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Posts posted by lissy

  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. 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.

  5. 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:)

  6. 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.

  7. 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.

  8. 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.

  9. So we are suppose to stay well hydrated 60oz. per day, some drink more. If I drank that much fluid I would live in the bathroom!

    If I drink a 16oz bottle of water I use the bathroom 3 times within the hour. And if I drink a few bottles of water I feel completely bloated and waterlogged:(

    I eat salty foods naturally but staying hydrated has remained an issue, I feel like i have a infant sized bladder lol.

    Any others with this bladder kidney complication?

    And suggestions to keep the fluids in?:)


  10. Hmmm ok so I'm not alone, what type of doc tests for SFN? I asked the rheumy but she was stuck on the pains not being adequate enough even though I do have random burning sensation and pins& needles they just don't stick around long thats all...I'll try the coffee water trick guess the caffeine is suppose to constrict the veins or something I take it?...

    Also for people with SFN is that a cause for POTS, or just a separate issue with a cause to also find?

  11. When this 1st began years ago I had pooling and splotchiness only when standing or sitting with my feet on the floor. It has spread to my arms and abdomen and happens almost always unless I'm laying down for an extending period.

    It happens immedienty if I get stressed out or over emotional...

    I have mentioned it to a rheumy and I've been tested for clotting concerns (all clear) I even asked could it be caused by SFN and was told I'd have more pains than I do.

    I guess its so BOLD that I felt my skin was trying to give a clue into what was going on on the inside???

    Anyone have an idea, or have noticed this is pretty common for the splotchiness to increase over time?


  12. Yes I agree with the central sleep apnea!!! I have the same issue, I wake up many times throughout the night and maybe thats contributing to my daily, yearly fatigue. I was scheduled for a sleep study but never went since I have a med/chemical phobia:/ and they have to use some paste to attach the electrodes, but I really need to get over it and just have it done.

    So a sleep study would be a great idea.


  13. Sorry for your frustration this is 5 years for me and a few ER visits prior to that....I've been to the ER hundreds of times and never admitted. I even discussed the issue with family docs, specialist and have been told if its not life threatening then there is no need to be admitted. So I'd say if you don't have very good insurance or cash and the ability to access a teaching or research hospital being admitted really serves no purpose Hospitals are meant for stabilizing and not discovering a chronic illnesses cause unless its plain and simple to find. The tests local hospitals perform are not going to finally find the answer, I've even been through almost every specialty dept for every body system.

    I have been tested through Cleveland Clinic not *all tests performed I think there are 3 more to do... and from what I have heard the treatment is usually the same. I have low blood volume.

    If at all comforting the BASIC blood work will show major life threatening issues and EKG's and echos are fairly accurate. I have started questioning having blood draws now because I know I have low blood volume and being tested unnecessarily is probably making that worse since I am not taking meds to treat it.

    Doctors seem to have this way about doing things if you have a illness and theres a medication for it just take the med and live your life they really don't want to hear you say "Well ok I have this but WHY??? Its really messed up and I have argued, proved my points, cried, and anything else I thought would work but the fact is I'm sick and all I can do is pray, read as much information I can, and leave doctors that put me at a stand still if I can't get no further in my mission.

    I, like many of you for some reason have this burning need to know WHY and want to find the root cause of this problem or we all would be over in the chat-chat section. This is not common in the general population most people go to their doctors get Dxed with something take a med if that don't work try some more and just go on......they don't search, question, worry constantly..I see it 1st hand with my own family I have a mom with heart failure shes in her 50's she has no desire to know whats causing it she takes her meds and just lives. I have a father completely falling apart he may weigh 130lbs always in pain ,trembles with fine motor skills, coughs constantly...and has tachy all the time, but ya know what he works everyday and won't go to the doctor. I have told them please find out what is causing your illness it may help me or my children but they won't.

    Sorry to go on and on but maybe something is wrong in our brains we seem very different even with our thinking if a whole group of us got together in person I bet we could answer more medical questions than the average doctor.

    So I will leave it at that I hope your upcoming appointment leads you to a comfort inside.


  14. I have had those shakes/ tremors/ attacks for many years and have been witnessed in many medical settings. Usually they come out of no where for me and no doctors or nurses were very concerned they would give me a warm blanket and they would pass after 30 mins to an hour. I think they thought it was just a panic attack but from experience its usually some sort of over stimulation prior to me getting them. Like being scared, overly angry something of that nature so maybe its a adrenaline attack.

    Hope you get answers soon.

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