comfortzone

Well gee thanks guys -- made my day to read your comment! Glad it was helpful to read....

Hi!

People will always be ignorant about one thing or another - you just can't expect the world to be 'up' on everything all the time - Every person alive has their own burdens - their own heartaches - their own trials. Same idea with disability - every person is 'disabled' as regards the ability to do something -- some can't do this - others can't do that ... everybody has uniques stengths and talents -- everybody has their own inabilities, faults, sickness etc...

That doesn't make the person 'bad' --- but it is a part of life we wish could 'let up' for awhile ~ perhaps be gone forever ~ hurt feelings and the fragility that accompanies chronic illness are just plain difficult. But know you are not the one 'disabled' actually in the most important way - but rather maybe they are disabled in a very vital way - which might be a lesser ability to understand or embrace the qualities of long-suffering, compassion, empathy and patient endurance.

The life circumstances you find yourself in - are very very difficult .... yet in some ways they are our teachers about some very grounding life lessons....the dignity of all people, the unlimited capacity to love and forgive others and even yourself, that sometimes the only way to make progess is to truly 'let go' rather than tightening the reigns...

To be misunderstood, blamed, mocked, held suspect, ridiculed ~ it hurts like the dickens and can cause a variety of unpleasant emotions - anger, jealousy, fear are a few. It's a 'super-human' of some sort that can just take this treatment as if it were 'nothing'....

So what do we do .... well the fact remains that you are a one of a kind - one time only breathing miracle of life.... yes a miraculous wonderful human being! There are no limits to what you can choose to do to make things work for you rather than against you with what you have going on. We are all disabled from something!

You have chosen to participate here - a very good social outlet within a group of folks that have a version of one sort or another of 'these symptoms' ... Affirming you are not alone... You are strong ~ yes as weak as you may feel - you are very very strong - think incredible the accomplishment of enduring a day on the 'bad days' - I mean c'mon - it's freaking hard - and you did it --- you did it! No ones opinion matters aside from your own ... as hard as that may seem to believe... We can take in the advice, the ideas, the good supportive talks and the ones where we feel abused -- in the end we take what's useful and toss the rest out like the weekly trash can.... helps to cling to the good and shrink, reduce, negate and blow away to the wind the bad stuff.

When the seeming 'powerfuls' of the world harsh on us - doctors, parents, kids, government agencies - we can shrink from the sting of that - and fear can try to grab hold...in the end - you inside - will be driven to either run the other way, strive for justice in your actions, confront -- you will try try and try again to do what's best for your survival - protect yourself in your vulnerable position - so you can find a place in life to take very good care of you.

Pushing for disability is a very wise decision when the physical and mental capacity to work is threatening or looming - if we don't take care of ourselves - no one else is gonna! Nothing says we will get well - nothing says we will be like 'this' forever - but you have to do what's best for this one day - today. If we don't need it later on - great .... The irony of Soc. Sec. granting a person benefits for disablity - and then immediately helping out with back to work programs -- that don't hamper benefits - speaks to this 'void' experienced when a person is used to working and suddenly 'can't' -- Work is healthy in it gives focus and an outlet to use the whole person - to make a difference in the world....for many it's the only social outlet they've known outside of family.

Many people volunteer etc... Life can seem surreal and freaky without a work life - odd enough topped with all the discomforts of these disorders. Yet you well know that sun-up to sun-down within the 4 walls we call home - alone - can seem an insurmountable challenge with fatigue gripping, negative thoughts intruding etc...

So be true to yourself - forgive the ones that don't get it.... Do what feels right - you can educate them, be patient with them, run like there's no tomorrow from them to create much needed distance... whatever will free you up to concentrate on what's important ... and that is your precious life.... don't let it pass you by battling the unnecessaries - but fill it to overflowing with the goodness that is you...

