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I've not posted much lately. Just trying to get used to some new meds and haven't really had the energy to bother (sorry!).

I've been having a few better days this week though, with significantly less pain. I'm having an MRI on Wednesday of my left foot, knee and hip, but even they have been a bit easier too.

Then wham! Today has been tricksy! My hand and wrists are painful and swollen. My pip joints are really tender to touch, and I can barely hold a cup!

Fatigue levels have rapidly escalated and I'm light headed. My speech is slurred (Neuro stuff that I've had for a long time on and off) and I think I'm starting a bout of optic neuritis again (if the pain in my eye is still there in the morning I'll know that I'm heading for a relapse.

I can deal with it, but never cease to be amazed at how rapidly AI stuff can exacerbate. The irony is that yesterday when I felt fairly ok, I had someone say I looked exhausted and today anther has greeted me by saying I look well!!!

Now I'm not one to malinger but it's frustrating that others can't tell when you feel lousy.

Thinking of you all. This weird weather is bound to be hindering some of you.


8 Replies

Glad to have your news, RT 🙋... especially that you've had a few "good" days

lupus friends have told me it's the 'Lupus Glow" that makes people say how well we look when we're actually in a dreadful flare (of course they don't realise our glow is due to active inflammatory process). Happens to me 🤷‍♀️

Am glad you're getting this MRI over & done with...hope you'll let us know what is found

Wishing you every best wish

🍀😘🍀😘 coco


I'm sorry you have been hit by the AI steamroller, especially after a few good days. Hugs x


Hi rubytuesday

Good luck for your MRI scan. Sorry your feeling lousy but hang onto the fact that you had some better days. This illness can fluctuate so much which does make it hard to live with!. Do let us know how your results are. X


Poor you with all the pain RT. I'm in bed too feeling 💩. I don't have the pain in joints though so very thankful for this as two years of excruciating RA type pain earlier on have taught me to be thankful that this has gone away now at least. For me I think it's probably the rise in dose of Mycophenolate but not 100% sure of this as terrible headache that refuses to be vanquished along with facial pain, swollen eyes and dry mouth plus nausea and fatigue. Oh well at least the weather is very turbulent today so no sounds of neighbour's out enjoying the sun. Hubby says I look dreadful today so at least my looks match my symptoms.

A woman I once met while in hospital a few years ago (now sadly passed away) told me that us autoimmuners often look well even when we feel dire. She had Scleroderma and was looking very pretty and well having just come out of ITU with double pneumonia. Only her terrible cough gave the game away. She said (she had been a theatre nurse all her working life) that it's because our immune systems are so overactive that we often flush in response to all perceived invaders. I'm palid then flushed alternately today with awful sweats but no fever - so her explanation kind of makes sense to me now.

Hoping you feel much better soon. X


You too Twitchy. I'm sorry you're 💩 today. I hope you perk up soon.

It's so annoying isn't it. Sick if you don't take meds and different sick of you do. Hobson's choice..... which would you prefer? Pain, pain, fatigue, swollen joints and pain? Or maybe pain, nausea, depression, sore skin and pain? ....etc! Got to laugh😭😭😭


It's all pants isn't it?! My husband has just asked me why my forehead/ eyebrow has developed these pink craters over it recently. I hadn't thought much about this as sure it's just some kind of seborrheic dermatitis/ Eczema - least of my worries. He then asked in panicky tone: "so why did you agree to take a drug that makes you even more at risk of skin cancer then?". I'm afraid I just retorted "risky picky - who cares it's all going to be sh*te whichever route I take!" Xx


Hi Twitchytoes, I had been missing your posts.

I see you r here and I'm so sorry to know you are suffering.

I replied to another member and was saying that I crashed too! I went to be with my daughter family Fri, sat, Sunday. Had to leave sat morning. Bed sat afternoon till this morning. O my. I slept on and off for 36hrs!

I am up but still very fatigued. Eyes burning red and sore. Joints aching.... in fact my symptoms are very much like you are experiencing. I am newer to this disease and wonder is it the weather? I don't cope in the summer at all. Noise, bright sunshine, all the happy things of summer, wear me out!

In an effort to overcome this episode, I got up today. I have been chasing blood results. What a nightmare! Run around on the phone, this, that, other departments.... well, it all got too much... I contacted BSSA and sobbed! A friend from the group meetings then spoke with me, I cried again. But, it was so so good talking and being in the company of people who understand a flare up/acute fatigue.

Now, I am a person that never perspires. I am literally sweating! I have no idea why. I have made an appointment (as private patient), to visit a consultant with experience in thyroid. Not endocrinologist. But lots of people recommend him. I can't help but think perspiration without fever is hormone related. Anyway, I see what he says. Apparently, my thyroid is shrivelled into a fibrous mass, so at least he can check me. GP never referred me to endocrinologist in 27 yrs. I can't see the point of going to GP as no luck with sjogrens help there, thus far.

I've also booked dentist tomorrow. Have blood test Wednesday and 6 month rheumatologist next week. I just hope I can find the get up and go, that got up and went, this week!

I do hope you are improving. I am truly sorry you too, had to resort to bed rest.

Take care. X


Periods of not perspiring and perspiring heavily are very common with Sjögren's. I have exactly the same thing. I think it's to do with autonomic dysfunction in my case.

It definitely isn't hormonal with me, nor thyroid related. Although an endocrinologist told me that anyone who has Hypothyroidism and has been taking Levothyroxine for a long time will not have a thyroid anymore - so mine will be shrivelled up too - probably many many people's will be given how common Hypothyroidism is.

Your symptoms sound very Sjögren's-like to me but hope you get something from the private consultant and dentist and your rheumatologist soon. X


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