Ok, I guess that's kind of personal but I don't think I can sweat much anymore. My head sweats but I think that's about it. I think this causes me to overeat and very intolerance of heat. Does anybody else have this problem?
I have found that I can no longer cry and my sinuses are dry. I take Evoxac so I still sweat but I imagine without meds I may not. The B-cells impact exocrine glands. And those would be included.
Sweat glands are secreting glands and these are the glands that are affected by the Sjogrens syndrome. Some people sweat buckets---I do and it almost ruins my life at times. The water runs out of my head and onto my shoulders and onto the floor. I was at Lowes today shopping and I was so hot I thought I would pass out. My clothes and hair were wet when I left.
On the other hand, there are many people on this site who say they never sweat and that is a problem for them. I don't understand the mechanics behind this but it could be possible that their sweat glands have already been destroyed by the Sjogrens. I would think someone would be around to give us some input on this subject. Irish
Yes it does. Both lack of sweating/sweat pouring down for no apparent reason. Right now we are in this heatwave of 96 feels like 106 weather in NC. And I CAN sweat, but mostly from my head.
So, Deb, do you mean OVER HEAT? Everything causes me to OVER EAT. 8)
Ain't we got fun?
Hugs, Elaine
I am also unable to cry, and I find this very disturbing. Crying, like laughing, is a natural release of emotion and tension. I feel as if I'm in a straitjacket. Speaking of sweating, I am unable to produce any moistness from my armpits, but the sweat pours down my face when I'm gardening.
Are our exocrine glands truly destroyed, or placed in a lockdown mode? I don't understand the physiological processes of Sjogren's.
Please, someone invent a magic pill to help us!
Like others I don't sweat any more. I am taking Evoxac, but have to take a much smaller dose, only 15 mg at a time 2x a day, or I sweat like a piglet (really more like a hot hog).
Fortunately, I have been able to produce tears thanks to using Restasis, but the ability to produce has been decreasing even with that drug.
Well i am completly the opposite. here in the UK we are having the warmest weather so far this year, and me I am still cold. it is getting me down as i can never seem to dress well now, always got stockings on and woolies! wrapped in fleecy blanket when I watch TV or on the PC, its got me crazy!
I have always said that Sjogrens can disrupt every part of a body! Dolly
i can sweat everywhere like "before" but my temperature is somehow different. i dont feel the cold like before and my temperature that has always been really low , now is not so low anymore. i can cry but im afraid of doing this bec it hurts a little. yes, i would like to know why sjs has affected my mouth and not my armpits, it would be so much more confortable...
It makes me sweat profusely in a very embarrassing way. Needless to say I avoid sitting down too long in a public place.
When I start to cry, the skin or muscles around my eyes feels very tight. I guess you could say that it it painful to cry. So, I do my best to avoid it.
Hi Deb,
I had not sweat under the arms in years, and no BO under there either. Did not even need deodorants. Lately, for some reason, only a bit and not daily, and only under the right. I do sweat elsewhere. Life can sure get crazy.
Spring
I enjoyed reading people's responses. Interesting how this disease can affect us.
Yes, I do feel like I over heat and over eat!!! LOL....
I found out my thyroid was over active, they had to cut my meds. It's just been a hot summer here in Florida.....
Patients with autonomic illness can go to a major facility and go through an 'autonomic clinic'. It usually takes about a week with a number of tests to determine what sort of autonomic illness a person has, or doen't have.
Am not suggesting that patients with SJS should go through autonomic testing, but with regard to sweating I wanted to share info about a test that is specific to sweat gland function. It's called a Thermoregulatory Sweat Test. This is the test where they sprinkle your body with a yellow powder and put you in a box and really turn up the heat.
You're supposed to turn purple. It's a real mess trying to shower afterwards. If the powder doesn't turn purple than you have neuropathy, but there are very wide degrees of severity. Some people only have distal neuropathy, in their hands or feet. I shouldn't say 'only' because distal neuropathy can be very painful, as all neuropathy is. Distal neuropathy or neuropahy in the hands and feet is perhaps the most common neuropathy.
My last TST test in April the powder stayed yellow on my entire bocy. I am getting the punch biopsy in September to confirm small fiber neuropathy, along with more testing. I know patients on this forum are very sophisticated in their knowledge, but the sweat test is interesting. Most people who say they don't sweat will sweat all over when the box gets really hot. When I had my first TST test I didn't think I would sweat, but I turned completely purple with the exception of some distal neuropathy in my feet.
