Mystery Ailment - adrenals, thyroid, who knows?

SaveMeLetsRun wrote:

Hey people, want an update?

All of these came back negative:

-complete thyroid panel

-Epstein Barr virus

-mono

-lymes disease

-liver function

-chemistry panel

-cytomegalo virus

Joint pain seems to be getting worse, everything else roughly the same.

Have tried going gluten Free?? Sounds like Celiac Disease with is comprising all your systems. Also while you TSH is normal - your T4 is too Low. Which is due to gluten. Everything you describe is classic gluten issue. Look into book Gluten Free Edge. Athlete went from awesome athlete to barely being able to run down the block until he went gluten free. Worth a try after Drs and labs have not gotten you healthy. Best of luck!

Haven't been here in a while, forgot to check back in. Thanks for all the responses that keep coming in. I will respond to as much as I can.

I don't think so...We feel as though symptoms would be getting much, much worse over the past 18 months if this were the case.

I appreciate this response, since this has been my line of thinking throughout for the most part. I have "overtrained" before and felt the effects and been anemic, and yes, a few weeks off got me back and feeling great. I also agree there was probably some overtraining but compounded with something else that was going on.

I did notice some muscle loss when I was still training through it, and I put on a bunch of weight (fat; I was noticeably less lean than usual). And now, I still try to lift and do some other things but I get really tired easily and feel like I can't even put on any muscle if I really tried to.

quote]vu2max wrote:

I admire your persistence. Keep fighting and you'll win through somehow.

Is there any type of physical exertion that makes you feel better at the end of it than you did at the beginning?

Suppose I'm your coach, and you arrive at workout feeling terrible, and it's clear that it would not be in your best interests to go to lactic limbo. Therefore I ask you to take the next 60 minutes to do whatever you can to make yourself feel better physically.

Some people I know would jog very easily for an hour. Others would do strides (stride out, walk back, stride out, walk back). I know people who really enjoy doing drills where they "bounce" (eg A-skips, B-skips), these seem fun to them. Some people lift. Maybe an hour of stretching alone in a quiet place with no distraction. Of course it's possible that the best thing might be a 60-minute nap, or something passive like sitting in a hot tub or sauna.

What would you do, right now?[/quote]

I would most likely do yoga or something similar. Exercise literally just knocks me out. It feels "good" to go out and jog for a little bit since it's a break from the usual, but I hurt physically and I get exhausted quickly.

All is the same, no improvement. I run about 15-20 minutes 5 days a week (have a knee injury and still trying to figure that out, but can run a little bit) although it's extremely hard to muster up the motivation to even go out and do that.

Sleep is truly awful. I have not woken up feeling refreshed in at least a year. This is a typical day now in terms of sleep:

4:00-6:00pm - feel really tired, like I could go to bed right there

9-10:00 - start to "wake up" and can't shut down to go to sleep.

Usually up until at least 1 or 2, finding things to do, not tired.

When I fall asleep I usually wake up at last twice, usually more often than that.

Late morning typically dead tired and need a nap. I find myself biting my nails and grinding my teeth often. Anxiety. REPEAT. ENDLESS CYCLE.

I'm thinking about trying to get on some kind of sleep aid like Ambien or Lunesta - something that can knock me out and get restful, uninterrupted sleep and still wake up on a schedule. This used to not be the case. I would sleep soundly almost every night.

No. I drink one cup of coffee per week at church.

Some have suggested celiac, others say no way. I have definitely considered the gluten free approach, and am currently trying to plan out and transition over to that to see how it goes. My only question regarding that is, wouldn't that have been present my entire life? I'm willing to try anything though, so I will surely give it a shot. Not easy, but worth it.

Again, post-exertional malaise, sleep disturbance, and neuroendocrine abnormalities are hallmarks of this illness. Quitting gluten and dairy (and other things) will help, but they won't cure you. The sooner you see a specialist (not just an immunologist or infectious disease doc) the better. Please read this:

http://www.meassociation.org.uk/?p=7173

Sagarin wrote:

Again, post-exertional malaise, sleep disturbance, and neuroendocrine abnormalities are hallmarks of this illness. Quitting gluten and dairy (and other things) will help, but they won't cure you. The sooner you see a specialist (not just an immunologist or infectious disease doc) the better. Please read this:

http://www.meassociation.org.uk/?p=7173

I don't mean this in a snide way or anything, just genuinely curious. What will a CFS specialist do? I have yet to hear about things that "cure" this condition, but you mention that gluten-free and dairy-free diets will help but not cure... insinuating that there is a cure out there.

As I said earlier, just facing similar problems as the OP. Feel like I couldn't gain muscle if I tried and feel generally lousy and weak/tired all the time. Wondering if there actually is a solution out there if it is indeed CFS.

That guy sounds like he's advertising for that site or CFS/ME. Seriously guys, if you didn't have any health problems before you started heavy training, then why do you even consider you suddenly have this illness? I have the same symptoms as ya'll, fatigue, sleep, terrible motivation, depression, excessive anxiety, sensitive to stress. They are slowing getting better because I have slacked off everything, refocused, and kept all stress down. You're more than welcome to go get tested for whatever you want to but if you're where I am, I'm tired of seeing doctors and getting nowhere. Rest and time have helped me more than all 4 of my doctors.

vu2max wrote:

What would you do, right now?

SaveMeLetsRun wrote:

I would most likely do yoga or something similar. Exercise literally just knocks me out. It feels "good" to go out and jog for a little bit since it's a break from the usual, but I hurt physically and I get exhausted quickly.

