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Fibromyalgia and possibly Sjogren's

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Sjogren's Syndrome
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Posted 8/30/2014 2:27 PM (GMT -5)
Im at a loss.

Let me give you a brief background. In December of 2013 I woke up one day feeling "off" weeks later I was so exhausted and had widespread body pain. Finally they tested me and I came back positive for Mono. In February I finally tested negative however I was still having widespread body pain plus several other symptoms (brain fog, dizziness, hand tremors.. etc) They put me in the hospital and ran EVERY blood test they could, MRIs, CatScans, I even had a spinal tap. NOTHING came back. Finally they told me I had Fibromyalgia. We already thought it was Fibro based on the symptoms but we wanted to be 100% sure it was nothing else before we diagnosed fibro.

I got better for about 3 months. The pain was gone and the other symptoms weren't too bad.

THEN

3 weeks ago I woke up with my mouth burning/tingling. I thought it was weird but didn't worry too much. Now my mouth constantly burns/tingles, my mouth is dry, and periodically my skin burns like a bad sun burn. I went back to the doctor who ran all the auto immune tests again as well as did another MRI... NOTHING! NOTHING NOTHING NOTHING!!!!!!

They are saying they think its Fibro and Possibly Sjogren's (Even though all my tests come back negative, I do have Erythema Nodosium and they say you do not have that without having an auto immune disease so they just think the tests are not correct)

The thing is I can not find anyone with Sjogren's who have these exact symptoms (the burning). Has anyone experienced this?

Thank you for all the advice HUGS!
Posted 9/2/2014 2:15 PM (GMT -5)
Hi Mandi Jayne. I'm so sorry that you've been through so much. Unfortunately some autoimmune diseases take months to years to reach a diagnosis. I have fibromyalgia (plus Systemic Lupus, Sjogren's, and Raynaud's) and know how painful and exhausting fibro can be. I've never experienced burning in my mouth, just lots of dryness. I hope someone else will answer who can help you and I that you get a diagnosis soon. Not knowing is just added stress. Try to stay calm and be patient (if that's possible). Love, Butterflake
Posted 9/9/2014 6:00 PM (GMT -5)
Mandi Jayne:
I was just recently diagnosed with Sjogren's. I've had unbelievably bad "burning mouth syndrome" for over a year now. I'm told it's related to the Sjogren's.

Also, I had a really bad case of oral thrush and systemic candida overgrowth with leaky gut syndrome. It was horrible and unbearable until I got the candida overgrowth cleared out and the leaky gut syndrome somewhat healed.

And, it all started with a simple virus turned into a sinus infection...and wow .. the flood gates flew open with all sorts of health fun--NOT!

Good luck on your journey to finding a proper diagnosis and treatment.
Posted 9/11/2014 9:14 AM (GMT -5)
Mandi Jane, maybe you are having some sort of inflammation near or around one of your cranial nerves? Just a thought. I too get burning and soreness in my mouth. I get reoccurring blisters and sores, especially when my body is going through some sort of stress: poor sleep, and/or diet, besides emotional stress. The burning and soreness goes beyond the mouth for me. I feel it in my sinus cavity, nose and throat as well. This symptom is what brought me to an infectious disease doctor who had me get a series of blood work done. Antibodies for Hoshimotto was found. This in turn led me to an endocrinologist. I ended up having half of my thyroid removed about 2 years ago. I take Synthroid every day. I have had a bad bout of autoimmune related issues for about 6 or more years. I finally feel like I'm out of the fog and more like my old self. Some of the things I've been doing is taking a lot of probiotics, eating cherries (and other fruit) and taking vitamin D3 (under doctor's care) every day. I really believe the gut has a lot to do with autoimmune issues and the probiotics is a solution. I also do saline lavage three times a day. I believe the salt water fights the dryness, removes the viscous mucus, and fights the secondary woes of Sjogrens. Mouth hygiene is very important.

Post Edited (ElainefromMJ) : 9/11/2014 8:18:25 AM (GMT-6)

Posted 9/14/2014 2:08 AM (GMT -5)
Mandi Jane, I am sorry to hear you have been -and are still going, through such a hard time. My diagnosis for Sjogrens, Lupus, PMR, Giant cell arteritis and Fibromyalgia have taken place over a numer of years from fourteen years ago. It is a long frustrating process for these symptoms to be given a 'label' and I totally empathyse with how you are feeling. I do know what you mean about the 'burning mouth' symptoms associated with Sjogrens and have experienced much of what you have mentioned. I did some research into alternative natural medications and found that Bovine Colostrum has helped many of my Sjogren symptoms and therefore have been taking it long term just to keep going. It also helps me to cope with the effects of long term steroid use which i am forced to endure owing to having Giant cell Arteritis. It takes a couple of weeks to really get into the system but it is worth the wait. It helps with the general fatigue, the pain levels, and all the unpleasant dry, burning sensations in the mouth and eyes. It is not a miracle cure but brings noticalble relief to many that I have read about, and myself.

Hoping this is of some help to you.
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