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Chronic Fatigue Syndrome
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Posted 10/25/2006 4:36 PM (GMT 0)
I was slightly fatigued the day of my test, but not anywhere as bad as I was days later. It was strange that the day before and of my test, I was less fatigued... probably just coincidence. I'm hoping the tests show that even on my best day, I'm still way low with adrenal levels.

My neck has been stiff with limited mobility, but not sore in any severe way. I can turn my head 90 degrees to my shoulder after some loosening. I think that's the one thing I seem to notice I don't have while other people consistently mention the neck pain. I don't move my neck that much honestly while sitting at the computer through the day... so there's that.

Not sure what that means. Also, I ordered Adrenergize, Niacin, DL-Phenylaline, L-Tyrosine, CoQ10 and SAMe yesterday. I'll let you know if any of those seem to have any effect. Heh... if nothing, I'm learning a lot about supplements.
Posted 10/25/2006 4:50 PM (GMT 0)
Gotcha.


Yeah, I wouldn't say mine really sore either, just stiff, and worse in the mornings after waking. If I push my head back, and look up, it hurts my neck. I'm not sure if this is normal or not, but the stiffness definately hasn't always been. there.



Yeah, let me know with the supp's. I agree, knowledge is flowing in :)

Post Edited By Moderator (Admin) : 9/28/2009 4:01:15 PM (GMT-6)

Posted 10/31/2006 4:39 PM (GMT 0)
Should be any day now... I'm getting excited.  I hope this is the answer for you!
Posted 10/31/2006 6:43 PM (GMT 0)
They received it the 24th, so I imagine I'm still looking at early next week. I'm kinda already going under the assumption that it's the reason, but I'm more concerned with treating and seeing some turnaround.

I've got to be honest though, I've felt better waking up in the last couple weeks than I have in over a couple years. I still struggle during the day with concentration and focusing, but I'm making it through the day most of the time. I average one day a week that I can't take it and go home around 3:00 PM and take a nap for a few hours.

However, there are times when I'm feeling a few hours of being my old self... where I feel awake and it's like everything becomes brighter and I see colors and details around me. I love when I feel the veil of fatigue leave for a bit and remember what it's like to be without the weight of the fatigue. The only sad part is when I slowly feel the fatigue creep back into my brain and tire me out.

I'm still being (or at least trying to be) optimistic. Some days, I think the loneliness is my biggest hurdle. After my fiance left 5 years ago, I've kinda kept to myself - ugh.
Posted 11/3/2006 9:00 PM (GMT 0)

Well, I'm still waiting for my saliva test results.

So far, after a couple of weeks of taking vitamins and supplements, I've seen some improvement in areas such as (1) getting up in the morning routinely, (2) being able to focus somewhat better during the day and (3) not crashing as much.

However, I'm still struggling heavily near the end of the day.  Also, if I stop moving or sit down, like on a chair at home, I feel like I haven't slept for 4 days.  Right now, I'm pushing myself NOT to go home and sleep right now.

Also, based on Orion's mention of Cortef in his thread, I did some looking for articles about it and fatigue.  I found a couple of articles that may or may not be of any interest to others.  They were on sites that had some heavy advertisements and popups, so I copied the articles and put them on my website so you could read them without being bombarded with popups.  If there are other articles, I'd be interested.

Here are the articles.


How to safely & effectively use adrenal hormones and glandulars

Adrenal exhaustion and chronic fatigue diagnosis

Posted 11/4/2006 12:55 AM (GMT 0)

I'm still amazed at how much we're alike.

I too have more problems in the evening... right around 5ish... then it hits hard around 6.  I usually wake up a little bit around 10, but this is normal for AF.

I too feel the same way you do with the whole chair thing.  If I get up and move around, and stay moving... I'm ok.  When I sit down and relax, then I feel like I need a nap.  Weird huh?

I've done a lot of research on Cortef.  It seems to be hit or miss with people, as with any other script.  I would wait for your results, then take them to you PCP and ask to be placed on it.

