I have various autoimmune conditions but it's the stage two Sjogrens that is of concern. I stopped sweating under my arms some time ago but I were profusely overheating. I brought a few fans to place around my home and changed all bedding to cotton, wool and bamboo.
I cant tolerate the heat so have film on the windows to keep glare from the sun out ( I suffer with sun blindness ) and have wooden shutters at my windows which I close on warm days. This is not the best way to live when others are out enjoying the sun but I have no option.
For a while now I awake soaking wet through out the night yet I have a fan on all night ! This is affecting my sleep and i'm also finding the wetness is making me sore to the point I am now having to put pads under crevices such as under breasts ect. I have also developed excruciating joint and bone pain which at first I put down to my B12 deficiency but now wonder if the Sjogrens is is causing it.
Has anybody else experienced this ?
Thanks in advance. Xx
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Jillymo
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I would think you need to get your lymph nodes looked at initially by CT. That’s how I got the all clear when I had various symptoms - not as dramatic as yours. But due to sjogrens increasing risks of lymphoma and one of the symptoms being excessive night sweats - that’s the first thing I’d want to get checked out and hopefully excluded, asap. Contact your rheumatologist or, failing that, GP for urgent referral. I guess another problem could be autonomic dysfunction but I’d only ask about this once non Hodgkin’s lymphoma has been excluded.
I am seeing the Rheumy at 11 this morn and will ask him for a CT scan.
I had been wondering about the possibility of lymphoma, I have had Sjogrens for a number of years and must be at stage two or three of the wretched illness. I find it a curse to have to live with all it's awful symptoms.
Do urgent requests for scans still exist ? I have been waiting months for scans on a suspected epigastric hernia ! The NHS sure is in a mess and no longer runs as it should.
Rarely have sweating...but has happened. Other body aches could be Rheumatoid Fibromyalgia.....makes you feel like utter crap...I would recommend bath or electric blanket but you already have sweating issues. Avoid sugars....our body does not absorb things like kit used to...I will have something for a boost....but thats all.
I also cant handle bright light and prefer no lights on inside....eyes get really photosensitive with Sjogrens (Migraines etc).
As I mentioned earlier no sweating from under my arms but neck and chest area during the night ! An electric blanket would be my worst nightmare I have fans going all night long.
I am currently being screened for gut issues and having an MRI with contrast in a couple of weeks. I have an issue with my B12 and having to inject every day.
I have had Sjogrens for many years, my new rheumy is not an expert on the condition. I am no longer able to travel to London for specialised care anymore so I shall be seeking guidance else where.
The photosentivity was awful during the summer months to the point where I could have done with a white stick. I have a special film on my windows to keep the glare out and wooden shutters which I close on sunny days.
My skin is not good either so life is not easy what with trying to treat all these wretched conditions. I no longer get the migrains since being on bood thinning meds but before that Isuffered miserably. ( I have antiphospholipid syndrome) Oh joy.
My blood is already too thin (skin bleeds easy)....with Sjogrens....battling to get any blood out of me re lack of oxygen in me.....29 years (post surgery (C-section) and iron poisoning in hospital for 3 months re babies placenta at bottom of uterus) doctors ignored the obvious sudden physical limitations etc ...even after DNA blood tests...naturopath...lucy rose...it wasn't until recently I got a call back to donate blood re Mad Cows Disease...no longer a threat...OMG your blood Oxygen levels are dangerously low we are sending a report after testing to your GP???? Come back when you are better????
Yes. Sjogrens is a minimising nightmare...everyone knows about Lupus...no one knows or wants to know about Sjogrens. (Hyperchondriac...nutter...a few of the terms I've been exposed to...(.from ill informed doctors & nurses....until your body is spirally out of control on meds and you are hospitalised...then you are their wonder girl???) I have the work sheet up on my fridge for all of my B&B/Airbnb guests to be informed about and to limit their expectations of talking to me re respiratory issues....sudden extra dryness...fatigue moments....rise early...but def retire early re oxygen levels being depleted more so.
No such thing as "normal" with Sjogrens and the other immune suppressed issues that come to visit or mimic within your body at any given moment.
Australian doctors are too lazy or will only address one issue at a time (Medicare enhanced).....Scans etc have only just been done again after 23 years on my organs re changing surgeries....but only for the purpose to lock me into drug treatments....and consider me incompetent to take over my medical affairs.....took my son to my last appointment...cancelled other appointments made on my behalf by doctor I "hoped was dedicated to helping me....ended up just helping himself...to the detriment of my peace of mind & safety).
Other organ like pancreas etc (extra Gut back/spine pain) now effected since Covid immunisations....very crippling and excruciatingly painful....doctors will go "blank" when you mention side effects from Covid immunisations...though 2 specialists...one a Heart specialist made clear her opinion and acknowledgement of abundant obvious issues
Going to give 2 of my boys enduring power of attorney....to prevent doctors doing this...bloody nightmare in Aussie...lots of Guests (adults & kids) falling into this trap....especially if they have you connected to varying specialists working on one agenda...to make you do what they want you to do....even if its to the detriment of your own well being????
I refuse drugs that have caused foreseeable harm and obvious irreparable damage.
I self manage/exercise/healthy food/drinks etc.....endeavour to avoid stressful situations (latest doctors scenarios was my worst nightmare....back in the "drivers seat again").
Even when the Gut doctor informed them it was in my best interests that I continue to self manage as I had obviously been doing so well despite all of the overlapping immune issues.???? Avoid Drugs wherever and whenever possible re side effects acerbating current and future conditions????
My kids (5) are all kept up to date and are horrified at doctors attempts to minimise instead of maximising potential support. (Post Covid medical world is a very different world).
Take care.
These sites I visit are very helpful at confidence building after years of so much negativity as a result of overwhelming issues that most people have no wish to comprehend or take the take the time to understand....and its not for lack of intelligence!!!
Dont even mention Sjogrens, I have just had a massive flare of the wretched illness. I had a heck of a job getting a diagnosis so I took myself off to the London Lupus Centre. It was the first time that I was listened to and felt understood.
Medics seem to think sjogrens is just a dry mouth and eyes ! But as I have found out to my cost it is much more damaging than just to the eyes and mouth. I am now waiting further scans on my bowel and stomach.
I had a neurologist try and label me with FND out of pure ignorance of my autoimmune conditions. It makes me so damned cross to have to keep battling with such consultants.
The Antiphospholipid syndrome added to my complications and I ended up suffering heart failure before action was taken ! It has left me with little faith in the NHS system. I even had one consultant put my life at risk by trying to stop my blood thinning medication ! He thought because a blood test came back negative my blood condition had gone ! Do they not realise our antibodies increase and decrease - they come and go.
There is no excuse for ignorance these days or to put our lives at risk.
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