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lissy

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About lissy

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    Advanced Member
  • Birthday 10/16/1978

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  • Gender
    Female
  • Location
    Indiana

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  1. I've had symptoms since teenage years got severe 6 1/2 years ago age 29, it was the worse the first 3 years and gradually started improving. My blood pressure is mostly low normal now and the fatigue has never changed...I learned to fight through alot of my symptoms, having to raise children and taking care of them cannot be but on hold so I push myself alot! Which in return puts me in the bed any chance I get. It's a vicious cycle...I've also learned to get negative stressful situations and people out of my environment it seemed to hinder any chance at natural healing within, and it made me sicker. I'd rather wear myself out physically than mentally because mentally tired is just too hard to deal with. I seen over 50 doctors throughout the 6 1/2 years, when one doctor doesn't listen or acknowledge your complaint find a new one. I've had doctors completely ignore major pains and symptoms and wouldn't be here today if I didn't trust my instincts! And try your best to not let medical stuff consume your entire life. Have a sick-free time where you focus on any and everything other than sickness, we need that normalacy mixed in. Sorry if I said too much:) it's been awhile since I've been on the site.
  2. I actually asked some random doctors( not my physicians) about Pots causing elevated cortisol and they said "no, two separate issues".So I don't know if there is a article from a POTS specialist that can correlate this ? I know alot of doctors that would rather just treat POTS and not seek a cause, they may even look over clues as in; abnormal blood work. But just my observation.... I took my test lastnight along with some more bloodwork this morning so I should be getting results later in the week. It was really bizarre my gyno that did my surgery(hysterectomy) 2 years ago had me come in for my 2 year follow-up, I brought my labs because I really trust her opinion, and she looked at me and said I had something adrenal going on.... I honestly think I was not diagnosed properly along time ago, and my POTS is caused from another condition.But It really concerns me if I do find out it was cushings or another condition would POTS go away with treatment? My head is just spinning in possibilities. I will definitely kept everyone posted!!! I believe it's truly important to spread the word if we aren't getting properly tested like with the elevated cortisol, it should be looked into.
  3. My a.m cortisol serum was 26 ug( reference range is 6.2-19.4ug) prolactin has been 31 and 27.8 (reference range 3.34-26.72ng ) I take no meds and thyroid tests have been normal. I went to take my midnight saliva test lastnight and found out the local lab doesn't even carry the test!!!! So now I have to drive a hour away to a hospital that has the kits and they send it to Mayo. So I'm going to do the test tonight and take it back tommorrow results back Wednesday. Ehhhh alot of work for this little test!
  4. Drinking ice cold water, laying down, putting on a fan, cold wash cloth around my neck, cold water on wrists. Sitting 85-90 Standing 120-140
  5. Hello all, Haven't been here in awhile..just been trying my best to accept my limitations and move forward. I recently seen a new endocrinologist and she's looking into my elevated cortisol more deeply. Ever since my illness began elevated cortisol has always been there and all the past doctors dismissed it. Well I currently have high cortisol and elevated prolactin. .and if any remember my posts from the past I was underweight never able to get over 100lbs, well I'm up to 110 and its all abdominal. So besides a few posts I found through searching I'd like to know from my old friends is there any connection with cushings and pots? Taking my midnight saliva in a few hours;) hoping to be able to stop my search for a cause! Take care.
  6. Hello I personally believe they go hand and hand, I'm probably 90% better from when I was the sickest, and the fatigue is still there and more so after (grocery shopping, walking alot, laundry, vacuuming) and it lasts for a few days " the intense fatigue"..Is there a test? And treatment for M.E?
  7. Sorry about your experience, there's those " kind" in every specialty that cross the line....I think the pychs point was to get you not so focused on your health problems because compulsing on any aspect makes things worse overall.But he just went about it all wrong. I hope you feel better and try not to hold onto this experience just learn from it, and records are only released at your authorization.....so exclude that one and never let someone dismiss your medical concerns based on a POTS diagnosis. Good luck:)
  8. I was looking terribly sick for years, pale malnourished with a brainfog look in my eyes.But since I've been improving I appear very healthy except on my bad days then I'm very splotchy and its noticeable.
  9. I had the No appetite for years!!!! I mentioned it to my doctors and was having lots of testing during those years, they only kept telling me to gain weight?...I was 93 lbs and I ate junk food often in the middle of the night seemed to be the only time I had a appetite (half asleep) :/ But around 5 month's ago I started getting my appetite back the only change was waking up early and being more active, I've gained 14lbs and feel alot better just can't fit my pants lol..I think constant high adrenaline affects the appetite maybe some relaxing and comfort foods on a set schedule could help:) or testing the location that controls appetite.
  10. What about silent migraine or pinched nerve in neck/ shoulder area ?
  11. I've never been able to hold a job for more than 2 months, thats been since 16 and I'm 34 now...I really feel dissatisfied with my sucess outcome, and I always think about trying to get a degree in a profession that can accommodate my medical needs. Still debating on it :/... Glad to hear some of you are able to work even part-time I think its beneficial psychologically.
  12. I had the vaccine as a child but still caught it a year or so later.
  13. Great news:) Hope it continues
  14. It is very important to be believed but unfortunately I don't think I am...It use to hurt really bad to see my family members just look at me with disregard to my complaints like "yeah right your feeling so bad again"...I think they assume its mental so I have distanced myself from even talking too much about how I feel. I really hate being accused of choosing the time when I feel the worse like during events or when I have something important to take care of, then I magically have energy for things I enjoy. Like I use being sick as a advantage... To be honest I'm pretty lonely with the true feelings of this illness, I go to a counselor and get alot of "oh that symptom can be anxiety" but I know the difference since I deal with both, so I spend alot of time explaining medical stuff, which I don't really feel like doing. I guess the importance of others understanding is beginning to not even matter because I'm tired of proving something I don't even want to have.
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