Take care,

-O-

Posted 11/4/2006 11:48 AM (GMT 0)
Good morning, i find you so lucky(it's all a matter of perspective) yet you guys are really having a hard time. i went to bed a 1am and was up at 5 ;30. the pain wouldn't let me sleep. like you, i crashed 10-15 min later. my 1st pepsi's gone and i want to go back to bed. if i don't do 30 mg of dexedrine i'll sleep 2-3 hrs, an hour or so up, then 2-3 hrs sleep, an hour up,etc. withought the dexedrine i don't function at all, i barely have the strength to sit. even with it, on bad days i wouldn't dare go downstairs or outside if i'm alone at home(i have a caregiver 25 hrs a week but live alone). from november to april/may, i pass out 2-3 times a week, with many episodes of almost blacking out. i fell over onto my lit woodstove last dec and sprung some ribs, ripped the muscles joining the ribs and lung, and burned myself. luckly it happened when my caregiver was home. as for exercise, if i do 10 reps of ANY exercise(even laying on my back and pulling in my stomach muscles) for 3-4 days in a row, i'll spend a month weak like a kitten and sicker than a dog. i can't even go for a walk to the end of my driveway everyday, much less going for a walk on the road. on very good days(2-3 times this summer) i can safely walk 7 telephone pole lengths, and make it home withought falling. my ears ring something fierce; the worse i feel, the louder they ring. i'm too tired to go on, but once in awhile you should thank God that you're not as bad as you could be. it's really hard some days to smile, but i try my best. so smile, it could be worse!!!
Posted 11/6/2006 4:06 PM (GMT 0)
Seemed to be doing alright last week, but something happened Saturday where I started feeling more tired.  Then Sunday it was worse, taking me until around noon to get enough energy to get up and out of bed - and remained slow through the day.  Now, today, I'm even worse.  I got to work at 8:30 this morning and haven't been able to concentrate for the last hour and a half.  I'm now heading home to sleep, can't wake up.
Posted 11/6/2006 4:29 PM (GMT 0)
I have those days alot.

Did you do anything that would be considered "over doing"?  Like eat something bad, or workout a bit too hard, or stay up too late?

That usually brings it on for me.

Rest up, and feel better.  Your results should be here this week :)

Posted 11/7/2006 12:46 AM (GMT 0)

No, didn't really do anything that I can think of.  I just now woke up after sleeping 6.5 hours during the day.

Also, like Tru, I got my results today.  After reading Tru's post, I was scared as hell my results were going to be fine.

My DHEA was high at 10.4.

My Cortisol was the following:

 1.7 in Morning
 0.7 at Noon
 0.8 in Evening
 0.3 at Night

That's a relief.  Also, the day I took the test, I was feeling the most energy I had in months, so that's on my best day.  Now I just need to figure out what to do next.

Posted 11/7/2006 12:57 AM (GMT 0)
WOW... you're lower than me in the mornings, and afternoons. 

I still got you beat in the Evening and night, although... I don't think that something to be proud of :(

The next step, I believe is Endo.  I would make an appt, show her these results, explain your history, and ask for full blood work, ACTH, and see if he/she can start you on Cortef.  Granted, I'm no doctor, but from what I've been reading, on another website, Cortef appears to be the wonder drug for adrenal fatigue/addison's disease.

I hope I don't violate any policies buy posting this, but check out www.healthboards .com .   There is a thread in there on Addison's disease.  Look at some of the posts on Cortef....

Congrats dude, now let's have a contest to see who can get better first ;)

Posted 11/8/2006 5:36 PM (GMT 0)
Well, took me two days to get the energy to get back to work. I slept all Monday and Tuesday and finally was able to get going at 10:00 AM this morning.

I made an appointment this morning with an Endincronologist, my appointment is November 30th. I hope, pray, wish I get an open minded physician and not one who's going to discount my history and the ZRT test results.
Posted 11/12/2006 9:16 PM (GMT 0)
It's great that you got an appt so fast. I too hope that they can further provide some testing. The test you're going to want is a ACTH.

They'll draw your blood, then inject salien into your arm. This stings a little bit from what I've read. They'll then take your blood another 30-60 minutes later. The whole thing takes about 2 hours. This plus other hormonal testing is what SHOULD be done.
Posted 11/12/2006 10:31 PM (GMT 0)
Yeah, that's what I'm going to ask for. The whole blood thing gives me the creeps though... I'm not good with blood taking. I nearly lost my arm as a kid and there was a lot of blood in the accident, and ever since then, I about pass out from taking blood.
Posted 11/30/2006 9:07 PM (GMT 0)
Just got back from my endo appointment.

He was resistant to giving me the ACTH test straight-up, he wants to check a few other things first he said. I don't know if that's good or bad news, but he's being thorough it seems.

He's ordered at least 15 blood tests, including various thyroid tests (which I've had before), Cortisol levels, Vitamin D, and a few other ones I don't recall. They took 10 vials of blood - so they're definitely doing a lot of tests. I know at least half of the tests though are ones I've not had before, so that is good.

He also said I appear to have an enlarged spleen so I'm having a ultrasound scan tomorrow morning at 9:00 AM to have that checked.

