Hi all I seem to be having a huge flare at the minute been in hospital with GI issues ct scan showed enlarged spleen and now I have pericarditis. I am so fatigued I just can't stay awake and feel really ill....has anybody else had a series of 1 issue after another that just takes its toll....and if so how do you cope? I'm getting really down in myself mentally.

8 Replies

  • Yes,I have had one thing after another and I can empathise with pericarditis/serositis, abdominal serositis, inflammation in my brain and that's not to mention POTS, joint pain and burning skin. I've been in a flare since 2014 and hospitalised on a multitude of occasions.

    I am really tired now so will limit what I say but my advice would be.

    1. Listen to your body about rest.

    2. Listen to your instincts about treatments. You know your body's yours!

    3. Rely on/ lean on family and friends. You cannot do this yourself however much you think you can.

    4. Ensure you have a supportive GP. If you don't, change them.

    5. At your very darkest times, remember that things can improve. There is so much support here on this forum. Post on here as much as you can. Rant aeay, blow off steam, ask for a cyber hug. You need a place to get rid of any stress because that will only make things worse.

    I was al my wits end and had pretty much made a logical decision to end my life. If it wasn't for family and this forum and a good medical team I wouldn't be here. I couldn't understand how I could possibly carry on for one more day if not being able to walk, breath, ever sitting back in bed was agony due to my inflamed pericardium. Well, I don't want to jinx anything and I am far from well but I have just spent 3 weeks living independently for the first time since 2014! So things can get better from a very fire situation. It's very early days and tiny baby steps and I had a lot of complications that may not be relevant to you BUT there is hope and there is support here. I would take things day by day but sometimes that was too much of a challenge for me so I would split the day into threes. Morning, afternoon and evening. I'd get through the day like that aiming to have one comfortable/positive section to the day.

    I am so sorry you are in this state. I really do feel for you. Please keep us posted and let us know how you are. Gentle hugs.

  • Hi Nicky

    So sorry to read your having a bad flare and been in hospital. A friend who is in St John Ambulance said to me for every day your in hospital add ten days of recovery so that's a long time!. I like you have suffered with one thing after another which is tough and can get you down. I suffered with pericarditis for years in and out of A&E and hospital stays not getting on top of pain sufficiently and it's very frightening isn't it?. Then after numerous tests I had a breakthru from my Rheumy prescribing Colchicine, a strong anti- inflammatory used to treat gout!. It's been a fab treatment and I've been lucky in that I haven't had diorrhea problems!. That is a side effect you have to watch!. I wonder what treatment you've been given for it?. It's enabled me to reduce steroids which I just coukdn't do !. I bet you've had yours put up if your on them and then it's tough trying to reduce!. I do hope you feel better soon, lots of TLC as your going thru a lot. Keep posting. X

  • I have chronic gastritis, erosive oesophagitis and hiatus hernia so I can't take any anti inflammatory drugs. I am reluctant to take steroids again due to side effects and weight gain so I am trying to manage pain myself but seem to be failing, got an mri on the 6th and dependant on the extent of the pericarditis then steroids may be needed. I am currently sleeping/cat napping sat upright as the pain is unbearable when I try to lay down. I just feel so low in myself at the minute as I feel nothing in my body is working as it should joints/feet/shoulders/neck etc hurt so bad, I have inflammatory diverticulitis which is why I was admitted to hospital where they also found my spleen is enlarged. I hate feeling like a victim and that my illness is controlling me and usually have a pretty positive attitude but I just feel overwhelmed by it all at the minute. I must thank happytulip for your wise words and misty14 for replying, I would never wish for others to be ill but hearing that I'm not the only 1 fighting this battle actually encourages me to not give up. Xx

  • Hi Nicky

    So sorry to read of all your problems, it must feel overwhelming!. When you were in hospital did you also see your Rheumy because I'm wondering if your overall lupus treatment could be looked at to help all your conditions that are inflammation based. ?. When I was in hospital with pericarditis I had to either have extra steroids or morphine because the pain was so bad and it felt so like a heart attack!. You could ask your GP for better pain relief. It is tricky though having all your digestive conditions at the same time. It's hard juggling it as steroids can affect your digestion so much!.?I've got a hiatus hernia and take ranitidine. Did you get treatment for the diverticulitis ?. My mum has it and it's not an easy condition to live with!. Did you see a Gastro there?. I do hope your better soon as not sleeping is awful and doesn't help you recover. Good luck for your MRI. X

  • Hi Misty, no unfortunately my rheumatologist is at another hospital so didn't get to see him while I was in hospital, I see him on the 10th April though so I'm hoping he can give me some advice. I was admitted on a drip and nil by mouth to rest the bowel and then given intravenous antibiotics and a 10 day course of metronidazole to come home with......antibiotics antibiolways seem to make me feel rubbish too. The chest pain is getting unbearable.....I am tramadol, paracetamol and I have oramorph as a last resort but it still feels like someone is stabbing my heart.....I'm going to see what tomorrow brings but might end up going to A&E if no improvement because I don't think I can cope until mri on 6th as I am. Thank you for you advice it means so much. X

  • Hi Nicky

    A&E is the only place if the pain keeps worsening. It's what I kept having to do. Good luck for 10 th April Rheumy appt too, pity you were in a different hospital and didn't see him!. I've taken Metrodonizole and it's helped me. Do hope your better soon. X

  • I agree with Misty, don't rule out cholchicine, I have gastric problems too but have tolerated it really well. It has really helped my pericarditis and I haven't had any side effects. I've been on it for almost 2,years. I'm sure it's kept me out of hospital! X

  • Hi Nicky79,

    I am sorry to hear you have been feeling poorly, fatigue is one of the most common symptoms of lupus and reportedly affects almost 90% of people with this autoimmune disorder. Last year we published a blog article on ‘Managing Fatigue’ containing helpful tips and information which you can read here: .

    Lupus affects everybody differently; making it rare for two people to experience the same exact symptoms. If you would like someone to speak to we have local LUPUS UK contacts that cannot give medical advice but are there as a listening ear to offer support and advice over the telephone. These contacts mostly have lupus themselves and are volunteers. If you would like more information on having a local contact to speak to, as well as information on support group meetings you can email me at . We also published a factsheet that contains services and support helplines which may be of interest to you:

    Wishing you all the best, let us know how you get on.

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