Count me in with the fatigue - life would be grand if it was spent utterly horizontal..... I simply can only 'cope' so long in a day - and if I don't lay down I will just stop functioning period - practically cry till I can finally lay down. Sometimes rest is super helpful and I can get going for awhile at night -- But lately - things are worse - and I never get the initial energy .... Soooo frustrating. Often it seems purely d/t dysautonomia - yet with proper medication - some days the fatigue is there with almost normal vitals. Day before yesterday walking in a mall - I literally couldn't walk any further - found a nice seat and couldn't muster energy to move for nearly an hour.....while sipping cold tea -- I nearly called mall security - it was so scary. But in the end I managed the walk back to the car and pressed on... Now tonight HR is 80ish laying down and 113plus with a stand - but I had no more Clonidine - so missed a.m. dose - got rx filled tonight - took 2 and I 'feel' better but the fatigue is 'crushing' still.......... Blood Pressure may be partly to blame up and down all day long

I should well be used to this - yet I doubt I ever will -- my symptoms became rather severe perhaps in 2006-7 but I didn't know a reason - a couple years later learned of EDS-hypermobile type and the accompanying battle with vitals that vary an awful lot in a day - labile b/p - tachy and then the opposite...

I really hate that anyone else deals with this - but most assuredly I am oddly comforted that I'm not the only one in the world with this ridiculous crazy way to try and function in life........heaven help us all! I hope everyone feels better very soon!

My total protein a couple weeks ago was high - 8.2 Albumin 4.8 and Globulin I think 3.4

Has anyone's protein electrophoresis shown abnormality?

googled this..

Endothelial dysfunction has also been shown to be predictive of future adverse cardiovascular events. One of the main mechanisms of endothelial dysfunction is the diminishing of nitric oxide, often due to high levels of asymmetric dimethylarginine, which interfere with the normal L-arginine-stimulated nitric oxide synthesis. The most prevailing mechanism of endothelial dysfunction is an increase in reactive oxygen species, which can impair nitric oxide production and activity via several mechanisms.[3] The signalling protein ERK5 is essential for maintaining normal endothelial cell function.[4]

It is very much documented that people with joint hypermobility or ehlers-danlos seem to have a lot of POTS going on....in that patient population...

Also - hypermobility patients have anxiety as a common feature - and panic attacks as a common feature.... again they don't know precisely why this is - whether it's related to poor proprioception and your bodies not knowing where exactly it is in space - to if it's something else entirely such as genetics..

Just mentioned it because of my doctors that know about EDS - they all give a knowing 'nod' -- but a respectful one -- if you answer 'yes' to anxiety or a history of anxiety .... it is absolutely that common.

So again I see another triad - this one of POTS, hypermobility - and this time anxiety and panic disorder.

Angelika ~ What did your holter test ever say if you had one? I know with mine it was a baseline of sinus tach - average heart rate of 100 - and then a lot of palpitations - that showed up as paroxysmal atrial tachycardia - short runs of SVT ... pretty common for young people ('cept I'm not young) exercise, alcohol, lack of sleep, spring or fall, caffeine seem to trigger people...

I too would get that lurch - or 'reset' thud and then off to the races lol... Now that I'm on a beta blocker it comes less often - and the tachycardia that's normal baseline pretty much went away. I get periods of fast - periods of back to lower - which is weird when you take the same amt. of beta blocker... Why a week of 90's to 120 -- same med -- and then this week 60 to 65.... I think sometimes I just function at a higher adrenergic state and I get what I get - sometimes the med wins - sometimes my tachycardia wins ~ c'est la vie!

Much continued 'good' runs of days at your program ... Hope they are all very good indeed!

I had not ever heard of a neuro surgeon doing those injections before - probably just my experience - but where I've been in the country it was the pain management/anesthesia docs that did the injections at pain clinics - where they have all the imaging devices etc...