The only negative was that my next appointment isn't until January 2nd. He said they'd call me if something came up in the test results, but that the blood tests will take between 1-2 weeks for them all to be complete.

The spleen thing was interesting though. All in all, I felt at least satisfied that he didn't dismiss me with a "hmm, no idea" or "it's depression" response.
Posted 11/30/2006 11:06 PM (GMT 0)
Well, even though he didn't go with the ACTH, he atleast seems like he's running a battery of tests.

How did he respond to the saliva test?  Did he talk of replacement hormones being possible if your coritsol and others come back low?

Enlarged spleen?  Have you been checked for Mono?

Yeah, Endo's are hard to get in with.  I hate that.  Well, atleast the ball is running dude!

Posted 12/1/2006 9:19 PM (GMT 0)
Had the ultrascan this morning, and the woman who did the picture taking said she didn't believe my spleen looked enlarged, but that she wasn't the physician, so we'll see. I'd be willing to be there's nothing wrong with it either.

As far as the endo's response to me presenting the saliva test, well he was more or less neutral. He looked at it briefly and asked what lab did the test, and then after I told him ZRT from the internet, he said he'd need to verify the results with his own tests. I'm not sure how to read this endo, he was very untalkative and didn't give me a lot of information other than giving me the blood tests and then saying "let's see you back in a month".

A month! I was like "uh, do the blood tests take a month?" He was like "no, but I'll call you earlier if any of the tests come back positive". Well, that means to me I'll see him in a month. Perhaps I'm just all negative on doctors now (hard not to be) but man, throw me a bone here.

I told him I was eager to find some solution, but that after suffering for 5 years I could wait a few more weeks if necessary.

Not sure if I've been checked for mono, these days I'm not sure what I've been checked for and what not. I'm lost in a blur of tests. I do know though I haven't had a tetanus for a while. :-)

Yeah.. ball is rolling again, so that's positive. I'm sucking down some more supplements that are from vegetables, so I'm trying to cover my veggies that way.
Posted 12/1/2006 9:48 PM (GMT 0)
I don't know why, but I have a feeling my Endo will be the same way.  "Here is a lab slip, see you in a month".  I don't know why is so hard for doctor to be compassionate.  I mean, Our insurance is paying for the visit, but we pay for our insurance through our jobs, and we still have a co-pay.  And granted, we didn't go through the 8-10 years of med school and internship, but we're paying for a service and I don't feel like we're getting our money's worth. 

I'm going to be compiling a letter here soon to NIH.  I want to ask them to open up an investigation towards adrenal insufficency away from Cushings/Addisons.  I don't know how it will go, but atleast it's a try. 

I have my Endo in 2 weeks from this Tuesday.  I hope you get your lab work back by then.  I don't mean to look at you as the guine pig, but I'm eager to see what your results say, since we're darn near identical.

-O-

Posted 12/2/2006 2:22 AM (GMT 0)
Sparker, I won't let my endo run anymore test...maybe a cat scan, but no blood test. I'm fed up with doctors and there sorry blood tests. They think that there tests are everything. I will tell my endo to call that number on my lab results and consult one of the ZRT doctors. I won't let him give me an adrenal test or a thyroid test... I refuse. I'm tried of doctors duplicating tests. If he pays for it than he could do it!!

I bought a book for my endo to read...but if he doesn't cooperate I leaving with my book.

I spoke to my internist today on the phone and she told me for her to treat me she would have to run her own T3 test first, because she can't trust "some internet results." This is after I explained that doctors like herself order tests from this lab. I don't know why doctors are stuck in their old ways. She really upset me today. I finally got over the abdominal pain and today I had to deal with her negativity. I decided to detox myself...and it relieved my ab pain...no doctor helped me so I had to help myself. Four months of pain!

Sparker, just like you she would have told me to come back in a month or so too...if she has to run tests. It's sad...I did all the work I want help now!

I have all the darn symptoms and she needs to run her own tests still?! She even thought that I had a thyroid problem because of my symptoms, and she still needs a test?! She will no longer be my internist!! What is wrong with doctors these days?! They don't believe or trust anything if they weren't taugh it...and I don't trust them!

I'm tired of faxing letters because no one is listening to me(I never had to do this before)...and I'm tired of having to treat myself...and I'm tired of reading lots of books when I'm too tired to read. But I have to do it...if I didn't do it I wouldn't know what was wrong with me and possible ways to treat my illness. I think that I would have had a nervous break down by now if I hadn't learned so much about my illness.

