Can anyone give any advice on support/methods/management of anxiety, feeling overwhelmed very very easily.
My daughter was diagnosed last month with obvious symptoms (rash on face) but in hindsight can see so many symptoms over the years that separately can be explained off but clearly has had this for a long time, the knowledge and joining the dots now finally show this and a rheumatologist confirmed you can have this and it sit dormant to a degree until its triggered.
She could get distressed/overwhelmed easily by things others would cope with better - but since this has fully kicked in this year (stress was final trigger) that has amplified massively.
I wondered if anyone has any experience / advice on how you cope with this if it is a particular issue for you aswell?
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smeackles
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Hello, I'm sorry to hear about your daughter, I have Sjogrens and suffer those same symptoms myself. I have fibro also along with other stuff lots in common with lupus but being a stresshead has meant I struggle with acid and now have Barrett's. Life is hard and I'm so happy she has you to support her. Sorry no advice but all best wishes and good luck x
Hi Smeackles, is it both you and your daughter who are experiencing anxiety? It is very common indeed to experience anxiety with chronic illness, especially with one as complicated and unpredictable as lupus. I experience anxiety because of past flares: I worry about them happening again, as they can be quite disabling. Diagnosis can also cause a spike in anxiety, as it can be quite overwhelming to think about being sick for the rest of your life!
As you and your daughter get used to the idea, work out medication and settle into life with lupus, I imagine some of that anxiety will settle down. You get used to living with lupus; I mean, you never really adjust to it, it’s always difficult, but you do develop a bit of a rhythm, even with flare-ups. Once you know that it’s lupus, the fear of the unknown tends to get swallowed up in the day-to-day coping.
And yet, anxiety is always there. Personally, I feel it every time I go out, especially for special occasions or if I’m travelling further than usual. I cope by having contingency plans and exit strategies if something does go wrong. And then I hope for the best. That’s the only way of coping that I have really found helpful. Most days, nothing will go wrong. But sometimes things do flare, and then I cry from sheer frustration and disappointment and grief, and then I do what I have to do (go to hospital, go home, call my doctor).
Hi - it is just my daughter that has lupus and suffers with anxiety amongst other symptoms, was always more anxious than most but as said, amplified right now. The idea of contingency plans and exits strategies is a good idea - thank you so much for sharing your thoughts and experiences. Hoping you are doing well right now.
So sorry to hear about your daughter’s long-standing anxiety. Lupus will certainly amplify that! Hope you guys can come up with some plans that will mitigate the worries somewhat. All the best to you
It’s my daughter that’s recently been diagnosed- she isn’t here often as works away, but we have a dog who she adores and takes joy in home - has a break coming up so will be with us shortly. Music is a joy for her aswell.
As well as asking for a doctor’s help and referral (which can take ages) I suggest you try yoga breathing : breathe in for count of 2 out for 4 and hold for 2 . Repeat 10 times. I’ve had counselling for anxiety and the best tool for me is imagining my ‘safe place’ and going there for peace and calm. You have to imagine the place in your mind, either ann imaginary place or a place you know, and recall the smells, the sounds, and the feel of the place as well as how it looks. Mine is a small Greek church on a hill overlooking the azure sea - I see the sun shining through the tiny windows, feel the cool air inside the church, hear the Pappas chanting and smell the incense. It is SO calming and takes me away from the anxiety I am feeling. I hope this helps you. Take care. Xx
Thank you for these ideas - she does do yoga a little so have reminded her to make use of that as you suggest here. I love the 'safe place' as well - I have one myself. Passed this on to her today. Very much appreciate your reply.
Kalley Mera( meaning good morning):from Thailand, lovely imagination about the Greek church on the top of the hill!......can relate to this as I lived in Mykonos for many years...just did some 2...4...2s... Life gets a bit too overwhelming just too much to cope doesn't it!?🤣😁 Very good luck Smeakles!!
Kali Mera to you too (my Mum was Greek from Thessaloniki). How wonderful to have lived in Mykonos. Wouldn’t suit me now sadly with my photosensitivity, but I’d have loved it when I was younger. Were you working there? Lovely memories I’m sure. Breathing exercises definitely helps us in this manic world. Take care HM. Xx
So good to be here as I must remind myself to follow different breathing ways...I just did some of the below!. This method was used for trials for lowering IOP!
365 Method:Three times a day, breath six breath cycles per minute for five minutes.
One breath cycle means to inhale for 5 seconds and exhale for 5 seconds.
