I Need advice

[PeachyBlossom]

Hi all I’m new to this group.

I’ve decided to join to get some advice since I’m so confused I’m only 17 and I’ve had something wrong with me for 8 months now (since the end of February) and I’ve gone for so many different tests and doctors haven’t got a clue what’s wrong with me I feel like they don’t even really understand how bad it is.

I haven’t been diagnosed with sjogren’s and I’m not sure if I have it or not but whether I have it or not I’m pretty sure something is wrong with my salivary glands but I’m not sure about what it could be. I don’t get sjogren’s symptoms like dry mouth or pain but I’ve got so much swelling around my face and neck and it keeps going up and down but when it flares up it feels so uncomfortable, not because of pain but because I can feel the swelling there like my skin is tightening or stretching where the swelling is.

I get other symptoms too like fatigue, muscle weakness, worsened anxiety, feeling like there’s a lump in my throat and hair loss.

I only get dryness in my eyes and no where else in my body and I can only tell that they are dry when I cry because each time I cry my eyes actually sting to the point where I can’t cry anymore cause my eyes sting that much. it feels so much worse then when I get shampoo in my eye.

I get swelling in the sides of my face under my ears (one side is usually more swollen then the other), around my jaw, down the front and sides of my neck

And in my mouth the insides of my cheeks are swollen, the back of my throat where my tonsils are, are red and only a little bit swollen and I have very bad swelling under both sides of my tongue.

Also the bit of gum that attaches my tongue to the bottom of my mouth has a few bumps on it. And when I move my tongue saliva squirts out of them so I’m not sure if it’s the opening of the sublingual salivary gland duct and it’s blocked or something? But it’s never done that before.

It’s so weird I feel like I keep getting new symptoms all the time. 8 months ago when it first started it came on so suddenly I was just sitting in bed reading before I went to sleep when suddenly I got the feeling of a lump being stuck in my throat I thought it was a tablet that had gotten stuck there since I had a tablet earlier that night I went to go look at the back of my throat in the mirror to see if I could see anything and my tonsils looked so red and swollen and looked like they had pus on them I looked up things on google and everything pointed to tonsillitis. I was at my grandparents house for a holiday at the time and they gave me some honey and tea and then went back to bad cause it was late at night then the next day I started to get breathing problems so they rushed me to the hospital but the doctor told me that my throat looked fine and didn’t look as bad as other teens throats they’d seen and that I was ok even though I obviously wasn’t. So I went home only to have the same breathing problems happen to me the following night so I was rushed back again to the hospital just to be told the same thing that I looked fine and that it was probably just a panic attack. But they sent me home with antibiotics just in case. Since then it’s become so much more then just tonsillitis. The antibiotics never worked and I’ve had 4 lots of antibiotics just in the last 8 months I’ve been for numerous tests every few weeks just to be told I’m fine every single time.

I don’t feel fine at all I always look swollen and there’s always the feeling of a lump in my throat. And I always feel so weak and tired. It’s absolutely awful it’s taken over my whole life and I feel like at this point I’m never going to get any answers and that I’ll never get better. I have my good days and bad days I’m so grateful for my good days but they are far and few in between I only have a good week probably one week per month and I have 3 or 4 bad weeks before another good week comes and when I have my bad weeks they are bad. I lose all my energy and feel like doing nothing.

I’ve had all sorts of tests to check what’s wrong like blood tests, thyroid tests, ultrasounds and ct scans. The blood test showed high testosterone and insulin resistance but nothing to do with my throat and face and neck. And every thing else came back normal.

I’m thinking of going back to the doctors next week and specifically asking them to check my salivary glands. Cause the swelling feels so uncomfortable on either side of my face it feels like a mass in each cheek.

Until then I need some advice on how to make the swelling and discomfort go away. I’ve already tried strepsils, spoonfuls of honey, lemon and cinnamon tea, antihistamines, warm compresses, massaging the swollen areas and extra water. But nothings working.

Also has anyone had a similar problem to me and what was your diagnosis?

