adrenal fatigue/low cortisol ... non typical symptoms? after CFS?

Discussion in 'Fibromyalgia Main Forum' started by ellikers, Sep 18, 2008.

  1. ellikers

    ellikers New Member

    Hello all!

    I just got my adrenal stress index tests back (testing my saliva cortisol levels 4 times a day for a 24 hour period) ... looks like I have adrenal fatigue. My numbers are low for morning til 4 PM, and after that they are low normal.

    So here is my confusion:
    - I do NOT have fatigue (anymore, see below)
    - I have tendency for panic attacks and racing heartbeat in the evenings
    - I don't fit a lot of the symptoms of adrenal fatigue
    - I am petite and thin, don't gain weight easily (it's actually hard to gain weight)

    How could I have adrenal fatigue?

    I recovered from CFIDS and have been flare free for over a year now (almost 2) and I don't feel like my energy is a problem (I went to the naturopath, for help with severe on and of belly pain that no other doctors had helped, and she recommended this test). My tendency towards panic, high energy personality and metabolism before and after illness made me always think my cortisol would be too HIGH if anything.

    Do other folks have adrenal fatigue with non-classical symptoms?

    Maybe it's possible that I recovered from CFIDS, my immune system is working again, but having CFIDS changed my idea of what a "normal" energy level is, and really I have been healthier but not as healthy as I could be.

    I'm also wondering .... did CFIDS cause this? Was this around the whole time since 2005 but no one knew because no one checked it? Or did recovering from CFIDS and other stressors in life cause this after CFIDS?

    I'm just confused and was wondering if any other folks on here could speak to cortisol levels that are low but having symptoms that don't seem to match up.

    [This Message was Edited on 09/18/2008]
  2. PainPainGoAway

    PainPainGoAway New Member

    I have a neighbor who has Addison's disease. Have you ever heard of that? He experiences severe belly pain, panic attacks that come out of no where, and is on the thin side. If he gets dehydrated or doesn't get enough salt, he gets pretty sick. From what I can see, he's pretty active! He told me they tried to tell him it was anorexia nervosa before they figured it out!

    This may seem a bit on the extreme end, but maybe some research on this might help you figure things out. There are more extensive tests they can do to see if there is a block in your hormone levels.
  3. ellikers

    ellikers New Member

    painpaingoaway thanks the response! Yeah, I have heard of Addison's but I'm pretty sure mine is mild enough that it doesn't qualify as that disorder (my cortisol was tested via a blood draw back in December and was at normal level that one time which ruled out such a major disease). Although your friend does sound a lot like me ... when I'm stressed at all, even a minor grade, I lose weight immediately. I'll remember to keep Addison's in mind when researching, thanks! :)

    anchorholds- Great info, thanks for posting. I'm interested in the stages that the doctor you mention describes. I agree that my way of being may contribute to adrenal fatigue ... I'm energetic personality wise, I wouldn't call myself high strung, but others might ;) but mainly I'm very empathetic and intuitive and sensitive, in many ways ... physically, mentally and emotionally. I pick up on things very easily and it's not surprising to me that that would "wear me out" I just was surprised that this was the way! Wow. I've gotten very good at acting in good moods when I'm in pain, exhausted, hungry, etc and good at coping with intense situations (people telling me about violent past abuse, etc) and I think that being able to cope like that has worn out my system.

    Thanks again for your insights. Especially the info you both shared about panic attacks is making me understand this all better. I'm going to have a more indepth conversation with my naturopath tomorrow and hopefully get some answers to my questions and make a treatment plan.

  4. ladybugmandy

    ladybugmandy Member

    could the CFS have caused some damage to the adrenal glands?

    just guessing...

  5. xchocoholic

    xchocoholic New Member

    I hope you don't mind, but I have an idea ...

    Your meds / supps that you took were enough to overcome whatever digestive / malabsorption issues you had for awhile, but not anymore. Our guts only get worse if we don't work to heal them.

