Autoimmune disease - feel ill ALL the time

[Mummytron]

Need some tlc...
I have an autoimmune disease (imflammatory arthritis) and I just seem to be ill all the time.
It's really getting me down. I'm not depressed but worry that there is something more serious wrong because I never feel well.
I've had a cold for two weeks which has really knocked me off my feet and while I'm still doing my job as a TA and looking after my two children I always feel like I'm doing this on zero energy.
My disease is managed well I think. It is it normal to be so 'useless' all the time?
Xx

I have an auto immune disease too. The only thing I can suggest to to try to rest as much as possible (not always possible know).
Have you mentioned it to your rheumatologist? There might be an underlying problem or a tweak of your medication needed.

Hi both
I've only just returned to work at my children's school in the mornings. I love it but I am so tired. My kids are no trouble it's just the general stuff and my hubby is fab. So I count myself lucky.
I'm seeing my rheumy in a couple of months so will mention it but my regular blood tests are always normal. I also dont have my disease really bad but I feel so tired all the time. It's probably normal for my disease but I'm a worrier so I always worry that it's someone more. I'm on anti imflammatories for ankylosing spondylitis but I'm convinced I have psoriatic arthritis too.
Maybe having my cold is making it worse?
X

I agree having the cold will affect you more than others.
Do you take any supplements, I have noticed a difference since starting Magnesium Citrate.
I never feel well just some days are worse than others.

I have have psoriatic arthritis and my baseline us everyone else's feeling shit. Just general yuck feeling all the time. Disease is not well controlled at the moment though. I currently have laryngitis and some bloody virus and I feel awful. It's shit you have my sympathy

I wouldn't recommend random supplements without checking with doctor if you are on dmards (methotrexate) or anti tnf. Possible interactions just aren't well characterised enough to risk it.

I don't know much about your condition but I've been told that autoimmune diseases can sometimes pop up together (very I medical term). I would talk it through with your consultant or GP perhaps? I don't know what sort of normal tests they do but it could be something as simple as vit d.

Managing pain is very tiring though, as are two children, plus a cold. Maybe try to REALLY pace yourself for a while.

Thanks all.
I'm sure my issues are a mix of Ankylosing spondylitis with perimenopause thrown in. But with a cold too...knackering!
😘

How are you feeling today Mummytron?
I'm in a similar situation to you with AI conditions & cold & kids so totally empathise.
(Do you ever read AI as 'artificial insemination' or is it just me??)
Anyhoo, I hope you've had a better day

Feeling a bit more human today thanks.
Not human enough though!
Know what you mean about AI!! 😂
How are you getting on? Xx

Morning Mummytron,
Part-human is good (the rest of you is presumably super-human electronic whizz!) Hope you are even stronger today.
I'm having a bad day but it's entirely my own fault - forgot a critical tablet yesterday, feeling the effects now. Guess it confirms why they are prescribed

Oh op I feel for you. I have psoriatic arthritis and take methotrexate 25mg and have started anti tnf injections. Some days I feel so tired I can hardly do the essentials, other days are fantastic and I feel like I could take on the world (usually pay for it the next day though). I'm a carer for my disabled son so I don't have much choice in when to take it easy though and sometimes literally find myself crying because I'm so weary and don't know what to do.

I just take each day as it comes with plenty of although today the kettle feels too heavy

Mummytron how are you feeling now?

Dont want to hijack and make this completely about ME but did want to offer loads of sympathy and understanding.
I too have an autoimmune disease (IBD - between chrons and UC or both - indeterminable diagnoses).

With 3 small children and two jobs, I am literally hanging on by a thread these days. I totally get where you're coming from re tiredness. Its such a struggle to do the very basic, normal things. I find myself applauding myself when the school runs done and I'm driving to work - cos everyones dressed and fed and where theyre supposed to be :-/

In a flare since last October. No meds working.
On the cold - I have one for the last 3 weeks too - I reckon its the immune suppressants which arent allowing me to shake it - could this be affecting you at all too?

Hi all
Just wondering how you're all doing?
I'm still knackered! Xx

I've name changed since my post before. Even worse to be honest.Numerous rheumatology visits, steroid injections, if sick from work waiting for new biologic medicine to be approved (stelara). Not even thinking about how long it might to to work or God forbid it doesn't. How are you??

Worse too!
What is your condition? I'm totally fed up with the new symptoms that pop up. Anxiety is really bad too xx

My consultant advised me to take Vitamin D3 as this is often low in patients with autoimmune diseases. It has made a huge difference to my energy levels and I have far fewer colds and illnesses too.

That's really interesting queen, thank you. I'll have to check if I can take that with the other meds I'm on.

I've got an auto-immune condition too, neurosarcoidosis for me. It has responded well to steroids but after nearly 4 years on high doses it has become a priority to reduce them to avoid side effects.
I've recently started Infliximab which seems to be working well, but I've just dropped from 15 to 10mg of steroids and now get out of breath climbing the 14 stairs in my house .

I'm glad I've found my people and I'm so impressed at how well some of you do. No wonder you are tired! But you are also an inspiration.

Psoriatic arthritis. Thanks for the reminder queen I keep forgetting to ask them to test my vitamin d.

fuckoff
I have ankylosing spondylitis and I'm interested in psoriatic arthritis as I have some symptoms of it but not diagnosed...yet!
Been to the doc today with sores on the sole of my foot. Little red spots which are itchy, painful and bloody uncomfortable. GP says pomphilyx (type of eczema) but I have spots in my scalp too. Went to dermatology to see if it's psoriasis but had gone down when I saw them. Seems to come and go x

Can I just clarify I'm not telling people to fuck off! Just shortened posters name! 😁

Ha ha no worries serves me right for that user name I have aspects of anklosing spond (bilateral sacroillitis) but had a little psoriasis and nail changes before diagnosis and they went with psa (also easier to qualify for biologics)

I would all for a dermatology consult or just raise with rheumy. I've never seen a derm, the skin aspect was never that bad and totally disappeared when I started medicate l methotrexate.

I've has an autoimmune disease for 21 years (ITP) and I can relate to the tiredness and feeling knocked for six when you get a cold. I lost the first three months of this year as I had shingles (and the anti virals were foul and made me feel horrid), closely followed by a different virus and then a bad Vit D deficiency.

I spent my 50th in bed feeling so foul that I only emerged to have a bath and then went straight back to bed again.

Can I ask you all, do you get hot flushes? Can't work out if it's an auto thing or hormones? X