Disease Onset

[Lemons2lemonade]

Also if you could share your first revealing symptom that something was off, that would be great Mine was visual disturbances and a weird sensory feeling.

[sue1234]

I had stomach bloating for 12 years. Then, 6 years later, I developed slight lightheadedness with tachycardia for about six months, but compensating by not stopping moving. As long as I was walking, I was okay. Then one day outright lightheadedness with standing that no walking could cure. In fact, walking made it all worse. And, it's been with me for 6 years.

[Dizzysillyak]

Mine started out of the blue with a bug that led to chronic uti's, uri's and too many neuro symptoms to list.

I was diagnosed with me/cfs/fm/oi tho.

I don't remember any gastric problems in the beginning but had periods of gastroparesis for weeks at a time off and on.

And I was grey and yellow several times over the years .. I just drank ensure and ate bread for a week or so, then I went back to a reg sad (standard american diet)

for 15 1/2 years until one day I couldn't eat gluten anymore without it going right thru me.

I had ataxia so it didn't matter that I had oi cause I fell over all the time. I would never have figured out the symptoms of oi if I still had ataxia. The first pmttt I remember was 2 years

post illness onset.

I'm assuming some others started this way, post bug, too .. Tc .. D

[jenglynn]

I didn't vote because none really applied to me... so I will describe mine. I have pretty much ALWAYS had symptoms and never remember not feeling this way. But I will go based on this flare which began last April- almost a year ago. Many symptoms began all at once: fatigue, tachycardia, syncope, dizziness and shortness of breath. I am assuming with the syncope I had some orthostatic hypotension but I didn't know at the time. I gradually got worse and worse- and by November I was having syncope almost every time I stood up, extreme hypotensive, some organ failure, tachycardia, along with the fatigue and shortness of breath, adrenal surges, cognitive issues but I am not sure if it is autonomic related or concusssion related (have had 10 now) and many more things that I am sure I am leaving out.

I am one of the VERY lucky ones who does not have GI issues... and for that I am so grateful. The only "GI" symptoms I have is just that I have very little appetite, as in none, so I don't suffer too much with this unless you count early satiety (3 or 4 bites of just about anything makes me feel and may make me feel a little nauseous). I really feel for you all who suffer with the tummy problems. It must be miserable.

Jen

[Christy_D]

My son had frequent stomach aches, abdominal pain and vomiting starting in the 5th grade. He missed 20 days that school year. He repeated that again in the 6th grade. The seventh grade, migraines started, heavy head, weak legs,etc...plus he missed 30 days that year. Half way through his 8th grade year, he was unable to continue going to school. He is now a junior in high school and is not attending a brick and mortar school.

The one constant symtpom from the beginning til now is always nausea.

Christy

[hholmes13]

I wasn't sure how to answer the poll questions so I thought I'd post down here. My symptoms literally came on overnight. At the time, I was training for a half marathon and working out 5-6 days a week. I did have a weird spell of dizziness/nausea a year before my symptoms come on that lasted for 2 weeks then subsided. I had also had occasional syncope in my teen years. Anyway, last April 4th was when it really started. I woke up in the middle of the night so dizzy that I threw up every 15 minutes for about 5 hours. I could barely walk between the bathroom and couch. After that it just continued to progress. I started fainting and having pre-syncope episodes. I had constant nausea and could barely eat. I was completely exhausted no matter how much I slept. Over the course of the next month or so, I started getting chest pain/palpitations. A few weeks later I started getting tachycardia that would only go away with lying down. I have no clue what brought this on. I've always been prone to fainting/dizzy spells, but I would feel sick and then after a few hours recover. Thinking back I did donate blood about 6 weeks before my symptoms came on (almost fainted during that!)...wonder if that pushed me over the edge? I'm just still completely baffled how I could go from in great shape and totally healthy to where I went overnight. I didn't have any viruses or anything near that time.

Heather

[potsyturvy]

My POTS symptoms started after a year of misdiagnosed Strep. I had fatigue as my first symptom, then sinus infections/allergies and GI issues. I've had tachycardia pretty much my whole life, but just didn't know it was abnormal. Four years ago, it started getting really bad when I was working a job where I had to stand for 10 hour shifts outside in 100* weather. I thought I was just having issues with low blood sugar and severe allergies. I always knew I had trouble standing for long periods of time (and I'd often shake uncontrollably while standing, but I just thought it was nerves or something) but I didn't attribute my symptoms to it. My doctors were suspecting Lupus or early MS and I kept testing negative for both, so I searched online for things that had similar symptoms to those disorders, and found some information about POTS. It totally shocked me when I first tried a poor man's tilt on myself and found that my hr increased by 60+ bpm!

[ramakentesh]

Before I got POTS I had reoccuring IBS sometimes from the very mildest thing and then I started getting weird migraine type stuff and vitreous floaters.

I had this visual snow that no one could explain. I had from about 2000 and I didnt develop POTS until October 2003 out of the blue.

[julieph85]

I developed severe IBS for about 9 months, got put on bed rest for pre term labor for 14 weeks and when I got up at the end of the bed rest I had severe tachy, dizziness, shortness of breath, and chest pain when standing. I have had all this ever since and it has been 2 1/2 years

[brethor9]

I started by having short dizzy spells and crashing fatigue which eventually developed into crippling head pressure, constant lightheadedness,etc, at first it was thought I was having spinal leaks or possibly MS

[jackiemxoxo]

Mine started with tachycardia for about 2 weeks and then the gastric symptoms started until it went to gastroparesis. I did not know they were related at the time but then other symptoms started happening (no sweating, big pupils, trouble breathing, etc) and a doctor put the pieces together. I have gotten better.

[forevertired]

I am not sure if my cognitive issues started before or at the same time as my gastric issues. I have had cognitive issues since I was a child but that was always blamed on depression. The cognitive issues got worse when I started college, even though my depression was under control. Around that same time, I started having stomach/bowel problems, chronic pain, and chronic fatigue. Shortly after that I started having chest pain and shortness of breath. The chest pain and shortness of breath only happened a couple times a year, whereas the fatigue, muscular pain, cognitive issues and gastro problems were constant year round. Now I experience chest pain and breathing issues every day.