Thoughts/practical advice on possble Sjogren's

[TMM1000]

Hi,

I'm new here, so apologies if I've not posted in the right place. I'm looking to get some thoughts and practical advice on the possibility I may have Sjogren's. 

I'll start with a little background, so bare with me before I get to the point. I'm male and have had horrible, unexplained fatigue and other issues for a number of years. I've had numerous blood tests and all have come back normal. As a consequence, the GP's I have seen have gone down the route of suggesting my problems are due to anxiety/depression. I didn't think this was the cause but tried various antidepressants, which either didn't help or were intolerable due to side effects.

Along with awful fatigue, one of the problems I have is problems sleeping, more specifically my nasal passages being very dry when sleeping. My nose gets so dry that it becomes very difficult to breath through my nose and this constantly wakes me. I was referred to an ENT consultant and they carried out allergy tests and looked to see if I had any obstructions, such as polyps. Apart from hay fever, I have no other allergies and there where no polyps, so the consultant wrote to say they couldn't find any problems to my GP. My GP then suggested nasal sprays and breathing strips, neither of which have helped.     

More recently, my mouth is now incredibly dry. During the day it is more dry than normal but manageable. At night, however, it's awful. I wake up frequently unable to breath through my nose due to dry nasal passages and an incredibly dry mouth where my teeth are stuck to the inside of my mouth. The back of my nose and throat also feel incredibly dry. My ears also feel itchy inside and I often have a crunching popping in one ear too. I've tried using a humidifier but this has only helped a small amount. I also tried using dry mouth sprays and aloe vera gel in my nasal passages. These also haven't helped very much.

I've spoken to my GP numerous times and they've been of little help. I spoke to them again recently and they just seem to think it's a minor problem. I had to emphasize in the strongest possible terms how awful/debilitating this is every day. As a consequence, they ordered more blood test,s but these also came back normal. To cut a long story short, I'm going to be referred to a Sleep Apnea/disordered breathing clinic, although I'm not sure if this is the right direction now. There was a brief mention of being sent a see a rheumatologist but the GP referred me to the sleep clinic in the end.

I've begun to suspect that this may be a result of sjogrens, although I don't have a problem with dry eyes. It's just my nasal passages, mouth and ears. As I stated, I'm male and I know women are impacted by this more, although there is a family history as my grandmother had very bad rheumatoid arthritis and problems with dry mouth etc.

What I'd like to know from people living with sjorgren's, is what is the best way of going about diagnosis? Is it possible to have Sjogren's symptoms without dry eyes? And can anyone recommend things to help with dry mouth and nasal passages at night?

Many thanks in advance for any replies.

[Joe S.]

Pleas let another male say welcome to the forum. You may have Sjogren's. It takes about 7 years for most to get diagnosed. Men sometimes longer. Diagnosis is accomplished by elimination in most cases.

There are things you can do to mitigate the symptoms. At night, sleep with a mumps scarf on your head. It is important to keep your sublingual glands and your ears warm.

Sip, swish, hold and swallow water. Do not drink it! This will help with moisture issues but it does not reverse the progression of the disease.

Don't Panic. With pain, our anxiety builds and so does our pain. It is a viscous cycle that builds on itself if you let it. Over time this cycle will increase depression also. You can break the cycle by breathing through the pain. For reduction of anxiety and depression Cognitive Behavioral Therapy (CBT) works well. You can read about it and practice it with the exorcises found in the book "Feeling Good" by David Burns.

I also use a simple meditation. I practice it when I do not need it, so I can do it when I do need it. Find a comfortable position. With your eyes closed, look to the top of your head. As you breath in, think "I am". As you breath out think "Calm". try to repeat this for 15 minutes. If you fall a sleep that is okay. If you loose focus, start again.

I take Acetyl-L-Carnitine and R-Lipoic Acid to repair damage to Gene 6 and 7 of my mitochondria DNA. (Why I believe my immune system is attacking my body.

Before taking any medication or supplement check for Side Effects, Counter Indications, and Drug interactions. The life you save may be your own.

ALWAYS bring an advocate with you to your doctors visit. Your advocate may catch something that you miss and can vouch for you when the doctor does not believe you. I take my wife.

Some of us have posted in our signature what we are taking. 

[araminta]

Hello and welcome to the forum.   I'm very sorry you are having to put up with all this.

It sounds possible you have Sjogrens but of course it could be something else.   I can completely relate to how you feel as I have all those symptoms except the itchy ears, I also have the usual dry eyes, skin, and a few other things.  I've had these symptoms since early 2015 and have seen a rheumatologist, ophthalmologist, dermatologist, but still have no diagnosis of Sjogrens.   As Jo says it can take 7 years to get that, and I completely agree with him that panicking is just going to make things worse.

In the meantime there are things you can try to relieve symptoms.   I almost always have some sugar-free chewing gum in my mouth, and Xylimelts can be safely used in your mouth at night,  they will help the dryness.   I use Ayr spray in my nose whenever I get up in the night, and before I go to bed I put Vaseline/petroleum jelly on my liips to prevent them cracking.   I also smooth a very small amount just inside the lower part of the nose, but be careful with that as there's a risk of inhaling it into your lungs.   I think I've seen people say that pure coconut oil on a q-tip can be used to help dry ears, maybe others here can advise about that.

