distraught when she suggested this. I'm a bit lost :(

    Thank you for taking time to reply and I hope you have a journey towards good health

    I. X

  • The doctor probably thinks that hard work and stress doesn't help your condition. Which is right. But we have to go to work to be able to live.

    We have to learn to be nice to ourselves and rest as much as possible.

    I hope the alteration in dose of meds helps you and you start to feel better.

    Best wishes

    X

  • Very true, doctors know what's best for us.

    I like the piece of advice you have given, I will remember that.

    Thank you so much

    I. X

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