hi i’m 41 and was diagnosed with addisons 2 months ago after being very very ill for years.since being diagnosed i have gone into crisis 3 times,i’m exhausted all the time and suffer terrible pain.my blood pressure has gone through the roof.i am on 60 mg hydrocortisone and 100mg fludricortisone .will i always feel like this ??? does any body else??? i would love to get back to work but i’m a head gardener and just don’t see how i can when i cant even sweep the living room.i could really do with some good news so please let me know what i have to look forward to.
Paula
i thik you floronef is to much 100 mil
my is 20 mil a day in morning
and hidrocortisone 20 in morning 15 at night
im stragoling since1987
pliase fil frie to contat me i hope you fill better soon
lenka
i think your florinef is way too much----i have never heard
of anyone taking that much-----that has to affect your
blood pressure-----i take 0.5mg plus 40mg hydrocortisone
i am in a lot of pain —i try to work some----i do insurance
so another agent helps me, but this is not a fun disease to
deal with—especially since docs do not know that much
about it
good luck and stay positive!!!
Whoa! Too much hydrocortisone (Cortef) and tooooo much fludrocortisone (Florinef). I was diagnosed April 4 1974. I have only had 3 crisis in 30 years. I am very fortunate. I never go near anyone who is sick. I worked all of those years. I feel fine. I take 20mg of Cortef and .1 Florinef. My Endocrinologist checks my cortisol levels annualy with a 24 hour urine. If what you wrote is correct, you need to change doctors.
Paula, I am wondering how you are feeling now. Did you
get your meds adjusted? They were both just extremely
high. I hope you are doing much better.
hi
thanks for asking I’m due to go in for the day in the next couple o weeks so the can do my levels but will keep you updated hope your well
god bless
Paula
— On Thu, 23/10/08, brennie addisons-cpt9795@lists.careplace.com wrote:
From: brennie addisons-cpt9795@lists.careplace.com
Subject: Re: [addisons] addissons crisis
To: paula.smith40@btinternet.com
Date: Thursday, 23 October, 2008, 4:12 AM
When you mentioned pain. Exactly where is your pain and how does that relate to Addison’s? I am in pain all of the time as well and take a lot of narcotics for it. I start doubting myself sometimes though. aM i really hurting or am I hooked on the drugs?
hi
the pain is all over at times its just to painfull to stand with the pain in my feet
they say its not addisons but the more people i talk to the more im sure it is
paula
— On Thu, 30/10/08, karena addisons-cpt9795@lists.careplace.com wrote:
From: karena addisons-cpt9795@lists.careplace.com
Subject: Re: [addisons] addissons crisis
To: paula.smith40@btinternet.com
Date: Thursday, 30 October, 2008, 3:44 PM
For those with chronic pain - maybe diagnosed with Fibromyalgia or Chronic Fatigue Syndrome…
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Is your pain more concentrated in your shoulders/neck? Do you get headaches? Are the headaches more prevalent at the back of your head and associated with ALOT of neck/shoulder tension?
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If so, let me know and I will email you info on a condition I am diagnosed with (PRIOR to my being diagnosed with adrenal problems). It’s called Occult Tethered Cord Syndrome. And, in my case, it was so subtle that even MRI could not pick up on it. Bottom line is, it pulls your spinal cord tight and can cause pain all over (if you think about it, it makes sense since the spinal cord controls all-over body function).
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Another clue is foot abnormalities (flat footed, pigeon toed, high arches, etc) or eye abnormalities (lazy eye, strabismus, etc).
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I won’t get into it here - WAY too much info - but I DO suspect OTCS is related to hormone deficiencies.
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Amanda in Maryland
— On Thu, 10/30/08, karena addisons-cpt9795@lists.careplace.com wrote:
From: karena addisons-cpt9795@lists.careplace.com
Subject: Re: [addisons] addissons crisis
To: amandamariebaker@yahoo.com
Date: Thursday, October 30, 2008, 11:44 AM
oh…sorry…forgot to mention. You’ll have to email me directly b/c I temporarily unsubscribed from the digests.ÂÂ
Amanda in Maryland
— On Thu, 10/30/08, karena addisons-cpt9795@lists.careplace.com wrote:
From: karena addisons-cpt9795@lists.careplace.com
Subject: Re: [addisons] addissons crisis
To: amandamariebaker@yahoo.com
Date: Thursday, October 30, 2008, 11:44 AM
Talk to your endocrinologist… FIrst, like everyone else noticed, your meds look crazy high! I take 0.1mg of florinef. Too much florinef will bring your blood pressure throught the roof. And also discuss using prednisone instead of hyrdocortisone. I was on hydrocortisone for close to 20 years, and the ups and downs were a killer. Prednisone has a longer half life, and my energy is much more stable, as is my weight. Also, the more stable prednisone helped me keep my ACTH in a healthy range.
Stevek,
What do you mean when you say Prednisone has a longer half life.
Bethanna
I am going through a crisis at the present----in fact. I go back to see the
Dr. today. I passed out Monday, so my husband took me to the ER. They gave
me IV’s and 100 mg cortisol. I will be taking 80mg hydrocortisone along
with my Florinef for 10days. My electrolytes are all screwed up as well
as my kidney functions. All I want to do is sleep----can’t eat—I am so
nauseated. I lost9 lbs in 2 days----oh well, that could be good—to
get rid of some of the weight I gained from the steroids.
Two docs have said that I have to quit working. They will help me apply
for SS disability. That should be interesting as I know it takes
forever to get approved. I am now in stage 4 renal failure and will
be having to start dyalisis, so that should help. It is hard giving up,
though.
Hopefully, you all will have a better year with 2009!!!
hi Brennie
how are you feeling?? sorry havent talked in so long had a few crisises but no where near as bad as you i hope yr feeling better now yr on dyalisis take care of your self
god bless
paula