I do know when I first moved here to AZ I went to a pain clinic and this doctor was pretty awful - told me he wouldn't give me medication for my pain - but said I had to go to a chiropracter in his practice, go to PT, go to his dad who is a pain counselor and then allow him to give me epidural shots in my neck for the radiographically evident cervical stenosis.

I was like????? what are you crazy? So I went to his silly chiropracter - whatever she did made me nearly faint as I was walking to the check out area - felt like throwing up too. Had to sit and wait till I could walk again. Long story short I got out from under his care - (my neck was mildly tender upon palpation - I'd get 'neck' headaches but the mri's said mild flattening of the cord from my neck issues)...Found a good office - who also sees a lot of escapees from the other doctors practice & he apologized for the guys bad behavior!

Next I saw a neurosurgeon on the east coast who told me I needed a 3 level neck fusion and he's one of the best NS around per the opinion of alot of 'bigwig' docs. I was like ???? So I asked my team at Mayo - and they said 'no' you certainly do not need any surgery at all. The other surgeon called me like 3 times telling me I'd be a quadraplegic if I didn't do as he asked...so Mayo did a bunch more testing - answer was "no" you don't need surgery.

I recently had 2 steroid shots - one in each hip for ruling out trochanteric bursitis - I used to get cortisone all the time for my knees and it was they'd give me great energy and had me feeling better - that has changed - I felt really kind of awful for a few days afterward...then a week later had some super low blood pressures and tachycardia that necessitated med changes - but now things are back to normal (well normal for me)....

But - the good pain clinic doctor told me that if and when the time ever came that I needed an epidural for excruciating type pain - or if my neck got a lot worse etc....he wouldn't hesitate to help me (with ehlers danlos too) So in that I sensed he had no anxiety whatsoever in dealing with special cases such as dysautonomia etc... I figured I'd make sure I had an IV in - ask for it - so if anything happened they'd have access for meds to turn things around if anything wasn't going well --- but I hadn't heard that you couldn't get epidurals because of dysautonomia - I'll read what the others say with interest though for sure!

Thanks for all the dialogue on CFS, Pots and the like - very informative and interesting. My eds doc back east told me I had swollen lymph nodes in my neck - ??? Told her about the month long hospitalization for mono as a kid - she said - well better get checked again - maybe this is why you feel so weak... It didn't make much sense to my primary - so nothing was done. I supposedly had 'mono' again a couple years later as well - in my teens. Not sure which tests my primary would even order - as it's known almost everyone my age has had EBV ... titres and antibodies maybe .. dunno.

In 2006 after 2 major surgeries I pretty much just collapsed in function. Could barely get out of bed...for near an entire year. Everyone thought in the doctor world that I was depressed perhaps - though I knew I wasn't - I allowed them to prescribe anti-depressants - for a whole year - they kept switching and adding med after med after med - quite frankly they were killing me.......

I put a stop to it all - escaped the medical climate of the area I was in - weaned off all meds 8 of them - and haven't taken any since. I was not then, nor am I now depressed - not even a little bit. So now I find your sharing of fatigue very interesting. Mine is mild now compared to that one year - five years ago. I never knew what that was in the end - but it did go away and I got back to full time work. What I have now happens daily ~ but I can get some things done in a day ... it's vaguely anxiety provoking - now that I remember that awful one year.... I had no idea of things like dysautonomia back them, nor hypermobility, nor orthostatic intolerance - it could have been going on big time back then - yet with so much medication - how would anyone likely know what was going on...

So now I tread very lightly when any doc wants meds for anything - I try to hire only reputable doctors mentioned here --- about dysautonomia etc..

Does anybody know what kind of doctor takes care of Chronic Fatigue? Do you need a doctor? Say everything or almost everything has been ruled out of a serious nature.....wondering who 'likes' CFS patients and sees them on a regular basis - is a particular discipline? I had a really bad experience going off of reviews online for a rheumatologist locally - wow he was super mean.... I won't be doing that again - I thought I had learned my lesson - but his rep online on the dr. rating sites was like 5 stars - he behaved so badly I wrote his nurse practioner a long letter of disapproval - as she witnessed the whole visit...sigh.

