"Overwhelmed Nervous System"

cmc674cmc674 Member New Member
Hello, 

I am a 28 year old woman from NYC. I have had hypertension since 2010. I have been suffering from mild-to-moderate mixed connective tissue disease MCTD (Lupus and Sjogren's type symptoms with some periodic digestive issues) since 2009, formally diagnosed with SLE in 2011 and with my current rheumatologist since 2015 (he is a godsend). My main symptoms are severe joint pain, chronic fatigue, headaches, difficulty concentrating, dry eyes and, more recently, severe GERD. Before plaquenil, I also suffered from some skin issues and raynaud's. I also now blister in the sun, something I never experienced before age 22. While I am formally diagnosed with MCTD, I do not have the typical antibodies for SLE or Sjogren's, only a very elevated c-reactive protein when not on medication. Plaquenil has greatly improved my quality of life since 2015.   

My symptoms have been relatively steady over the years, especially since going on plaquenil. I do get periodic flare-ups (with the symptoms above worsening) but no worse than before I started to see my current rheumatologist. I had one episode, in the fall of 2017 wherein my right arm from the elbow down decided to stop working and was extremely painful; this resolved after a two week course of prednisone and keeping it in a brace for a month. It has never returned since. Finger crossed, as I am right-handed.  

I am including the history above to shed light on the fact that I am not a "typical" Lupus case, then again, who is?

I am posting here to share my more recent issues.  Since this past fall (2018), I have been experiencing new and much scarier symptoms including episodes of: severe nausea, sometimes vomiting, palpitations, chest pain, sweating, trouble breathing (due to the pain), and a feeling of panic. After these episodes, I feel whipped out. Along side these "episodes" I have been also experiencing severe GERD and some trouble swallowing dryer foods.The episodes have been so scary I have been to the ER several times, one of which was during an appointment to have an echocardiogram to see if the symptoms are cardiac in etiology. In that instance, I was already at the hospital so my blood pressure and pulse were taken during the height of the episode. My blood pressure was 115/200 and my pulse was 150 - both very high for me as I have a low resting heart rate and my blood pressure is well controlled on enalapril. The ER watched me for a few hours, and found no sign of emergency. Normal EKG, normal heart rhythm, normal echocardiogram. They gave me fluids and my blood pressure went back to normal over time.       

So far, no doctors have answers for me as to why this is happening. My rheumatologist does not feel this is related to my MCTD. My primary care doctor is stumped. The cardiologist saw no issues and told me I have an "overwhelmed nervous system" which feels like code for me feeling "too stressed." I work in mental health and fully acknowledge that these symptoms do sound like panic disorder and, yet, I have no history of anxiety and no extenuating life circumstance that I feel would have triggered this. I have been journaling about what I eat and when symptoms and can find no pattern as of yet. 

Has anyone had symptoms like these? Has anyone been told that they have an "overwhelmed nervous system?" Has anyone developed a panic disorder with their SLE? Any suggestion of other types of doctors to see? Any signs of solidarity? 

Thank you for letting me speak my truth and for all of your support.  <3

Comments

  • CarolapgCarolapg Member New Member
    Hi. It happens to me and its like an episode. I have SLE, Sjogren and Hashimoto. All that symptoms happend to me, all in one period like for 3 month( thats when I was dignosed). Sjogren make that swallowing dryness and couple times I tought I was going to die cause I couldnt breath with severe coughing by the time I was eating. Nauseas, stomach pain, vomiting. Chest pain most when I was sleeping that made me wake up. Asthma atacks more frecuently than ever. Lost memory, forgetting basic things, insomnio, nightmares. Yes it happens. But good things is that all that symptoms desappeared once I started the treatment: 3 month of prednisone 5mg. Plaquenil twice a day. Vitamin D3 alone not with calcio( helpfull with the memory problems) and Clopidogel(I make allergy to aspirin) once a day(help with the chest pain) and a goof diet: NO gluten. NO sugar. Drink a lot of water and green juice in the morning. I know its scary but once you understand that you can control a lot of things of this diseases if you change some habits you’ll realize that you are stronger than this. Don’t feel alone. I went by almost the same just noy the Hipertention.  Hope you feel better.
  • cmc674cmc674 Member New Member
    Update. I was diagnosed this week with POTS (postural orthostatic tachycardic syndrome) - all of my new symptoms above are in line with this. Doctor suggested I double my fluid intake, do lower body resistance training and lose some weight. I hope this post helps others with these symptoms. Diagnosis doctor is a cardiologist. 
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