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How Would You Describe The Fatigue?

Luke987

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Luke987 Rookie
Luke987
Posted

Well basically for a year I've had this odd feeling and it is hard to put into words but I'll try.

I've felt odd, not quite dizzy in the sense that it affects my balance (it's perfect) but that I don't feel healthy. I feel a bit out of it so to speak. Like I say, everything is fine in my cognitive skills but I get more 'dizzy' when I'm on the PC for a prolonged time or reading. My energy is a bit low I think but I can still bike ride ok. (Except for the knee pain)

I also seem to get pretty hot temperature wise though this may be something else. My main question is, how would you define the fatigue?

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4getgluten Rookie
4getgluten
Posted

II was always tired - I would wake up in the morning tired. I felt light-headed and dizzy, like I needed to eat, but I wasn't hungry. I suffered serious brain fog - especially after my morning bagel - which made work difficult. My legs ached, my head ached, and my stomach always hurt - I just felt bad all the time. I knew something was wrong with me, but I didn't know what. And, I because I felt so lousy all the time, I was very emotional. The littlest things would upset me.

If 100% means healthy - I was running at about 60%. Now I'm feeling 100% most of the time.

grey Explorer
grey
Posted

Is the feeling worse when you've had a big day the previous day? Does it not get better after sleep? Sometimes resting helps, but usually only for a short time, and then I feel like I've burned through the energy really quickly and like I hit a wall or the bottom dropped out and I'm absolutely drained. Like I'm heavier and being drawn to the earth, to sit or lie down. I feel a lot of inertia, like it's really hard to get up and move.

It's a different feeling than being just tired or sleepy, although you might crash out pretty easily. I get spacey, confused, and woozey, and if I don't force myself to focus, I'll lose my grasp on spatial relations (put down the cup in the wrong place, walk into the door frame w/ my shoulder).

On a good day, I can do some exercise or something pretty energetic, but I don't have any stamina and the time to recovery is really long. Also, often, the next day I'm wiped out. I also have brain fatigue if I'm focusing for a long time. (The joys of neurological symptom-celiac). Out of it definately describes it!

I had kind of 'hot flashes' before I went gluten-free. Happened mostly at night and occasionally in the morning and would wake me up. Usually preceded a migraine. Mostly I'm cold, but if I get too hot I'll stay that way and get woozy.

I don't know if this is what you were looking for, nor am I sure it's a great or complete description. Hope it helps though.

ravenwoodglass Mentor
ravenwoodglass
Posted
Is the feeling worse when you've had a big day the previous day? Does it not get better after sleep? Sometimes resting helps, but usually only for a short time, and then I feel like I've burned through the energy really quickly and like I hit a wall or the bottom dropped out and I'm absolutely drained. Like I'm heavier and being drawn to the earth, to sit or lie down. I feel a lot of inertia, like it's really hard to get up and move.

It's a different feeling than being just tired or sleepy, although you might crash out pretty easily. I get spacey, confused, and woozey, and if I don't force myself to focus, I'll lose my grasp on spatial relations (put down the cup in the wrong place, walk into the door frame w/ my shoulder).

On a good day, I can do some exercise or something pretty energetic, but I don't have any stamina and the time to recovery is really long. Also, often, the next day I'm wiped out. I also have brain fatigue if I'm focusing for a long time. (The joys of neurological symptom-celiac). Out of it definately describes it!

I had kind of 'hot flashes' before I went gluten-free. Happened mostly at night and occasionally in the morning and would wake me up. Usually preceded a migraine. Mostly I'm cold, but if I get too hot I'll stay that way and get woozy.

I don't know if this is what you were looking for, nor am I sure it's a great or complete description. Hope it helps though.

Grey your description was so much like what I had, and what I get when glutened that all I really need to add is "me too". I am also a neuro predominent celiac, by that I mean that the neuro symptoms were present for over 25 years before before severe gut stuff set in. That was a lot of years of walking into walls and falling over my own feet. I was so shocked when most of it went away, I am still left with some ataxia. It still amazes me how much gluten can effect us and in ways that before diagnosis I would have responded to with a 'Yea sure it does' and a smirk.

Luke987 Rookie
Luke987
Posted
  • Author

Thanks for the replies guys.