Thanks ❤️

[AnnaMaeCat]

I’m not sure this is the answer that you’re looking for but there were a few things you wrote that made me curious. I’m 46 in Canada and started developing Sjögren’s symptoms in January and had a wave of really challenging symptoms including muscle weakness after use, sore joints, some fatigue and brain fog and dry mouth and eyes, dry brittle hair and eventual hair loss… Many more. Most concerning was a couple of months of difficulty breathing that was very unlike my mild allergy induced asthma and never responded to asthma medication. It was more like a heaviness and tightness in my lungs that was worse at night or with significant stress. I also showered in the middle of the night preparing to go to emergency over breathing concerns on 2 occasions. Eventually prednisone on two occasions kicked it and I haven’t had the lung issues since. While awaiting doctors appointments over the last 6 months (so far my blood work is clear for Sjögren’s antibodies and Autoimmune), I’ve been doing everything I can that I’ve read for autoimmune issues - good sleep hygiene, lowering my stress, daily walks/mild exercise and autoimmune protocol eating (currently re-introducing some foods with success). A lot of the symptoms have subsided with the lifestyle changes but my mouth is permanently dry as this damage is apparently generally irreversible. When I don’t do all the things that I wrote above work for me, I will start to get mild symptoms coming back and particularly joint soreness or muscle twitches at night as a first sign... it never lasts long because I get extra strict with my lifestyle right away again and feel better within a couple of days. I should also add I take autoimmune recommended supplements like probiotic, fish oil, zinc, high-dose vitamin D, magnesium, calcium, liver and I intermittent fast to keep my window of eating to eight hours as some research shows these things can help some people. Certainly certainly seems to help me and makes me feel like I have some control at least at this stage, not knowing the future. I know getting my inflammation down with lifestyle and also with my symptoms being relatively recent, within the last year, my chances of bloodwork showing anything were small. I’m due to see a Respirologist soon, but given that my months long lung issue has resolved it’ll probably be mainly aimed at baseline data in case lung issues ever comes back. The salivary glands seem to be the number one option for people having a difficult time getting diagnosed with Sjögren’s. I’ve heard a lot about ultrasounds but here in Ontario Canada I’m not sure whether they do it or not, but that is going to be what I pursue next with my rheumatologist, a salivary gland biopsy. I’m still nervous that it won’t prove anything because it’s early in my journey and there are clearly people with much worse cases of dry mouth but I think it’s worth a try as there are other potential health issues related to Sjogren’s and lungs especially during Covid so I think it’s important to diagnose for preventative purposes with your health as well. I would definitely investigate your salivary glands. Although I haven’t experienced it there are many people in these forums who have mentioned swelling and discomfort of the salivary glands.

The part I found particularly interesting was when you said you had blood tests done and your testosterone was high and you had insulin resistance. Those are two hallmarks of polycystic ovarian syndrome or PCOS which I also have. That’s typical blood work but in terms of clinical features some might experience difficulty maintaining their weight, acne, hirutism (Excess hair growth that might be more male/twatosterone based like on your chin or toes) and irregular periods... of course young women often get put on the pill to address irregular periods which masks many of these symptoms without actually addressing the important health issue. It used to be considered a fertility problem which it of course still is because it interferes with regular periods and ovulation with healthy eggs, but in the last decade they have come to understand how insulin resistance is actually at the origin of PCOS causing the hormonal disturbances and therefore fertility challenges (as well as miscarriage rates and ability to produce breastmilk). I am on a low-dose of Metformin which is traditionally a diabetic drug and after a year of useless fertility treatments, this little pill helped me have three children naturally because it corrected my insulin resistance and allowed my hormones to regulate normally so that I could have healthy eggs and healthy pregnancies. 15 years ago when I started with fertility, you had to really push and advocate to educate medical practitioners about insulin resistance, Metformin and PCOS… I suspect depending on where you live that still may be the case but there is an incredible wealth of information online to help women advocate. As I was researching autoimmune over the last six months, they are now starting to view PCOS as possibly being in the realm of autoimmune. I found that fascinating as someone with PCOS who is now experiencing autoimmune symptoms; my mom has PCOS and hypothyroid so again reinforcing this theme of autoimmune. Many women with PCOS have hypothyroid and so I’m starting to really find the topic of PCOS related to additional autoimmune disorders a fascinating one. I further found it fascinating that over the last six months I have seen three other cases of people with Sjögren’s and PCOS. There could be many more but it’s probably random for people to mention it in their posts – I would love to do a survey of women with Sjögren’s/or Sjogren’s symptoms to see how many have PCOS/or PCOS symptoms. So I guess I found it interesting that your blood work looks like a profile not uncommon in PCOS and might be worth investigating, for your own lifelong health and future fertility (if that is something of interest to you). Your post has continued my desire to explore the possible connections with these two diagnoses. Both diagnoses are exclusively or predominantly female and both are sadly ignored in research and very difficult to diagnose requiring much advocacy and research on the patient’s part. Sorry to write such a long post - I wish you nothing but the best in your journey and I think you’re on the right track to explore your salivary glands. What a great self-advocate at such a young age - huge respect and kudos to you. Keep pushing 💪

[Minnskimoo]

Hi PeachyBlossom,

So sorry to read about your debilitating and many symptoms. And so young too. 😏

What I find unusual about these two posts and what I am about to post is the fact that both yourself and AnnaMaeCat started with very similar symptoms around the same time as the dreaded virus was cranking up a notch in many countries.

