Sjogrens...anyone else have CFS/ME and Sjogrens?

[Misfit Toy]

Was just diagnosed. What else! CFS, Fibro, IC, CVID, Celiac and now Sjogrens and I am sure I am missing something.

So, anyone else with Sjogrens and what are your experiences?

It really is an immune system gone haywire.

 

[CFS_for_19_years]

I've had blood tests for Sjogren's that have always been negative BUT I have had dry eyes for 25 years so I "feel your pain." I've had 3 out of 4 puncta surgically cauterized, which helped. I use Genteal gel at night and Refresh drops during the day. Having dry eyes limits which medications I can take since a lot of them dry out my eyes. Waking up at night with my eyelid stuck to my eyeball is something I can do without.

I have CFS/ME and FM. The dry eyes preceded these illnesses.

 

[frenchmoxie]

Yup, Sjogren's Syndrome here. Diagnosed in 2007 at age 22.

 

[Misfit Toy]

@frenchmoxie , you are not alone!

 

[Violeta]

I've been looking into diabetes insipidus and noticed that Sjogren's is mentioned with respect to nephrogenic diabetes insipidus, if anyone is interested.

 

[Misfit Toy]

Yes, I read that also.

 

[Insomniac]

The only support group I ever went to in Israel was run by a woman with Sjogren's and fibromyalgia together. CFS does not get diagnosed much in Israel so she could have had that too but was undiagnosed.

I myself only have CFS, FMS and IBS. My tiredness and weakness were worse than hers... she was even well enough to walk and own a dog, but she had to constantly put in fake tears through the meeting.

I bet FMS is comorbid with a lot of autoimmune deseases.

 

[Misfit Toy]

@redrachel76 -wasn't she that awful woman? You had a fight with her or I remember you being very ill from that group meeting.

Admittedly, I am able to get out everyday, drive, cook, clean my place and I have bed days. I am not in bed all the time like many on here. But I know other CFS folks like that, too.

This disease is such a mystery. I don't get it.

 

[alex3619]

I can have severe dry eyes, though rarely, to the point I am blind for much of a day as I have to keep them closed. I have severe and sore dry mouth and throat, though sometimes it dies down or goes away for a while. I had a negative blood test but not the biopsy which is much more reliable.

There are many of us who have no Sjogrens diagnosis but who are familiar with at least some of the issues.

There are two really annoying issues. I have to either eat wet food or drink and eat. I cannot eat dry food without at least a few glasses of water.

The second is movie theatres. Back when I was still able to get out to see movies I found that sitting in a movie theatre is much more likely to trigger my sore dry eyes, usually only one of them. So I have seen many movies with one eye shut. This is not happy making.

 

[Misfit Toy]

@alex3619 -what did lip biopsy say? They can base a diagnosis off of symptoms, eye exam and salivary glands.

I'm positive, but....anyway....there is help for what you are talking about. Restasis for eyes and something for mouth and eyes! I was just prescribed Restasis. My eyes have no fluid. I have to use a humidifier in my room also.

You don't need a positive test.

 

[alex3619]

Sorry, I should have been more clear. I have not had the biopsy. So I have no idea if I have Sjogrens or not. The blood test is not reliable.

I am familiar with some treatments. My eye issue is severe, but rare. These days maybe a couple of times a year. The throat issue I treat with soda water and eating wet food. I hate the "treatments" that they promote, which don't work very well for me. I have tried samples. I have a friend with ME who cannot swallow most food now, and is not able to get any help (so far). This friend has to drink liquid food for the most part.Yet even drinking water has become a struggle.

One thing I find, but am not sure of, is that when I have polyunsaturated deficiency symptoms, like being wired and having peeling skin, then my throat and eye issues seem to respond to eating more omega 6 fats - not too much more though as these can drive other symptoms.

 

[Misfit Toy]

I didn't have the lip biopsy. The rheumy was like let's skip it! Thank God! My throat is dry, I always have liquid on hand and yeah...now the Restasis which makes your tears work again.

We shall see. Interestingly, they feel that one of the biggest triggers is EBV. Go figure. Ding ding ding!! That's what started this whole thing for me. Dang EBV.

 

[CFS_for_19_years]

Besides the goops and drops that you can put in your eyes, two food supplements that I find essential are flax oil (1-2 tablespoons/day) and an electrolyte drink called Vitalyte. Both products take 2-3 weeks to kick in and I can't get by taking just one or the other - it has to be both.

Since I'm never at a point where things feel good, I keep trying new things. I just ordered some BioTears by BioSyntrx, a nutritional supplement for dry eyes that had good reviews. It should arrive in a few days.