There are over 70 types of neuropathy. Small fiber neuropathy and autonomic neuropathy are most prevalent with SJS.
I used to have severe night sweats in the first years of having dysautonomia. I woke up soaking wet. That's called hyperhydrosis. (too much sweating) Now I have hypohydrosis. When I have night sweats now the only thing that is soaking wet is my head, face and hair, and oddly behind my knees.
Hope this helps a bit.
I only sweat on my forehead. I sometimes have nightsweats and have to get up to dry my face off in the middle of the night. It's a problem as I live in Florida and my bangs are almost constantly wet. Oh well, I guess there are a lot more worse things. It's just annoying.
Hi Jenny and all,
My point with a thermo sweat test is that it's used to detect neuropathy.
A positive skin punch biopsy is proof positive for small fiber neuropathy but will not detect other neuropathy.
So lack of sweating and neuropathy are linked, and while the thermo sweat test is only available at a few facilities in the country it may be something to ask about if you're having lack of sweat and unexplained pain.
This test was not done on me for SJS, but for another condition called Dysautonomia.
Best,
K
Hi Kitt - Can you tell me where the sweat test is done?
I was diagnosed with Sjogren's in April by my local rheumatologist - positive ANA, SSA. I've had neuropathy from the beginning. Because of the neuropathy, I went to John's Hopkins. They required a lip biopsy and also did the punch biopsy. I also did the saliva spit test and a scan of parotid and submandibular glands.
All of these tests were negative so the JH doctor suggested that it may be Undifferentiated Connective Tissue Disease rather than full blown Sjogren's.
However, I have pain/tingling in my feet and to a lesser extent in my hands and my leg muscles ache as if I had worked out. The neuropathy, particularly in my feet/legs, is my most troublesome symptom. I'm on Plaquenil and Lyrica. I also do not sweat much, and I feel the neuropathy is worsened by not sweating. For example, if I am walking outdoors and it's hot, and I'm not sweating, my symptoms are worse.
My local rheumatologist is starting Rituxan next week. I'm hoping for relief although my experience of this disease is that the treatments are very hit or miss! Have you found anything that restored your sweating. It bothers me a lot!
Thanks for all your input.
Anastasia.
I have the opposite problem, I sweat non stop particularly on my head. In public I can feel sweat drip off my forehead and I try to shop fast and I carry hankerchiefs to mop up. I also have neuropathy and the heat just makes it 1000 times worse and my legs get real wobbly and really tight. I am on prednisone and I suppose that does cause my sweating to increase, but for the last few years I over sweat quite often when not on the pred. I think the small fiber neuropathy wrecks havoc on the peripheral and autonomic nervous system both and thus all the issues. Not to be gross but constipation has been very bad - so much that I was thrilled to be up at 4 am this morning having diarrhea because at least my stomach felt better. Hoping we can all get help! The information on the internet says to treat the "underlying disorder" - if only it were that easy. Wishing you well and the opportunity to sweat some to cool you down.
Anastasia and TRC,
This may help to explain the thermo sweat test.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046462/
My understanding it that it's used for patients who have Dysautonomia or suspected Dysautonomia. Btw, Parkinson't Disease is a form of Dsyautonomia.
POTS, (Postural Orthostatic Tachycardia Syndrom) or NCS (Neurocardiogenic Syndrome) are forms of Dysautonomia. I have both of these with POTS developing first. The forum Dinet is not as sophisticated as SW Forums but it's there to help people.
If you notice that your heart rate changes, not with exercise but posture (from sitting to standing) and your blood pressure also changes under these circumstances you can buy an inexpensive BP and heart rate monitor at a drug store and read the instructions for measuring POTS. It's very simple.
Am NOT suggesting that people with SJS have increased risk of Dysautonomia because I have no knowledge of this.
I do know that people with increased viral load, or high titers to various viruses like many people with CFS do, those people ARE at increased risk of developing Dysautonomia. CFS is Chronic Fatigue Syndrome.
The thermo sweat test are done in combination with a tilt table test and QSART testing, this is what I meant by an 'autonomic clinic' Dysautonomia is a neurologic disorder, not a rheumatoid disorder, yet people with rheumatoid disorders can have have neurologic disorders in combination.
