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Addison's Disease Message Board


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Over the last eight years I've been experiencing an increasing cluster of symptoms that seem to become mutually aggravated and alleviated.


Those symptoms include:

- Feeling incredibly dehydrated, my skin, eyes and especially my mouth. It is not alleviated by drinking although I feel compelled to drink as much as I can.

- Frequent urination.

- Having seisure-like muscle spasms and jaw clenching spasms after eating/drinking anything that is high in potassium.

- Recently having developed crippling neck pain that spontaneously occurs and leaves me without full range of motion for 2-3 days afterward, this has happened twice in three months.

- Muscles feeling weak and wobbly, especially in my calves, experiencing restless leg-type symptoms at times.

- Perpetual dizziness and fatigue, feeling foggy headed, unable to focus.

- Difficulty gaining weight regardless of caloric intake.

- Bizarre irrational bouts of temper, that is observed by others to be largely out of character, usually happening when my symptoms are at their worst.

- Inexplicable abdominal pain and bloating.

- Pain above my kidneys, especially on my right side

- Difficulty dealing with bright lights, constant pain behind/around my eyes; waking up in the morning they will sometimes look purple, although I was not hit or sleep deprived.

- Feeling tired regardless of hours slept.

- Observed by girlfriend to experience seizures during sleep, night sweats were not infrequent at times.

- Periods of stress or anger exhaust me for hours, often leaving me sore and physically incapacitated, sometimes inducing the aforementioned neck pain.

- Racing heartbeat, sensations of giddiness or "punch drunk".

- Greatly reduced cold tolerance, being a northwestern Canadian, it was nothing to consider -10c to be "sweater weather". Now it can be -5c and my body is chilled to the bone; my extremities sting like I have frostbite.

- Very poor circulation, overall low body temp, tingling sensation in hands and arms.



My girlfriend back in 2010 was concerned I had addison's disease.

I'm not quite sure what it is, however I am now getting to the point where slight bouts of illness send a great many of those existing symptoms spiraling out of control for extended periods of time.

It really doesn't feel bearable anymore, I've lost work as a result.


Outside of not really knowing what is wrong with me, I have dealt with a string of doctors who have been less than helpful to put it mildly.

The only up-side is that I am now under the care of a geneticist thanks to my girlfriend, and he has voluntarily agreed to do a chromosomal micro-array.

The only problem is that is going to take about eight months, and I feel like absolute crap.

My regular doctor is being very weird about this whole thing; she acknowledges that I am quite sick, but she won't do referrals, and won't do any more tests.

She offered to write a note telling my employer that I need to work reduced hours but there's no way they were going to accept that.

The only reason I'm seeing the geneticist is because my girlfriend is his patient and she asked him if he would take a look at me.

Normally it would take a long time to get a referral, but he apparently thinks there's something wrong, but isn't quite sure what it is.


Is there any likelihood I can convince him to pursue Addison's disease as a possible cause, or at least get my hormone levels checked?

Honestly, at this point the only other thing that seems to explain the dehydration type-stuff is Sjorgren's syndrome, and I'm absolutely terrified of that being a possibility.
I'm sorry to hear that you are having to live with all of this. You really have a lot going on. However, it sounds like you aren't getting the right medical care, attention, testing, etc. First and foremost, I would find yourself a new doctor; someone who will take you more seriously and refer you to the right Specialists for appropriate testing, etc. In my opinion, this is really where you need to start.

You have so many different things going on, that even if you don't have full-blown Addison's Disease, I would imagine that you have some degree of Adrenal Insufficiency which ought to be treated with steroids. Many of your symptoms and stresses would be HUGELY helped by cortisone therapy. You absolutely need to see an endocrinologist to be tested for both your adrenal function, as well as for diabetes (the thirst and constant urination are big indicators)

Dehydration is a most common symptom of weak adrenal function, and you listed many others which are also often signs of AI: weight loss, inability to tolerate cold, inability to handle stress, exhaustion, erratic moods, inflammation in the body, stomach issues, etc.

I am not a doctor, but I've lived with Addison's for 8 years (probably longer but diagnosed 8 yrs ago), as well as digestive problems, blood sugar problems, sleeping problems, mood problems, etc. and I know that if you have weak adrenal function (i.e. - an inability to tolerate any sort of stressor in the body, whether physical or psychological), then many other aspects of your general health; body & mind, are greatly effected. If your adrenals are not producing adequate amounts of the stress hormones your particular body needs, then all of those "other" conditions (that you mentioned) take flight!

Again, adrenal hormones help your body combat stress. You've got to start with adrenal support before tackling all of the others, as often the others are more easily resolved, or resolve on their own if adrenal function is supported or restored.