Way back in January, I was still doing my job (I worked in an infant school ) many children and staff members became unwell with strep throat type symptoms, unusual rashes, vomiting and generally very much out of sorts. We had never known so many children be absent from school at one time, along with staff members too.

During that time I became unwell and had the same vomiting bug and a few weeks later developed a sore throat, dizziness, sinus problems and blocked ears. My mouth was like the desert and nose dry as a husk. My chest felt like I had pleurisy when I tried to breathe in so I was sent to A&E. I have asthma. I also lost a stone in weight and no matter what cannot seem to put any of that weight back on. I am now left with the inability to drive due to dizziness, I have a poor appetite, recurrent ulcers , (always suffered with these but they have become more prevalent and so much worse) dry, crusty nasal passages, joint pains (I already have a diagnosis of Behcet’s) but am awaiting bloods tests for Sjogren’s, Lupus MCTD possibilities. I have been having other problems for some time prior to this but, as my GP stated , ‘I think you might have had the CV19 virus - and what you are experiencing now is probably left over from this’. I don’t wish to be alarmist but just wondered if that had ever been a consideration?

Another work colleague who had the vomiting bug has also got unusual symptoms she never had prior to becoming unwell (at the same time as me). She is also a good 30 years younger and never really suffered a days illness up until that time.

Another consideration perhaps- thyroiditis or Epstein Barr Virus ?- My daughter had this at around your age during exam time. She used to experience what she called her ‘crocodile neck’ ( her glands below her ears would swell and the bumps resemble those of a crocodiles skin) although I would imagine you have been tested for these already? The fatigue and lethargy, perhaps post viral fatigue? Apologies if I am stating the obvious here.

I truly think you should pursue further. For my dry mouth I use Oralieve gel , toothpaste and mouthwash. I was also prescribed by oral medicine Flixonase nasules capsules. These are a steroid generally meant for the nose but are used for oral problems too. I have yet to receive these from the hospital as my surgery cannot prescribe this specific medication. I am also still on a low dose. of prednisolone for the Behçets.

Hoping you get some relief very soon and the help you deserve in resolving this unpleasant situation.

💐

[AnnaMaeCat in reply to Minnskimoo]

Thanks very much Minnskimoo. I have thought about covid and it is possible but when I look back I was having dry mouth/occasional swallowing issues, sore thumb knuckles, one blurry eye at night and dry brittle hair for the year leading up to my Jan/Feb storm of symptoms. That paired with where I live in Ontario Canada (not in a big city) makes me think the virus exposure chances would have been extremely low in Jan/Feb 2020. But it’s a good point and who knows if we’ll ever know. The covid long hauler symptoms have always looked autoimmune-like to me and yesterday’s news about the study showing how low vitamin D was found in 80% in hospitalized Covid patients seems to strengthen that potential connection.

[SusieW2]

So sorry to hear about your problems. Many of us have suffered the frustration of having doctors say that you're fine when you feel lousy and know that you're not fine. I would certainly follow-up with the hormone imbalance. It can affect so many other things. I had to find a Naturopathic MD to get the help I needed to feel better.

Have you looked at environment and diet? If not, what might be causing your inflammation? I did an elimination diet and found that gluten, high-acid foods and corn caused me to feel ill and tired and get sores in my mouth. I take Curcumin daily to reduce inflammation. Also there may be things in your home that contribute to the throat and cough issues. I have to run a humidifier at a high level to help clear out my sinuses and breath through my nose at night. Check for mold, standing water sources and try to avoid other toxic exposures.

There is a lot of information online about salivary gland and lymphatic drainage massage. You may have to keep up with these alternative treatments for several weeks to see results. Also try alternating warm compresses with cool ones.

Good luck. I hope you get some good help figuring things out and feel better soon.

[Minnskimoo]

Hi AnnaMaeCat

Hoping it didn’t sound like I was diagnosing? 😬Just a consideration as I have had problems prior with dry eyes, mouth. After being unwell with unknown illness at the time it did seem to crank up a notch .

You are right though and I totally agree the ‘Long Covid’ being very much a result of exposure to the virus leading to similar symptoms of autoimmunity.

Thank you for taking the time to reply.

Hope you are keeping safe - and as well as can be expected under these strange and exceptional circumstances.

💐

[Tally]

I have no idea but it sounds simply awful. I hope you get some answers soon. Take care please <3