Since being diagnosed I have felt overly anxious, fear, worry and depressive thoughts. As if the lupus is overruling my life. I have no clue if I had this before. I just want a cure. I am sick of the name. I am sick of being tired, feeling hopeless. The medication makes me to feel better but it is side effects is what I'm scared of. I referred myself to cognitive behaviour therapy t and this is only temporarily 6to 12 weeks ive done 7 weeks so far. Nothing makes me feel positive about life anymore. I'm confused, I don't know what I'm saying, things makes no sense. How people view you is you are garbage talk. I don't feel loved. I can't progress. I can't help myself to progress. I'm struggling everyday to make it to the next day, trying to feel thoughts with positive. Fear has overruled me. I'm sick of being sick and tired of pains, colds and everything. Being a single parent I just hate life as a whole.
I just want to know how to feel happy again, and how my lupus got into my brain? Are there people out there that had managed to reverse or stay off medication because of remission, how did you do it?
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Marva91
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It can be overwhelming but have you looked at yoga or some calming therapies You may have the dreaded brain fog that is typical with Fibromyalgia. . How were you diagnosed and what drugs have they put you on. Some make you feel worse for a time.
Forget the name, as I have had the problem for many years and you except you have it , take a deep breath and think you can do it.
Sometimes I read other people on here and think how lucky I am as many are far worse or have very bad symptoms
I am not the greatest fan of sitting talking with other people listening to their problems as I want to move from it not hear other people.
How about trying crafts, my daughter is a recovering alcoholic and has found crotchet and sewing helpful. I paint and draw. Reading and book clubs, walking groups, there are many groups . Citizen Advice or local library’s have lots of information.
I really believe absorbing yourself in something that stops you thinking of your illness is very important
I really love your reply. It is a reminder that I need to do something to keep my mind distracted read a book or do things.
I do feel blessed that I don't have it as bad as other people on here too. It is just depressing having this illness. I am on azathioprine and hydroxychloroquinee and steroids which they restarted. I don't feel really great. But I guess I have to be thankful and look through the positive side. 🙏
Remember you are loved, and it can be so difficult to comprehend it when you can loose your sense of self and worth in chronic illness such as SLE. Some people do manage remission, some have recurrent flares, others feel like it never remits. The right medication at least should help with symptoms and help you manage it. Some people on pred, can get steroid depression, a well documented issue, which can be on top of the mental strain of having to deal with so much.
It can be so worrisome, waiting and fear of an unknown future can be hard to grapple with. Try to love for today, not relive the past or feel daunted of the future for you may miss the beauty of today. Managing stress will help reduce lupus flares as well, but it can be a vicious circle that's hard to break. I listen to alot of music to drown out the fear and worry that I have and launch myself into my work. Launch yourself into your kids, a hobby, fresh air or whatever makes you feel a bit like you.
If CBT isn't for you, it's not for everyone. But it can give you good grounding techniques, coping strategies and affirmations. It can help you confront fears and worries that actually hold little merit. For example if your worried about HCQ and your eyes, get regular eye tests. If your concerned about bone health consider a DEXA scan or get bone profile on bloods done.
You are not lost in lupus. You are just finding your feet after an avalanche has hit, and your digging yourself out, until you reach the fresh snow and the brightness of the day.
I use various apps, my favourites are finch (so cute and rewarding personally) and I am, which are affirmations that are sent to your mobile throughout the day. If you ever need acute help with dark thoughts, low mood or anxiety there is always Breathingspace, Samaritan's, Shout, Campaign against living miserably. These are all good and offer txt live chats rather than a phone call if you prefer.
Stay safe, keep going, be kind to yourself. Things can get better.❤️
Thank you so much. I'm so grateful. I'm greatful for these encouraging words. This does make me feel better. That I have a community that is going through it too, but can extend their love to other who needs it. Thank you
Some of those drugs have side effects, I was on 40 mg steroid for a long time gave me permanent thrush and worse Glycoma. Now on maintenance of 10. The day it all changed for me was three years ago when I started with Tinnitus 24/7 Like Lupus with all the pain it is focusing on other things as I said absorbing your self in a ‘hobby’ or sport what ever is great.