    HTH .. marcia
  6. sunflowerxo

    sunflowerxo New Member

    Hi, I also had my adrenal saliva index done a month ago and after fighting intense FM pain for the last 1-1/2 years following a back injury 3 years ago, I too now have adrenal fatigue terribly. My a.m. cortisol was very low and my afternoon 4:00 was very high, no wonder I wasn't sleeping much.... My naturopath has put on natural adrenal supplements to help and after a few doses I seem to be regaining some energy again. Not to go run or do anything strenuous but enought energy to get through my workday....some of the pain has subsided but still have my bad days... Worth checking into for anyone that wakes up and feels exhausted upon arrising. I think she is helping me so far only 3 months with her....I'm crossing my fingers. I can't seem to shake the weak leg thing though, very difficult there....
  7. ellikers

    ellikers New Member

    anchorholds: Thanks for the link! I look like a stage four, but I'm not exhausted or experiencing really bad symptoms like they mention someone would at that stage. And my levels never went above the normal limit on the day I was tested .. good info to help me figure this out though. :)

    Ladybugmandy & sunflowerxo: It completely makes sense that chronic pain would have something to do with me developing this, and all the stress that comes with CFIDS (and fibro symptoms that I had). I think that it is possible that I developed this coming out of CFIDS, or that CFIDS caused this in my body .. but I find that somewhat confusing since that would mean I was more fatigued before I had adrenal fatigue. I'm just not sure about cause and effect ... :)

    Cat: I've been thinking more about this the last couple of days and I realized I am feeling irritable and easily frustrated and stressed, I just do a really good job taking a deep breath and COPING with it- which is probably keeping the cycle going. For example, I get can get so randomly frustrated trying to get a sweatshirt off that was stuck on my shirt underneath (only struggling for a couple seconds, not that big of a deal) but I nearly SCREAMED in my car I was so overwhelmed by it- for me that is an WAY disproportionate response for a minor annoyance. And I'm not remembering things like that happen a LOT. I don't lash out at people- because I hold all that intense feelings in to express differently, which probably is stressing out my body still.

    xchocoholic : You may be on to something ... I think my recovering from CFIDS was due to all the other great changes I made in my life, and supported my body so it could mostly climb out of the hole it was in, but now things are still "off balance." I'm still trying the change of diet, although less severely since I'm still feeling sick in my gut (swung the opposite direction from other digestive problems, pretty much full blown IBS now) but if I continue feeling sick with digestive discomfort etc I'm probably going to go off most of it, I just don't want to stress my body out any worse.

    I can't quite figure out how to do anything differently in life (besides starting the adrenal supplement) ... because I already use such good self-care and I'm getting out of my emotionally stressful job (working with highly frustrating and emotionally overloading people) it's just going to take a couple of months.

    I'm also wondering if my AD has been masking new sleep problem(s) ... because I've been taking the med at night (it's very sedating), I haven't been able to notice any changes with a normal sleep cycle. Case in point: yesterday I worked from 7:30AM-12:30, then ran errands all over town for the entire rest of the day- went to appts and meetings and had dinner with a friend and stayed up talking until 12:30AM. LONG DAY. Got home, was so REVVED I had a hard time falling asleep and had to have both my AD and some xanax kick in to help knock me out (and only got 8 hours of sleep until I woke up naturally).

    I think my body is still in flight or fight mode. I don't know how else to turn it off. Yesterday was a fluke by the way, I NEVER had days like that, my schedule is usually much more mellow ... I was tired a little mid day but then somehow pulled through with all the energy I needed.

  8. ellikers

    ellikers New Member

    Thank you anchorholds! You rock. :)

    I am taking a multi-vitamin and mineral supplement drink (EmergenC packets that have extra C) and I'm on B supplements too. :)

    Right now I'm trying to plan out some intensive self-care time ... like scheduling a day where all I do is go be outside (very good for me), get a massage, eat foods I love (and are good for me) etc .... and also mini-ways to do this throughout the week ...

