Hello everybody, this is my first post, I've been busy reading lots of posts on here and finding my way around. I'm recently diagnosed with sle lupus and sjogrens syndrome, I've got my 2nd rheumatology appointment on Wednesday, apart from all the usual debilitating symptoms I also feel really anxious and wanted to know if others can relate, its different to usual anxiety that ive experiencesd before . Its like a deep sad anxiety where I could just burst into tears, an overwhelming feeling mixed with sadness. I feel quite lonely not having the energy to do things i once did which probably dosent help as you will know it is such an awful long journey to diagnosis not knowing what is wrong and the gp testing for everything whilst you feel absolutely dreadful during the endless waiting. So glad to be able to share this finally instead of just feeling it by myself .
Can anyone relate: Hello everybody, this is my... - LUPUS UK
Can anyone relate
I get anxiety attacks in the morning, seemingly without cause.. I think it’s part of the daily cytokine release after sleeping all night. I have a definite pattern of being better after noon most days
Hi Lucy
I just wondered how old you are as could the perimenopause or menopause or general hormones also be having an affect?
I was diagnosed with SLE (and also APS) around the same my hormones became unbalanced with the perimenopause and that caused a dreadful sinking feeling in terms of mood/anxiety that I had never experienced before.
Hi, yes I'm 50 so I think that's probably adding to the anxiety x
I always get very anxious before my appointments, it brings it home that it’s now real and you don’t know what round the corner. It takes a while to get used to living with these conditions, I hope things improve for you. Take care x
Hello lovely. These illnesses make you anxious because the life you once knew has changed and you deal with something different everyday never knowing what is ,coming. Also lack lack of sleep is the worst. So I can relate. Me personsally I learnt breathing execises and meditation. I am also much kinder to myself. We have to remember we are not well so listen to our bodies and rest when you need. It took me a while to learn this. Ivebeen battling lupus and sjogrens like yourself for over 20yrs and recently had to retire from my career in child protection due to my illnesses. But my breathing has got me through. I look after myself now. So listen to what your body needs. Check you are on the correct meds and just be very kind to yourself because each day is still a battle. But I do as my body needs now hope this helps and im always here if yiu need any further support. Lots of love xxx
hi Lucylou. So glad you posted - from my experience it helps to know you’re not alone, not imagining things, and there are people who understand what you’re going through. I can relate to what you describe and remember the early days following my diagnosis and that raw sense of anxiety and sadness as you ride the emotional rollercoaster. For me, it got better as treatments started to make a difference to symptoms and my own knowledge helped me understand the conditions, learn how to manage them, stay positive, and lead a relatively ‘normal’ life again. You’ll find your way of coping but for me, my turning point is when I started to feel angry rather than sad, and resolved not to let the conditions dictate who I was. Keep learning about the conditions and importantly keep talking. Your friends here understand what you’re going through and will be happy to share their experiences and strategies for coping as you progress along your journey. Sending you hugs and well wishes
Hi I'm the same as you. Years to diagnose and both Lupus and Sjogrens. I was getting those sad feelings a lot with no real reason. Since having hrt gel I have realised I don't get those feelings anymore. I get anxious sometimes and feel sorry for myself with this condition but the weird sadness that comes and goes with no warning has stopped. Also I think hydroxy has helped too. Not sure if you're menopausal or peri menopausal but that was causing the sadness issues on the whole for me. Wish I'd been prescribed hrt supplements years ago it took until 51 last year to even be suggested, I think it would have helped no end.
Hi Lucylou. You are certainly not alone. The appointments are stressful for so many reasons. Bad news? Disbelief?Indifference? Will I remember to tell the Consultant everything? Will he / she listen? After so many months / years of symptoms, fears it is a culmination of everything at these appointments. All I can say is go prepared. Write down questions and new symptoms, have photos where possible.
