LUPUS UK

"Regular" illnesses with Lupus

Hello all, I have been lurking for awhile and don't post much, although I love the humor posts they cheer me up when i am having a bad day. I have a question for everyone, How do you handle "normal" sickness with your autoimmune diseases? I am currently struggling with what started as a sinus cold and then moved into bronchitis (caught it before it became pneumonia) and am on antibiotics and steroids on top of all the other meds I take. I am supposed to be feeling better by now at least somewhat but am just exhausted and still having difficulties breathing , both because apparently i also have asthma and because the mucous chokes me. Everything is taking more spoons than I have. I can't take any more time off work, I can't afford to. Tips?

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Hi Aralyn

Sorry to hear you are having a struggle. 😏x

You have obviously succumbed to the dreaded ’lurgi’ like many of us over the festive period. It’s no meant feat- I can vouch for that. I too have had severe sinusitis, chest infection and laryngitis for the past 8 weeks. I have had 6 weeks + the 2 over Christmas period. I am still not coping well too. I have asthma and am on the second lot of antibiotics and steroids. 😏Asthma has been aggravated by the chest infection, sadly.

People that do not have AI disorders recover quicker and with less ‘add on’ complications. A suggestion perhaps, (not easy, I know) would be to try not to stress about your return to work ( I was doing this but realised it was counterproductive to recovery) let the steroids and antibiotics do their job. Do you use inhalers too?

Try not to eat anything that will cause mucous build up. Drink plenty of cooled boiled water - thins the mucous. I am avoiding anything milky/dairy based. Clear soups are good for keeping your airways and sinuses less clogged. 👍🏼🤞🏼

When I went to the GP to obtain a fit for work note ( of which I am still clearly unfit) she said after having a virus/infection along with the never ending list of ailments you are then sometimes left with chronic fatigue- and recovery can take even longer - which is a double whammy, especially when hoping to return to work sooner, rather than later.😔

I don’t feel like I’ve offered much advice, but I can truly appreciate how you are feeling right now and wanted you to know you are not alone.

I do hope you manage to hang on to some of your spoons until fully recovered. 🤞🏼

Sending get well hugs your way.

((X))

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Thank you for your reply, I appreciate the quick response. I have gone back to work already. I have a sit down job with down time but just being here and having to get ready for the day and be awake seems like too much. I have just been indulging in my diet as I find it difficult to take the effort to make something better for me difficult and I have teenage daughters that don't want to eat healthy all the time. and soup is "boring, mum" but I drink herbal tea and water but I still have to sit in the chair to sleep or I wake up choking. Sometimes choking during the day as well. I hope you feel better as well, This season seems to put all AI's at risk I think.

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Well done for taking the plunge!

And I can well imagine how tricky it is with two teenage daughters and trying keeping everyone satisfied in the food department.

Regarding your choking, I forgot to add, I was prescribed Beconase nasal steroid spray for post nasal drip which was causing the mucous to drain into my throat. Wondered if that might help?

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Hi sorry you are having a tough time when I get a cold not going to say Man flu 😷🤧 my joints normally get worse and when I was on methatrexate it was particularly bad and took a long time to get over don’t forget most of us take 1or more immunosuppressive drugs to help the lupus/MCTD simptoms hope you feal better soon

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I am very thankful for all the well wishes on here, the support is great!, I do not currently take immunosuppressive drugs yet. I wish I could help the symptoms but as I seem to be able to mostly just endure and power through till I collapse my docs aren't quite at the really need to take care of me stage yet, as they have patients who are more urgent. I just really need to be able to have some sort of back up to draw from for when I get sick, Cause that is usually when things go downhill. and don't get better again till months later. I once lost my voice for 4 months (and lost a job because of it) and they just started looking for other stuff.

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I also have big problems with catarrh every time I get even the sniff of a cold. Drinking seems to help, but I also resort to catarrh pastilles (Boots) when it is bad.

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catarrh?

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Sorry that you are having bad days... I hope they will pass soon :)

Herbal tea is good! I add ginger, peppermint leaves, cinammon, lemon... lots of hot fluids to rid of mucus.

Rest all you need, take good care of yourself even if it means to say "no" once in a while to teenagers.

A year ago I had influenza, it was hard on top of MTX effects ... after that my rheumy prescribed vitamin D3, she says it regulates the immune system... I haven't had other flu/cold/sniffles.

Maybe you can ask your Dr if vit D3 is good for you?

Wishing you well! :)

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Thank you for all of the well wishes, and yes rest is important and lots of hot beverages, I already take vit D3 5000mg/day. I also am not on any immunosuppressive drugs yet, as they are still in the process of diagnosing, they know it is auto immune and they think it is lupus but don't want to biopsy my kidneys unless they have to.

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My sympathies! My father in law had a cold and gave it to the family over the holidays. Of course everyone else gets better but I get Strep as a complication. The way I understand it is like everyone else. We’re at higher risk with Lupus and even higher when on immune suppressants. I know it sucks to have these things drag on and on especially when you have to work. But, I think you just have to give in to the fact that our bodies heal slower. It’s taken me years, but after this last infection I’ve had to just make peace with it. And figure out ways to have flexibility in my job (work part days, break up the day, work more days with fewer hours per day .... stuff like that).

Take care and feel better soon!

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I may have to look into work at home jobs as it really takes me out when I have any kind of additional illness. I also thought it might be time to look into disability as I have been struggling with symptoms of this illness for over 10 years. I think maybe contract work so I can get paid for what I do rather than when I do it that way I could work when I feel good and lay down and nap when I don't.

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