I have an IPod with music or BBC Sounds with stories or series, it makes you listen and concentrate on other things
Vitamin D is very important for those who can’t go in the sun, high dose and helps your mental health
I was on steroid since May 2021 last year then they stopped in November 2021. Then they restarted it two weeks ago because I wasn't managing well. Sometimes I suspect that these doctors don't really check your blood test, you send them emails, calls and everything they don't respond to you. Then when you see them for appointment they make you feel like they never read your emails. I was close to dying two times and they do these blood test but they don't check it. Makes me feel utterly depressed. I had withdrawal once mixed up the drugs thought I had to stop steroids and start on new one. Then when they did stop the steroids I went into withdrawal again. When I take those drugs also makes me really anxious and depressed.
You are so right….with any ongoing disease you have to accept & look forward.Taking up something outside your usual activities helps meet different people ……& can open a lot of doors.
It’s certainly not easy, but once you stop thinking you will never be happy again….things kind of fall into place.
I’m so sorry you having such a tough time.I understand that fear fir the future feeling, exhaustion of dealing with everything. Not feeling anything other than anger and anxiety.
All I can say is keep going it will at some point get easier. Side effects are horrid. Keep going back to find something that suits better. It’s going to take time. I downloaded the calm and head space app. I do 4 minute meditation for panic and anxiety it dies really help.
Use a diary write down your fears but what you can do to help yourself too. Self care facials, rub some calming oils in your arms, do your nails watch a film or read. Small things to enjoy and focus on.
I’m dealing with toxicity due to Hydroxychloriquine yes I’m the 0.01 % a lonely journey with permanent body damage. So I understand how you are feeling
I’m having counselling and it’s really starting to help. Maybe that’s something to explore. It’s very focused on unravelling my anger and ways to cope feel happy living in the now as I am
I think many of us have been/are where you are. Lupus can actually cause depression, not as in "I am depressed because I am ill" (although obviously this happens too) but it is an actual effect of lupus. From what you are describing, it is a completely 'normal' aspect of lupus; the "Brain Fog", confusion, cognitive issues, not being able to string sentences together or get your words or the "right words" out. As for cerebral lupus (CNS involvement), it is far more severe (I have experience of lupus CNS involvement) and in my case it caused severe behavioural changes, hallucinations (both audio & visual, a massive increase in headaches, severe co-ordination issues and psychosis. It can also cause seizures, which thankfully I didn't experience. Anything 'new' to you or anything that has come on suddenly or quickly should always be checked out.
Luckily my brain issues are kind of 'under control' now, with the use of anti-psychotics but I really do think that speaking about lupus as a whole, you have to 'accept' this condition before you can start to deal with it effectively. Meditation, CBT, Mindfulness, anything that you feel works for YOU to help you relax and calm yourself will help immensely mentally, you jut have to find what works for you. I was in a very dark place a few years ago and could honestly see no way out, but have faith, you WILL get there. You aren't alone. Good luck.
I totally relate to your feelings. I have found a mindfulness course has really helped. Check out breathworks-mindfulness.co.uk. The lady is called Vidyamala Birch. I got her book Mindfulness for Health, which is a course specially designed for people in chronic pain/living with chronic health problem, and it comes with the CD. 10 mins of breath work twice a day. It seems to have lifted my mood. All the best xxxx
Family member (even if on the phone), a friend, your GP?
I have had low patch recently, and now I often am saying how I feel to folk I would have never dreamt sharing this information with. It helped.
Also, trying to get on with just little things at home, or even just sitting and relaxing for a while. Hot bath. Peaceful music. Some stretches. Stroll around somewhere with trees, daffs and birds singing.
Whenever I do an e Consult to my GP, I say how the 'new reality' is affecting me mentally.
May never get discussed but at least I'm recording it in the medical record.
