I have been diagnosed with Dysautonomia and POTS.
I was very happy to get the diagnosis after 8 years of weakness and dizziness
I wake up every day with a dry mouth, often burning dry mouth. After I drink, there is some improvement, but my mouth is always very dry. It makes it difficult to talk, and to eat. My appetite is way down (although I'm not losing weight now), and when I do eat or drink, I find everything tastes to string. I dilute my drinks and soups with lots of water,and I barely eat. Is this part of the dysautonomia, or should I be looking for something else as well. I am very weak as well, getting up from a seat or bed is extremely difficult.
This is a tricky question. Some people with dysautonomia do just get dry mouth for no apparent reason ("idiopathic"), and may have other dryness issues as well such as dry eyes, and dryness of their reproductive organs. However, in some people with dysautonomia, "sicca" or dryness of the mucous membranes and eyes, is caused by side effects of their medications. In a minority of dysautonomia patients, sicca is caused by Sjogren's disease, an autoimmune disease that can cause dysautonomia.
To be thorough, it is good for any dysautonomia patient suffering symptoms of dry mouth and/or dry eyes to discuss the possibility of Sjogren's with their doctors. Unfortunately, the only surefire test for Sjogren's is a lip biopsy which is invasive. In order to avoid subjecting people to unnecessary procedures, your doctors can carefully evaluate your case in particular to decide if this testing is worth doing or not. For what it's worth, I had the lip biopsy, and it's not *that* bad. It does swell a LOT and it is sore for the next few days, but it's not as bad as I was afraid of and it did give me the peace of mind of a definite answer.
Thanks so much for your answer. I had blood work for antibodies which did not show any problems, so my doc ruled out Sjorgens.
In your opinion - is it important to know if I have Sjorgen's or not? Is there specific treatment if it is Sjorgens. I'm asking because last week my GP told me that it doesn't matter if it's Sjorgens or not. He said Sjorgen's is just describing the dry mouth. I would love to hear your advice about that.
I don't think the dryness is a side effect of meds because I only recently started ritalin and midodrine, and I have had a terrible dry burning mouth on waking for a long time before that. I have been on Minesse(low dose birth control) for a while -
Please have a THOROUGH work-up done. Including a dental exam. I just found out that I have oral cancer. It caused paraneoplastic syndrome, which is a type of dysautonomia that happens when your body starts fighting cancer, infection, or even a smaller issue. Sometimes we wake up with neck pain and think it's just 'sleeping funny' when it could be a pinched nerve causing it. I'm not trying to worry you about cancer or anything. I have MSA which I blame myself for because I didn't visit the dentist enough. If I could have caught it sooner, I could have spared myself a lot of grief.
Keep vigilant about your health. I can't stand up for more than 5 minutes anymore, so I do all my workouts lying down in bed. The endorphin rush of a good workout help my well-being more than anything. If you enjoy cooking or gardening, set up a stool that allows you to sit down with your feet up in order to enjoy the hobbies that are now difficult.
It's all about you to keep yourself comfy and happy! Don't rely on dr's diagnoses. Midodrine helps with retaining fluids, but otherwise keep up with therapists and support groups that encourage you to be a happier person. This disease is terrible. Worse than the little cheek carcinoma that went into remission quite easily.
Feel free to vent, kick, scream, and cry, then focus on people who are encouraging you instead of joining the pity-party. We know what you're going through and are here to be a source of venting, however, it's up to you to overcome it by positive reinforcement and happiness. It is attainable, no matter how crappy you feel ;)
Thanks for you lovely response. It's all so confusing, but it's great having support - even the virtual kind. Thanks for the advice about cooking. I have not been able to cook in a long time, and I really miss it.
Blood work alone cannot rule out Sjogren's, first of all. Only the lip biopsy is a definitive test for Sjogren's. Secondly, Sjogren's is an autoimmune disease that can affect multiple organ systems, it is WAY more complex than just dry mouth; I'm sorry but your physician either misspoke or is terribly misinformed! If you can't get this doctor to take Sjogren's seriously, I recommend seeking a second opinion with someone who has more expertise in the matter.
Here's the Sjogren's Foundation, where you can find information to share with your physician about why this is important:
From their website:
"Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.
With upwards of 4,000,000 Americans suffering from Sjögren’s, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.
About half of the time Sjögren’s occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma."
You really need a physician who is well-educated on the various causes of dysautonomia, such as autoimmune diseases like Sjogren's, to help you tease out what's going on at this point. Many dysautonomia patients find that they have to change doctors one or more times to get the right fit before they can find their POTS cause.
I just wanted to take a moment to comment on something you said as well. Do not feel guilty or regretful as if something you did or didn't do caused you to have MSA. Multiple System Atrophy is not something that could be cured if caught sooner. There is no cure for MSA, and I'm sorry if a doctor told you otherwise or made it sound like you did something wrong! I'm also terribly sorry to hear that you've been diagnosed with MSA and I hope that you are comfortable reaching out for support here.
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