This is my first time posting, however, I have been lurking for several weeks now. I am from the US so I hope it's okay that I do post here. I've been through several lupus forums but this is one is my absolute favorite!
Now, to get into it, I haven't had an official lupus diagnosis yet (struggling with lack of medical insurance & funds at the moment) but from what I have heard from my GP & a number of other doctors, it seems that between my years of symptoms and family history, my issue is most likely SLE. I'm hoping to get it properly sorted soon so I can finally get some kind of treatment; as of right now, I am basically on my own.
That being said, I was looking for a little insight from you wonderful people. I have been struggling with a great deal of pain and exhaustion, day in and day out. Some days it's better, but most days it's worse. With my constant fatigue, discomfort, and pain, comes pretty bad irritability. I find myself being in a generally bad mood all the time and I snap at those around me. I try to tell them I'm sorry and that I'm in pain and I'm exhausted, but still, they don't seem to understand and end up feeling pushed away by me. I feel just awful about this.
Do any of you suffer from irritability and general moodiness due to feeling unwell? If so, how do you deal with it?
I'm just at the end of my rope with it and I'm beginning to wonder if I'm the only one with this problem. I feel like it makes sense that I'm moody because I'm uncomfortable all day, every day, but by the way some of my loved ones react to this, I'm starting to wonder if it's just a me problem and not a being sick problem. Any insight that you guys could offer would mean a great deal to me. I feel so alone in this sometime and worry that I am just going crazy!
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apexx
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Yes but they don't understand because you LOOK fine, for now. Has your doc run an ANA, sed rate and Crp? I am from the US TOO and had no insuranceinsurance the $200.and got.answers Hope this helps you
Everyone with any chronic illness feels like that and lupus and being young is particularly difficult because your expectations are different. There is a very good blog from the US called Despite Lupus by Sara Gorman (as well as a book of the same name) which you might find helpful (Sara waxes lyrical about resting and pacing!) and this link is a very good allegory:
Hello and welcome... of course you r welcome to post here.
Everyone is fab, regardless of where u live, even the usa... lol, am kidding.
We are delighted to have you share and I hope, no, I know that the wonderful people here can not only help, advise and generally point you in the right direction, we try to laugh, smike and have fun too.
Or me, this forum has literally saved me, without going i to detail, from the depths of hell...... so again, welcome.
Hi apexx, I am from the US as well, I do enjoy this group and they are great about making you feel like you belong. I was diagnosed in Nov 2015 and started on plaquenel. It is amazing how much better I feel being on the meds. My fatigue has gone and the achyness in my muscles is gone. I was having a terrible rash on my arms and my cuticles were killing me they were so inflamed. I am now on weekly injections of solumedrol and it is doing the trick! I wish you luck on your diagnosis so that you can finally get some relief!
but now I'm on a combined therapy prescription treatment plan that's helping me feel better @ 62 than I have since my 20s 👏👏👏👏, am A LOT less prone to moodiness + irritability....for decades I felt like I was living on some other planet full of pain and desperate fatigue + mental confusion: seems to me i'd have had to be a saint not to feel moody + irritable 😝. And of course I came to dislike myself...but, lucky for me, I spent a few years working with a wonderful therapist who helped me get my act together in time to take full advantage of the opportunities on offer when my GP referred me to rheumatology for investigations into immune dysfunction...that was 5-6 years ago...I still wonder how on earth I managed to present as well as I did at my first consultation: then I remind myself that was THANKS TO ADVICE FROM LUPUS UK & THIS WONDERFUL FORUM 🌟🌟🌟🌟🌟🌟
Thank you so much for your reply! Honestly, everyone's responses here helped me greatly and immediately made me feel better. It feels good to know that I'm not the only one struggling! But from the responses, it sounds like the biggest help is going to be actually getting treated. I don't know why I thought there would be a way to help the irritability without feeling better first! Hopefully I'll be able to get to a doctor soon. Being without insurance is terrible, being unable to work and unable to get benefits because I'm exhausted and in excruciating pain and discomfort makes it worse! Thank you again, for your reply, I will definitely be sticking around here for the great advice and relatable posts! ♥
Yes, getting treatment that is finally really helping generally has made the BIGGEST diff to me, BUT both meditation + pacing myself + getting good help from a good therapist has helped me HUGELY to cope during the many years before that effective treatment arrived. I dread to remember what I was close to doing before I finally sought out my wonderful therapist
Pacing myself has definitely been something I've been trying to do. It's difficult when my friends and family don't understand or believe me though, they tend to think I'm lazy and continue to push me. Still trying to figure out how to deal with that. I've tried sharing the spoon theory with them, but they have no interest in reading it, unfortunately. Therapy is something I would also love to get into. I was in therapy for the past 10 years but had to stop due to lack of insurance. Eventually I'd like to get back, though. Assuming I'm understanding you correctly, where you were before you found your therapist, is where I am now. It's been a struggle to just live, lately Thank you again, though, for the wonderful advice and for sharing your experience. Yours and everyone else's insight has helped me more than anything has in a while!