I'm just realizing that the internist never mentioned my adrenal results...as if they don't exists. It's really said!


Orion, I sent you an e-mail weeks ago...it's long...sorry. :)
Posted 12/4/2006 7:11 PM (GMT 0)
Yeah, I hear ya.  I could write a book on how disgusted I am with physicians and the state of insurance.  I'm currently fighting Medica right now with the assistance of our State Commerce Department because I was told I would be covered at the Mayo for a series of tests and analysis... and then they later decided they wouldn't cover it, to the cost of $29,000 that I paid out of my pocket.  (End of venting now)

Every doctor I've met is not inclined to "learn" something from a patient.  I handed my ZRT test results to my endo and while he did glance at them, I got the impression he tossed them in the trash after he left the room.

I'm thinking like Orion that I'm going to need to set up another appointment with a different endo just to cover my bases.  I think sometimes I'm too nice.... when the endo said we'll see you in a month, I should have put up a fuss and said "Hell no.. " but then I'm worried that they'll get pissed and then I'll get worse treatment.

I think it's a problem with this disease we have.. where we appear more or less fine (on the days we have the energy to get up and go) but really inside we're desperate for anything.

Inside, I feel like I'll never get better.  I don't even think about the future much in terms of plans, etc.  It sure would be nice if a single physician would have enough empathy to say "We'll figure this out, don't worry!  Here's what we'll do.. and if that's not it, I won't give up on you."

I'm sorry Tru that you feel pain, which I thankfully don't, but I think we're all in the same boat of crippling fatigue and lack of energy.  I'm rambling now I realize, but I don't have anyone around me that understands so I need to spew my thoughts once in a while.

Posted 12/4/2006 10:16 PM (GMT 0)
By the way, I can say nearly definitely that the large assortment of vitamins and supplements I'm taking have not really helped my energy levels in any lasting way so far.

However, I did stop taking the prescription of Trazodone to get me to sleep and am instead taking Melatonin, which appears to be working just as well, so at least there's one positive element... but that's really grasping for positives at that point.

The other positive is freaking people out with the 20 or so odd colored pills I take through the day.
Posted 12/4/2006 11:23 PM (GMT 0)
I feel ya on the natural supplements part.  Everytime I take them, I wonder "Is this really doing anything for me, or am I wasting gas money?"

That's great about the Melatonin.  I've used that before too. 

I don't take things around co-workers.  I don't want people to know what's going on with me.  People can't handle or understand what they don't know about.  Their result is, "It's in your head" or "You're a hypocondriac".  I just keep my stuff to myself :)

Posted 12/8/2006 1:23 AM (GMT 0)
I appear to be on some sort of cycle of energy. My lifestyle doesn't vary much at all, but I've noticed that lately every 4 weeks or so I completely run out of energy regardless of my eating, sleep and stress levels.

I've spent the last 2 and a half days in bed, sleeping around 15 hours a day. Leading up to my depletion of energy, I noticed that my appetite goes completely away where I have to force myself to eat. Only tonight did I start to feel some energy again and also feel my appetite come back.

On another note, I'm calling my mom's endo tomorrow and set up another appointment since I'm not having a lot of confidence in the first endo I had an appointment with.
Posted 12/8/2006 3:40 AM (GMT 0)
Hello!! Guys!!! Wait a minute!! You're missing a huge part of the equation here, and I'm reading ALL the signs of it in your thread here. Sugar cravings often. . .VERY often. . .are indicative of candida overgrowth, and that is a MAJOR complication in CFIDS. PLEASE do yourselves a favor and take a look at "The Complete Candida Yeast Guidebook" by Jeannie Marie Marton and Dr. Zoltan P. Rona, M.D. This is one of the most important books in my CFIDS library, and I reference it all the time. There are several pieces throughout the book that talk about chronic fatigue, and the diet, though strict, is the ticket. . .it's helped me tremendously. It even includes recipes with all the foods you CAN eat, and they are delicious!! You don't have to deprive yourself. Stevia is an excellent sugar substitute often reccomended for candida, and after a while you will surprise yourself that you don't miss the foods you use to crave. That's because YOU aren't craving them. . .the CANDIDA feeds off of sugar and starch. In order to get rid of it, you have to starve it! You would be surprised how much damage this infection can do. . .including the muscle pain. I kid you not.

Good luck!
Posted 12/8/2006 12:56 PM (GMT 0)
This is a great recommendation, however I've tried this before. I've tried a cleanser for Candida and it did nothing for me.

If you have something that I can take that is a guarentee, then let me know.

Thanks!
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