I'm amazed to find out how many people can have celiac disease and gluten intolerance. Isn't it the most common of food intolerances? Some foods I see will specifically say 'gluten-free' on the back. I also have never heard of it before and am going to take the test on monday. If it is down to this, which I think it may be, I'll be very happy but on the other hand sad that my doctor hasn't been able to figure it out in so long.

Karen B. Explorer
Karen B.
Posted
Thanks for the replies guys.

I'm amazed to find out how many people can have celiac disease and gluten intolerance. Isn't it the most common of food intolerances? Some foods I see will specifically say 'gluten-free' on the back. I also have never heard of it before and am going to take the test on monday. If it is down to this, which I think it may be, I'll be very happy but on the other hand sad that my doctor hasn't been able to figure it out in so long.

I must confess to curiosity about one thing. When women describe these sensations, most docs seem to write it off to either PMS, peri-menopause or menopause depending on the woman's age, at least on the first visit. Even my woman doc said the bit about peri-menopause and then gave me a little lecture about how women take care of everyone but themselves and I needed more rest. If she had checked my iron levels, she would have seen that I was ready to keel over (ferritin s/b 40-400 and my blood levels were 1).

But what do they tell a guy with fatigue and hot flashes? :-)

(sorry, I'm having a sarcasm attack. :-)

On a more helpful level, it's better to have an answer, even if it means something like a radical diet change because you also have a direction and something you can do to improve how you feel. Going gluten-free gets easier but I didn't really even think about the amount of caffeine I was drinking for the brain fog until after it lifted.

Luke987 Rookie
Luke987
Posted
  • Author

Thanks for the advice.

I hear there are so many possibilities with food intolerances that I would be better off going to the doctor and asking for a blood test to check for any food intolerances with a single sample. Is this possible?

It seems better then spending money on a specific gluten test kit.

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Karen B. Explorer
Karen B.
Posted
Thanks for the advice.

I hear there are so many possibilities with food intolerances that I would be better off going to the doctor and asking for a blood test to check for any food intolerances with a single sample. Is this possible?

It seems better then spending money on a specific gluten test kit.

I agree. There has been much discussion on this board about the value of official diagnosis (pro and con) but I think a clear diagnosis has much value. Some of it seems to depend on how well you think of the average doc. For some people, a clear diagnosis just isn't possible in the standard medical world. They don't have a clear, testable Celiac reaction but they do have a clear gluten reaction.

I still would suggest contacting your local Celiac Support group and ask them for a recommendation of a GI doc because if a GI doc is used to diagnosing Celaic, they are already more aware of intolerences than most docs seem to be.

Local Celiac Disease Support Groups/Chapters

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

Cruiser Bob Newbie
Cruiser Bob
Posted
But what do they tell a guy with fatigue and hot flashes? :-)

Well, for this guy at least: "There's nothing I can do, I recommend that you see a psychiatrist". That is when I stopped working with the traditional medical community (for about 6-7 years). The next step was a food diary and trial & error. That has kind of worked for the past 7 years, but something is still going on, the fatigue, as described previously by others is real for me, and it totally sucks (financially, mentally, physically, socially).

Now I'm back seeing doctors. The Internist = king of referrals, The GI = no respect, The Nuerologist - has been wonderful. Bob

kevsmom Contributor
kevsmom
Posted

Luke,

Have ou had your Thyroid checked? If it's off, it can mess with your body's internal thermometer and how much energy you have.

Cindy

mftnchn Explorer
mftnchn
Posted

The symptoms you describe sound like what I call "brain fog." That is mentioned other places on the forum if you do a search. It is pretty common for lyme disease too.

deesmith Apprentice
deesmith
Posted

My main question is, how would you define the fatigue?

darkangel Rookie
darkangel
Posted
The symptoms you describe sound like what I call "brain fog." That is mentioned other places on the forum if you do a search. It is pretty common for lyme disease too.

It's also very common for candidiasis. A candida overgrowth in the gut can happen whether or not you're celiac. Contributing factors are multiple courses of broad spectrum antibiotics, poor diet, high sugar/starch consumption and stress. The OP may want to check out the online candida quiz:

Open Original Shared Link

Cruiser Bob Newbie
Cruiser Bob
Posted

My thyroid is one of the few happy things in my body - at least according to the three tests I've had over the past ten years. Bob

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