Finally diagnosed with Sjogrens

[web8784]

Hi I'm new to this forum, finally diagnosed with Sjogrens, but suffering the symptoms for years. Doctors unwilling to listen. Family busy, which I understand, but not really listening when I say about the fatigue, other symptoms, it's overwhelming & frankly very frightening, the long term prognosis of Sjogrens is terrifying. The locum Rheumatologist wasn't very helpful, gave me lots of awful factual Info about the progression of Sjogrens,,no info about self help tips to ease the dry mouth/eyes etc, help with the fatigue, joint pain. Lots of reading & lifestyle changes, long before my diagnosis. Making my own Kefir milk pro-biotic, coconut oil pulling for mouth, great moisturiser & gentle exercise. Humidifier in my bedroom, does anyone have any other self help tips. Continuous head colds, could be from grand-children, feeling run down & need to chat with fellow Sjogrens sufferers 🤧🥱 is this how I will feel for rest of my life 🙄x

[Liz D.]

Welcome to this forum. It can be so discouraging when you feel so awful and are not getting the proper help.  If you can find a rheumatologist that is understanding and can put you on medicines like plaquenil and evoxac or pilocarpine for saliva, you may start feeling better. 

I was fortunate that my rheumatologist prescribed these for me right away.  That was once I finally got the diagnosis after suffering for years.  Unfortunately, Sjogrens is misunderstood by so many and I have found we need to fight for ourselves to get the needed help.  But once you do, you can begin to live somewhat of a normal life.  Just somewhat though, there are always things that affect us and it can be different for everyone. 

My biggest problem is my dry mouth.  I've had so many dental problems that I think I bought my dentist his Mercedes!  And it can hurt to talk.  By the end of the day, my mouth is so sore.  I've tried coconut oil pulling but did not get relief.  The meds like evoxac help though.  And the fatigue I had where I could barely get out of bed is better due to the plaquenil. 

I hope you can get the help you need.  It can be trial and error at the beginning but you'll eventually find the the right help.  In the meantime, I understand your frustration.  Hang in there.

Liz D.

[Judie P]

Congratulations on finally getting diagnosed.  I can remember how anxiety ridden I was for years before I was diagnosed.  I am so glad that you can now find some calm.

[Scottietottie]

Hi 

Welcome to the forum. Getting a diagnoses can take awhile so it's good you have one. The most important thing is getting the symptoms treated. Then it's a case of adjusting to a new normal!

Take care - Scottie 

[web8784]

Hi I'm new to this forum, finally diagnosed with Sjogrens, but suffering the symptoms for years. Doctors unwilling to listen. Family busy, which I understand, but not really listening when I say about the fatigue, other symptoms, it's overwhelming & frankly very frightening, the long term prognosis of Sjogrens is terrifying. The locum Rheumatologist wasn't very helpful, gave me lots of awful factual Info about the progression of Sjogrens,,no info about self help tips to ease the dry mouth/eyes etc, help with the fatigue, joint pain. Lots of reading & lifestyle changes, long before my diagnosis. Making my own Kefir milk pro-biotic, coconut oil pulling for mouth, great moisturiser & gentle exercise. Humidifier in my bedroom, does anyone have any other self help tips. Continuous head colds, could be from grand-children, feeling run down & need to chat with fellow Sjogrens sufferers 🤧🥱 is this how I will feel for rest of my life 🙄x

Welcome to this forum. It can be so discouraging when you feel so awful and are not getting the proper help.  If you can find a rheumatologist that is understanding and can put you on medicines like plaquenil and evoxac or pilocarpine for saliva, you may start feeling better. 

I was fortunate that my rheumatologist prescribed these for me right away.  That was once I finally got the diagnosis after suffering for years.  Unfortunately, Sjogrens is misunderstood by so many and I have found we need to fight for ourselves to get the needed help.  But once you do, you can begin to live somewhat of a normal life.  Just somewhat though, there are always things that affect us and it can be different for everyone. 

My biggest problem is my dry mouth.  I've had so many dental problems that I think I bought my dentist his Mercedes!  And it can hurt to talk.  By the end of the day, my mouth is so sore.  I've tried coconut oil pulling but did not get relief.  The meds like evoxac help though.  And the fatigue I had where I could barely get out of bed is better due to the plaquenil. 

I hope you can get the help you need.  It can be trial and error at the beginning but you'll eventually find the the right help.  In the meantime, I understand your frustration.  Hang in there.

Liz D.

Welcome to this forum. It can be so discouraging when you feel so awful and are not getting the proper help.  If you can find a rheumatologist that is understanding and can put you on medicines like plaquenil and evoxac or pilocarpine for saliva, you may start feeling better. 

I was fortunate that my rheumatologist prescribed these for me right away.  That was once I finally got the diagnosis after suffering for years.  Unfortunately, Sjogrens is misunderstood by so many and I have found we need to fight for ourselves to get the needed help.  But once you do, you can begin to live somewhat of a normal life.  Just somewhat though, there are always things that affect us and it can be different for everyone. 

My biggest problem is my dry mouth.  I've had so many dental problems that I think I bought my dentist his Mercedes!  And it can hurt to talk.  By the end of the day, my mouth is so sore.  I've tried coconut oil pulling but did not get relief.  The meds like evoxac help though.  And the fatigue I had where I could barely get out of bed is better due to the plaquenil. 

I hope you can get the help you need.  It can be trial and error at the beginning but you'll eventually find the the right help.  In the meantime, I understand your frustration.  Hang in there.

Liz D.

[meirish]

Sorry you had to wait so long to be diagnosed. There are a lot of us on here like that. It took me 30+ years and before it was all over I had 4 other autoimmune diseases diagnosed. Such is life.

Just a note: if you go to the search next to the orange Home button above you can search and find all sorts of info that will help you as you go through your various issues with Sjogrens. I have been on this sight over 10 years and there is a ton of information on just about any subject that is available to all of us too read through if we take the time.

Hope you find what you need. meirish

[web8784]

Gosh, that seems to be how things are for alot of us.

Iv not been on here for such a long time. Struggling with symptoms of Sjogrens & breast cancer treatment. It's exhausting.

Think I have a sinus infection after COVID & lots of colds from grand children. Pharmacist wouldn't prescribe antibiotics, can't get Dr's appointment until 21st Feb, so trying lots of self help things.

Any suggestions, thanks Tess x

[Scottietottie]

Hi 

That's bad having to wait that long for a doctor's appointment. Any chance of going to a walk in centre?
Infections need treatment.
 
You could try putting a menthol crystal in boiling water and inhaling the steam with a towel over your head as self treatment. May ease symptoms a bit but  you need to be assessed.

Take care - Scottie 

[Linda196]

Unfortunately, a sinus infection is quite likely to be viral, especially after COVID or frequent colds, so antibiotics would be of no use. If a pharmacist were able to order a culture of any discharge and tell for sure that it wasn't viral, they might be able to prescribe for an advantageous bacterial infection, but that remains the territory of a doctor, at least in my area.

Have you ever tried a Netti Pot or other nasal irrigation?

My go-to for any nasal congestion is Thyme tea with lemon and ginger (and, being Canadian, maple syrup for taste). I've also found that limiting dairy when I have any respiratory congestion is (or seems to be) helpful. Apple cider vinegar (a few tablespoons in hot water) is also a commonly recommended treatment for congestion, and has antibacterial and anti-inflammatory benefits.

I can't take Vitamin C,(aggravates my autoimmune symptoms) but many people find it helpful, especially for protection from seasonal viruses