Excessive Sweating/Hyperhidrosis

[FoggyMoggy]

Hi all. I'm from the UK. Can excessive sweating be a symptom of SS? I have heard it can be a part of the Autonomic Nervous System becoming dysfunctional. My thyroids and other hormones seem fine. I'm not diagnosed with SS but had ANA positive a few weeks ago and waiting to see GP but fear he will dismiss it. The hyperhidrosis is the most debilitating symptom. I am worse in the cold, I have to change all my clothes around 7-8 times a day. Once it was 27 times, that was a record. It is worse when I have to go somewhere, I have to pack loads of clothes and nowhere to change often. People don't understand it. I also have FM and ME.

I take medication to dry up the sweats but they give me bad side effects if I take too much e.g. migraines and raging thirst. But if I take a smaller amount then they aren't effective. I am getting desperate and the HH is ruining my life (more than fatigue and pain).

I also have rashes appearing on my face which is a new thing.

I wondered - apart from lip biopsy - what blood tests are helpful in pointing towards SS?

Many thanks

[SusieW2]

Dr won't dismiss those symptoms. Mayo Clinic website says hidrosis probably has an underlying cause which needs treatment. I had night sweats & fatigue among others and have SS. Thyroid was a bit low but Drs wouldn't give me Rx until I found a Naturopathic MD. His belief is that no one should be low & gave me 2 Rx. I'm much better now. Have referred friends who have similar results. But stay with Drs. until you figure it out. Good luck!

[FoggyMoggy in reply to SusieW2]

Thanks Susie. I'm pretty sure it's not thyroids as even my T3 was higher this time. Yes I have secondary Hyperhidrosis which has an underlying cause. At the moment all I can put it down to is ME and FM.

[SusieW2]

I'm just hoping that you continue to pursue an underlying cause for the sweating. SS was not listed as a probable. There is no real treatment for Sjogren's so it doesn't really matter if you have it or not. There are just treatments for the symptoms. I've found that diet makes a huge impact on how I feel and in suppressing my eczema. Managing inflammation also reduces my symptoms. Hope you can get some relief and improved quality of life. That's the bottom line.

[FoggyMoggy in reply to SusieW2]

Thanks Suzie. I am pursuing Lupus too because of rashes n my face but if I knew the cause then maybe something for the inflammation may have a positive effect. I can't say I have noticed diet helping with me but then I have never tried gluten free. Having ME makes any planning/organising an uphill struggle!

[EyeandDry]

I found vitamin b12 injections totally stopped my drenching night sweats. I was deficient. Have you had it checked?

[FoggyMoggy in reply to EyeandDry]

Hi EyeandDry - not recently. But when I had it checked I don't think it was exceptionally low. I'm also taking Vit B12 spray though there could be a problem with absorption maybe

[EyeandDry in reply to FoggyMoggy]

Yes, I have absorption issues which is why I SI once / month. My b12 level was in the lower third of the range but according to my GP that was acceptable. I decided to self inject anyway as b12 is not toxic and symptoms including numb and tingly feet, improved dramatically.

[Dynamic63 in reply to EyeandDry]

I’ve just started on a 3 week course of Vit B injections & my night sweats have dropped dramatically. I believe the profuse sweating that I have been experiencing over the last 3 yrs definitely is part of Sjogren’s. Least we not forget that SS mimics menopause, diabetes, hyperthyroidism etc etc..

[FoggyMoggy in reply to Dynamic63]

That's interesting Dynamic63 and thanks for feeding back. Some have said that sweating isn't part of SS but I've heard that it can be. I'm hoping to be referred to a dermatologist so will see what happens. Was your Vit B12 low? Mine has been within range so no action taken

[Megansheart]

Hello FoggyMoggy,

You say that your recent ANA was positive, do you know what the titre was? Low level raised titres such as 1:40, 1:80 can be normal but once you get titres ike 1:640 and above then it is fairly conclusive that something autoimmune is going on.

ENA’s (Extracted Nuclear Antigens) such as Anti Ro’s and Anti La’s usually indicate Sjögren’s Syndrome. Other of the ENA’s can indicate more specifically Lupus, Scleroderma etc etc. Negative ANA’s and negative ENA’s do no necessarily mean that you do not have an AutoImmune condition.