Hug to you Bev Ray ~

For crying out loud dear - give yourself a break ok? Seriously - no where is it written that thou shalt be 'cheery' in illness, strife, pain, confusion, anger etc... Sure wouldn't we all like to be a Saint one day - and perhaps with the crosses we bear with dysautonomia and the rest of 'life' as it comes - maybe we will be... But till that time - please be kind to yourself ~ Maybe get a few of those amazing books by Jon Kabat-Zin about living mindfully or about mindfulness ... where you function to some extent as a compassionate loving observer of you in your strife - etc.. And for many being truly compassionate and loving to yourself is a very hard practice ... but I hear it's worth the 'training' so to speak... for life is full of 'moments' and we can miss so much of it when caught up - as you seem to be now - in the flurry of chaotic and sometimes catastrophic life events....

And if in observing yourself you see you are angry, blaming, frightened and for heaven's sake "human" - understand that that is our condition ~ it's how we are....it's part of 'us' - just as is joy, selflessness, loving-kindness etc...We are not our thoughts or feelings or emotions - we are amazing people.... you are an amazing person.

Surround yourself with the supports you need - whether it's additional helpers or caregivers -- or whatever it might be - some kind of healthy diversion from the routine - get creative....& never say never - except to say you'll 'never' give up.... Never give up loving, never give up hope for a brighter future, never give up joy and laughter and the praise of the myriad of gifts given you in a day. Sometimes it's the little things - rustling wind through tall trees, babbling creeks, amazing storm clouds, babies smiling - the smell of something wonderful in the oven...

You are so much more than your dysautonomia stuff - you are Bev Ray and that is absolutely wonderful.......all of you. So forgive yourself and move forward to your next new day ... use your intuition or prayer or counseling or reading - whatever your helps are to guide you in how to resurrect from this current difficult time - nothing stays the same - better days are ahead - for real!

I'm experimenting and will agree it's absolutely frustrating... While I need to exercise to help my health - and feel committed to doing this ~ quite simply put --- it comes with a cost ... I'm trying to 'outsmart' my own body so the cost isn't so great... But everyday is a new experiment.

I tried doing twice weekly routine with a PT who said do no more than that. That ended.

Then I decided I would commit to daily exercise - pretty much cardio to help fight deconditioning...

So either half hour on 2 machines or 20 minutes on 3 machines - eliptical, treadmill and recumbent bike...

Trouble is it wipes me out - ridiculously ~ where I have to lay down to rest - like a kid at nap time ~

Then comes the battle with stiffness and soreness etc...(I'll blame eds for that)

So in the end it's more a mind game for me -- getting up super early to get the hour done before the day begins in order to lay down and start the day a second time...

Or saving it till nightfall so I can crash into bed...

The midday routines really spoil the whole day - leaving no time for much of anything once I recover...

A bad thing about exercise lately is that it increases my hunger ... and I need to drop pounds - so then the frig is filled with veggies and fruit etc... But I'm not beyond bowl of lite frozen yogurt now and again by any means...

I have been this way with exercise since I was a little kid - always unable, always exhausted - only got by in college with bowling (60 avg) and volleyball (I'm tall and blocked at the net - and that was all I did).... Never a cartwheel, never a pull up or chin up or rope climbing ~ class A gym class nerd (I'll blame eds on that one too)

Good Luck to everyone finding something that fits - rather than frustrates!

Change can be very hard - but we can't really expect much if we keep doing the same things over and over again with a bad result.... When we dig in with a vote for 'change' - while difficult we can begin to see things in a new light --- with clearer vision perhaps ...

So in the breaking of your routine - continue to be good to yourself - that's what you did in quitting your job - focused on what would be 'good' to your situation in life...