If ever was totally down, I would make a GP appt to discuss everything.
Take care. Let us all know how things are going with an update if you feel like it. xx
Also cognitive behavioural therapy may not be the best - Sometimes hearing other peoples solutions can be nauseous, if they are not relating to your life...
Carl Roger's Person-Centred Approach, where you just talk and don't need to find solutions, can be gentler... Just being listened to seems to help...
Sorry to hear you are feeling so unwell.Many of us on this site will understand.
You are not alone. Do you have a lupus nurse at yr hospital rheumatology dept that you can talk to? They generally are very helpful and knowledgeable.They understand the condition better than most. Maybe look at Lupus Uk to check out local meets in yr area? Talking to others with same condition is therapeutic. I’ve made several good friends through this. Keep going, sending you love & big hugs.
Hi Marva91 I know that the feelings that lupus can give us at times makes us feel nothing but despair but know that you are not alone this group and others like it are here to listen to you and to try and help you to make sense of what is going on for you. I too have been where you are many times during my lupus journey and I am sure that there are still many times to come, but please don't lose hope. They will find some medication that will make you feel better physically and finding a good support group nearby will also help sometimes just knowing that we are not alone can help and believe you are not alone. You have to take the bull by the horn so to speak you know why you are feeling as you do now you need to find what can take you away from the feelings. I wrote everything down that was negative and then sat and replaced it with a positive thought it helped me not only sort through the what the why but it made me start trying to replace the negative before they started. I do hope that you find something that works for you, but remember you are not alone.
Hi, I can relate to what you are saying. I felt in a very dark place at one period in this nightmare called Lupus. The ladies here got me to realise that we are in mourning for awhile. Mourning the loss of our old life. The things we could do, the plans we had, the fun we had. For ages I couldn’t do any of my crafts because I couldn’t hold the needles, couldn’t concentrate because of brain fog and depression. Then, after advice on here, I started to think about the mourning process and started to be a bit kinder to myself. Don’t get me wrong, I still come on here in a hell of a state asking for advice, but this is a safe place to do so, and a place of great knowledge. I now do my crafts, have started and progressed in a Welsh language class and feel more balanced. So there is light at the end of the tunnel , you need to think what you would like to do that takes you towards the light. Our thoughts and hugs go out to you. Please let us know how you are getting on. ❤️
Thank you so much. This is so uplifting. It is like your mourning as you have said, the emotional feelings that goes through, the change that we have to do.
Oh Marva, I can so relate to what you are sharing. The symptoms of lupus can be distressing and debilitating, not to mention the fear of things happening in the future too. This is a rare disease you are living with, it is not well understood by society and even by doctors, so we are doing something very tricky every single day. That’s taxing.
While it is true lupus can attack the brain and create depression-type symptoms, it is also quite common to be depressed when living with chronic illness. There is a lot of research done on the link between chronic illness, especially chronic pain, and mental distress like depression and anxiety. You really are not alone in this, I have experienced very dark days myself. You are also in a very challenging situation, being a single parent. I cannot imagine what that is like. Honestly, I would be surprised if you were *not* depressed at all!
Things that help me: reaching out on this forum or to close friends, my faith in God, music, chocolate, cuddles with my cat, watching silly TV shows or movies, listening to the rain, dancing, fresh air, being in nature, standing in the sun, having a cuppa, writing, reading good escapist fiction. Or a combination of all of the above!
On the really dark days, I go into survival mode: breathing, sugar, holding my husband’s hand, crying, a hot shower, prayer, calling a counsellor. I do what I have to do to stay here. It can be easy to believe the lies of depression: ‘This will never get better’, ‘No one else knows how you feel’, ‘They’d be better off with you dead’, ‘You’re a burden to others’. We have to remind ourselves that depression tells lies, and then do whatever it takes to survive the day until the thoughts get bored and go away. Please tell someone about these thoughts; staying silent only makes it worse for you.
You are definitely not alone. We understand. We’re here for you. ❤️🌻
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