Depression after lupus remission ! : I'm lupus... - LUPUS UK

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Depression after lupus remission !

Nonnagamal profile image

I'm lupus patient on remission for 4 years with no medication no flar but i am always depressed , suferring from anaxiety, hair loss , mood swing . Im so tired but all my lab. Results are normal

15 Replies

So glad for your remission but sad for yur depression, try excersize, eating healthy, stay positive,

I dont know i feel so fargile mood swing killing me is that due to lupus ? Before infection i was a better person :(

HI Nonnagamal, I ha e Lupus SLE but swayed away from Rhuemy Dr's until recently. I do take Neurontin 300mg (3) three times a day and on anti depressants but I am Very depressed, losing hair and tired all the time. My tests don't come back bad either. But my hips, legs hurt really bad. Hopefully this new Rhuemy Dr will have some answers. Ohhh, and I have headaches everyday all day! Any one with suggestions, tinky52

Nonnagamal profile image
Nonnagamal in reply to Tinky52

Joint pain is a friend i dont know what to do , when people see my tests good they think im a lair , i took antidepressent for 2 years then i stopped it cause no effect on depression :(

Paul_Howard profile image
Paul_HowardAdministrator in reply to Nonnagamal

Hi Nonnagamal,

I'm sorry to hear that you are struggling with depression and fatigue. Sometimes it can take a few tries to find an antidepressant treatment that works for you. Perhaps you could go back to your doctor and see what other options are available? Have you ever had counselling or psychotherapy?

For more tips on managing fatigue we have a blog article which you may find helpful - lupusuk.org.uk/managing-fat...

Mandagee profile image
Mandagee in reply to Tinky52

Sounds like fibromyalgia. I have this and many of your symptoms round very familiar too me.I also take nuerontin and antidepressant.I get zomig for headaches.also ibuprofen for inflammation.tramadol to help with joint pain.keeping hydrated and getting a decent rest helps with headaches I find.

I feel for you, I too feel down in the dumps. When I am having a flair I go to my GP'S nurse and my bloods taken, guess what they come back as normal. It's so frustrating. Sorry this has not been much help, only you are not alone.

Have you checked your vitamin D level? Check it if you haven't bcos deficiency of vitamin d can cause you to be depressed, mood swing and feeling tired.

Georgia-11833 profile image
Georgia-11833 in reply to

I tried Vit D3 which all dr's seem to insist is the gold standard now. The d3 pills, or gels, bother my GI tract terribly. Apparently this is not unusual and instructions are to take with fatty meal. Still no relief. Does anyone know of a brand of D3 that is vegetarian instead of derived from lanolin which comes from sheep skin? (Taking Zantac to relieve GI symptoms from D3 makes the D3 ineffective. Frustrating!

Having lupus can trigger other conditions.depression is common with alot of long term illnesses remission or not. Has your doc looked at chronic fatigue syndrome and other similar conditions.keep talking to people and visit gp .you don't want to live like this long term .we r here if you need an ear to listen.

My dear..Recently they found that I also have lupus. Being also depressed and full of fears I understand you totally..But keep on being more optimistic! PLEASE! Go out for shopping or distract yourself with other ineteresting things! We ALL HAVE TO BE FULL OF HOPES THAT SOON THEY WILL FIND A GOOD MEDICINE THAT WILL HELP ALL OF US TO RECOVER FROM sle ONCE AND FROM ALL!! LET'S PRAY FOR THAT!! NOT BENLYSTA HELPING 1 FROM 11 CASES AND HAVING A LOT OF SIDE EFFECTS!! BUT REALLY A GOOD MEDICINES THAT WILL RESTORE OUR IMMUNO SYSTEM!! EVERY DAY I USE THE MIXTURE OF CURCUMA POWDER - 1 TEA SPOON AND GINGER A PIECE CRUSHED AND THREE PIECES OF LEMON - EVERY MORNING EAT THIS MAGIC MIXTURE AND YOU WILL STRENGTHEN YOUR IMMUNO!! aND BE MORE OPTIMISTIC!! FALL IN LOVE!!! I WISH YOU ALL THE BEST!!

GERY profile image
GERY in reply to Ellie-61

thank you Ellie 61. i shall certainly try this mixture. KEEP WELL

I'm sorry you are struggling. I too am struggling with depression right now. It's so strange for me as this has never been my nature. I am usually a very content person but this last couple weeks my body has flared and I feel so sad about my situation that I just want to cry. I'm not a cryer either. It's kind of hard to say, I mean I have reason to be depressed. We recently found out that I need to go see a cardiac specialist and I also have lupus mastitis. Which is a very rare manifestation of lupus. There have only been 30 documented cases, so we are also trying to find a breast specialist that can help me. For me it's so hard because my medial team says I have sle but weird sle, that they say they don't think there is a name for yet. So basically a lot of overlapping conditions as well. They tell me that's why it's so severe, hard to control and unpredictable. My labs have been abnormal for years even being abnormal don't show up as to what is standard for sle. I will tell you with all my experience with several rheumatologist before I found the good one I have now. That even if you labs aren't showing a positive ANA you can still be in active disease. Quite a few people with lupus have their ANA go back and forth and then there is a certain percentage of us that are seronegative. Meaning our blood doesn't show the ANA antibodies, but we have all the physical symptoms. It's a very old school training that you can only have lupus if you test positive for ANA. I was talking with my medical team at my last infusion and they were telling me how 50% of RA patients test negative for RA. So these blood tests used to determine autoimmune disorders are not always very reliable. It's hard because there is so little know about most autoimmune conditions, what causes them and how to treat them. And we all respond so differently. I have many different symptom, my body is a absolute mess, I have to use a wheelchair as I can't walk any distance anymore because of heart rate and lung issues and I'm stuck in bed a lot of the time. But this last couple weeks the depression and fears of things that I know better about have been eating me up. So yes the depression and anxiety is a result of sle. You can research it but if the sle is effecting your nervous system, it can cause all kinds of psychiatric disorders. My dr also told me that chronic pain can cause depression. When you are in pain all the time your body doesn't produce as much serotonin. Over time your body starts to think this lower level is what is normal and stops producing enough. So that is another way that chronic illness does damage and makes you feel depressed. I hope some of this info helps and I hope your body calms down soon so you can feel better. I can tell when it's a flare going on because I mentally and emotionally don't feel like myself.

Perhaps the depression is a separate issue. Talk to your Doctor. Anxiety can cause depression. Just the anxiety of the Lupus coming back is enough in and of itself to cause anxiety. Take good care of yourself!!!

Hi Everyone. I was also told and read that you can be in a flare but your ANA doesn't show it. When my rheumy says well your bloods were ok,yet I have been really ill from the Lupus I say to him "You know it doesn't always show,but it doesn't mean you haven;t got it" and I get this grin from him.he always says i know more about Lupus then he does.

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