I have Sjogrens (diagnosed by lip biopsy) and take 300mg hydroxychloroquine.
I unfortunately had to have emergency surgery for ovarian torsion 10 days ago. Pain-wise doing really well (I’ve had 2 other endometriosis surgeries in the last 6 years and this one pain wise isn’t too bad).
Last week my energy levels were ok and I wasn’t really napping. This week, I am suddenly floored and in and out of sleep most of the day. My arms feel as heavy as rocks and when lying in bed I genuinely have to remind myself that I can move to convince myself to urinate. A lymph node under my chin is very sore and raised since Monday.
I tried yesterday to get out on a short walk and then make dinner with rest in between but have woken this morning feeling like I cannot move.
I have a very stressful job as a lawyer in the city (working 14 hour days on the regular) and we are in the process of a house purchase, wherein we are reliant on my wage and all the hours and stress that goes along with that.
Every time I’m unwell like this, I wonder how long it will last, will this be my life, can I do my job and other derailing thoughts.
If anyone has any positive stories to normalise how my body is responding to the surgery or otherwise any suggestions to pull myself out of this, I’d really appreciate it!
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Mumpet11
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Eekk mumpet you won’t want to hear this probably but surgery only 10 days ago is bound to floor to you . Also had many surgeries for endo and I used to find I got a rush of adrenaline in first week post surgery then crashed . A bit off piste I know but any possibility you could be anemic ? When did B12 and ferritin and D3 last get checked ?
You do incredibly well holding down a job and isn’t house moving meant to be as stressful as death and divorce 🤦♀️. Dare I ask if you’ve got a follow up post op ? I used to get post anesthetic blues but it did pass.
I think you need to cut yourself some slack hun . Managing an autoimmune disease is a job in itself throw in surgery and a house move and bam 💥 you’re gonna feel whacked. Try not to push it If you possibly can. Rubbish cliche but sometimes relevant ..take each day as it comes 😘 xx
ps could you send pic of lymph node to GP .. I know sjogrens can cause raised ones but wouldn’t hurt to get it checked out
Hello Mumpet. We are all different with our autoimmune symptoms. Autoimmune doesn’t like surgeries. After several in the last 16 months I can say my fatigue level has not drifted into any kind of normal life. My body is healing and I must follow its lead. There is no “pulling yourself out of it.” You can try but I fear you will be set back more. Eat well, exercise in little bits, sleep. If you can afford some high quality vitamins I recommend liposomal B, C, and D separate bottles) made by Pure on Az. They work tremendously well. Best, MM
Hi Mumpet11, you've had two excellent replies so far and I can only echo their sentiment.
I think I'm a lot older than you but had two hospital stays unexpectedly in early 2022 that floored me for a long, long time. You do have to give your body time to get over the shock to your system.
Take rest whenever you can, laying down rest I mean. Anaemia has been another problem for me and with treatment still takes months to get back to normal and feel some energy again.
You will feel better eventually but realistically, with all you have going on, you may need more recovery time than you imagined.
You should be able to hold down your job, I worked as a Lecturer for 30 years until retirement, but may have to make adjustments and be more aware of your health. Make sure you have a good relationship with your GP and consultant/s.
Good luck to you just now and try to take the required time to recover from your operation and gradually be able to do more. 😊
It's been my experience with Sjogren's & Lupus, to expect the wind to get knocked out of your sails for an undisclosed length of time. I like that you're talking to your body. Keep doing that and remind yourself the powers that lie within to get up and move. And while you're lying in bed, please do deep-breathing exercises. It's important to expand your lungs to their capacity, especially if you're immobile, so as not to allow phlegm to build-up in those lungs.
You'll bounce back. I had a flare that lasted 8 months but I kept working. Granted, my job is no where near as stressful as yours. But, I'm 62 and stubborn, with no one to push me but myself.
if possible, I would invest in an infrared sauna. It completely changed my life. I also take liquid glutathione and when I can afford them, stem cell patches.
Hi Mumpet - Sjogrens too. Perfectly normal in my experience to be floored - a chest infection can do that for me let alone surgery! I know the 'can't move' fatigue well from when I was having chemo. However had just acquired a puppy (usual good timing) and this forced me to crawl out of bed and take her out for 30 mins. Even though I was sure I couldn't do it, I did and actually felt a bit better for it. Also felt I had justified returning to bed.As for the gland - could it be a saliva gland? If so, I daily exercise and massage mine. Try tucking chin in and dropping head a few times?
Also very familiar with the fear of the future. I have to remind myself that I can manage altho may have to adjust and find new coping strategies along the way. You will feel much better in time - just a bit longer than drs lead us to expect. You will feel better if you make sure you put effort into looking after your health. It helped me to explain this to my employers. I managed to work full time until I was 55 and then part time after that. Like you I was the major wage earner and I had planned ahead to make sure I could pay off the mortgage and access a pension. Helped me when I was suffering the doubts and fears that hit us all. Wishing you all the best xx
I take omega-3, magnesium, zinc and calcium, D, B12 daily and when I’m generally well that helps.
Your comments have all helped me have some hope that this will ease soon - fingers crossed! I am trying to be patient and kind to myself, it’s all just incredibly frustrating.
hi sorry to hear about your surgery, I had to have emergency surgery whilst on holiday for a burst diverticulum and have ended up with a colostomy. I felt really good in the hospital better than I’d felt for years but after getting home ( flights and ambulances) I too was totally floored. I got back to this country beginning of September and have been totally fatigued ever since but then suddenly last week I started to feel much better and even had 3 days without an all afternoon nap! Unfortunately I got bitten by some insect and have now developed cellulitis so trip to the Drs!
I had my Covid and flu vaccines exactly a fortnight ago to the day that I started feeling much better so not sure if that was coincidence or that I’d been in a flare since coming home or just down to the surgery and things improving, I also had one dose of vit C (effervescent tab ). The day before I felt better so your guess is as good as mine but it has taken 2 .5 months from the surgery to feel better so give it time, a nuisance I know but pace yourself and try to do a little more each time and hopefully like me you’ll suddenly improve. All the best
good morning, I’m new here but all these post really reasonate with me. My Rheumatologist suspects Sjögrens too aswell as lupus and antiphospholipid.
Sometimes I find it’s an accumulation of stressful life events and a physical illness or event that can trigger me. This flare up has seem to be the perfect storm and hit me like a tone of bricks. For the last few days I’ve found myself feeling guilty, trying to prove to myself and others almost that this is a ‘real thing’. I’m a nurse in A&E and have just had to ring in sick as it was ridiculous to think that I was going to do 4 14 hour shifts this way and most likely make myself so much worse. I feel so guilty and lazy.
Please don’t try to push thru, as much as that’s difficult as I have found it just extends the flare up and makes u feel so much worse. U have to be no1 right now and concentrate on just recovering from this awful random weird crazy flare x
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Needing a bit of a talking to...........
Work??
I'm so tired of being tired and in pain!!!!
Can't seem to quite get my Lupus under control. 
Shoulder problems