Meditation can be helpful, or just making sure you do pleasant things to stop you focusing too narrowly on symptoms.   This forum has been extremely helpful to me and I think you will benefit from the knowledge of other members.    

[TMM1000]

Pleas let another male say welcome to the forum. You may have Sjogren's. It takes about 7 years for most to get diagnosed. Men sometimes longer. Diagnosis is accomplished by elimination in most cases.

There are things you can do to mitigate the symptoms. At night, sleep with a mumps scarf on your head. It is important to keep your sublingual glands and your ears warm.

Sip, swish, hold and swallow water. Do not drink it! This will help with moisture issues but it does not reverse the progression of the disease.

Don't Panic. With pain, our anxiety builds and so does our pain. It is a viscous cycle that builds on itself if you let it. Over time this cycle will increase depression also. You can break the cycle by breathing through the pain. For reduction of anxiety and depression Cognitive Behavioral Therapy (CBT) works well. You can read about it and practice it with the exorcises found in the book "Feeling Good" by David Burns.

I also use a simple meditation. I practice it when I do not need it, so I can do it when I do need it. Find a comfortable position. With your eyes closed, look to the top of your head. As you breath in, think "I am". As you breath out think "Calm". try to repeat this for 15 minutes. If you fall a sleep that is okay. If you loose focus, start again.

I take Acetyl-L-Carnitine and R-Lipoic Acid to repair damage to Gene 6 and 7 of my mitochondria DNA. (Why I believe my immune system is attacking my body.

Before taking any medication or supplement check for Side Effects, Counter Indications, and Drug interactions. The life you save may be your own.

ALWAYS bring an advocate with you to your doctors visit. Your advocate may catch something that you miss and can vouch for you when the doctor does not believe you. I take my wife.

Some of us have posted in our signature what we are taking.

Thanks for your response, Joe. Yes, it's hard not to feel stressed at the moment but I'm trying to stay calm, although not very successfully sometimes. I've tried both CBT and meditation but they haven't really helped much. I find engrossing myself in something more of a release, but it can be a challenge. At the moment I just want answers and it's very frustrating to have to wait.

[TMM1000]

Hello and welcome to the forum.   I'm very sorry you are having to put up with all this.

It sounds possible you have Sjogrens but of course it could be something else.   I can completely relate to how you feel as I have all those symptoms except the itchy ears, I also have the usual dry eyes, skin, and a few other things.  I've had these symptoms since early 2015 and have seen a rheumatologist, ophthalmologist, dermatologist, but still have no diagnosis of Sjogrens.   As Jo says it can take 7 years to get that, and I completely agree with him that panicking is just going to make things worse.

In the meantime there are things you can try to relieve symptoms.   I almost always have some sugar-free chewing gum in my mouth, and Xylimelts can be safely used in your mouth at night,  they will help the dryness.   I use Ayr spray in my nose whenever I get up in the night, and before I go to bed I put Vaseline/petroleum jelly on my liips to prevent them cracking.   I also smooth a very small amount just inside the lower part of the nose, but be careful with that as there's a risk of inhaling it into your lungs.   I think I've seen people say that pure coconut oil on a q-tip can be used to help dry ears, maybe others here can advise about that.

Meditation can be helpful, or just making sure you do pleasant things to stop you focusing too narrowly on symptoms.   This forum has been extremely helpful to me and I think you will benefit from the knowledge of other members.

Thanks for your response. Xylimelts look very promising, there's also another spray (I can't remember name of) that contains sesame oil that looks good too. I tried aloe vera gel but the consistency is too thick and not very lubricating. I can cope during the day with my mouth/nose. The real problem seems to be at night. 10 minutes after lying down my mouth drys up and so do my nasal passages.  My nose feels kind of congested but without any mucus. Trying to get decent sleep is a real challenge and pretty soul destroying at the moment.

In respect of Vaseline, I've read not to use that due to the risk of inhalation. I'm not sure it would help that much anyway as it won't reach the top of my nasal passage.   

Thanks again for your response.

[deniselb]

Did the numerous tests you had include those for ANA/Sjogren's antibodies? If these are negative it doesn't rule out Sjogren's at all, but if they're positive it will get people's attention.

[TMM1000]

Did the numerous tests you had include those for ANA/Sjogren's antibodies? If these are negative it doesn't rule out Sjogren's at all, but if they're positive it will get people's attention.

I'm not completely sure but I believe so. All tests have come back normal apparently.

[Pete0211]

I had similar issues with the nose/throat/mouth when it first hit me. What helped at night was Nelimed nasogel, a dry mouth gel (Biotene makes one you can find in stores, Oral7 and GC Dry Mouth Gel are others you can get online), and humidifiers. When it was at it's worst, an IV injection of corticosteroid (followed by a couple of steroid dose packs and another intramuscular shot of corticosteroid) was able to stop the inflammation that must have been at the root of the dryness attack. Coupled with a prescription for pilocarpine (then cevimeline), after a few months I was almost feeling back to normal and able to sleep through the night.

I hope some of that might be able to help you with the next time you speak with the doctor.