As for the sadness, all I can give you is my own personal perspective. When I got sick my life changed irreversibly. I could no longer work in a role I loved. Friends dropped off as I became less able to go out and do things. I was and am socially isolated. The sadness permeates my whole life at times. This wonderful safe space helps as people here care and truly understand. We laugh and joke here too and share photos of our passions and successes. I truly hope that you find something to make you laugh, smile and find hope xx
That's what I'm anxious about, seeing the consultant Wednesday, will he listen, will I explain myself properly, it's the actual thought of going over it again although there should be notes , ive made a list of things to remember and have photos of the rash, my anxiety has got worse because I'm not social like I used to be due to feeling exhausted and ill so things become more of a big deal when you are put in those situations don't they xx
They certainly do. I always take someone with me too so that if I forget things I have back up. It does help. I also take antidepressants now as I have changed so much. Things that would never have caused me stress previously now causes me to get so worked up. In my job I thrived on stress but I have to acknowledge that I do not deal with things as I used to. Over the years the acceptance has been the hardest thing. I genuinely grieved the me I was before. Give yourself permission to be sad about what you have lost and see your GP to ask for help if it gets too much xx
appointments are a massive deal so don’t feel like you should take them in your stride . I’ve found I’ve become very defensive over the years and I always expect the worst . I don’t want you to feel like that so keep an open mind which I’m sure you will because we do hear on this forum of some really good appointments that people have had and you could be one of them xx 😘
Seems obvious but rest every day. Don't feel bad. I take a couple of hours after lunch then I can face the rest of the day. I accept I can't go out for the day without a sleep or I pay for it the next. I'm often sleeping in the car in a car park whilst everyone continues but they accept that's me now. It's frustrating but I'm lucky I work for myself so I can sleep when I need to. It must be hard to work full-time. I know I couldn't. Take care of yourself and listen to your body or it will fight you and you will lose. 😃 at least we got diagnosed and watched and medicated now. That's a help. Enjoy your holidays. ❤️
Welcome to the group Lucy 🤗💐You're amongst friends here!! I've discovered more about lupus here than from any of my doctor's.
We all have a level of understanding and compassion coz were all living this 24/7. No two lupies are the same but we find common bonds with each other n this site is invaluable for when anxiety kicks in and I believe it does for us all at certain times. Autoimmune conditions are unpredictable and very testing at times but with medications it is possible to feel better-ish.
Anxiety n depression are part n parcel of living with chronic illness..we are human after all n knowing something is wrong n not knowing what's wrong is anxiety inducing for everyone!!
Give yourself time to process it and most of all be kind to yourself..this is NOT your fault..ok?
If you haven't already check out lupus UK..you can join for £10 per year and get quarterly magazines/newsletter on all developments in research n fundraising etc. There are loads of helpful leaflets online n there are groups that meet up regularly for support..there may be one near where u live.
Post questions as u go along n I guarantee you will get support..this is such a supportive group n we have giggles too 😁You're NOT alone!! 💜🌈😽😽Xx
Hi kk, thank you for your lovely positive reply, I will definitely look at lupus uk and sign up for the information, where would I find out about local groups, maybe googling? Really happy to be part of this supportive group , you are all such a lovely bunch , it's a great space for understanding xx💗🙂
You're most welcome. Lupus UK will put u in touch with any local group. Alida Horne at the main lupus UK office..she's in the know about all the support groups. 💜🌈😽😽Xx
I really understand, i get anxious and it can be trigger by little things such as a envelope in my letter box. For me the most isolating aspect of my lupus is that I look alright but I am practically knackered. People can easily forget how unwell I am, (including my family). I am even tired of saying how unwell and tired I feel. Take care we all understand how you feel.Kind regards
Ije xx
lovely reply and I know exactly what you mean ! I get on my own nerves regarding how tired I am .. it’s so tiring being tired !!! Xx
hi lovely welcome to the group 😘. You’ve had some cracking replies so I really hope you feel less alone .
I really hope your appointment goes well but one thing I’ve learned is the rheumatologist sadly isn’t a one stop shop . Any issues he doesn’t deal with for you get back on here and we’ll point you in right direction 👍. Autoimmune so complex as you know and affects so many body parts . I used to get so upset when rheumatologists were dismissive of certain things that’s why I’m so glad I found this group .
Can totally relate to feeling low about not being able to do things like before BUT one massive plus point to it is you really appreciate little things you maybe didn’t before . You sort of get a new appreciation for the simplistic things like a coffee or feeling well enough to take a walk or concentrate long enough to read . Best bit of advice I’ve ever had is to be kind to yourself because blimey we put up with a lot that others don’t see !
Big hugs 🤗 xxx
Hi Lucylou, welcome to the group! I’m so glad you posted and shared your story with us. You are definitely not alone, many of us on this forum live with lupus or similar autoimmune disease and experience anxiety and/or depression as a result.
For me, I experience a lot of grief around my illness. Sometimes I’m still in disbelief - is this really my life now? - and other times I feel so sad about what I have lost. I definitely get anxious about the future too - what if I have another flare? What if I can’t work anymore? What if this gets worse? So anxiety for lupies is NORMAL, it’s a consequence of living with a chronic illness that is rare and complex and unpredictable. There is also a lot of research on the links between depression and chronic pain, so if you suffer from daily pain, it’s only natural you would feel down about that - at least every once in a while!
I have found a lot of comfort and solidarity on this forum. I hope you do too. Please keep us posted on your appt and let us know the outcome. We would be happy to celebrate or commiserate with you!
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