This breathing method can bring immediate feelings of relaxation.
Practice this technique every day (365 days) for maximum benefit...... without all these counting which I get all tangled up.... simply gently watch the the beath ..... inflow..... and then outflow.... just did this too for a short while?
The Wren Project. It is a charity set up to support people with autoimmune condition. They offer counselling for free. Hope your daughter gets help. Best wishes!
Hi, really sorry to hear that your daughter is struggling with anxiety.
I started with it after my daughter was born and also with lupus symptoms. It’s taken nearly 18 yrs to get a diagnosis and health anxiety has been a real issue for me. I ended up going on prescription anti anxiety meds but never felt this was a good approach for me although it settle the extreme attacks.
When I finally got my lupus diagnosis, I decided to have a bit of a health overhaul and tackle my nutrition. I have been seeing a Nutricionist for about 6 months and the changes have been remarkable. I’ve come off all prescribed medications bar hydroxychloroquine and feel amazing. Migraines have completely cleared up, anxiety a symptom of the past!! Perimenopause also controlled naturally.
I would suggest looking into it as there are plenty of natural supplements out there that work wonders 😀 … good gut management is a place to start, it balances so many other systems in the body.
That makes so much sense and so glad you have gotten to this place after so long. We understand a balanced, healthy diet in very important.
Her other problem presently (along side the anxiety) is not being able to eat very much at all. She is felling nausea around food, seeing & smelling it. She’s just managing to eat a little here and there & has lost appetite.
They haven’t yet got it under control since diagnosis and when not on steroids the symptoms are flaring up and this is recent addition. They’ve just put her on short steroids again which is along side hydroxychloroquine and added azathioprine this week.
I’ve ordered some Queasy Drops in hope they may help after hearing they have helped others on here. But getting her eating well again is important & nutrition key as you’ve found.
Thank you for your advice on this - will read that article and forward it to her.
If I’m honest my diet in terms of eating a balanced diet isn’t great. I have made some changes but probably need to do more.
I’m on a variety of supplements and it’s these that seem to have kicked started things for me. Replacing things I’ve probably been missing for years and sorting out my gut!
Everyone is different and it will be trial and error as to what will work. But it’s defo worth considering.
Supplements be good to keep up what’s missing that body needs. I have a good friend who is a nutrionist actually so will have a chat to her and get an idea of what might be a good starting place. Thank you again.
Being diagnosed with a chronic disease is overwhelming and the initial fear of everything (experiencing a trigger or severe flare) has worn off with time for me. It’s important to flag that Lupus affects people differently.
I liked the post from Beewax15, nutrition plays an important part on the way we feel. I worked with a nutritionist as well and I can resonate with the response.
I started off by speaking to the GP and getting an additional medication to my list of medicines, changing my diet and practicing meditation (using Calm or Headspace app) has significantly reduced the severity of the disease for me.
Thank you - it helps to know others have found ways to manage these things and gotten to a more stable place (with time and experience). Really good to hear and definitely going to try and look at diet and nutrition once dye is able to eat properly again.
I have just checked the two drugs you say your daughter is on and one of them can cause as a side effect - anxiety and depression. Obviously you can't just stop taking it - but it might explain why it is happening which is a good start. Another reason for anxiety is low adrenal function (she might need steroids long term depending on her adrenal function ) or that the drugs have reduced her thyroid hormone. There are supplements she can take to help - such as magnesium but all supplements need to be checked for interactions with the drugs she is taking - there is a website site I use called Drugs.com where you can check out everything you take to make sure. Hope this helps.
That’s amazingly helpful - thank you - I will make a note of that and go take a look. I hope once we have a handle on this and it’s under control we can move forward with all these useful/helpful suggestions, so living with this is much more bareable. Thank you
I really hope she starts to feel better soon bless her - bear in mind that sometimes not always the thyroid can be implicated so keep an eye on her levels by requesting she is tested regularly although I think it is being tested now more than it used to be.
Sertraline has really helped me. I didn't realise how much I suffered from anxiety until I'm out of a flare and have the energy to get anxious. I found sertraline has gotten me out of the worst of the fight or flight, my social anxiety has gone and helps me with things like every day tasks. I still get anxiety but now I have the heads pace to work through some stuff with some cbt therapy on the NHS. Hope you find a solution soon
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I am a 21 year old female, new to this site and have recently been diagnosed with Lupus. 
Anxiety
Restless leg syndrome 