SMLR thanks for the reply.

Why not then do the yoga?

It seems to me that if you wanted to maximize your chance of getting back into competitive running shape, you would do the following four things:

1. Give up all hope of ever returning to competitive running shape;

2. Learn as much as you can about human physiology in general, and your physiology in particular (might you consider going to Medical School?);

3. Put your considerable industry into doing the "yoga or something similar" that makes you feel better.

4. Continue to do the things you love to do.

Maybe running for you must be past tense. On the other hand, life often admits of second acts. Do you know the story of Jack Foster?

Good luck!

Hey man, any progress? It's been 8 months for me, and I just wonder if there will ever be any light at the end of the tunnel.

18 months for me. I eat gluten free now, pound vitamin c and b6, along with some other stuff but the typical adrenal symptoms remain.

-cant "wake up" until around 10am

-3-5pm feel like I need to sleep

-8-10 get my second wind and get wired

-plus all the other sh!t that won't go away, dead tired and pain, ache ness all over

I take a sleep aid just so I can fall asleep by 11 or so, and I fin that if I can do that I can generally only wake up once or twice a night and actually feel decent (average) upon waking. I also try to tire myself out as much as possible to try and sleep better.

F my life

SaveMeLetsRun wrote:

18 months for me. I eat gluten free now, pound vitamin c and b6, along with some other stuff but the typical adrenal symptoms remain.

-cant "wake up" until around 10am

-3-5pm feel like I need to sleep

-8-10 get my second wind and get wired

-plus all the other sh!t that won't go away, dead tired and pain, ache ness all over

I take a sleep aid just so I can fall asleep by 11 or so, and I fin that if I can do that I can generally only wake up once or twice a night and actually feel decent (average) upon waking. I also try to tire myself out as much as possible to try and sleep better.

F my life

That is demoralizing. I'm exhausted trying to figure out what is wrong with me, and like I said I am only 8 months in with my symptoms. I don't doubt that my issue is endocrine related as well, but I'm not so sure its adrenal insufficiency in my case. Did you get your cortisol checked?

I have so many of your symptoms it really is weird, although I don't have much trouble sleeping. Usually I am so exhausted by the end of the day that I knock out for at least 10 hours at a time, but like you said, I can't really get myself tired enough to go to bed until 11:00pm or so. I'll wake up around 8 or 9 and can't really get going until around noon. I'll have a couple solid hours of productivity and then feel too exhausted to move around 2-5. Same thing as you with the second winds coming later in the day and everything.

My body aches all over, head hurts constantly, postural hypotension, erratic pulse (sometimes low and sometimes gets incredibly high with no effort), the thought of running makes me tired. When this all started, I would drive to a nice location to run, stand around at the trailhead, finally get myself going for a couple miles, only to have to walk back to the car. Everything came back normal (blood work, lyme, EBV, Rickettsia, saw a cardiologist, infectious disease doc, the works... everything short of an endo). Running wasn't particularly taxing at the time of onset, although other life events contributed significant stress. Are you done seeing doc's to try and rule out everything? Something like a pituitary adenoma or other endocrine/brain issue? I haven't run in months and my symptoms seem to be getting worse, which is what concerns me.

Best of luck, B.W.

I'm bringing this ish back to the top. Almost 2 years now and I still feel icky for the most part. Not good at all.

I sleep decent now, but still have trouble getting out of bed/getting going.

Stomach pains, headaches,

Body just aches and pain in legs is still terrible. Fatigued, tired and miserable.

Weird dry skin spots, weird almost constant twitching in my left eye.

A whole host of thyroid related issues. Like, a ton.

Thyroid tests - 9/12

TSH - 0.94

fT4 - 0.77

Thyroid tests - 2/13

TSH - 1.019

fT4 - 0.91

fT3 - 3.6

I've been searching to see if these mean anything. In the time between these tests I began to feel slightly better overall, and my numbers went up a little bit...coincidence? I don't know. Maybe I need more T4. It seems I have plenty of T3, but maybe not enough T4 to draw upon? Possible hypO or hypER?!

People may frown on it, but I am thinking of self medicating with T4 or NDT since no doctor would ever prescribe it for me.

I am dying.

Hypochondriac'itis.

YES! Positive contributions to the thread. I love it.

J.R. wrote:

Hypochondriac'itis.

Did you run for Ohio State? I can't find anyone on the team who ran 14:25 indoors in 2012...

I don't care that I am a pariah or otherwise get criticized - GO SEE AN M.E/CFS SPECIALIST.

You're suffering from doctorallergyitis.

Get away from all medical help and procedures immediately.

Lupus?

Complications from mono?

Do you have rapid heart rate, hair loss, goiter, dry eyes, bowel issues?

You should NOT exercise. If you have ME/CFS or are headed there, you likely have diastolic dysfunction with preserved ejection fraction (greater than normal ejection fraction) and a low cardiac index. Of course, your cardiologist will prove useless, as they do not see this in your age cohort. Do a google search on why exercise is contraindicated in this illness. You need to rest, sleep, and eat and drink extremely well if you have any hope of coming out of this. The first few years are key. Beyond that, your chances for a recovery are slim. If you need sleep meds, that's fine, but try to stay away from drugs that are habituating, even addictive, like the benzodiazepines.

Read this:

http://www.cfids-cab.org/MESA/me_overview.pdf

Eat free range grass fed meat, increase good fat consumption, and lift weights. Cut down on sugar and processed foods. Repeat.