Stay steadfast to your intuition, prayer, meditation or whatever it was that led you to your decision to try to recreate your days for a better outcome....

Now you are in a better positon to see new possiblilities - not the least of which would be focusing on routines and aspects of body, mind and spirit 'wellness'....

May you gain stength and healing in every aspect of your life ~ Try not to let fear overwhelm or any other negative thought/emotion... I trust you will do very well indeed in getting what you need out of your courage to shake up the status quo!

Thank you everyone...

There's a text I recommend called Hypermobility, Fibromyalgia and Chronic Pain - Edited by Dr. Alan Hakim, Rosemary Keer and Dr. Rodney Grahame.

In it there is some great passages that talk about dysautonomic regulation as regards CFS, FM and joint hypermobility.... There overwhelmingly is evidence of dysautonomia within the three.... Absolutely fascinating work...

Neuromuscular physiology in joint hypermobility is described....Cardiovascular autonomic dysfunction is a common finding in CFS, FM and JHS...

Some tips for management involving supplements I haven't tried yet but in the book are listed as: Carnitine (with main side effect of it being hypertension, tachycardia and fever and maybe impairs thyroid function.

Q10 with SE's possible of N&V, diarrhea, skin irritation, irritablility, and increased sensitivity to bright light and flu-like symptoms. It may induce hypoglycemia and hypotension.

5-HTP not to be taken with other meds that effect serotonin levels with SE's possible of Nausea, Dizziness and diarrhea.

With all supps there's potentioal for negative interactions with other supps and meds - and specific dosages are not yet set to recommend for CFS, FM or joint hypermobility syndrome.

But under the care of your doctor or (my doctor) health care provider - I bet through their own anecdotal experience and research they could recommend some dosages...

Anyway - now I guess I know that this is really a common thing - this fatigue - and likely has it's roots in Cardiovascular Autonomic Dysfunction -- as well as chronic pain, deconditioning and all the other things ...

Talks about CFS and dysautonomia etc..

The book details out all the pathways of pain etc... so if you are a fan of research and books that speak of the science of how these things are interelated - I bet you'd like it - found on Amazon.

Thanks again for telling me your stories - I fit right in with the conglomerate/constellation of symptoms - but am a rookie at trying things that work

I've had these episodes of fatigue that are debilitating and I can't for the life of me figure it out. When I've read a little bit about CFS they say that the fatigue you have does not get relieved with rest. Mine however does feel better with rest. I still am in a bad period of it - and a bit overwhelmed by it - but truly if I lay down mid-day for awhile - I will feel a bit better later in the day. Mornings are still slow going like so many here - the worst part of the day - then I get a bit of activity and productivity in - and then bam - by 2pm I'm needing to lay down. Why is that?

I have had times when it absolutely correlated with low blood pressure - but other times my blood pressure will ring in normal with adjusting medications. So then I think it's not med related...

I had mono as a teen and was hospitalized for a month - I was pretty sick - but they also put kids in the hospital a lot more in the late 60's. So then I wonder if it's Epstein Barr related.

I'm not at all depressed - but the lack of energy can just weigh on you. Especially when you can't keep up with your housework. I notice I'm pretty bad when I try to incorporate daily exercise into life. So when I exercise an hour on the cardio equip - say 20 min. on 3 different machines - that's it. I'm done. Period. Recuperation time is several hours of extreme tiredness.

Yet exercise is touted to help you feel better! It's not working.

What kind of doctor takes care of these issues - does anyone know? Is there anything you've tried to help it? I wonder if mine is a reaction to chronic pain? I don't know - it's kind of bothering me though for sure. I 'can' do things - but the price you pay is crazy.

I'm going to try to visit with family end of the month - I want to see how I function when trying to hide the fatigue behind the activities of visiting relatives... I wonder if it will be a distraction - and therefore a help - or if like last year - I have to excuse myself to lie down...

Thanks!