There are a lot of critical lifestyle choices you ought to look at as well; diet, sleep, gentle exercise, etc. There's a great book, Adrenal Fatigue - The 21st Century Syndrome.. can't remember the authors full name, last name is Wilson. I HIGHLY highly recommend it. Dietary choices are crucial. Limiting or eliminating caffeine & sugars is the most important place to start. They both absolutely drain adrenal hormones. They may make you feel good momentarily, but you inevitably crash, and they plain and simply are wearing out your adrenal hormones.. leading to adrenal exhaustion.

And quieting your mind, trying your hardest to think positively (i know this can be hard when you feel so awful physically), but soooo important as there's a profound connection between mind & body, especially where stress-based illnesses are concerned. I am absolute living proof of this one. "Change your mind, change your life"... even when you feel like you're on death's door.

Okay my friend, I'll get off my soapbox. But please try to get better help. I know it's out there for you .. you just haven't come across it yet.

Keep the faith.

Sincerely,
Mollie
First of all, Get yourself another PCP fast. If your Dr has a problem with a referral at this point, forget that.

You should not and do not have to wait to feel better. Everything you've described sound's like textbook adrenal exhaustion and you could feel so much better on the right regimen without tons more testing. Just be seeing a knowledgeable hormonal Dr in your area that would start you on a low dose of cortisol for most of the problems you've shared thus far.

I too have been soooooo sick, no energy, muscle weakness to the point of being able to do things in like hour increments due to no ability to do more. Lightheadedness, temp is 95 everyday, salt cravings, not gaining weight, horrible hypoglycemia, sleep all night and still cannot get out of bed. Can't think, foggyheaded is an understatement.
Since I started 10mg of cortisol 2 to 3 times a day WHAT A DIFFERENCE>

I found out I was adrenal insufficient when my GYN Dr did a thyroid and hormone panel and started me out on armour and if you are treating your thyroid with any adrenal illness you will crash and burn BAD!.. I finally stopped the armour and I am almost feeling like myself again in a few days time only!!
You surely do not have to feel like crap for any longer than necessary..
Best to you friend..

[QUOTE=Youreguy;5124135]Over the last eight years I've been experiencing an increasing cluster of symptoms that seem to become mutually aggravated and alleviated.


Those symptoms include:

- Feeling incredibly dehydrated, my skin, eyes and especially my mouth. It is not alleviated by drinking although I feel compelled to drink as much as I can.

- Frequent urination.

- Having seisure-like muscle spasms and jaw clenching spasms after eating/drinking anything that is high in potassium.

- Recently having developed crippling neck pain that spontaneously occurs and leaves me without full range of motion for 2-3 days afterward, this has happened twice in three months.

- Muscles feeling weak and wobbly, especially in my calves, experiencing restless leg-type symptoms at times.

- Perpetual dizziness and fatigue, feeling foggy headed, unable to focus.

- Difficulty gaining weight regardless of caloric intake.

- Bizarre irrational bouts of temper, that is observed by others to be largely out of character, usually happening when my symptoms are at their worst.

- Inexplicable abdominal pain and bloating.

- Pain above my kidneys, especially on my right side

- Difficulty dealing with bright lights, constant pain behind/around my eyes; waking up in the morning they will sometimes look purple, although I was not hit or sleep deprived.

- Feeling tired regardless of hours slept.

- Observed by girlfriend to experience seizures during sleep, night sweats were not infrequent at times.

- Periods of stress or anger exhaust me for hours, often leaving me sore and physically incapacitated, sometimes inducing the aforementioned neck pain.

- Racing heartbeat, sensations of giddiness or "punch drunk".

- Greatly reduced cold tolerance, being a northwestern Canadian, it was nothing to consider -10c to be "sweater weather". Now it can be -5c and my body is chilled to the bone; my extremities sting like I have frostbite.

- Very poor circulation, overall low body temp, tingling sensation in hands and arms.



My girlfriend back in 2010 was concerned I had addison's disease.

I'm not quite sure what it is, however I am now getting to the point where slight bouts of illness send a great many of those existing symptoms spiraling out of control for extended periods of time.

It really doesn't feel bearable anymore, I've lost work as a result.


Outside of not really knowing what is wrong with me, I have dealt with a string of doctors who have been less than helpful to put it mildly.

The only up-side is that I am now under the care of a geneticist thanks to my girlfriend, and he has voluntarily agreed to do a chromosomal micro-array.

The only problem is that is going to take about eight months, and I feel like absolute crap.

My regular doctor is being very weird about this whole thing; she acknowledges that I am quite sick, but she won't do referrals, and won't do any more tests.

She offered to write a note telling my employer that I need to work reduced hours but there's no way they were going to accept that.

The only reason I'm seeing the geneticist is because my girlfriend is her patient and she asked him if he would take a look at me.

Normally it would take a long time to get a referral, but he apparently thinks there's something wrong, but isn't quite sure what it is.


Is there any likelihood I can convince him to pursue Addison's disease as a possible cause, or at least get my hormone levels checked?

Honestly, at this point the only other thing that seems to explain the dehydration type-stuff is Sjorgren's syndrome, and I'm absolutely terrified of that being a possibility.[/QUOTE]





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