Anxiety: So I am getting worse. I have episodes... - LUPUS UK

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Anxiety

Insomniacette profile image
41 Replies

So I am getting worse. I have episodes where my anxiety is off the charts. I don't think it has ever been this bad. And I'm anxious about everything. Which makes me exhausted, irritable and snappy. I genuinely need to get a handle on this thing because I can see the exhaustion in the eyes of my family. They can't take it anymore.

I don't know if it's sjogren/lupus/plaquenil/or just me.

But I'm wondering if there's anyone out there that has had anxiety and what you're doing to bring it under control.

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Insomniacette profile image
Insomniacette
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41 Replies
Katsumitsu profile image
Katsumitsu

Sorry to hear about the anxiety Insomniacette. After being in isolation for 3 to 4 months earlier ths year, I realised I was suffering from anxiety when I had a return to work interview. It was a that point that I had to go on sick leave. I had some support from my employer and my doctor but then took baby steps going outside again besides going to the supermarket.

I would reccommend you speaking to your doctor and someone close to you, who can be totally honest with. Talking helped me a lot but it can still be hard under this current climate. If you can, try going outside to some green spaces away from your neighbourhood. Sorry if my advice is not that helpful but this was a new experience for me this year.

Kind regards,

Leon

Insomniacette profile image
Insomniacette in reply to Katsumitsu

Your advice is very helpful Leon! Thank you! I went outside today which was helpful! :)

Lupusrelative profile image
Lupusrelative

My doctor started me on escitalopram 20mg earlier this year. Has really helped with anxiety.

Insomniacette profile image
Insomniacette in reply to Lupusrelative

I am thinking of asking for meds as I feel I'm losing control of it. So this was really helpful to know there are meds out there which could help!

Lupusrelative profile image
Lupusrelative in reply to Insomniacette

You really should! They will help xx

cathie profile image
cathie

My anxiety has been increasing during this strange period. Baby steps whatever you try to do, focus on what gives you pleasure, plenty of rest. Are you sleeping ok? Do you have someone supportive to talk to who won’t judge you? Remember that your reactions are normal just now!

Insomniacette profile image
Insomniacette in reply to cathie

Thanks cathie! Sleep is bad but I've been using a free app called calm which I leave on and fall asleep to. I find it hard talking to my family about it or anyone really because I'm very frightened. I feel anxious all the time. I can't shake it. If anything I try to hide it as my family would worry even more if they knew how bad it was. I'm thinking I definitely need to see the gp on this one.xx

cathie profile image
cathie in reply to Insomniacette

Yes that’s a helpful app. I found that my sleep improved when I didn’t have to get up for work. I hope you find sharing your anxieties with us helps. Xx

Spanielmadlady profile image
Spanielmadlady

Sorry you are struggling.i agree with others that you should talk to your gp before its spirals out of control.anxiety is part of our illness...I've never been an anxious person until I became ill and i never would of thought going to a shop for bread (when shielding ended) would make me a nervous wreck ! Unfortunately stress and anxiety fuel our illness so its important to learn to let stuff go especially things you cant control.It sounds to me as if you havent developed your coping strategies fully yet.im fortunate to live rural near several beaches and my best coping strategy is to be out with the dogs mooching on the beach letting the wind (90% of the time rain as well 🙄) blow away my anxiety.i also find breathing techniques help, focusing on a craft project and a good old lupus nap help too. I enjoy listening to enya as I find her music calming. You have to keep everything in context and perspective.ok (before anyone jumps down my throat) I know it's easier said than done but like everything else in life it takes time and practice.as time goes on you pick up and add various tools to your toolbox to help you fix these issues and regain control 👍.

Dont forget we are here to talk to. Xx

Insomniacette profile image
Insomniacette in reply to Spanielmadlady

Reading this calmed me so much spanielmadlady. I feel like I'm going nuts when I'm in the middle of it. It brings me to tears and I struggle to breathe. I never used to be this way. So knowing it comes with our conditions and I'm not alone in having this happen post diagnosis makes me feel less lost and confused about what's happening. I have farms near me so I go out in the green. The dark months have made it harder buy I did it today and it helped. Thank you for this.xx

Spanielmadlady profile image
Spanielmadlady in reply to Insomniacette

Having dogs means I've got to go out regardless of weather but i still feel better for going out.im glad you managed to go out today. I'm sorry you feel unable to talk to your family about it all.if you need a chat feel free to private message me.....I'm not usually far away.something like 65% of lupus sufferers have anxiety and if you google lupus and anxiety there are a few articles about it x

Spanielmadlady profile image
Spanielmadlady in reply to Insomniacette

If you struggle to breathe try this technique......in through the nose and out slowly through pursed lips ...we were taught it at pulmonary rehab and it's very good for getting back control of your breathing x

Insomniacette profile image
Insomniacette in reply to Spanielmadlady

Thank you so much 💗

Spanielmadlady profile image
Spanielmadlady in reply to Insomniacette

Simple Breathing ExercisesInhale slowly and deeply through your nose. Keep your shoulders relaxed. ...

