Nymph

I have a bald spot in the middle of my tongue where the tastebuds have fallen out. Geographic tongue, glossitis, burning mouth syndrome, etc can have a number of different causes, including nutritional deficiencies and neuropathy. I don't know yet what is causing mine, only that it's not a nutritional deficiency. Have all of your deficiencies been addressed? That might clear up your tongue. No idea about the urine thing.

Hi Mike,

Have you been screened for celiac disease? Just a thought triggered by your nutritional deficiencies. Celiac can have a very wide range of symptoms. It can also cause nervous system problems.

I hope you find the answers you are looking for.

Yes, I agree that there is a third way. There are times to tough it out, and there are times to ask for a treatment review. There are times to push through and times to rest. There are times (and people) to ask for help and times to figure out how to do it yourself. There are times to be angry, but many more times to be thankful. I think it's very important not to become isolated, but one has to experiment and choose wisely as to who those people are who are truly friends.

Heather, that's awesome! I'm so happy for you. Thanks for sharing, too. It's very encouraging. As someone who thought all of my fatigue was autoimmune, and then learned some might be from POTS and that maybe exercise can help, your story is really an inspiration.

Thanks, Ramakentesh and Fried Brain. That is very helpful. I just found out yesterday that my best friend has Hashimoto's. At the moment I'm mad about how many people I know with autoimmunity. I'm tired of it stealing from me!

I just got a free rowing machine! I am hoping that helps, as I have heard that exercise can make a big difference. Other than that, I am thinking of starting methotrexate. We shall see what happens with that.

Gosh, no wonder I'm so tired!

No, at first I thought it was oral allergy syndrome, which can have a similar effect, however that disappears once you stop eating the food. Mine did not. And as it comes and goes and varies in severity, I do not think that its a medication as my medications are consistent. There is some research indicating thay the syndrome might be caused by trigeminal neuropathy. As that's the most common form of neuropathy in Sjogren's, I think that's probably it. However, I am waiting to see a neuro until I am tested for POTS by a cardiologist. Once I have some evidence in hand, as it were, I will look into possible neuropathy as a cause for both syndromes.

So, I tried out ALA for two weeks or so for my burning tongue issue that might be neuropathic in nature. My tongue was only getting worse, and the ALA made me smell bad, so I quit taking it.

Hi Anoj. Do you know if your hashimotos is related to your dysautonomia? Which started first?

Is it the one called POTS + Sjogren's?

Awesome, Foggy, thanks!

Natops, I've been on Plaquenil for two years. My only side effects at the beginning were bad gas and crazy, vivid dreams. The gas stopped once I stopped taking them with food. The dreams went away on their own after awhile. I am thinking about cutting back my dose now because of the risk of retinal toxicity over time. I'm on a pretty big dose for my size.

Yes! Plaquenil has helped me a lot. It helped with general fatigue. I think that's getting somewhat worse again but I think that's autonomic. It helped a TON with joint pain. I still flare occasionally but in between I have very little joint pain. It's totally worth it for me.

Why do you ask?

I am in the process of being evaluated for POTS. I have probable Sjogren's - highly probable, I would say. I have specific antibodies for RA, too. So far my arthritis symptoms have been transitory, thankfully, and no x-ray damage yet.

I wonder, in Sjogren's particularly, or in whatever you have, is POTS caused by small fiber neuropathy due to autoimmune activity? If so, can it be treated with biologicals or other DMARDs? (I'm on Plaquenil. Pretty sure that doesn't do squat for neuropathy.) I am seeing my rheumy in November. I should have my POTS workup done by then. I want to be prepared to bring this up with her. Please share your experiences and knowledge!

Thanks! That's kinda what I was thinking.

I saw my primary doc yesterday, brought him all my data and POTS info. He did an EKG and then said he wants me to be evaluated for POTS. He's sending me to a local cardiologist. That cardiology group has a tilt table and are generally well recommended, although I don't know much about this particular doc. He is old (60s).

So far the other recommendations (from POTS and Sjogren's patients) are a local neurologist, and several cardiologists in other parts of the state. It would be a big trip for me to go to them (I don't travel well), and I am now in the middle of a very busy semester of grad school.

