Soulshine

I'm a coloratura soprano who hasn't been able to sing in over 2 years. That was my first symptom, passing out on stage or "panic attacks" on stage. They assumed at first my symptoms were stage fright.

The barometer drops and so do I...to the floor. Any change in weather makes me flare and I feel exactly like your son describes. The cold makes my muscles cramp and tense up and I have tremors from that. I dont know what to suggest other than trying to maintain a consistent body temperature. Going from hot to cold or cold to hot can induce syncope for me. If I'm somewhere climate controlled I still feel terrible, but at least I'll still be conscious.

Well, it is very rare to have sero-negative lupus but not impossible. Sero-neg Rheumatoid Arthritis is more common than SLE, but still pretty rare. In most cases where people present with symptoms before positive lab work, something will show up later on. Some lupus patients are ana-neg but diagnosed with lupus nephritis through a kidney biopsy. So just because you arent showing the AI markers doesnt mean it isnt doing damage to your organs yet. I'm assuming if you went to Duke they looked for the uncommon antibodies too. Also, Adult Onset Stills disease is something I've been tested for before my ANA's started popping consistently pos. It presents with daily fevers, urticaria-like hives, and joint pain. It doesnt show up on the normal AI work up...takes a little digging and a lot of ruling out to find. But if you have exhausted all ideas maybe its worth mentioning and looking into. I hope the knowledge fairies sprinkle smart dust all over your doctors Good luck getting some answers. Trying to diagnose my AI issues was/is harder than diagnosing my dysautonomia!

For me, sometimes they sink and sometimes they swim... I have been gluten free for years because I had a doctor tell me that going gluten free is beneficial to those with autoimmune problems regardless of the presence of celiac. Also because I was already loosely dx with IBS, it was a good enough assumption that I probably had issues with gluten. He gave me the option of being tested but I just went ahead and cut it out. Now when I eat gluten I get really sick and have problems with joints swelling and horrible bloating/overnight weight gain. There is no doubt in my mind now that I am gluten intolerant. I'm starting to think I have other intolerances that need to be tested for though. I still have way too many problems.

I was about to post a question like this last night! It happens to me after a raynaud's attack so my theory is that it is related to vasospasms somehow. Mine go from freezing and numb to tingling to red and ON FIRE. Sometimes my finger tips and cuticles will swell also. I have to run my hands under cold water. I hope someone can shed some light on this for us. Editing to add: Also sometimes I will have raynauds and whatever this is occurring on the same hand, at the same time. Like 3 fingers will be numb and blue, while the other two are burning and red. Anyone else?

My parents don't have health insurance as they both work for very small businesses. I had state insurance until I was 18 but I am no longer eligible for medicaid. They told me the only way I would qualify is to become pregnant. I am a junior in university so that wont be happening any time soon lol. I just have to hold myself together long enough to graduate and get a job so I can support myself! I was diagnosed with lupus "under the table." I had already ran out of insurance when they ran those tests and that particular doctor was very honest and told me I would never get insurance with lupus on my record. At that point my urine tests were clean so I agreed to the no treatment for now option. He did tell me to monitor symptoms because I would probably have a lot of problems with it "later on." I'm afraid that later on is now I really need to get back in to see him because he seemed genuinely concerned with my well being. I am just afraid that the consult will turn into months of testing and frustration that I just can't afford right now. Anyway, thank you so much for replying. I'm sure things will work out, because they always do. It is so nice to have a place where I can talk about this stuff and not feel crazy.

For the past year or so, it takes me at least an hour(and usually longer, unless I give up) to empty my bladder. Sometimes I don't have time to just chill out on the toilet so I am usually walking around with a full/semi-full bladder. It is really uncomfortable and I am constantly bloated and my hands swell. Sometimes I don't even get the urge to pee but I can feel the pressure and sometimes pain. Is this a pots thing? I have a hard time getting my doctors to really listen to me. I cant afford to travel and see a dysautonomia specialist at this time. I have a primary who believes dysauto and fibro are the same things and a cardiologist who thinks that I should be able to "push through" pots symptoms since they are not "dangerous." I have mentioned this to my doctor and he keeps telling me to drink cranberry juice. I am starting to get nervous because I have tested high on the ANA test, and was unofficially diagnosed with Lupus. Due to insurance issues, I have been untreated for two years just barely managing on life style changes. I know lupus causes kidney disease in some patients. I plan on seeing the rheumatologist who ran those tests, but even that will have to wait until I can afford it. I was just wondering if this is a POTs thing, though. Maybe it would put my mind at ease to know that I am not alone. Not knowing makes me panic. I'm only 21 if this helps. My age is why no one really takes me seriously.

I have issues with this but I always thought it was a depth perception or vertigo thing. I cannot walk a straight line to save my life. My biggest fear is ever having to pass a sobriety test, because I KNOW I will fail. I also will reach to open a door a few feet before I am actually there, or not pull up far enough to a stop light. Playing catch? Forget it. I used to be a center fielder and now I have no idea where the ball is until it lands. My lack of coordination is what I consider to be the hardest thing to deal with in my pots experience. Anyone ever feel like the earth is "tilted" or leaning a certain direction? Like sometimes I feel like I am being pulled to the left or right, and maintaining balance is impossible. The being on an incline sensation is so very trippy.

Definitely! The funny thing is that it usually seems like I'm really truckin' it until I come back to reality and see everyone else zooming by me. I usually tell people that I'm not in any hurry and they should stop and smell the roses themselves sometime lol. Only if they say something to me first though, of course.