Exhale slowly through your mouth. As you blow air out, purse your lips slightly, but keep your jaw relaxed. ...

Repeat this breathing exercise. Do it for several minutes until you start to feel better.

verywellmind.com › abdomin...

Deep Breathing Exercises to Reduce Anxiety - Verywell Mind

cathie profile image
cathie in reply to Spanielmadlady

Chi gong is helpful for developing breathing techniques too

Sarah74 profile image
Sarah74

Talking therapy...and as corny as it sounds....(I was always a gym person) but yoga and the meditation/mindfulness which goes with it, better than any drugs...but you have to be into it even for 5 minutes x

Spanielmadlady profile image
Spanielmadlady in reply to Sarah74

I did tai chi at pulmonary rehab and loved it 👍

Insomniacette profile image
Insomniacette in reply to Sarah74

I'm going to ask my gp to see if it's possible, there's probably a waiting list but worth a shot!! Yoga I will try :)

Hatelupus profile image
Hatelupus

I suffer from anxiety and it all stems from when sheilding ended. I had a return to work interview in September and talking to one of my managers made me feel physically ill. His view was to put me in an open plan space in the corridor away from the lab where covid samples were being processed for the first week then back in the lab the second week. It made me feel sick, the anxiety just took over, I wasn't sleeping or eating and constantly on edge and couldn't switch off. My kids and husband were getting the brunt of my mood swings.

Few days later I spoke to a different manager who was absolutely amazing, she suggested I speak to the GP. Spoke to the GP and he signed me off sick with anxiety and referred me to counselling services. I've had 4 sessions so far and it really is a slow process. I've only recently started yoga to try and calm my nerves. There is a lot of soul searching. You need to know what exactly triggers the symptoms and then try and overcome them, gradual exposure. When the anxiety starts you also need to find a distraction. I've started to click my fingers when I'm anxious,the sound it makes helps me realise that I need to stop stressing. It takes a few minutes but it's a distraction that helps.

It's easier said than done, I have yet to do the school run without having panic attacks whilst driving (I just sit in the car and watch 9yr old walk into the playground). I feel safer at home than outside. Anxiety is so debilitating, so far I've said no to medication as I already rattle when I move but it does look like I may have to reconsider. I also suffer from lupus/sjogrens/Raynauds.

Hope you find something that works for you, take it slow and be kind to yourself. X

Insomniacette profile image
Insomniacette in reply to Hatelupus

This was golden advice thank you and thank you for being honest about your struggles. This sentence: "the anxiety just took over, I wasn't sleeping or eating and constantly on edge and couldn't switch off" describes me perfectly right now. I'm sorry you're going through it too but also glad to hear you're on the road to recovery. Thank you for inspiring me and helping me feel less alone with this xx

Spanielmadlady profile image
Spanielmadlady in reply to Hatelupus

I also feel safer at home.ive managed the college run but the first few times I got an horrendous headache .my son knows he must wear a mask all the time and carries sanitizer. His time in college has been reduced and they can leave as soon as they are finished which has helped but I still dont like it x

Roarah profile image
Roarah

I have been in therapy for the last two years treating a stroke related PTSD combined with a history of GAD. Within six months of starting therapy I noticed for the first time in my life I no longer had constant butterflies in my stomach. I spent my whole cognitive life having that anxious feeling at least once daily. I no longer do. Incidentally I am also antibody free including my ANA now two years after finally addressing my anxiety issues. Treating my anxiety has saved my life. I no longer ruin today with my fears about tomorrow. My life is better now after two massive strokes and kidney damage than it was before and I have therapy to thank.

I have been treated with only therapy no drugs. My therapy is a mix of EMDR ( eye movement desensitization reprocessing) and mindful based CBT with ACT(acceptance and commitment therapy).

In addition to my sessions I my do daily homework. This includes walking at least thirty minutes every day( I have not missed a single day in two years). Eating tons of brain foods know to help depression and inflammation. Broccoli, bran, oats, and almonds. And I meditate at least 15 minutes per day.

Wish I had treated my mental health years ago I really belief it would have allowed me to avoid my autoimmune disease if I had. I do believe my healthier mentality is responsible for my present remission from flares.

Good luck and know there is help available.

Insomniacette profile image
Insomniacette in reply to Roarah

This sounds so great! Very happy for you Roarah! V much hope I get there too!

Krazykat26 profile image
Krazykat26

Yes I too have developed anxiety since diagnosis having been very capable before so I know how your feeling..gentle cyber 🤗from me..you're not alone!! I agree with the other responses in that it's all about breathing n calming your breathing down..I was a mental health nurse for many years back in the day so I have some professional experience as well as personal.

When someone feels anxious it starts a physical reaction off in the body. It's affects the autonomic nervous system which is the part of our nervous system that just works automatically (heart, lungs, stomach, adrenal glands etc). If you've heard of the fight or flight response that is what happens. The person sees or experiences something that causes anxiety n the body automatically prepares itself to either fight off the threat or to run away!!

