Just so tiredzzzzzzzzzzzz

ethan508

New member
I've had a problem with dozing off at work (and church and home) lately. Fortunetly I've been doing CAD at work, my co-workers and boss seem to not notice, and I've been able to stay late to make up the work missed during my naps. But it is getting frustrating. My cough hasn't increase, my last PFTs were right were they were previously, I do have a bit of seaonal allergy that seem to be well controlled with Claritin. I've noticed my doze offs happen an hour or so after breakfast or lunch (today it was both) plus one riding home in my carpool. I'm kind of wondering if blood sugar could be a problem (I haven't done an OGTT for a couple years) or maybe just a slight flare-up.

Any of you with CFRD have 'fatigue' as a major symptom? I'm just a little stumped on why I can't stay awake (work is no more dull now than it was in years past).

P.S. I'm sleep fairly normal hours at night (10pm to 5:30AM) and nothing in my lifestyle has changed much (maybe not exersicing with the same frequency I have in the past).
 

Melissa75

Administrator
Have you tried going to sleep earlier? On any given night, I get 0.5 - 1.5 hours of sleep more than you do. I'm not happy about it--I noticed an uptick in sleep need over the past couple of years, and it eats into time that I value. But I can't undo it.

Apart from trying to get more sleep at night and calling it an aging and body working hard thing, I agree that the OGTT is probably a good idea too.
 

imported_Momto2

New member
Yes, fatigue can be a major part, at least for me. I sleep from about 10pm-7am, then usually take a 1-2 hour nap during the day. Often I am still quite tired. Granted, my sats have dropped recently and my FEV (59 to low 40's) so I'm sure that plays a major part. But starting about 6 months prior to being diagnosed with CFRD, I noticed the fatigue.
 

Rickengelage

New member
YeS!

You should definitly get an exteneded diabetes test asap.
I have been very tired and fatigued for a year.
Then my lung functions and weight started dropping
They didnt know why.

Then i went to a different hospital for a second opinion and they did an extended diabetes test with an Ipro2 sensor.

They found out i do have Cfrd and i now get treated with insulin, i feel alot better now!
 

LittleLab4CF

Super Moderator
Hmmm. A few thoughts beyond the usual suspects. My testosterone and all my stress hormones like cortisol and other adrenaline like hormones began to drop in my early thirties. Cortisol peaks about 7am. That morning coffee beats cortisol back and for a while the desire to sleep is chemically negated.

CF has potential to influence all glandular secretions and organs like the skin, lungs, pancreas and the liver. True glands, those of the endocrine system transmit hormones via mucous secretions so the thyroid, parathyroids, pancreas, adrenal glands, testes/ovaries and the kidneys have cells that produce aldosterone all utilize mucus to carry the hormones, usually directly into the blood.

Since you suspect the endocrine function of the pancreas, maybe a work up by an Endocrinologist would be smart. By the very nature of CF, a thousand small battles are going on. Whether it's poor cooling, infections in every gland and organ I've mentioned, maldigestion, malabsorption or stress and pain, our metabolism is being messed with.

My neighbor and dear friend had a large stomach ulcer perforate about three years ago now. The trauma was pretty bad. She had a wedge resection done to repair her stomach and she had her insides washed and scrubbed. She still developed peritonitis but left the hospital "healthy". Things aren't all right and she went from a slender 5' 9" at 160 pounds to a final low of 99 pounds fully clothed.

About a five weeks ago she was unable to control her pain and had about two days late getting to the ED. She was incredibly dehydrated from non stop vomiting. Anyway, my friend "Tina" is now devoid of any body fat, I'm not exactly heavy and can drop from 145 to 120 pounds without my forced calories. Tina, and I are both easily made cold, for seemingly good reason. When she was so sick, I took care of her except when her husband was home and awake.

The surprise for both Tina and me was body heat. As I endlessly massaged her sunken pelvic girdle and other bone-muscle connections, an incredible amount of heat was radiating from both of us. My hands are always cold and clammy. It turns out this is a major heat exchanger. Within seconds, my hands were dry and just holding my hand on her created a deep heat, equal to a heating pad.

