Does SJS affect sweat glands?

[Anastasia]

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.

[trc1962]

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.

[Kitt]

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

[MAT51]

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!

[Kitt]

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

[MAT51]

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.

[SabbraCadabra]

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.