For some of us with SjS the autonomic nervous system gets hit big time. I have heard that hyperhidrosis can occur in SjS although it’s not common.

Find some one in the UK who is an expert in hyperhidrosis and go see them. Hoping that you get the best possible care for your symptoms as they sound very distressing.

[FoggyMoggy in reply to Megansheart]

Thanks for explaining in such detail Megansheart . They didn't say what the titre was - just that the ANA was positive and to discuss with GP non-urgently. ENA was negative and ANA Pattern was normal and dsDNA was negative. So are the other results that I've got apart from ANA positive suggesting that SS and Rheumatoid Arthritis are less likely? I understand that you can have negative results which doesn't necessarily rule out autoimmune disease. In facet I went for testing because of rashes on my face and wanted to exclude Lupus as I also have Fibro and ME.

Alas there are no hyperhidrosis specialists in the UK, the best we have is Hyperhidrosis UK. The people who you usually get referred to are dermatologists or - if they think there's another cause - someone like an endocrinologist. An endocrinologist suggested tests to my GP and they ran those. So it's very difficult to get to the cause.

[Megansheart]

I’m just wondering whether you may gain significant relief by having some acupuncture by an experienced practitioner. It’s amazing what they can do.

[FoggyMoggy in reply to Megansheart]

Yes I've often wondered myself Megansheart . There are so many things to try but I am willing to try anything. Thanks for reminding me

[Dynamic63 in reply to Megansheart]

I’m starting Alternative Chinese medicine / acupuncture this week as I’ll give anything a go rather than go on hideous drugs with awful side effects . I’ll keep u posted .

[FoggyMoggy in reply to Dynamic63]

Keep us posted Dynamic63 . I'd be interested to hear if it helps hyperhidrosis

[Megansheart]

I’m glad that suggestion was helpful. I had forgotten myself until a recent Korean movie depicting the 16th Century, reminded me of its effectiveness. I did have acupuncture many years ago for a problem which had lasted for months and almost immediately it resolved and has never come back.

Just a comment about negative ENA results.

It took eight years from the start of my symptoms (when I became very ill) before I had positive ENA’s. These tests were all done a few times in those intervening eight years. So, I often ask the question. Does that mean I didn’t have SjS from the beginning and only developed it once my results were positive? Absolutely NOT.

Therefore how can any doctor say you do not have it because you have negative results? If they say that, they are WRONG. The medical literature on SjS written by experienced doctors and researchers confirms this, yet I think the mainstream medical training of doctors does not.

Initially Sjögren’s syndrome should be considered based on symptoms not eliminated based on negative blood results. I think Ophthalmologists can be vital in this process. Often Shirmer’s tests etc can reveal eyes that are drier than even the patient feels they are. This becomes quantitative proof of dryness of the eyes which should be added to the collective of symptoms for consideration.

I say again, at the very least, SjS should be held as a diagnosis under consideration and possibly even treated based on the array of symptoms (by a specialist), not eliminated as a possibility because of negative blood tests.

[FoggyMoggy in reply to Megansheart]

Many thanks again Megansheart . I forget whether you're in the UK or not. I am due to have my eyes checked in a couple of weeks so if they offer Shirmer's Test I can ask for it. All good wishes

[Hidden in reply to FoggyMoggy]

Hi FoggyMoggy. You’ve had some great replies and I particularly agree with Megansheart. Around 30% are seronegative for Sjögren’s and for RA. Now call me odd but I think 30% is quite a significant amount don’t you?! Certainly enough that doctors should know that normal blood tests, particularly with a positive ANA, doesn’t rule these autoimmune diseases out!

Any UK optician should be able to test your eyes for dry eye disease. There are 3 types and it’s completely true to say that some feel their eyes are terribly dry when they are only a little dry. Others are in the opposite boat. They don’t usually test with Schirmers - that’s only rheumatologists who haven’t the equipment to do more common, sophisticated and less invasive testing.

Even if your eyes aren’t notably dry you can still have Lupus or Sjögren’s present neurologically long before the sicca shows. This neuro type of SS is not exclusive to, but is most common in seronegatives.