This causes palpitations that can make the person feel like they're having a heart attack, stomach problems (butterflies, nausea, vomiting), shortness of breath (gasping, quick shallow breaths, can't get air in). The adrenal glands on top of the kidneys release adrenalin which causes this speeding up of these organs. If left unchecked it can cause a full blown panic attack.

I had a panic attack when I went for my first flu jab three years ago..totally unexpected n very scary indeed!!

The good news is that it can be controlled once u recognise the signs n the way to control it is through consciously slowing the breath by breathing in through the nose for a count of five, hold for five, n then breath out through the mouth (gentle blow)

It can take a while to work but the idea is that by focussing on the breath n getting it under control the other organs involved will follow suit..the counting also helps to focus the mind on the breath.

Calm n meditation apps will definitely help as does yoga n tai chi..I did tai chi for many years.

Another good exercise when you're out walking is to stop n gently start stamping the earth..then gradually build it up..getting quicker n stamping harder..let all your limbs go floppy..arms n shoulders..stamp as hard n quick as u can n then let out a roar!! 🦁 N then if u fancy it..let out another 🦁 This helps to get rid of any frustration or anger that u might be feeling n it feels great afterwards!! Obviously make sure your alone in an isolated place..otherwise people will think your nuts!! 😹

Most of all be kind to yourself n treat yourself gently 🌈😽😽xx

eekt profile image
eekt in reply to Krazykat26

Krazykat, I'm going to try the stamping and roaring!! :) xxxx

Krazykat26 profile image
Krazykat26 in reply to eekt

😹it works!! Enjoy!! 🦁🦁🦁Good to hear from u eekt 🤗🌈😽😽xx

eekt profile image
eekt in reply to Krazykat26

Great to hear from you Krazykat, thank you! 🤗 ...I'm so excited by the idea, I might try it in the garden! (the neighbours think I'm nuts anyway so it would stop them annoying me! 🤣🤣🤣👍) xxx

Krazykat26 profile image
Krazykat26 in reply to eekt

Oh yeah..I hear ya 😜 I had a roar in my wet room last night..first time I've done it in there!! The acoustics r fabulous!! 🦁🌈😽😽Xx

eekt profile image
eekt in reply to Krazykat26

Fantastic resonance!! Yes, that must have felt good! :) xxx

😅🙋🌈

MEGS53 profile image
MEGS53 in reply to eekt

.....me too!

MEGS53 profile image
MEGS53 in reply to eekt

......me too!

eekt profile image
eekt in reply to MEGS53

...now if we all roared at once at a certain set time every week, maybe someone would hear and we'd have a loud lupus voice! 🐺😅🐺🌈🐺 xxx

MEGS53 profile image
MEGS53 in reply to eekt

Yey!! 😱😱😱

Insomniacette profile image
Insomniacette in reply to Krazykat26

Thank you Krazykat26 huge gentle hug back at you. It helps so much to read your experience and that like me your anxiety turned up since diagnosis too. I will definitely do the exercises. Thanks so much for the supportive post. I'm calling my GP tomorrow to get some help with this.x

eekt profile image
eekt

Hi Insomniacette, here are some tips - getpocket.com/explore/item/... - and I think some of these could be Mindfulness? (nhs.uk/conditions/stress-an... had a session at work and even a couple of minutes Mindfulness was surprisingly effective!....similar to tips others have given!

Be well xxx

Insomniacette profile image
Insomniacette in reply to eekt

Thank you so much eekt!!xxx

eekt profile image
eekt in reply to Insomniacette

We're never alone here on the forum! Keep on coming! xxx

julsz profile image
julsz

I was struggling with lack of sleep due to pain before the pandemic struck. My rheumatologist prescribed me amitriptyline to help with this. I too am currently struggling with anxiety but I will say the amitriptyline enables me to get a reasonable night's sleep so I'm more able to cope with the effects of the anxiety. Maybe you could ask about trying that. Good luck. I know how hard it is.

Insomniacette profile image
Insomniacette in reply to julsz

Oooh thanks Julsz. I'm sorry to hear of your struggles too. I'm open to it all but what's great is all the responses to this post have motivated me, made me realise I have options and made me feel brave enough to go get help. I start tomorrow with my GP. Thank you everyone! I have a lot of love for our community on here 💓💓💓

cathie profile image
cathie

I’ve been prescribed this. It helps sleeping even though GP told me I was on homeopathic dose!

Insomniacette profile image
Insomniacette

Just an update on this. GP prescribed me 10mg of propranolol for when I get intense episodes on Monday. I took one yesterday evening when I was unable to switch the anxiety off and it worked wonders. After about 45 minutes it was like I was my old self, no intrusive thoughts taking hold and swirling in my head. I also slept properly for the first time in months. I still have anxiety but the pills seem to take the edge off.

THANK YOU ALL! I'm feeling better because you all inspired me to get help. xxxx

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