    Talking on the phone is a major helpful thing for me- that's how I get support from my friends that live far away, etc. But I think other phone calls, ones that are not fulfilling like that need to be limited- and now I have a tip to help me do that. :)

    Oh, and my new motto is "no more toxic people" seriously.
  9. JoFMS

    JoFMS New Member

    Hi Ellikers,

    I have stage 5 adrenal fatigue and do have exhaustion and weight loss amongst other things. I lose weight when I get stressed and have also just found out I have a leaky gut form a stool analysis too. I lost 10kgs in one year.

    I'm just wondering when you say you don't have many of the symptoms whether it's becasue of any meds you are on - I wasn't sure from your profile if you are still on antidepressants or other meds but perhaps this could be masking some of the symptoms?

    I know myself I feel far better than I did and it's thanks to starting low dose cortisol and the following supplements:

    Cortisol (2.5mg 8am, 7.5mg 11am, 5mg 3pm, 2.5mg 7pm)
    Pregnelolone 500mg twice a day
    Biotin 2000mcg twice a day
    Vitamin B5 500mg twice a day
    B6 50mg twice a day
    Vit C 3g per day
    Vit E 1000iu per day
    Adrenal support (includes amla extract)
    General B complex

    It's funny how I know myself for a long time I didn't feel like I was really stressed and always felt I was kind of laid back but then I came to a point that I realised that I took on a lot of other peoples problems and although I didnt' necessarily feel 'stressed' then it was affecting my body.

    I'm really pleased I found this out now before I got worse but I do know the above including low dose cortisol is really helping me. I react much more calmly to things and am gernerally 'at peace' if you know what I mean within 2 weeks of starting the cortisol.

    I'm glad you had the stress index test - I belive it's so important. Take your average body temps 3 x a day so you can see what supplements help make your temp stable at 37C.

    The other advice you have been givon on here I agree with too and think its so important to make sure we are functioning at optimal levels to stop us going further into the 7 stages of adrenal fatigue.

    Our adrenals are supposed to recover easier bewtween 11-1am and 6-8am so its good to make sure you get deep sleep between these times too.

    As you are aware, people's cortisol will be individual and it seems mine is more normal in the morning and I need more later in the day.

    I belive our adrenals can make a full recovery but it can take 9 months or more with supplements, poss low cortisol and it may be possible that you were in later stages before and have recovered so now in the earlier stages?

    Anyway good luck, it sounds like you're doing well though.
  10. ellikers

    ellikers New Member

    Jofms: You make a REALLY good point about my meds ... since having CFIDS I've still been on the anti-depressant to continue helping with my sleep, and I've also thought "huh, could this be masking my issues?"

    I think that the med could be "forcing" me to get sleep at night, and deep enough sleep, to fend off noticeable BAD fatigue. And other things could have been fighting the more noticeable symptoms off (my vitamins etc).

    I've been paying more attention to how I feel as of late and I realize I'm having also having more wide range muscle cramps/spasms/pain .... in my hips, low back, shoulder blades, around my pelvic floor, legs, like I haven't had in a while ... it started creeping up on me more slowly and it's gotten to the point where I realize I have actual trigger points again. :( Obviously chaos in my life does not bode well for my body.
  11. ellikers

    ellikers New Member

    Sooooo ... interesting news ... I ordered a copy of ALL my labs and my health records from my old doctor (trying to create an indepth personal health file for myself) and guess what I found?

    My cortisol level was HIGH last December (!) NOT normal like I was told. It was 15.3 at 5:00 PM when it should have been in the 2-12 range (not to mention the test I just had last month showed my level at that time of day at about 5!)

    Interesting huh? I think that is a clear indicator that I was in another stage of adrenal fatigue when the cortisol was heightened.

    In other news, I was actually able to take a nap today- for some reason I have a really hard time relaxing enough to fall asleep when I'm tired during the day (I think I even struggled with that some during CFIDS) but today I took at several hour nap. I take that as a good sign that my body is starting to rebalance itself!

    Still unfortunately having a flare of muscle pain/spasms and tension ... fibro like symptoms ... I think it's all the stress I'm under. Wish I could actually decrease the stress, but it's all stuff I can't hurry up or run away from. I'm just doing my best to cope.
  12. JoFMS

    JoFMS New Member

    Hi Ellikers,

    Great you managed to chase that up. I can't remember if you said you were taking your temperatures daily at 9am, 12 and 3pm? It really is a great indication of how your adrenals are doing and how to supplement them and what works. If you don't take them I really would suggest it - it's one of the best htings I have ever done for my health! The optimal is 37C on average. Google Dr Rinds temperature graph.

