Oh, God-Will I be this sick for every day of the rest of my life?

[KonaRose]

If so, then I tell you truly, without any drama or tears, that I cannot bear anymore. I am so very, very sick, nauseated, extremely weak, especially on the right side, shaky, hypoglycemic, headaches, abdominal pain and extreme distension, mental cloudiness and confusion, edema, insomnia, depression, suicidal ideation, plus low back and neck pain from two previous MVAs. Dear. God. How much can a human endure? It's almost been 3 years of nonstop severe illness. I am on hydrocortisone 30-35 mg daily, but crashing every week or every other week. I have big baskets full of medications, supplements, everything I could glean from studying, researching, and listening to others. But Dear God, I am so sick, so very sick. I don't know how to go on. Quality of life is so incredibly poor and I don't know how to bear the future. Please don't ask me about lab values or what I am taking, or what I have tried. I am simply stating it is all just too much. This is not life. It is barely hanging on, each day, by threads. I use to be an RN. Then my life came to a crashing halt, very rudely, and without explanation until I saw every 'ologist' in the phone book, and started through the list of them again. From reading about so many others who have this, my case sounds like one of the worst. I am just throwing this pain out there, into the void of internet land.

[PrettyKiity808]

I see you use to be an RN. It's crazy when you are strong and active when helping people. Than, all the sudden the body gives out for no reason. I'm sorry you are going through all of this. I think doctors don't listen to what patients need. When they don't know what is wrong they say it's stress or anxiety.

I am trying to become a RN now. 2 years 6 mon ago my body gave out on me. I was taking 3 meds. Two meds were for scoliosis (back pain) and the third for a UTI. One day my body gave out on me. I had a mini period on ovulation day, fatigue, dizzy, lightheaded, off balance. The more I did physically the more my HR increased. It still does now. When I lie and stand my HR jumps high. I get SOB the more I do. I am limited. Before I had to delay nursing school. I couldn't drive a car for three months, I couldn't work for six months. I am debilitated. Now, through antidepressants and a beta blocker, many tests I am doing a little better. I cannot enjoy life so much. I talk and chat with the elderly in independent living about all the symptoms I have. They are in their 80s and 90s. After a jaw surgery last year in July my body cannot have a BM without magnesium or a laxative. My body cannot digest food correctly I don't think. I have constant pain in the left side of the abdomen. I am so tired and fatigued still. I work part-time. I failed a class I was taking med surg. because I can't think straight and can't figure out the questions on exams. Now, I am trying to get better even more. My periods are always abnormal. I shouldn't have all these things wrong. I'm 25. I want to start my life but I can't. I still live with my parents and fortunate they support me through this weird situation. I feel like I'm dying half the time. My life is bleak. I think the day my body went out on me it was the adrenal glands. I am so tired and want this all to end. I want to help people. I don't know what to do.

[kitonthemoon]

Hi.....myheart goes out to you.  It is definately no fun living with an illness like Addison day in and day out.

You are definately not living with this condition alone...and most of us here understand exactly what you are going thru.  Some of us, even had the same doubt about not able to take it anymore.

Please believe that you ARE STRONGER THAN YOU THINK  With the kind of support here,  you will be surrounded by generosity and kindness, sound advice and informations, etc.

Just DON'T GIVE UP.

With warm hugs,
Kit

[galliar]

I am sorry to hear about this also.  I have Addison's and the from day to day go through similar thoughts as yours.  Don't give up, there is hope.  I have severe hypoglycemia, low WBC, and other things Addison's gives you.  It took quite a bit of time, a Dr. laughing at me, an edno telling me not to ask him questions because he had medical association plaques and awards on his wall.  The disease is real and it is serious.  However, it can be controlled.  I have found that multiple compound issues result and you have to seperate them one at a time to understand their symptoms, and what causes them.  For instance, low sodium (causes terrible depression and weakness), LBS (this is the worst as it hits all the time and causes minor adrenal crisis to result), allergies, etc..  Since you were in the medical world, you need to have the book "The Safe Uses of Cortisone" by Dr. Jeffries.  He was a pioneer on physiological does of HC for Addisions and other issues.

Food is a biggy for me.  Since I have severe LBS I have had to do the following:

1. Eat high carbo meals, and many small ones a day.
2. Eat a lot of non starchy vegetables.
3.Go on an exclusion diet to find out what you are allergic to.  I found out I was allergic to wheat, shell fish, some nuts, etc..  It causes an Addisonian reaction and masks itself along with the other symptoms.
4.Get off of all sugars, fake sugars, sugar alcohol's, any substitutes.  Stevia doesn't appear to affect insilun levels for me.  Sugar is sugar in any form, even apples are to much for me.

Allergies (they are rampant with Adrenal issues)

1.Go on an exclusion diet.  You can find plenty of information on this.  You might find like most adrenal people that this is a big problem, that can be solved once you understand the cause.
2.Get off of all supplements except whatever is necessary temporarily to filter out any noise.  You will need supplements, but to exclude out the problems, they often have additives that cause issues.  Vitamin C, D, Calcium, and Magnesium are normally critical though to Addisonians and they help a lot, especially at night.

Proper artsy, not scientific dosages of medication

1.When I start to feel stressed (the symptoms become clear over time) I take extra HC.  The body needs at least 50% more during times of high emotional or physical stress.  The medical community will tell you to be careful.  The bottom line is, when I work out, take walks, or do anything stressful I take stress cortisone to mimic what the body needs.  If I don't, I end up in a crisis, some have put me in the hospital.  If I do, no issues result.  Especially lifting weights or anything physical can really set off a crisis.  You need to know your limits.  I have had situations where a crisis sets in and 40mg Cortisone won't tap it.  I need to keep dosing until it subsides.
2.Drink salt water.  This is probably one of the biggest and best things you can do.  Primary adrenal insufficient people normally need a lot of sodium.  For years I was afraid to do this, and now I feel so much better with proper electrolyte balances.  My tests now come with range, but 136 to 137 is not sufficient for good health regardless of what the normal bell curve lab ranges say!
3.Don't drink volumes of water, it will leach you unless water retention is no issue.
4.Take extra mineral supplements but be careful nothing is added that causes allergies!

Depression

Don't allow it to set in!  This is the worst part of adrenal issues.  When cortisol is low, I lose hope, feel as if the medication has never worked, and get downright depressed.  This is normally a sign of low cortisol and/ or sodium.

I am not a Dr., just a recipient of Addison's.  Hang in their and don't give up.  It will get better.  The medical books talk about many esoteric things, but there is nothing like living a disease.  It is a whole different games and it is an art, not a science.  I have learned that Dr's are a great wonderful help to a point, but real recovery comes from understanding the realities of these diseases and how they work in 'your' body.  It will also change like a moving target every six months or so, but if you get yourself well enough, you can expend energy warding off they new things that come up.  If there is anything the is the most important part of recovery from this disease it is being mentally and physical energetic enough to fight off the things that come along.

Don't give up!!!

[redheadaussie]

Hi there. I am so sorry you are going through so much right now. I know how it feels, believe me, many of us on the groups here go through the same feelings. It is so depressing to be not taken seriously by doctors. You have support here though.
  I know you have tried everything, and often it feels like it is not enough.
Do you have Addison's or adrenal insufficiency?

Hang in there, if you need to scream, shout, cry, kick, you are in the right place for it. We will listen to you.

Take care.