The second is movie theatres. Back when I was still able to get out to see movies I found that sitting in a movie theatre is much more likely to trigger my sore dry eyes, usually only one of them. So I have seen many movies with one eye shut. This is not happy making.

This happened to me last night when I was watching TV! One eye was burning and hurt more than the other so I just closed the one lid. I can't recall a time when I've done this before. I do recall thinking, "This is not convenient!"

 

[Daffodil]

I have also read that EBV can cause Sjorgens. Have your EBV antibodies been tested?

 

[perchance dreamer]

My dry eyes improved so much when I started drinking more water and adding Himalaya or Celtic salt to it. This also made my skin more moist and really oily when I first started.

I've always drunk a lot of water, but adding the salt is what really helped. I went from having eyes so dry that my eye doctor told me I had no tear film to having just a mild dry eye condition now.

At times they were so dry that I had to pry them open in the morning.

I know not everyone can add more salt, but I also have low blood pressure and OI, so the salt helps me with those conditions also.

That Genteal Severe Eye Gel is great. I keep it in the fridge, and it's so refreshing and lasts longer than any other drops I've ever tried.

 

[NK17]

Amongst my collection of diagnoses and on top of ME, triggered by an awful case of Infectious Mononucleosis (EBV) when I was a teenager, I also have a Sicca Syndrome diagnosis from my rheumatologist.

I've been tested for the blood markers Anti SS-A and SS-B , the specific antibodies for Sjogren a few times and those were always negative.

In 2012 I decided to take this in my own hands and went to UCSF to have the minor salivary glands biopsy.

Dr. Ava Wu runs the SICCA Sjogren's International Collaborative Clinical Alliance @ UCSF and she herself does hundreds of biopsies on all the participants.

They also run several blood tests and you stay half a day and talk to a RN from the rheumatology department.

I had a really good experience with them. If you look the SICCA up on the internet you'll find other centers around the world. I don't know if the one @UCSF is the only one in the US.

My tests' results suggest that I have features of Sjogren's Syndrome so the Sicca dx (which means dry from the Latin) remains and my rheumatologist keeps me under control.

I've had dry eyes for decades. My dry throat and lungs are becoming a big problem too. I'm currently experiencing a flare up and will go see the eye doctor soon.

Sjogren is a nasty autoimmune disease which can involve many organs and on average it takes 6 years to be diagnosed. If you suspect that you might have it, as it may also overlap with ME/Cfs, I'd strongly suggest that you look up the work of the SICCA and decide if you're willing to participate in their international clinical trial effort.

There is an interesting Japanese study (1996) titled 'Seronegative' Sjogren's Syndrome manifested as a subset of CFS that you can look up on the internet.

 

[Mya Symons]

I have Sjogren's, Hashimoto's, Fibromyalgia and CFS. It does make a person wonder if Fibromyalgia is another autoimmune disease or if all of the above were triggered by a virus or bacteria infection.

Do you also have Rheumatoid Arthritis? I do not. I was told that most people with Sjogren's have secondary Sjogren's and primary Rheumatoid Arthritis and it is hard to diagnose without the rheumatoid arthritis. I have SSB antibodies. I am still not sure what exactly that means. It is hard to get a straight answer from doctors.

 

[Misfit Toy]

I have primary Sjogens but also Ehlers Danlos. Yay me! It has really hit me how dry I am. As nk17 mentions I have sicca pretty bad. I just thought...oh, it's my CFS. I carry water with me everywhere due to CFS. My hair is dry due to getting older....NOT. Sjogrens is in the house.

I have hashimotos too and a large nodule on thyroid.

@Daffodil my EBV is off the charts high but I can't tolerate anti virals.

I am on plaquenil and topamax and Restasis soon. Along with a med for the dryness. Not on that one yet. Okay on plaquenil so far.

I'm happy for the diagnosis because it explains a lot, especially my SEVERE pain. That's symptom #1. No rheumatoid arthritis.

 

[Daffodil]

the fact is, EBV causes autoimmune disease but I do not know why they cannot find an auto-antigen after all this time. it is ridiculous. entire lives lost and no vaccine even. just denials.

misfit toy.....can you try herbal antivirals? when you say you cannot tolerate antivirals, what do you mean? what happens when you take them?

xox

 

[Hell...Hath...No...Fury..]

At the start i couldn't keep my eyes open for more than a few minutes at a time 24/7 they were so dry but i also cried a type of bleach at the time too which coated my eyes in a type of acid that burned badly.

It was exceuciating and lasted for years. The dentist at the time also said i stood a risk of teeth rotting because i had such a dry mouth.

I'm sure tests came back negative for it though.

Since increasing water intake massively its under control now as long as i drink enough.