Introducing myself - feedback needed & appreciated

[allsorts]

Hi everyone, just joined.  39 uk female with CFS/FIBRO and PTSD.  I have been looking at Sjogrens for a while due to my symptoms and need advice on how to approach medical personnell as they are putting everything down to fibro and not testing for anything autoimmune.  I think I have Sjogrens as * I am thirsty all the time, especially when active * I wake up with a very dry mouth/white gums and tongue and the dryness seems to spread down my throat/airways, hard to breathe -gets better when I drink.  Glands have been swollen for months under chin.  I have been told before that my symptoms could be related to being a mouth breather (have apnea as well- untreated).  But I find it odd why I am ALWAYS dry in the mouth - parched sensation. Dental decay is getting so bad. Even during my MRI I wanted to stop because I needed to drink which is the only way I know how to make this better.  My eyes don't seem to be affected as much.  thank you whoever reads and replies.


CFS/FIBRO 2007,  PTSD, life long,  Hypermobility Syndrome, 2006,  Meds,  Thyroxine, Diazepam, Escitalopram, Cocodamol, Ibuprofen, Pregabalin

Allergies, Pain, Apnea, Irregular Heartbeat, Costochondritis and many more.

[Scottietottie]

Hi allsorts 

Welcome to Sjogren's world.

I was initially dxd with a thyroid problem (I notice you are taking thyroxine) and it was my endocrinologist who tested me for other autoimmune problems when I asked her whether being hypothyroid could cause my mouth to feel dry, my eyes gritty and could lead to extensive dental decay.

It's important to make sure that your thyroid meds are optimised too. I find mine seem to need adjusting about twice a year - sometimes down - sometimes up. The trouble is a lot of thyroid and SjS symptoms overlap so you will just have to be persistant and demand some answers!

Take care - Scottie 

[Joe S.]

Welcome to the forum Allsorts.

:)Allsorts- Binary, heap, insertion, bubble and quick. Sorry random thoughts on sorting routines from an old computer programmer.

What are your blood sugars?
Try sleeping with a polar fleece mumps scarf.
Do you have Candidia?

Some of us have posted what we are taking in our signatures to help others.

Don't Panic
Breathe - Breathe in "I am", breathe out "calm"
spoon theory - http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[lynnmarie219]

Hi allsorts and welcome to Sjogrens World!

I can certainly understand your frustration when you have so many things going on all at once...it can become overwhelming at times. When I was first starting out with so many symptoms and unanswered questions...I tried to take the most important and/or life altering ones and push for those answers first. I found that after I did that ....other things seemed to be answered as well and started to make more sense to me. It actually fell into place!

I also agree with Scottie when she said...be persistent and demand some answers. Have you come right out and asked about having or being tested for sjogrens? Another thought...if your doc wont work with you or you are unhappy with his/her actions...it's ok to move on and find another doc who is able to make the time to help you get some answers and helpful treatment!

Good luck in your journey for answers....hang in there and come back to SW often for information and support...lots of both here! 

[Meld256]

Welcome to Sjogren's World, allsorts! 

I agree with all Lynnmarie and Scottie has said, and so will just say I hope you can find some answers.

But to repeat, insist on answers from your doctors. It can be overwhelming and just get old, but starting with one thing will keep it more focused and easier.  I would ask first of all, if you may have thrush in your mouth (candida)?  It causes the white spots, patches, redness of tongue, pasty look to the tongue and a burning feeling. Thrush can be common to those of us with Sjogren's.
An antifungal mouthwash will clear it up.

So, be persistent, see a dentist, a rhuematologist, or a good caring primary care doctor. You may need to go to a couple of docs to get some answers, but please don't give up.  You deserve answers and deserve treatment to help you.

Take care and keep us posted.
Melinda

[Pisces24]

My ANA, SS-A and SS-B blood tests were soooo high there was no doubt I had Sjogrens. Have you ever had those tests taken?  Also a good idea is a TSH - thyroid test as when that is off it makes you feel crummy.

My brain must process what it wants too as when I saw AllSorts  I read it as Out Of Sorts. LOL      I've felt that way and call my "wet cat" feeling.  When cats get wet, they get out of sorts and grouchy and catnip wouldn't even please em.  Nothing is pleasing and you just want the world to leave you alone for a bit. It does go away but takes awhile.

I would suggest using a humidifer in the house. It really helps it to be not so dry.  I also do sinus flushes which is basically squirting my nose with a distilled water/sea salt mixture. It is call NettiPot and they have it in most drugstores. I have the one that has the bottle with a hole in the top.  Hope I've helped!

[Meld256]

Pisces,

I had to smile over your description of "wet cat" feeling.  I think I've had a case of that in the last week or so! Just didn't know what to call it; now I know...

Examples: My husband wanted to take me out on an ATV ride on a sunny day, and I wanted to but the hips and back were killing me. Just leave me on the porch, thank you.
               My MIL pops over unannounced and wants to know what we're fixing for dinner; she'll stay. Ugh..I don't feel like cooking or feel like doing it as quickly as she wants. Will I also go to the grocery with her? No, don't want to. Leave me alone.
               Niece invites me to out to dinner; I had all my top teeth out last week. No, don't think I feel like going to watch you eat a steak, when my mouth hurts and I'll have mashed potatoes. Leave me on the porch.

I don't want to be a "stick in the mud" but lately I've felt like it sometimes. Maybe we all do that occasionally? My mantra is "just leave me on the porch", in the quiet with my dog.  I'm having a "wet cat" week. 

[hikerknees]

Welcome allsorts,
Hope you find the answers  and support you need here, I have found this site very helpful!  I was intrigued by your diagnosis of hypermobility and am wondering if that is related somehow--my rheumy is always checking my joint mobility and says that is a symptom of something.  Ah well, this syndrome always keeps you guessing...