there was a fantastic discussion here late last summer about how to cope with family, friends, colleagues...will add the link to this reply in a mo
I've attended other forums...none compare to this one: you've joined an extraordinary community...I wonder if I'd still be alive without this forum...the solidarity & the humanity is the greatest around 🌟🌟🌟🌟🌟
Yes, I've visited half a dozen other forums dedicated to lupus and chronic illness. You're absolutely right; none compare! I am very happy I landed here and everyone is so welcoming, regardless of where you're at in your journey, what you're going through, where you're located, etc. It's really been very helpful to me, and I imagine, many others!
And thank you so much for that link! That is absolutely perfect! I'm going to save it so I can look over it whenever I get those types comments! It's absolutely perfect. Thank you so much, BarnClown! You are a wonderful person ♥
Am blushing: am just following the lead of our fellow forum members who have helped me way beyond any hopes & expectations over the past 6 years....and by asking your questions + giving details of your immune dysfunction experience, you're helping everyone here too 🌟🌟🌟👏👏👏🍀🍀🍀🍀
I'm also as yet undiagnosed. I'm convinced the irritability is all part of it...it seems uncontrollable some days! Poor kids!!! I take it as my indicator that I need to go and hide somewhere quiet for a couple of hours and let the brain reset.
Yes! I absolutely feel the same way! I try to explain to those close to me that I feel out of control of my irritability some days! It doesn't seem to help, they just don't understand. But how could I expect them to? I've been doing the same thing, in hiding away. At this point, though, I've been hiding away for days. I just hope it gets a little easier at some point. Thanks for sharing your experiences, 1985mum; I hope you're able to find your diagnosis soon!
Totally expected apexx! We, I feel I can say with confidence , share the same situation. If you are in chronic pain and you're naturally tired from coping with that , you will be irritable . Here's to you being seen by a rheumatologist and begin treatment soon. 🌱
Battling similar things to you in the UK with a fully funded health service is hard it must be so much harder with health insurance etc added into the equation - best of luck
Irritable isn't quite a strong enough word for it! Outright bad tempered and stroppy is what I can be with stubborn pigheadedness thrown in. Followed quickly by a desperate need for a hug and love and tenderness and amazement that my partner doesn't feel that loving after my strop. 😉 It's a roller coaster - I only have limited energy so I get cross at things/people wasting my precious resource.
I've recently had what I think is steroids (my GP doesn't know either until the rheumatologist gets around to writing the clinic letters) and I've had a deep dip in mood to the point of feeling unloved and suicidal (I'm not a risk don't worry folks). My rationale head knows it's the drug. The crying uses up so much energy. It's not something I want to share with my partner. I haven't a clue how long it will last until I know what was administered. With all this going on I can be a little cranky.
My partner and family have found the lupus uk stuff gave them insight and the other stuff you've been given about living with lupus. In an ideal world there would be help for them too - my partner is going through pretty major life changes due to my health and he doesn't even get the pleasure of being ignored or dismissed by a rheumatologist like I do.
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Thank you again, though, for the wonderful advice and for sharing your experience. Yours and everyone else's insight has helped me more than anything has in a while!
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Update and how do you cope being sociable? 
SLE and APS but ?fibro pain (different pain) 
