I just don't know anymore

I don't even know if this is associated with my lupus or not. But lately I've been having the urge to just cry for no reason. I get jittery. My hands start shaking and I just don't understand. My dr gave me citalopram saying anxiety and sent me on my way. I just don't know what's going on with this and my body aches doesnt make it any better.

16 Replies

  • Hi,

    I read your post and felt I needed to reply. I am a retired Eye Dr. in the USA. I retired early because I too have Lupus (was so overwhelmed by fatigue that I was forced to retire early). I am not an expert on Lupus, but I don't think your symptoms are from Lupus (but could be a result of having to live with Lupus). What you describe appears to be anxiety and/or depression.........and trust me, Lupus can cause one to become depressed and/or anxious. From what you describe I believe your Dr. is on the right track........it may take a while for the medication to start to work (most anti depressants do). You must remember that no one except your own Dr. knows your medical history and what is best for you. He/she can tell you about how long it takes to start working. I would suggest you only listen to your own Dr. and no one else on this post.

    Good Luck,

    Dr. S.

  • Hey, Vaderpiper!

    There's an excellent book, The Lupus Book, by Daniel J. Wallace, MD. In this book, the author explains the effects which lupus can have on each organ system of the body.

    Of course, not every patient experiences every symptom. Thankfully, most are spared the effects lupus can have on the CNS.

    I gave up a private practice in orthodontics as well as a university professorship, research lab and two grants I had been awarded by the NIH because I developed lupus. One of my initial symptoms was clinical depression. The depression would not remit until my lupus was controlled with steroid and methotrexate treatment.

    It is entirely plausible that lupus causes serotonin depletion in the brain. Treatment with Celexa (citalopram) increases the effective amount of serotonin.

    I know how difficult it is to have to give up a private practice because of illness. I hope that you are feeling well at this time.



  • LORELEI........Thank you for the explanation and title of the book. I will enjoy reading about something I know little about but suffer from. Your explanation makes sense as I am sure you know Lupus can affect all your organ systems. My expertise was in Ophthalmology and was frustrated that I could not figure out what was going on with me even though I suddenly deveoped frequent headaches, fatigue and disturbed sleep. Fortunately a good friend of mine suggested I come to see her in Johns Hopkins (in Baltimore, MD); her specialty was in Internal Medicine but doing research on Lupus. After going undiagnosed for almost 3 years, she thought she knew what I had on the 1st visit. When I asked what she thought it was, I was a little shocked.......she said more than likely it was a vasculitis. That never entered my mind and it should have! As it turned out, my ANA was high, my ESR was high, I was slightly anemic (anemia of chronic disease), and my DS-DNA was very high. When I was in medical school (a million years ago) of course we learned about Lupus and it's different types. I never thought that the rash I would sometimes get on the back of my neck after being in the sun was Discoid Lupus (I remember the most obvious.....the 'butterfly rash' on the face). After multiple testing, I was diagnosed with, Systemic, Discoid and CNS Lupus......I guess the good Lord decided to bless me with all 3 types. I am on multiple meds which make my life certainly more bearable with the exception of the overwhelming chronic fatigue.

    It's tough to study so hard and long to do something in life you will enjoy and then for no reason of your own doing become unable to do so. I certainly empathize with you.

    Again, I can't thank you enough for your explanation and the title of the book.

    Best Regards and good luck in the future.

    Dr. S

  • Are you on steroids like prednisolone or doing a pred reduction? When I have a lupus flare it always has the same pattern of fatigue, then depression which moves on to joint pain. The depression I get can get pretty intense at times although it seems to be short lived thank goodness. However, the symptoms that you describe are the exact symptoms I get when I either increase or decrease steroids. Just a thought. I did try citalopram and other SSRIs but they all made my joint pain about 10 times worse. That doesn't mean that will be the case with you though. I hope you feel better soon. Remember that Lupus is a totally crappy illness and it is perfectly OK to feel tearful and jittery about it at times. I took me a VERY long time to realise this as others made me feel guilty and silly about expressing my anxiety. It just means you are human and dealing with a horrible illness that you have to wake up to everyday. And yes...I also need reminding of that sometimes too.

    Feel better soon. I hope these feelings pass soon and in the mean time keep in touch on the forum xx

  • Thank you so much. No steroids yet till rheumy confirms everything. It is short lived but dang when it hits me it hits me full force...and I'm not the crying type which is why I guess it's hard. But venting to ppl that understands help a lot and doesn't make me feel crazy or a hypercondriac...