The Mayo I went to is in AZ... I don't know about Florida - no one seems to write much about the clinicians down there as regards dysautonomia - but the Mayo system as a whole is pretty ridiculously easy to maneuver imho.... everyone gets on the bandwagon that needs to be in a mere email, phone call or in person chat - bam - you are to the next discipline to get their input. I've heard the main campus in MN is great for these kinds of things as well - and clinicians do spend time up there often enough before landing their practice in the other ones...while not truly satellites - each it's own Mayo - they are all connected if needing to be.

The other clinic that I see mentioned on here now and again is the Cleveland Clinic.... I don't have experience with it - but wanted to share that some have gone there for help with these kinds of issues.

You explained things pretty darn perfectly --- however I've only had courage to mention this once to a doctor. For me it's losing simply everything and anything all day long. You should see the number of calls I make to my cell phone in order to find it - now that's concrete proof. I used to be afraid to live alone!

One doctor told me that what we deal with causes an awful lot of stress and we feel lousy an awful lot of the time - and this was his explanation....stating things will likely improve when you get to feeling a bit better.

I don't really want to waste insurance dollars or my own money for neuro-psych testing for cognitive memory issues - but I sense I'll know when I have to insist on that. Lately the more I try to accept it and not get all upset, tearful, or downright angry about it the better I cope with it.

I'm just to tired to 'deal' with it on a formal level with doctors and such. But it can be certainly disruptive and make you feel like you are losing your sanity sometimes...

I keep trying to work on routines to help out with this...

I'm trying to think - there's a few different groups of drugs for sfn.... Pregabalin, gabapentin, SNRI's, SSRI's, topical lidocaine, tricyclic antidepressants etc.... there is great variablility in their mechanism of action - also other anti-epileptics are used...

I know that abrupt withdrawl symptoms can occur with stopping Lyrica cold turkey - that's easy to google on the internet - but what I'd do is phone the doc that ordered the abrupt withdrawl and tell him what the cardiologist is saying - review what he is saying and then explain your experience in following orders. Tell the doctor that cold turkey is truly making you miserable.

No doctor wants his patient to be uncomfortable with withdrawl symptoms - but if it's a 'must' as in your health is at risk if you don't stop the drug immediately - then I think you definitely need to make sure both caregivers understand clearly your discomfort in this process - and get new orders as to what to do about it. If they want you to just 'deal' - well better to hear that clearly so there is no misunderstanding - if after further exploration - in your specific case a taper is necessary for discontinuing the med - then by all means do the taper.

You have to always stick up for yourself - don't get too scared reading about withdrawls - just know it's not in your head - the withdrawl symptoms are real.

Feel better soon!

I came upon this article - might not be much help - but for what it's worth:

http://utnews.utoledo.edu/index.php/12_10_2010/utmc-researchers-find-link-between-mitochondrial-cytopathies-and-autonomic-nervous-system-function

Blessings to you!

Prayers said for you for sure.... Be strong ~ you can always stop a med if it doesn't seem to be helping you ... you are the boss -- Like Klonopin - a long acting benzo - lexapro is one you will have to taper off of - if you take it for a length of time and down the road decide it's not for you... Doctors are often prescribing these SSRI's etc... and tell patients that side effects will wear off in time - keep taking it etc... But I've yet to hear one talk about how difficult it can be for a patient to want off the med asap and then find out they have to taper - in fact never do they usually mention anything about going off these kinds of meds. I don't think it's a big need or problem if you haven't been on it very long - but for those on it - say a year - those folks need to taper most definitely... I hope this combination proves very helpful to you and that you'll be feeling better soon!