I used to sweat copiously from adolescence onwards and I had severe eczema. Then with menopause my sweats disappeared and I never had flushing.

But last summer I was overwhelmed by both heavy sweats and flushing and it turns out this is Erythromelagia - which my new rheumatologist has just confirmed. I also have Raynaud’s in the winter and small fibre neuropathy. If you get flushing with your sweats then this link might be of interest. X

sruk.co.uk/scleroderma/eryt...

[FoggyMoggy in reply to Hidden]

Hi Hidden . Yes I agree - 30% is a very substantial minority! I shall see how I get on next week with the doctor!

I have an appointment with the optician the week after next. Funnily enough, two or three years ago they mentioned my eyes were dry (I'd not even noticed) and he just prescribed drops but the last couple of times the optician didn't mention dry eyes. I wonder if that's something that fluctuates - I must admit that I've had a succession of different opticians in the practice and am due to see a different one again next time, I believe!

Many thanks for the link which I will read. I have had the excessive sweating for a long time but the flushing has only come recently so seems to be independent of the sweats, but the itching seems to be possibly related to the rashes. The rash on my face isn't itchy but I have itchy areas on my neck and upper chest. Also, this could be due to the medications that I need to take to 'dry' the skin because of the hyperhidrosis! XX

[Dynamic63 in reply to Megansheart]

By the way I’m in Melbourne Australia 🇦🇺- I notice alot of you are from the UK? My Schirmer’s test was positive with only 5 and 9.👎🏾. I go from one extreme to another but mostly experience excessive constant dripping which mimics hay fever. 😞.

After having the lemon 🍋 wash procedure, ughhhhh - my rheumatologist says it’s time for the lower inner lip biopsy to 100% confirm before I can start medication. I’m told I could lose nerve feeling in this area - seriously, Is this test really necessary as atm

I feel like a guinee pig . And to boot I have to wait months to get appointments and they cost a fortune . I don’t have private health only extras for teeth / eyes, so wonder what I would do if I didn’t have any savings? Used all my super to be mortgage free and haven’t worked for 4 yrs. Trained as a phlebotomist last year to start a new career then my right hand starting swelling up bad - like I hand elephantiasis ( the rheumatoid creeping in 😞)up at Xmas and I can’t physically bend my right middle finger so can’t work in what I’m trained to do! Apparently it’s tendinitis and I have constant peripheral pins/ needles in my fingertips. Rhemotologist says I have to go to the gym and start doing upper body weights to strengthen my shoulders and this will stop the pins/ needles ?? Kind of weird when I didn’t have this before my hand swelled up.

There’s I’m going to be prescribed are Plaquenil and another drug beginning with L ( sounds like an antibiotic?) .

Biggest prob is massive dental decay and having to have molars removed, new crowns etc etc . I’m

Single and just wonder how on earth I’m going to find all of this? Thinking of going to Thailand to have my dental work there - if I can get 10 yrs out of it and spend a quarter of the price then it’s a winner with me .

[Megansheart in reply to Dynamic63]

I haven’t had the lip biopsy but some on this board have - hopefully they will respond with their experiences.

I just want to mention something about having dental work done in Thailand. I have heard reports that it is all very high tech and advanced however I just raise the question of sterility of equipment. That is an unknown behind the scenes.

I only raise this because my brother and his wife used to go there all the time for their dental work. Then my brother developed a heart valve problem and had to have it replaced. There is no family history of heart valvular disease.

Cause and effect? I have no idea but only wanted to mention it. I have no proof one way or the other and it probably has nothing to do with the equipment.

I’m also in Melbourne....well actually on the Mornington Peninsula now, after a lifetime in Melbourne. 🇦🇺🇦🇺🇦🇺.

[FoggyMoggy in reply to Dynamic63]

A lot of people from the UK probably because this is the only SS group for people worldwide. No other forums like this in the UK except on FB

[St-Cherry]

Hi FoggyMoggy. I have 5 autoimmune diseases or syndromes. Sjogrens, Ankylosing Spondylitis, Pernicious Anaemia, Fibromyalgia and Dercum's. Not sure which is the primary disease yet. I see a rheumatologist/internist every 6 months and my meds are certainly making my life easier except for hyperhidrosis which determines where I can go outside my home, and for how long. Sweat literally pours down my head, face and neck most of the time, unless I'm in an airconditioned place or at home with my fan. I'm 70 years old so it probably isn't menopause.