With our natural hypermetabolic state, we can possess a substantial metabolism and endocrine function tests will say there's no problem. I'd look into low testosterone or indications of adrenal fatigue, abnormal cortisol levels and get a baseline test if for no other reason. My doctor, and he was a good doctor, couldn't get past the law of averages when I began complaining about the potential of low T and delayed testing for years. The same for my pancreas, source of kidney stones and a 37 year old skinny male couldn't have 300 grams, about 10 ounces, of gallstones.

I have lost my tolerance for antihistamines. Non drowsy antihistamines and I are not very compatible. You may need to fiddle with other antihistamines and consider either a steroid nasal spray or antihistamine spray. Nasacort and Flonase are preferable to pill forms. Claritin is as good as any but several families of allergy medicine are out there because we don't all react the same.

Good Luck,

LL
 

ethan508

New member
LL, your thoughts on the endocrine systems are interesting. I've actually picked up 5-10 pounds in the last quarter. My wife has been asking me if my shirts have been shrinking, as the weight is all my gut, not my shoulders/arms where I want it. So I wonder if decreased testosterone would do that. Plus my typical sky high drive has waned in the last few months as well. I'll try skipping the Claritin for a bit. I've used Flonase for sinusitis but didn't suppose know it would help with the sneezy, runny allergy issues.

Melissa you are probably right, it is time to start going to bed earlier. I don't love the idea of getting old, but I guess it beats the alternative.
 

Jet

Member
Yes fatigue can be an issue with diabetes. Your weight gain and decreased exercise could also effect your blood sugar levels and be adding to your fatigue . You should get tested soon.
 

LittleLab4CF

Super Moderator
Bingo! Within my usual scientific caution. My guess was a body wide change in metabolism but I didn't know about the weight gain. In my work, I dressed well and played several roles in them. I had a sales meeting or engineering proposals to discuss and often crawled into one of our contraptions to modify or God forbid, fix something after meetings. Dress pants became work pants before their time. To that end I have "work pants" spanning three decades and waist bands from 31 to 38 inches. Like you, shirts stayed the same except a temporary period I needed a larger shirt to fit over my mellon like pot belly.

Someday I'd like to take an account of CFer's "sky high drive", wired or just driven. My suspicion is in those cases where CF isn't overwhelming, from little CFers to long lived CFers live life as if there were no tomorrows. I've researched illness induced stress using other chronic health issues and even there it isn't a popular question. But any parent eventually figures out it is the body fighting a sinus infection and not the OTC medicine making Junior run until she/he drops. My limited exposure to other people who battle a taxing physical condition puts us/them into a constant hypermetabolic state in order to fight the effects. Even if a lot of energy is spent on the physical battle the overload of stress hormones leaves the mind racing. I have no idea if I was ADHD or simply wired on adrenaline as a child because of my little stress hormones. I am still in mental overdrive but I burned out physically by fifty ish.

As far as men and the mid life paunch, our metabolism changes to a lower level at sometime in the 40-55 age range. CF brings those changes in the least preferable direction. Puberty is often late and menopause or a precipitous decline in testosterone levels too soon. A testosterone test is simple and always covered as is the treatment. Testosterone gels have probably gone generic but if you have a problem injectable testosterone is self administered every two weeks. If the cost or method of delivery are an issue, injections work fine and though you almost have to wrestle somebody right after applying the gel to affect them, some people don't want any risk of a small percent of a day's testosterone for the average man. I don't blame people either way, but the caution is out there.

If this is a slow down, don't let it get you down. I agree that diabetes is not to be trifled with and testing will confirm or eliminate any concern. If by chance you aren't near to being diabetic but wonder what's coming down the road, see a neurologist. There is a sophisticated EMG or electo-myleogram they can perform that will predict diabetic onset as much as ten years in advance!!!!!

LL
 
T

The Dot

Guest
I've had a problem with dozing off at work (and church and home) lately. Fortunetly I've been doing CAD at work, my co-workers and boss seem to not notice, and I've been able to stay late to make up the work missed during my naps. But it is getting frustrating. My cough hasn't increase, my last PFTs were right were they were previously, I do have a bit of seaonal allergy that seem to be well controlled with Claritin. I've noticed my doze offs happen an hour or so after breakfast or lunch (today it was both) plus one riding home in my carpool. I'm kind of wondering if blood sugar could be a problem (I haven't done an OGTT for a couple years) or maybe just a slight flare-up.

