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Robert J

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About Robert J

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  1. Hi, P, thanks for the empathetic and comforting message! I’m sure you know when you have this disorder it’s a lonely place. Everyone has written me off as a nut who seems to have a new diagnosis every month and a new symptom de jure each morning. Just hard to predict or plan anything. It’s been tremendously impactful. My doctor is great and I’m sort of progressing along. Thankful to have this forum to share, learn, and listen.
  2. In preparing for an appointment with my PCP I came to realize I have a triangle of triggers for my Dysautonomia: STRESS -FATIGUE - OVER-STIMULATION When I experience too much of any one of these things I can be bedridden but when all three create are in force it is, what I call a Trigger Triangle. The significance for me is it explains a pattern in my life of falling apart just when I’m on the verge of success. My doctoral degree - 3 tries but as the demands climbed, the stress increased, and that trips my senses into maximum overdrive... you get the picture. But I no longer look at myself as a loser who just bails when things get tough. Lots of self- forgiveness here. Anyone else have similar feelings?
  3. I seem to have some sort of dystrophy that comes in in “bouts.” I have two distinct symptoms that can strike separately or together. The first is on overall neuromuscular weakness - not weakness such as I can’t do the neurological resistance test but it’s sooo difficult and just a little activity makes me tired and sore. The second is a kind is slow motion seizure where various muscle groups tense up. I can focus and use mindfulness to focus on a muscle group and get it to relax but no sooner do I get it to release, another muscle group tightened up. Sometimes it is difficult to describe what is happening and I need to observe symptoms so I can accurately report them. As with most weird symptoms, I inevitably find another patients account of something similar.
  4. Although I’ve been sick for some time, my Dr just recently diagnosed me so I’m new at this. Do most people with COPS need IV fluids? I go to an infusion center where I sit next to patients in treatment for cancer, etc. at first I felt silly being here with my little bag of hydration- I’m not “really” sick. Yet, if I go more than 4-5 days without I end up in the ER getting pumped full of fluids.
  5. In terms of fluids, I presently get 1 liter of standard sodium chloride IV 4 days a week run over 3 hours. My doctor added some potassium and many of my symptoms resolved however my problem is more with dehydration. Oral hydration just doesn’t work no matter how much I drink. Doc says it has something to do with vascular pressure and IV fluids help correct that. If I miss even a day I feel it. I also take fludrocortisone to try to help me hang onto some sodium which helps with fluid retention. So fluid sensitivity seems part and parcel of this disorder but the key for me was stabilizing the vascular pressure.
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