So, should I see the unknown cardiologist (I already have an appointment), the recommended local neurologist (who may or may not be very knowledgable of POTS, the person didn't seem sure), or insist on traveling?

My dad (neurologist) just told me to take ALA. I took the first dose this morning. It will probably take awhile to see the effects. If I remember I'll let you know in a couple of weeks. Otherwise remind me. I am not yet diagnosed with dysautonomia but have a probable trigeminal neuropathy of the mouth and tongue. That should be the easiest way to see an effect.

Thanks so much for the welcome, everyone!

I am more convinced today that I have some sort of dysautonomia. I wasn't feeling well today, just heavy, especially my legs. Since I had a three-hour night class tonight with an hour drive each way I decided to wear some compression hose. (I got them a couple of years ago for preventing DVT on long flights.) As soon as I put on the hose, I felt like a knew person. There was actually a spring in my step! I cannot believe that I am excited about compression hose. O, the irony!

Yes, MomtoGiuliana, over at the Sjogren's forum I frequent there's often talk of autonomic and other neuropathies. For myself, I wonder if mine is autoimmune or another cause, since it seems like it started a long time ago... just worse with the autoimmunity.

Thanks, lejones. I'm in the mountains. I'll send you a message, if I can figure that out.

Thanks, Krissy! I live in NC. I think that Vanderbilt is the closest place. I guess I will try to bring all this to my primary doc first.

Hi everyone.

I'm new here. I'm 35, female, and a full time grad student.

About 5 years ago, I began experiencing distressing symptoms, one after the other: carpal tunnel, blurry vision, joint pains in knees and feet (later everywhere), dry eyes, dry nose/throat, anxiety attacks, spaciness, lightheadedness (or shall I say heavy-headedness? Sometimes I just want to put my head on the table).

Two years ago, after slews of tests, my rheumatologist seemed split between RA and Sjogren's Syndrome. I am being treated (same drug either way), but still no definitive Dx. My joint pain has significantly decreased on the medication.

I think that it's likely I have Sjogren's. Hoping to never have RA. However, some symptoms predate my Sjogren's symptoms, and some are not well explained by Sjogren's, unless perhaps I have autonomic involvement. Here they are:

• Hot flashes at night since I was a teen. (I'm 35 now.) I would get up and sponge myself down in the middle of the night to cool off.

• I've always gotten dizzy if I stand with my arms above my head, such as getting things off the top shelf, painting, writing on a tall white board (I'm 5'2"), etc.

• In my early twenties I developed severe gastric pain. Ten years later I deicovered that was due to a gluten intolerance. I still have some problems with reflux, however, and occasional diarrhea that I can't trace to gluten.

• Also in my early twenties, I began to get car sick when I drive distances. Anything over about 1 1/2 hours and I start to get sick. My stomach is like a rock and my head spins. My eyes also blur and go out of focus. Sometimes the eye thing has happened apart from carsickness.

• I have slightly hypermobile joints.

• Sometimes when I get up in the night I lose my balance. I've always caught myself but it's a bit concerning.

• BP usually runs about 90/60 or slightly lower when I feel bad, 110/70 when I feel more normal. I do not usually have orthostatic hypotension, although I have caught a drop a couple of times. My pulse does not rise 30 points lying to standing, but it does at times go over 120 bpm at the 5-10 minute mark. Since it is inconsistent, sometimes perfectly normal, I am trying to gather enough data.

• Several times after a night out, but no more than my usual 1 drink, I have had an incredible heartbeat like a drum that shakes my whole body, lying down, and keeps me awake.

• Sometimes my heart races and feel like a fluttering or strumming pressure in my chest, like a panic attack, but I am not thinking anxious thoughts. This does seem to coincide with my menstrual cycle. My lowest BPs are also during and after my period.

• If I get dehydrated, even a tiny bit, I feel like I'm going to collapse. You can find me squatting in line at the grocery store sometimes, pretending to examine the tabloid headlines.
• When I exercise lately I often feel like someone is pulling me down by the ankles into the ground. I've ruled out iron, folate, and B12 anemia.

​I would really appreciate your advice and input. I am so tired of doctors. The last thing I want is another specialist. But I also want to try my best to feel as good as possible so I can live my life. I will see my primary and my rheumamtologist over the next couple of months. I would really appreciate advice for those visits.