Any of you with CFRD have 'fatigue' as a major symptom? I'm just a little stumped on why I can't stay awake (work is no more dull now than it was in years past).

P.S. I'm sleep fairly normal hours at night (10pm to 5:30AM) and nothing in my lifestyle has changed much (maybe not exersicing with the same frequency I have in the past).

Ethan,

You have gotten some wonderful advice - especially about the diabetes and adrenal insufficiency. I'm an RRT, not a CF Patient, but I do have adrenal insufficiency. Mine was probably triggered by chronic steroid use for Sjogren's/RA/Lupus. I still have trouble falling asleep at my desk and nodding off if traffic is bad coming from or going to work. Part of that is because my body does not seem to produce any cortisol, and I dose my Cortef after breakfast and after lunch. But, in someone with a normal adrenal system, the body will respond to stressful situations and send more cortisol, something mine cannot do, so I remain somewhat symptomatic. That said, I am MUCH better than when they were still trying to figure out what my problem was. I did not say anything to my doc about my fatigue because I figured it was normal considering the amount of stress I was under at the time. The thing that they noticed was an abnormally high eosinophil count on routine labs.

FINALLY - please, consider getting a sleep study. While sleep apnea does not appear to be too common in the CF population, there are other forms of sleep disordered breathing that can affect the amount of restful sleep you get. Therefore, you can be in bed 8-10 hours, but only be in deep, restful sleep for 1/2 that time (or less). If that is the case, you may not ever be awake enough to notice it, but you stay awake enough that your whole system never gets the rest it longs for. If you snore, that's one of the "red flags" to look for that you could have an upper airway obstruction causing some sort of sleep disordered breathing. However, a lot of people who snore can get rid of the snore simply by using steroid nasal sprays to keep the upper airway from becoming inflamed due to allergies/irritants. And bear in mind, not everyone with sleep disordered breathing snores.

God Bless.
 

markinohio

New member
Are you just tired or low on energy too? Last fall I was feeling more tired and low on energy. My doctors did some blood test and I found out my iron levels were real low. I had some iron infusion doses and began to feel better. Just thought I'd add that to the mix.

Mark
 

ethan508

New member
Thanks for the advice everyone.

To answer some questions, the tiredness seems most pronounced when I'm sitting (or lying) down. I've started to stand up in the back of a room during meetings and doing so keeps me awake. Stand up desks are getting popular in my cubefarm so maybe I'll request one of those.

Also if I'm active (out shopping, or working in the yard) I don't feel tired or worn out until I stop moving. For instance, I feel fine mowing the lawn but I stop for lunch and then need a nap before I head out again. Sometimes I'll push through and once I'm moving again I'm fine, until I stop. I feel like one of those sharks that if they don't move they die (which is a problem with a desk job, and other meetings/classes I attend outside of work). Option B, if I could have a 1 hour siestas every day, I think I would be able to function for the rest of the daylight hours.

But I think it is time to work through this with a doctor. OGTT, sleep study, and blood work (Iron, testosterone) seem like good first steps.
 

Twistofchaos

New member
Pretty normal I suppose to feel aches, pains and tired when in rest but not as much when active, got the blood and oxygen pumping and mind likely on something else.

But it does sound a lot like lack of sleep.

I'm 34 now, it seems I need more and more sleep as years pass.
And I mean a LOT of sleep. But sleep is a great medicine, though annoying.

As for specifically testosteron, small lifestyle changes can make a big difference there. I would absolutely avoid going on testosteron replacement till you absolutely tried what you could and tests still come back very low.
Ignoring possible CF causes, that test levels drop with age is somewhat of a myth anyway. It's just that most men start to live more unhealthy/keep living the same way they did when they were young (alcohol, eating as much as they did etc.) when their body requires a healthier lifestyle as they age. Don't work (or work out) as heavy as they did because they think they are getting old etc. A lot of secondary and psychological things that add up to reduced test levels but rarely testosteron production itself.

A lot of sleep, avoiding stress, maximise your fat intake (relative to carbs and protein) to what you can digest CF wise, up your vitamin D to 4000+IU a day, exercise with heavy weights.

The fats and vit D made a big difference in my perceived testosteron/libido/energy when I got aware of that. And after a session of barbell squats that day and the next my perceived testosteron is through the roof.
 
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