    I keep a log daily just on a word document of symptoms, everything i eat, what i did that day sos I can see what has made me feel better or worse.

    I have noticed lately as I'm away in Spain at the mo and was only able to shower instead of bath that as soon as I had an epsom salt bath - using 1/2 - 1 cup of epsom salts that I immediately felt much better and less achy.

    The cortisol and supps are really helping me and the pregnenolone too which ~I believe is a precursor to DHEA and

    Unfortunately, I also live in a very stressful environment and am a worrier which means things never leave my mind if I'm worried. However, the cortisol and supps really help me not crash and ~I think over time they will heal.

    Wish you all the best and keep us updated, we just have to be as proactive as we can and know there is light at the end of the tunnel and when we put all the pieces back together again - one day we wont know ourselves!!!
  13. spacee

    spacee Member

    It involved blood and 24 hour urine test.

    I just had it done because I felt I didn't have enough serotonin and possibly dopamine in my body. Yet I can't take AD's or the natural 5HTP cause it raises my neuropathy level to the point I am in a fetal position in bed.

    This is what came back:

    Serotonin Low
    Dopamine low
    Norephrinine HIGH

    My twin is a medical technologist and she got out her books and said, "hmmm, looks like you fight or flight is turned on. Then she looked a bit more and said "You have adrenal fatigue".

    I just got those labs yesterday in the mail FROM my doctor. I called his nurse and asked what I was suppose to do with them. Get this "Take them to your doctor". I said, "Dr.__ IS my doctor, I don't have another one." So she said make an appt and come back in. Sheesh.

    So, I have no answers but thanks for starting the thread and those who have posted.

    Granny27 knows a lot about adrenal fatigue. She had been telling me to get tested. I bought a book but I can't understand it very well. I do remember it said to drink water with a little salt in it. That seemed to help some.

    Thanks again to all.

  14. ellikers

    ellikers New Member

    Jofms: Yep, bathes are my saving grace! I forgot about them for awhile and then I started feeling more stressed out and achy and tense so I restarted them .... SOOOOO much better afterwards! I'll be using a lot of water from now on I bet (sorry environment!)

    Thanks for the reminder about the temperature ... I started doing that when the naturopath thought I had wilson's temp. syndrome (which I firmly think I don't) so I stopped taking it a couple times a day because I figured that wasn't my issue. My temp was all over the place when I recorded it (during a 10 day span it would go anywhere from 97-99 in a day, but that might be normal? I'll restart regular monitoring of my temp.

    Good luck spacee in getting some good answers and treatment for adrenal fatigue! We can share ideas here if that helps at all. :)

    Another thing I've noticed- I went without my AD last night (forgot to refill the scrip, it's not dangerous when I do that, I'm very used to this med) BUT I DID NOTICE that I woke up around 4 AM or earlier, had a hard time going back to sleep and had really nightmarish dreams ... and I would wake up convinced some stranger was in my room. This is not typical for me (years before when I would go off this med before CFIDS, this is NOT what my sleep as like). More indications something is off balanced in my body.
  15. ellikers

    ellikers New Member

    ... pondering more and more if maybe my CFIDS is gone but the fibro lingers ...

    I just looked up the map for tender points and checked mine and I was able to find the spots just by poking the area AROUND them til I found a spot that really hurt, and sure enough, it was one of the "tender points."

    At first that makes me feel extremely upset, like my recovery is being ripped away from me ... but then another part of me says that I am a lot better than before, I'm VERY functional, have nearly no fatigue (just normal tiredness), no viral symptoms, my immune system is good ...

    Maybe this is just something that I need to treat differently. I haven't had my fibro symptoms treated specifically, I just had the rest of my "increase wellbeing" plan help them as well.

    I have a massage scheduled for Saturday- YAY!

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