  • I understand how you feel. I too have those times when I just feel like that and cry easily and feel anxious and jittery. I believe it is due to what our bodies have to go thru dealing with lupus and also all the meds. I personally refuse to take antidepressants so just try to focus on something positive and get myself out of that mood. It's not easy but with the help of God and the support from my best friend I make it thru.

  • Hi rantana

    Sorry to read your having a tough time. I can be very tearful if in a flare or reducing steroids. It's a tough illness to deal with on top of life's difficulties!.

    A word of caution about Citolopram. It starts off working and then after a fortnight or so your symptoms might come back. If so you need to see your GP and tell him and he should change it. Give yourself a lot of TLC and be better soonX

  • Ratana,

    Depression is one of the most common symptoms of lupus. I have had depression along with lupus for the past 20 years. Depression can make you feel like crying even though you don't know why. When I am depressed, I can have trouble concentrating, so much so that I have trouble doing the simplest things like getting out of bed in the morning, taking a shower, making a meal or understanding what I read.

    Citalopram is a wonderful antidepressant. I've been taking it for 8 years and have not had a spell of depression since then.

    You need to know that it may take 6 to 8 weeks before there's enough citalopram in your body to make you feel better.

    Don't give up on it. Keep taking it. Slowly, in subtle ways, you'll begin to feel better. The little things you used to enjoy will make you happy again.

    It would really help if you could see a counselor or psychotherapist. Talking to him or her for an hour a week can help you understand why you are feeling and thinking like you are. Also your counselor can let your doctor know if the medicine you're taking is helping you.

    I can't say that I know exactly how you are feeling but I do know how sad, helpless and anxious I feel when I'm depressed. Citalopram has been a tremendous help to me. Stick with it. Reach out to family and friends for support. Talk to them about how you're feeling. It was a great idea to post this question on this forum!

    I hope that you will be feeling better in the next few weeks. I'll be thinking about you. I hope you'll let us know how you're doing!



  • Funny you mentioned the shower part I thought I was going nuts. I am not the only one then, this happens?

  • I agree with Vaderviper - listen to your Dr. Other posts have told you that depression goes hand in hand with lupus - why wouldn't it? I am losing my hair fast - I have finally given in and taken anti depressant - wish I had done it sooner. Back to my upbeat self. Give the pills time - things will get better.

  • Same thing happens to me I get very scared. Now I have something new too I itch.

  • I understand I get the same feeling and it terrible. I sit and pray and pray .

  • 👣👣👣👣👣👣👣👣👣👣👣👣


    I don't know if you take prednisone but, I do and one of the side effects is emotional issues. You may become angry over nothing, get depressed etc.

    I at times have all of the above and a few more.

    Hope you get to feeling better soon



    👣The Barefoot Gardener👣


  • Yes I take predinsone. Not a good feeling it seems like panic attachable. Thanks for answering.

  • Hello. You are not alone with this. You've have some great responses. Lupus and depression come hand in hand. It's a chicken and egg situation really. From my understanding they do not know for sure if the depression is part of the lupus or as a result of living with a chronic illness. I guess for some of us, it is both. I have tried to explain to my GP, Rheumy and Dermy, that if I cry at a consultation it means I am not well, at all. I am usually a strong, determined, independent woman but a flare up reduces me to tears VERY easily. But unless the doctors know you, they just think that is the normal you. I have cried in situations where I am so embarrassed, but I just can't help it. It can be medical appts, in the staff room at work, in the toilets at work, when out for a meal with my girl friends recently and talking about giving up work......It just comes on and I can't stop it. I get anxiety too. Before diagnosis and starting medication, I got anxiety and paranoia really - I started to hide from situations and was unsure if my friends really wanted my company and I would get shaky when I wans't comfortable. Luckily, for me, the hydroxychloroquine ended the paranoia and anxiety. Although if I am flaring I do lack confidence sometimes. I guess it just makes you feel vulnerable. Anyway, make sure you are honest and open with your doctors and your friends. I try to be as open as possible with everyone I know about my illness and flares, I think it's the only way to increase peoples awareness and understanding. Luckily for me, my husband, family and wonderful friends accept me, warts and all. I hope these replies give you some support and that you know there are people who feel the same way. Good luck.

  • Wendy39...couldn't have put it any better!x

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