LUPUS UK
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Am I going mental

Hi I'm Heather I've had lupus 22 years I'm normally happy go lucky,it effects most my body heart kidneys joints,just resently ive become very angry and cry for no reason,I've always had head fog but I think now lupus is effecting my brain I think I'm depressed I just get on with it and I don't really know we're to turn for to get one help do I just hope it goes away and just keep putting that smiley face on pretend there's nothing wrong,keep the tears for my pillow xx

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Hi there Heather. I don’t think you’re going mad at all. These AI diseases attack every part of us over time and this inevitably has a knock on effect on our mental wellbeing too. Or sometimes feeling very anxious or wired or angry is part of the disease itself as you say. But if so there are disease modifying medications that could help a lot.

I’ve got Sjögren’s and Hypothyroid and mostly am a positive person. I’ve had autoimmunity since I was a child so I’ve never really known good health or shared the kind of physical energy levels of others amongst my friends and family.

Like you I hide anxiety well in the hope that people won’t tire of my company or associate me with doom and gloom. But sometimes it just spills/ trickles out like a boiler that’s over heated and there’s nothing I can do. I don’t tell my doctors about it because I have tried antidepressants for nerve pain and they give so many side effects. I was in counselling for a couple of years and found this helped because I had someone who would listen and not judge me for venting steam if I needed to. But then I relocated and didn’t like the look new doctors gave me if I mentioned feeling low. So I went the other way to prove that I wasn’t just suffering from anxiety. Big smiles and jokes - sometimes hiding my crumbling interior.

I do have quite a neurological presentation of Sjögren’s very like MS and I know this makes depression a visitor try so i do not to let it in. But sometimes it’s like a flare up and you have to because fighting it only makes it worse. These are bed days where I treat it like I have flu and hide from the world. In theory anyway but in reality this isn’t always so easy.

I think you should mention this to your doctors in case Lupus is affecting your central nervous system. But also so they get the full picture as it’s a big change in your usual way of handling things.

Take care and keep posting here - I find it really helps me x

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Oh my gosh! Every single exact emotional symptom you described i have been going through since 2013. I also 7se my humor to cover or am super upbeat to cover my depression when others are present. I isolate and have recently been easily frustrated or angered, usually i am the one to make people laugh ir feel understood. I have been feeling like bugs are crawling in my hair in which im loosing very fast, also swelling in my neck and throat area. There are lumps in my nodes, also causing my muscles to tense all over. I am getting chills, veins sometimes look huge. I have allegens in my eyes that feel like crawling, sharp sticking pains, headaches, muscle loss, arms feal weak. But, the doctors i have told said to talk to a phycologist and refused to even examine me! It's so scary not know what is happening to my body are bugs eating me alive? Are the lumps and bean bag like feeling when squeezing my arms cancer. It's a nightmare when nobody believes you or will help. I gave going to the doctor because it was too hurtful and angering i fwel hopeless and afraid.

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Hi 👋🏼

I totally get where you are coming from too. No mean feat when feeling so low. It’s hard work trying to be the joker/entertainer all the while. And the problem is, we don’t always look ‘unwell’ and that’s when people want to know how you can be when ‘you don’t look it’! Eventually something is bound to tip you over the edge. I know I can shock my husband some days by holding everything in and then, uh-oh the tipping point - when I am unable to contain myself any longer it all comes spilling out. I do feel dreadful afterwards. I used to be a very patient person.

The funny, bean bag sensation in your arms yo mentioned - my midriff-feels strangely enough very much the same. And I too have muscle wasting -amongst many other symptoms.

Perhaps change your Dr if you feel you are not being taken seriously. And maybe, to help you manage your condition, a chat with someone might help you cope a little better?! It is very understandable to feel fed up/cheesed off, annoyed , angry -it’s not easy trying to be upbeat every minute of the day when fatigued and in pain.

Don’t feel hopeless or afraid (easier said than done! ).

Lots of kind and caring people on this site to help you through the ‘down’ days. 💐

Sue.x

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Hi HezzaD,

Welcome to the LUPUS UK community forum. I hope that you'll find this place helpful for support and information. I'm glad that you've found us to talk to. I don't think it is best to try and hide these feelings away, so it is good that you are sharing with people here who will understand.

Have you discussed your mood with your GP or consultant? This may be a good place to start as they can offer you additional support or refer you for specialist treatment/therapy.

We have a blog article about coping with depression and anxiety in lupus. It has a lot of helpful information and advice - lupusuk.org.uk/coping-with-...

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Thanks, i appreciate it. I am looking forward to learning and finding resources to get me in the right hands

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