Stress and lupus: The hardest thing with lupus is... - LUPUS UK

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Stress and lupus

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The hardest thing with lupus is to not be stressed as it can cause a flare up...how are you not meant to be stressed its scary to think that it can really affect you! How do others deal with it? Its so hard when having a flare up just a instant reminder of having this dieseas :( also for the past year the depression as been really bad aswell as anxiety how do others cope? Iv had so much go on that hasn't helped with the depression but some days I feel ok others I feel like I'm not coping at all...

21 Replies
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I just want to give you a big hug! 💜 It is so hard living with this awful disease and coping with the impact that anxiety and depression can also have on you. I really feel for you because I'm right there with you. It is isolating and deeply unsettling; however, you aren't alone and folks like us on this site understand and appreciate that life with lupus is tough. I find that breathing techniques and mindfulness is helping me but it's a slow start... I'll get there but it's definitely helpful when I feel my chest tighten or a wave of panic hit me. I really hope you are okay. Stick the kettle on, I find tea works wonders. 😉👍 Take care xxx

Sarah74
Sarah74 in reply to _jenc_

I agree tea tea tea! I’m 44 now and was diagnosed at 18. A lot of work to get where I am now.

Acceptance is a definite part. I can’t do half the stuff my friends do and often have to cancel at last minute.. I have lost friends and find I just have a couple of close friends who sort of get it..

Quite a lot of therapy over the years.. including a lady who taught me how to pace.. and I try and do a few minutes of yoga/mindfulness everyday..

Might not be your idea of fun but try and eat lots of fruit and veg... I swear by my green smoothie every day!

And gentle excercise even if you just go round the block for a walk and watch the kids and dogs playing...

finally I work from home which has cut out commuting, germs in offices etc...

take care x

Hidden
Hidden in reply to Sarah74

Ah I love my Greens i have loads every day :) i think acceptance is really hard for me especially when comes to my daughter and not being able to do all the thijgs she wants its hard I do go out now and again but will try to go out more :) x

Hidden
Hidden in reply to _jenc_

It really is hard especially as a parent when you can't do all the things your kids want to do I think that's what gets me the most...and the kettle is on :D I will be OK I think that one of the thins of having lupus is it does make us strong in ways and we do somehow get through it even on our tough days xx

I find i need to have air...If you cant go for a walk, even to sit outside (with your sunscreen on of course)...Or if you can open windows why you are inside...I have way less stress than i use to...A hobby of some kind helps...Music can help too...good family members and friends...and a pet....all helps for stress...

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Hidden in reply to dgleds

I'm definitely going to go out more I don't think I go out enough so hopefully that helps :) and I'm going to look into a hobby :) my cat has not long had kittens so right now I have 7 pets haha xx

dgleds
dgleds in reply to Hidden

Your lucky...beautiful kitties to look at ;)

So sorry that you are feeling like this. It is one of the biggest dilemmas - how is it possible to not stress when this big scary thing is happening to you. I know exactly what you are talking about, and I'm very bad at relaxing anyway.

I don't have any advice to offer, only that we all go through the same thing. I think as Sarah74 says, ultimately it's about acceptance. But I think it takes a long, long time to get to that point. I'm only one year in from diagnosis, and have only just got past the denial stage (which made me collapse into a big depression and then a flare - I think it was when I also got diagnosed with APS).

I've been considering going to therapy to try and adjust. Yoga and swimming perhaps. Meditation. Art. These are all meant to be relaxing xx

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Hidden in reply to Treetop33

I do go swimming now and again but it can be so draining but I do enjoy it :) iv had lupus since 14 and even now I still find it hard to accept I don't think I will ever fully accept it maybe that's why I find it so hard when I have a flare up x

Treetop33
Treetop33 in reply to Hidden

I love swimming too. It's going to be tough with the fatigue as you say.

It is very hard to accept this illness and totally not fair when you are diagnosed young.

Take care xx

I think the others have good ideas. Do you have a hobby, or something you've hankered to try? For me it's knitting. I find I can get lost in it, sometimes just counting the stitches over and over. I have a few projects on the go, and change from one to another depending on how much concentration it needs, or how my hands need to change from holding different types if needles. At the end, I've actually made something.

I feel you!! Going through the same!

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi emma32xx,

You have received some great tips and advice so far.

As you have mentioned stress is an important trigger of lupus which is why we published an article on our blog about ‘stress management and relaxation’, which I hope you find useful: lupusuk.org.uk/stress-manag...

It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety. We recently published a blog article on ‘coping with depression and anxiety’ which you may like to read here: lupusuk.org.uk/coping-with-...

If you would like a LUPUS UK contact to chat with over the telephone to help reduce any worries and anxiety you may have, please email me at Chanpreet@lupusuk.org.uk with your name and address.

Poor Emma - I won’t bore you with too much detail but I was rock bottom - sole carer to lovely husband and 6 months diagnosed with Sjogren as well as Lupus when I started having awful panic attacks. One lovely GP persuaded me to take Sertraline anti anxiety/ depression pill - it worked. I really love natural remedies so I never thought I would take such a thing. It is like having a pair of crutches with a broken leg - really really saved me.

Have you been to your local Lupus support group? Amazing what remedies you can pick up. Good luck

Hidden
Hidden in reply to Cas70

Hey hun don't be silly its nice to have others opinions it would never bore me :) I was on sertaline I'm now on ectelopram I think they're called as sertraline was helping then I fell back to rock bottom again and no u haven't hun I will look into one this is the only support group iv joined...ihope you're ok now lovely I'm glad the sertraline worked for you (excuse the spelling haha)

Cas70
Cas70 in reply to Hidden

Thanks Emma - I run a support group for Sjogrens and most of us have some form of Lupus too. So many of the women find it a great relief to get things off their chest with fellow sufferers from this invisible illness. Is there not a support group near you on the list in the Lupus magazine?

Hidden
Hidden in reply to Cas70

I'm not sure hun I will take a look to be honest I never even knew there was support groups I mean so many people haven't even heard of lupus defiantly needs to be made more aware to others x

I've had SLE for 41 years and while stress is bad for 'any' illness I'm still waiting for concrete - biological proof that stress and anxiety is an 'actual' trigger.

I think a lot of the evidence is observational. And like you said - how can you be calm when you're flaring. I think its kind of like - which comes first - the chicken or the egg - type dynamic that psychologists and Rheumatologists are observing.

You'll become more stressed trying to control your stress. Just don't push and fight with you're emotions.

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Hidden in reply to Freckle1000

Exactly hun there is no possible way you can not be stressed my anxiety has got bad aswell its just one thing after another x

That's a really good point Freckle1000. We drive ourselves crazy wondering what aspect of our behaviour is setting off a flare (I know I do!).

Hi emma32xx like you i get stressed worry anxiety. Which do not do me any good. Ive been unwell lately. I had some bad new's about my dad. And ive just been told my the doctor ive a fatty liver. I do not now why. Because i eat a healthy diet. So my lupus has had a great time in playing up. Also am very tied all the time. And i get very bad headache's. They get so bad i do not now what to do with my self. What i try to do is have a time out. Hope you feel better soon.

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