I really don't know - but as a rule if a person needed hydration in a hospital or clinic setting it would be either Normal Saline or Ringer's Lactate - to afford the body at least a chance of holding on to some of it - where if it had dextrose in it - you would definitely lose it and other fluids to boot much more quickly if that's possible. Really dehydrated people in my experience would eventually have to urinate - but not right away - sometimes not till 2 or 3 liters - kinda scary - it's like you are praying for them to pee LOL... You don't want any other issues on board to worsen things... I would love to plug myself into a saline IV every morning and take a liter that way - drinking fluids except coffee in the morning can cause me nausea pretty easily - an exception would be if I did get really dehydrated and am out of the house - I'll sit at a restaurant and drink a whole pitcher of water and then some - but that's really rare and I have to really dry to ever get thirsty. I don't think I have leaky vessels - well no one's said that and I don't get edema in any of my extremities very often - but I do have varicosities in my leg veins.

I hear you on this frustration too - Quite literally there seems no rhyme or reason for shifts in vitals. I read this because today - just doing nothing but sitting my hr is 110. I am on a beta blocker - so I think maybe I'm dehydrated and sip water - nothing changes. It's crazy. Why for months have things cruise okay - then bp and hr go too low - adjust meds - then everythings too high - again adjust meds - and now some of each - heaven forbid an almost normal scenario! Meaning if you b/p is low and hr high - well someone might think you are volume depleted and you've lost your pulse pressure perhaps too. But WHY? Why for months have a resting hr on meds of hi 60's to low 70's and now it's 110 at rest? I'm chronically dehydrated - so there is nothing new going on here other than an awareness that has me checking off boxes for every 8 oz. I drink. I'm at least trying to drink more - but that wouldn't as a rule increase a heart rate at all. I have no fever - I've been described by Dr. Tinkle as 'possible pots' - but basically I think it's just dysautonomia and a bit hyperadrenergic as a baseline. Today I feel really weak and having trouble doing simple tasks - maybe I'll shower and jump in the car to run errands and try to snap out of it - anything is better than sitting here stewing over new symptoms, right? Blessings to you!

Withdrawing your benzos without a taper could cause life threatening scenarios to unfold ~ siezures minimally. As a nurse I've seen benzo withdrawls on hospital protocol with a detailed and doctor approved taper & additional medical helps and people can still suffer mightily - the patient is monitored as if in an ICU - this is no joke. Stand up for yourself - go to an ER if you must and detail out the doctors name and address and what he is doing - maybe they can contact him .... Again this is very serious stuff...

Lots of good videos from the schools in southern Ca about the link btw. cancer and vit d deficiency - especially breast ca - second was prostate ca -- let alone the link with your bones and their health... A year or so ago I watched an entire lecture series from I think USC - it was fascinating the research and queries and conclusions - never knew Vit D was that imp. The problem being the scale we have now is too low - so even if you are normal you are still low -- that's an old scale that had to do with rickets or some such thing - like the vit d needed to prevent that one thing. I think they'd like mine up in the 50 or 60 range - it's been chronically low - started in the teens then went to the twenties now its finally mid 30's I think. I try to pop 5000 units in the morning sometime...i wonder if living in AZ with all the sunshine will be helpful - to me doubtful - but then again maybe it will help - I never wear sunscreen unless absolutely mandatory..

Ignore the negativity - set your sites on your goals - map out a plan and go with it ~ no one is helped by reading and taking heed from nay-sayers... Things can change in an instant - this we all know. As you know - you need positive things and a sense of control in your situation - so set short term and long term goals - believe in yourself and take steps toward achieving your goals.... Getting information is important for sure - but you need to filter what comes in ... grab the good and dump the negative ~ no one usually will win with a bad or sad attitude ~ yes it's understandable with all the suffering people endure - but the fact remains that nothing is carved in stone - situations do change - people conquer difficult situations daily - this is no reflection on you as a person - this situation - but simply a difficult window to deal with and figure out. Look for the blessings in each day - because they are there ... don't ever give up ~ check off your goals - writing them down can be helpful sometimes... The people here are all rooting for you - you need to root for you too... You are an amazingly strong person who has much to offer and give to the world - might not be what you originally planned or hoped for - but it is your life - take good care of yourself ~ tackling small little daily goals add up to big gains and is a stress reducer...kindest wishes to you.