[FoggyMoggy in reply to St-Cherry]

Hi St-Cherry , thanks for your reply. I'm very sorry to hear though that you have so many conditions I am being investigated for Lupus at the moment. The optometrist I saw today didn't think I had Sjogrens as she said I would know if I had dry eyes and mouth. I have a long wait to see the rheumy, about 8 months I've been told! The sweating is extremely debilitating isn't it? I am the same. It completely restricts me. The only difference is that I am worse in cold weather which is even more bizarre so for me I have hairdryers, heating and hot water bottles! I've been told that it's dysautonomia i.e. the Autonomic Nervous System malfunctioning. Although mine seemed to be triggered by the menopause I don't think it's that either as HRT patches didn't help and I get cold sweats but had very few hot flushes!

[Dynamic63 in reply to St-Cherry]

Omg 😮- this is shocking and my heart goes out to you . And I’m

Whinging about my teeth? I too have the hyperhydrosis and it’s vile . I’m aparrently at the end of menopause but actually only went off the contraceptive pill 3 yrs ago as I waa prepared to go into full blown menopause re the stress of my marital separation/divorce. Now I wonder if perhaps I should have stayed on the pill as I didn’t have any of these horrid probs?

I have no idea what the other diseases U have are but this must be affecting ur day to day living and at 70 yrs u should be enjoying ur retirement 👎🏾

[St-Cherry]

I never had hot flushes except for a few years of menopause years ago. I'm constantly hot to the point of panting like a dog sometimes, which doesn't actually help. My big floor fan is the only thing that helps so it's on day and night. As the years pass, I'm getting hotter and hotter. I once took my temperature simply out of curiosity and it was 39.4 deg C, but I wasn't sick. Living in such a hot part of the world makes it so much worse.

[FoggyMoggy in reply to St-Cherry]

I can imagine. Don't get me wrong, I can't tolerate too hot temperatures, but I am always cold and damp. Mid to high 70s is my ideal and it isn't that very often. Indoors I need the heating on a lot and also to dry my clothes constantly because of the sweats. Going from a warm room to a cooler one is also a trigger for sweating. The hairdryer, a warm fan heater and a hot water bottle are may friends - sort of opposite to yours. My temperature is always on the low side

[Dynamic63 in reply to FoggyMoggy]

I’m always feeling Hot but my hands are always cold and so are my feet. I’ve always loved the Hot weather and would go to Thailand/Bali every yr up until 2017. Prob wouldn’t be able to tolerate it now but perhaps being in a swimming pool all the time would be great ?

IT’s Autumn here now in Australia & for the past few notes I’ve had my electric blanket on . I find it helps with my aching body .

[Hidden in reply to FoggyMoggy]

Did you read the link i posted here about Erythromelagia/EM? And how are you getting on now with your journey looking for answers to horrible symptoms? EM is very rare so most GPs haven’t heard of it.

Here is the relevant extract:

“Other symptoms (of EM) may include:

Swelling - the increased blood flow may cause a build-up of fluid in the affected body part. The medical term is edema

Change in perspiration - some people with erythromelalgia can sweat less (hidrosis) in the affected body part while others may sweat more (hyperhidrosis)

Purple discoloration and/or cold to the touch - some may experience cold and/or bluish skin when they are not experiencing a flare-up. This may be related to the narrowing of the blood vessels, known as vasoconstriction Some people may find that their symptoms appear on the face, ears, knees or other parts of the body.”

[FoggyMoggy in reply to Hidden]

Hi Hidden I think I read at the time (it was a few weeks ago?) but there was something in it that mad eye think this isn't what I have. It's very difficult, isn't it, to find exactly what is causing it. I've been given several explanations for the HH. Think it was triggered by the menopause but that isn't the whole story or even a big part of it as far as I can tell. But I have got a letter through from rheumatology but probably a big waiting time and have also been referred to dermatology so will see what they bring when I finally get to see some specialists!