Anastasia, no I've not found anything that restores my sweating.
The only facilities I'm aware of with a thermo sweat machine are Johns Hopkins, Mayo in MN, and the Cleveland Clinic.
Best, K
This is interesting. For a few years I just didn't sweat at all no matter how hard I worked out. Everything dry as a bone always and horrible overheating as a result. Then, this year the sweat has been pouring off me. Even my SJS atrophy below has turned into yeast infection and now a steady tap! And yet I have severe constipation! My eyes are super dry so it's as if some force of gravity is responsible for the distribution. I'm always dizzy, have tinnitus in one ear, heart palpitations after food and drink (swallowing) and my blood pressure swings all over the place. I already have a non length dependant small fibre neuropathy but now I am sure that I have autonomic neuropathy too. I'm assuming the new sweats are part of this meltdown of the autonomic nervous system. But strangely I will suddenly freeze despite the gorgeous weather - it as if my boiler was completely malfunctioning all the time - both ways!
MAT51,
Autonomic testing is very specific and can be done in many places. I was first diagnosed by an immunologist, then by a cardiologist. I went to Mayo several years ago to go through their autonomic testing. It's much more comprehensive than what you can find in most cities.
Vanderbilt, Johns Hopkins, Cleveland Clinic, and Mayo in MN excel at doing this battery of tests. It's quite precise.
You might want to discuss this with your primary doctor for starters and if you're having a change in heart rate from standing to sitting, this is a strong sign.
Dysautonomia is not common. Many doctors don't know what it is.
It's something to consider if you're having heart rate and blood pressure swings. Many people with dysautonomia also have nausea, vomiting and they faint due to low pressure.
I didn't want to start this thread to make people think they might have dysautonomia! Only to offer that there is a very specific test that measures sweat output.
MAT51, you use the words 'meltdown of the autonomic nervous system'. You might want to get this checked on a local level (in your town) to learn more and perhaps put your mind at ease. Your autonomic nervous system may not be the cause of your symptoms.
Again, this is one issue that can be measured very precisely.
Good luck,
K
Thanks Kitt. Don't worry you haven't mentioned anything I wasn't already well aware of. The problem is that I live in Scotland and do not have access to the sophisticated tests that the Mayo and even hospitals in London can boast. I have hypertension so my BP rarely drops very low as far as I'm aware - but it is only tested routinely once a year and only while seated.
Really not sure about my heart rate but I'll check using my home monitor and see what happens as never really thought to do this. I am under a neurologist who has confirmed that I have small fibre polyneuropathy and I have just had confirmation that I do have primary Sjogrens having lived with a diagnosis of seronegative RA fir five years along with Hashimoto's. I think I have autonomic sensory neuropathy. At least this is what my previous GP/ primary doctor described it as on my sheet of diagnosed conditions.
I'm not sure whether this is different to PoTS/ Dysautonomia? The huge swings in temperature, oesophogus shutting down sporadically, Raynauds and heart palpitations after swallowing food or cold drinks could also relate to Scleroderma - which my pattern of ANA points to. So basically I appear to have Primary Sjogrens with overlapping Sclero and RA I think. Maybe PoTS but maybe not. We will see. I see the rheumatologist on 24th of this month and endocrinologist the following day - then neurologist in October. All in a large local teaching hospital with a good international reputation. Should know more after these appointments hopefully.
Ps I should add that I asked a neurophysiologist here about the sweat measuring test you describe but it certainly isn't available in Scotland. She hadn't even heard of it.
Quote from: Kitt on August 03, 2016, 04:45:59 PM
My understanding it that it's used for patients who have Dysautonomia or suspected Dysautonomia. Btw, Parkinson't Disease is a form of Dsyautonomia.
POTS, (Postural Orthostatic Tachycardia Syndrom) or NCS (Neurocardiogenic Syndrome) are forms of Dysautonomia.
I have that (faintness from standing too quickly)...gosh, it seems like all of these different dysfunctions are all linked together.
My grandma has a bit of Parkinson's, her brother had MSA, and their mother also had quite a bit of Parkinson's. I was reading up MSA on Wikipedia, and it shares a
lot of symptoms with Sjogren's.
I hardly ever sweat, unless I'm in a hot steam sauna, or an attic. Otherwise most of my sweat evaporates quicker than it comes out, my skin just gets slightly moist.