While it may not seem fair to have to tip-toe around physicians and healthcare personnel about yours or their spiritual beliefs or religious tradition - the truth is it may be wisest to just say nothing about it at all. I mean you can of course speak to these realities - but you are at risk for 'labeling' and being taken down a road you have no place on - such as on a locked psych unit of a hosptial. How I wish this weren't the case....

If after a time you and your clinician have developed a certain level of familiarity and kinship - and you trust that something of this nature will be treated with respect - then it's less risky.

When I was looking for a surgeon for my joint replacements I would speak to my patients about their experience with their doctors - more than one patient told me of the 'ways' of one surgeon - and that was that he always offered to pray with them. I liked that level of humility and sought out that surgeon for my care - and we did pray together in the office and hospital both on multiple occasions. When he himself had to battle cancer - I prayed mightily for him and he ended up having a good outcome...I was so grateful. It was nice to be able to be on the same page during such vulnerable times in life...

But unless the clinician is of the same spiritual openess ~ I would agree that the combination of odd symptoms with the addition of 'religious experience' or 'spiritual experience' -- as in mystical phenomena - it might be better to save that part for the spiritual director and leave the doctors and nurses out of it.

I wish it were different - but it's my experience that we are vulnerable enough with dysautonomia without sharing of mysticism ~ which could put some people over the edge.....and lose perspective. Which sadly it seems happened here...

For years as a nurse we're trained at any 'new employee' orientation about being respectful of all religious traditions and practices and how we are to call the pastoral counselors anytime day or night for patients in spiritual crisis etc... But fear is fear and my best guess is that people that are ignorant about things they haven't been taught or experienced will abandon all openess and peg you as someone with 'issues' .... People throughout the ages have undergone prejudice and worse for having shared their mystical experiences... this is nothing new for sure.

But if you are done with hiding such things from people/caregivers - then you get what you get which may not be optimal - it's a hard road I'd imagine - only the person knows what's best though - it's a personal decision for sure.

I had something similar about ten years ago. Had no insurance and the visit was to a rheumatologist - as an ortho doc said I had monoarticular rheumatoid arthritis even though all tests were normal.

I had a lot of questions about RA & how this ortho came up with it as a dx.... so I asked them. And the doc answered them. And I left. In the mail came a bill with a huge charge for a new patient visit with something like 'extended or extensive' problem fee. I called and asked what is this multi-hundred dollar extended visit fee about? She said it had to do with time the doc spent with me.

I told her that was highway robbery - and if you are going to do that - you have to let the patients know you are going to do that. Had they told me I assure you with what little money I had at the time - I would have brought with me a kitchen timer and set it for the customary 5 minute office visit!

I was very angry and let them know it - and they got rid of the extra charge on my bill....

Reminds me of a groomer I had for my Old English Sheepdog. I had her groomed monthly - well I moved and had to try a new groomer. The first visit was a normal charge.......the second visit more.......the third visit more ........ till finally it was like 200 bucks to groom my dog who was clean as a whistle and gorgeous because I took great care of her...... I demanded an explanation! She told me, "I could do 10 dogs for the time it takes me to do one Old English Sheepdog ~ "???????

Well needless to say I never went back - found a different groomer who loved my little puffball & who did a great job for the customary 40 bucks I was used to.

It's crazy to me that they rip people off that way - I mean morally wouldn't you kind of just assume that some patients are going to be a 5 minute visit - the whole, "say ahhh" - "take a deep breath" - b/p, hr and you are done type visit - and some patients would have a longer visit - such as a fever of unknown origin, or a diabetic in near ketoacidosis.....or heaven forbid a patient with dysautonomia..... It's all in a days work - they balance out the day -- some long, some short.

If they are going to follow that logic - then if I only take 2.5 minutes of their time - would I get a nice hefty discount? sigh