Sjrogens TMJ and eating difficulties...

[swaylee]

Does anyone else have severe eating difficulties associated with this disease? I've been on a Pureed diet for 3 years now whereas the food has to be smooth and watery or full of gravy or sauces or a custard to help me swallow it down but even then I can still get thick sticky phlegm to cough back up. My mouth burns a lot and my teeth are getting really bad and sore also. It would be great to be able to talk to someone with similar problems to know I'm not alone as it's hard for my family & friends to understand.

[Megansheart]

Hello swaylee! So sorry to hear of your dreadful symptoms. Have you actually had tests to see what is causing each of them? Are you being treated for these symptoms and what specialists are overseeing your management?

In some ways my story has been similar. I was on a pureed diet for five years (from 2008-2013). It was tough adjusting to such a different way of eating. Fortunately my husband was incredibly understanding but yes I think beyond those who actually lived with me it was hard for them to grasp what was happening.

My mother had some idea as she was with me twice when out of the blue (once when I was driving) I just bought up about a cup of phlegm. Can you imagine the seat belt and the front of my clothes? Not nice at all!

Mine is a long story of testing, and diagnosis, then treatment and ongoing management until now where there has been a marked improvement and I can now eat 'almost' normally. So there is hope!

I am happy to share more but this is your question and you are going through it right now. So yes I do have some idea. It was the worst years of Sjögren's Syndrome that I have experienced to date, even though the neuropathy and pain etc isn't at all nice either.

We'll talk again!

[swaylee in reply to Megansheart]

Hello M. It is so good to hear that I'm not the only one (not that I wish this on anyone) as all of my doctors and specialists haven't had another patient like me. I've spent years and a lot of money on different things to see what will help, but not many things do. I've managed to control my anxiety issues when eating by myself even with doctors trying to force the whole antidepressants down my throat, I've been as natural as possible with high dose vitamins which have helped me more than anything. I see physio reguraly for muscle pain, I use coconut oil for the dryness of my skin. I've tried antibiotics, steroids, biotene products, etc, but nothing has worked to subside my symptoms. I find if I don't drink enough water or regularly then I cannot eat at all. I have monthly IV treatments with vitamins, which helps my energy levels. I don't sleep well and currently my teeth are suffering the most I've never had so much pain before. It doesn't help I have gum disease as well as TMJ. They are too sensitive to use my mouth guard. I've recently seen my oral specialist and dentist and they are trying to work out a better treatment plan. Some sort of antibacterial ointment to rub on my gums at night and crowns on my teeth, however this is very costly and I'm already in so much debt from paying for all the other treatments. There doesn't seem to be much help for people like us does there? What are the things that helped you most eat more?

[Beverly]

What has your doctor said? Has he done a full blood count? It sounds like you are seriously lacking in nutrition example zinc and magnesium, with your mouth I fixed mine with colloidal silver, swill it around your mouth before swallowing, I take a desert spoon of organic coconut oil each day and I take Black Seed Oil 2.5mls and I can eat anything now.

[swaylee in reply to Beverly]

Hi B, yes I have bloods done every 3 months. I'm lacking mostly in vitamin d, I have folic, k, vit c and b's and magnesium in my Iv treatments. I haven't tried the collidal silver or black seed oil though. I might see if I can find some and try it.

Do you have issues with your teeth? Are there better products for dryness aside from the biotene that you've tried?

[25clai in reply to Beverly]

I've googled black seed oil and am considering using it for symptoms, just wondered if anyone knows if it is safe to take when you have low blood pressure ( mine is mega low at times). I've read that it can lower high blood pressure, but my concern is whether this is something I need to consider. My GP and rheumy are anti supplements, but I would prefer to ditch some of the more traditional medicine if I could, as they all come with side effects in any case. If I ask them, they will tell me not to bother, but the health benefits are very appealing for me.

[Beverly in reply to 25clai]

My research says that it works on any defect you may have in the body so it should regulate your blood pressure in my case it has completely heald my immune system, my blood test are normal for the first time in my life and every day I notice something different is healed it's amazing stuff you can use it topically as well.

[25clai in reply to Beverly]

The idea of black seed oil regulating blood pressure appeals. I too have constant abnormal blood tests, which need monitoring . I am encouraged by your feedback Beverly.