Feeling emotionally numb

Hi, since I started Mycophenalate last yr I've been feeling emotionally numb & don't show any. I don't feel motivated/creative. I had Shingles for a mth last Oct & been severely anaemic since so my energy levels are random. My body isn't absorbing iron so I have to go to hospital for Endoscopy & Colonoscopy. I've been told that I may have abnormal bleeding or organ leakage? Have any of you been thru this? I don't even feel like myself at the moment

12 Replies

  • Hi Mag, when I first went on myco some years ago this exact thing happened to me and I came off it as I was actually afraid of what I might do to myself. I then took a massive flare and was seriously ill, at the same time I got a new rheumatologist and she explained to me that it wasn't the myco causing the depression but rather coming down off my high steroids too quickly. I researched this and she was right, she also tested my vit D level, this was very low, another cause of depression. I restarted the myco and got the flare under control and reduced the steroids much slower and the awful depression never returned. Hope this helps in some way 😀

  • Thx for your reply. I'm too scared to come off Myco as I don't want to have a major flare up & be in pain. Guess I'll monitor my behaviour. Hopefully once the Anaemia is treated I'll have more energy. I'm still adapting to my new self which is a much slower version

  • Yes anaemia causes terrible lethargy, my iron levels are very low also at the moment but I'm hoping a course of ferrous fumarate will sort it out. I had an endoscopy done all was normal, I had it without any relaxing meds, not a good idea, take everything to make it easier! With these conditions you have to accept a 'new normal' but this takes time so go easy on yourself x

  • Your comments are easing my frustration. I'm feeling low today. I have to deal my Lupus by myself. My family & few friends refuse to accept that I've changed. I'm coping ok but would be nice to have some support x

  • Are there any Lupus support groups near you mag? Also you should think about becoming a member of Lupus UK and ask them to send you literature which you can show your family and friends. It can be a very lonely and frustrating time but keep sharing on this site it will help you, we know exactly what you are going through xx

  • Hello magSLE,

    I'm sorry for your hardship, and hope you don't mind my entering this conversation, but what you describe sounds so familiar (though I haven't been on "Myco.") Would you mind telling what it is?

    For 20 years, lack of energy and "terrible lethargy" have been worse than SLE&DM at times (though SLE was killing me). At first, I got a "steroid-high"(like super-woman), but finally tapering down, depression hit --the same time my husband got cancer (2002). That's when we heard some family and friends never believed I had a "real illness," that steroids caused weight gain, or that my husband was Ill too. My poor husband was furious when his mother and sister told him they didn't believe me (or possibly him !) and judged me for "laziness" (energy drain from adrenal fatigue and depression re. my husband's cancer). I sent medical proof, put my needs last to care for my husband and son, and became the care-giver for several years--until my husband passed Jan. of 2011...

    We both should have sent proof years earlier. After he died, those family members got worse. They lived far away, so never saw us both go through chemo, pheresis, or drop 75 to 100 lbs. from treatments or stress. To this day, my son and I never hear from my estranged father, mother-in-law, sister-in-law, and their circle (facts we sent had become irrelevant).

    Some family and friends were supportive and caring, but nearly all of them have died...At 48, I wasn't ready for my world to end and have not given up! I'm currently looking into ways to: clear "brain fog," promote alertness, find a supportive church, a place for music, and have lost most of the steroid weight. Please share any ideas you have on fatigue? I would be most grateful! Hang in there, and don' t let anyone re-define you or the battle you fight daily. There's always One who knows the full truth!


  • Yh there's a Lupus group nearby but I've been too weak to go. Hopefully energy will be better for us both once Anemia gone. I've educated my fam & friends about basic SLE but I swear they think I'm making it up. If I give them lit, they won't read it as "they're too busy" so I'm self sufficient & just do what I need to deal with the symptoms. My life has changed dramatically x

  • That's a shame Mag, I hope when something like this comes to their door one day ( and believe me it will!). They are shown more compassion and empathy than they have shown you. Take care x

  • I wouldn't wish Autoimmune disease on anyone but some people only understand pain when they feel it. I'm focused on my health now. Thx for chat. Well needed! I'm already feeling better. Take care x

  • Hi mags

    Lupus uk have trained contacts you could ring if you can't get to a group. You will feel better once you've come thru those tests and your anaemia is treated. That can make you feel rubbish. Keep posting on here as we'll always support you.

    Best of luckX

  • Hi Misty14,thx for your reply. This post was written last year which was a difficult one as I had numerous testing for each organ. A breast cancer screening due to a cyst & cervical cancer screening which were Fibroids & Endometriosis. I live with 9 health conditions. I went thru it all alone as my fam & friends have had their own issues to deal with.

    I have contacted Lupus UK & regular attend my Lupus Support Group which at the least has distracted me fr feeling alone & they are active about promoting awareness which I'll be getting involved in this yr. Also I'm having counselling to move forward fr my health trauma. I'm still Anaemic but my body is absorbing iron now. In April 2016, I'm joining an Expert Patients Programme which is for people with long term health conditions & gives advice about positive coping strategies. I've started doing Yoga & Pilates again to gently build up my body muscle & stamina which has wasted away.

    Thank God things are slowly moving forward in my life. I actually feel a lot mentally & physically stronger. I pray that positive things are happening for you as well x

  • Hi mags

    What a wonderfully positive post you've written despite so many health problems!. I did an Expert Patient Program a few years ago and found it helpful, lovely meeting people affected similarly. I'm part of a patient support group now for pain which I'm finding helpful and have made new friends. It's so important to share things , makes it easier when you know your not alone!. I'm sorry your family don't want to know, I have family who have never understood but am so appreciative of my friends as they are so different!. Lovely your involved with your local lupus group too, enjoy everything and I hope all your health problems behave as much as possible. X

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