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Autoimmune disease - feel ill ALL the time

(30 Posts)
Mummytron Sun 07-Feb-16 14:40:35

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?

Cocolepew Sun 07-Feb-16 14:44:25

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.

redannie118 Sun 07-Feb-16 14:47:07

Hello op I feel for you I really do. I have a auto immune disease too ( systemic sclerosis) and im always tired and in pain as well. You sound like you have a lot on your plate with work and the kids , do you have time to rest? That makes a massive difference to me and pretty much the only way I manage. What meds are you on and how long have you been on them?

Mummytron Sun 07-Feb-16 14:55:29

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?

redannie118 Sun 07-Feb-16 15:03:58

Your cold could be making it a lot worse as it hits your body harder than a lot of people. You may well have something else wrong as people with a autoimmune generally have more than one condition at a time( I have several and my rhuemy says thats pretty common)have a chat next time yr there

Cocolepew Sun 07-Feb-16 15:47:39

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.

festivehopeandfrolicks Sun 07-Feb-16 19:21:32

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

festivehopeandfrolicks Sun 07-Feb-16 19:22:53

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.

DragonsTail Sun 07-Feb-16 20:23:50

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

Mummytron Mon 08-Feb-16 22:30:38

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

Openmindedmonkey Tue 09-Feb-16 20:41:28

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 flowers

Mummytron Tue 09-Feb-16 21:25:15

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

Openmindedmonkey Wed 10-Feb-16 10:43:35

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 grin

TommyandGina Wed 10-Feb-16 11:14:46

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 brewalthough today the kettle feels too heavy confused

Barbielovesken Fri 12-Feb-16 11:57:13

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?

Mummytron Sun 19-Jun-16 22:05:32

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

Fuckoffdailymailnobs Mon 20-Jun-16 22:39:58

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??

Mummytron Tue 21-Jun-16 19:14:18

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

queenoftheschoolrun Tue 21-Jun-16 19:27:32

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.

Coffeethrowtrampbitch Tue 21-Jun-16 19:50:43

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 blush.

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

Fuckoffdailymailnobs Tue 21-Jun-16 20:20:53

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

Mummytron Tue 21-Jun-16 21:19:52

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

Mummytron Tue 21-Jun-16 21:20:48

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

Fuckoffdailymailnobs Tue 21-Jun-16 21:40:09

Ha ha no worries serves me right for that user name wink 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 biologicswink)

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.

scaryteacher Tue 21-Jun-16 22:15:40

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.

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