Completely Exhausted - Again! What is THIS?***Update post 89***

[CanadianTrotter]

@shiloh

Oh, and I test hypoglycemic if that helps.

Non-diabetic hypoglycaemia? I know when my blood sugars get dangerously low or are falling very quickly from a high spike, I feel better after getting some carbs into my system.

https://www.drugs.com/cg/non-diabetic-hypoglycemia.html

All I can say is don’t stop going to the doctors just because they say the “tests come back negative”.

I am currently going through the “We were wrong” phase with doctors and specialists.

I was diagnosed with type 2 diabetes 5 years ago, I didn’t agree with the tests or what the doctors said because of the symptoms I was feeling and for how long I was feeling them. But, hey ho…I’m not the doctor or specialist so what do I know? Recently I’m told I have Late Onset Adult Type 1… “Surprise, we’ve been treating you “sporadically and rather poorly” for 5 years for something you don’t have all the while the letting the disease you really have wreak havoc and cause damage to your body for 18 years!” "And just to get you while you’re down we’re going to add Seronegative RA to your diagnosis and now revisit the Lupus and Thyroid negative test results because we think you have those issues as well. Just to add the cherry on top the negative test result that came back for spondyloarthritis, just because it came back negative doesn’t mean that you don’t have it.

Colour me fed up with medical professionals!

Sorry for the rant…hope you feel better soon!

[fjordmom]

Celiac was mentioned above. Have you considered other food allergies or sensitivities? After feeling exhausted and achy, much like I had the flu without any GI symptoms or fever, I discovered by accident that I was sensitive to dairy products. I was in my 30s at the time. PCP had ruled out many of the things you have had tested - thyroid, some autoimmune, mono. When I suddenly started feeling like my (good) self again, I looked back to see what had changed and realized I had not been drinking milk or eating ice cream for several weeks at the time. (And up to that point I had often craved milk and had ice cream for dessert every night.)

I had earlier had allergy tests and was getting shots for pollen allergies. I mentioned my “discovery” to the nurse in the PCP’s office, who was also a friend of mine. She told me that many people with pollen allergies become dairy sensitive. Bingo. I can tolerate a limited amount of dairy, but if I have more than a glass of milk or milk with cereal for several days in a row, I feel the fatigue and crummy feeling crawling back in. Now in my early 60s have been diagnosed type 2 diabetic. Wonder if there was a connection brewing.

Try going dairy free for a month or two and see what happens. If you feel considerably better, add some dairy back in your diet very slowly. If it’s a trigger, you’ll notice pretty soon. (This is one thing that is easy to do without the “help” of any doctor, if you are currently having trouble finding one who is helpful. I was fortunate, mine was truly trying hard to find a cause but hadn’t hit on it yet.)

[shiloh]

WHAT!!! No Cheese! aaaiiieeeee…….Well, I joke now but yikes that could be a possibility. But I hate milk and about the only dairy I consume is a bit of sour cream every other week and cheese infrequently (can’t afford either now) and that’s it. hmmmmmm…

@CanadianTrotter - :eek: holy crap! You poor thing! I hope they figure it out and get their s*** together pretty quick for your sake.

I am well used to arguing with doctors (as a ward clerk had to do much arm-twisting and friendly persuasion in order to get things done for the patients) so having to argue with my own docs is no surprise. They ought to know that if I the well-known blood draw and needle-phobe is asking for blood tests and coming with the same complaint that there is something wrong. I feel that this is a fault in the medical system and in what doctors are taught to believe. That anyone who has a specific or repeated complaint is a whiner or malingering and gets ignored - unless of course they are wealthy. Then all hands on deck omg you’re sick! It shouldn’t be that difficult. Having to argue with these people or keep coming back takes the stuffing out of me. You know something is wrong when you have to spend a whole day in bed sound asleep. That’s just wrong. I keep hoping that this is not going to be my life from here on out and how will this affect any job that I get? Who the hell wants to get old that way? bleah….

[RMJacobs]

Have you had a sleep study to check for sleep apnea? Before I got my sleep apnea diagnosis and treatment, I was just exhausted, had a constant headache, felt awful all over. I already had the joint pain thing going on, so I don’t know if that got worse as well. I could fall asleep waiting at a traffic light, and it was getting very scary to drive. An infusion nurse figured it out from something I said casually to her, and I had a sleep study. Turned out I stopped breathing 70 times in the first hour of the test.

Fast forward to now, and I couldn’t live without my CPAP. The couple of times power has been out overnight was no fun.

Rebecca

[Tyrus_Mom]

@shiloh

You know something is wrong when you have to spend a whole day in bed sound asleep. That’s just wrong. I keep hoping that this is not going to be my life from here on out and how will this affect any job that I get? Who the hell wants to get old that way? bleah….

OMG!!! Sleep apnea is definitely a possibility. Good job Rebecca. When my husband had undiagnosed sleep apnea he was falling asleep EVERYWHERE. Treatment made 100% change in his life. Run, don’t walk, get a sleep study test!!!

[shiloh]

@RMJacobs

Have you had a sleep study to check for sleep apnea? Before I got my sleep apnea diagnosis and treatment, I was just exhausted, had a constant headache, felt awful all over. I already had the joint pain thing going on, so I don’t know if that got worse as well. I could fall asleep waiting at a traffic light, and it was getting very scary to drive. An infusion nurse figured it out from something I said casually to her, and I had a sleep study. Turned out I stopped breathing 70 times in the first hour of the test.

Fast forward to now, and I couldn’t live without my CPAP. The couple of times power has been out overnight was no fun.

Rebecca

Holy Moly - you were bad off! Glad they figured it out and yikes I can imagine what a power outage would do and how you would feel. Are you doing better?

Don’t think that this is what is up. I can sleep fairly well thru night until about 4 or 5a and after that it’s off and on. The 3 or 4 trips to the potty aren’t helpful either. Or the cat that has to prance back and forth across my bed starting at 6ish. Mine is a more progressive tired until I can’t keep my head up. I start off feeling low and get lower. Now while I like my bed I don’t like it that much.

[LookmaNohands]

Lyme does not always show up in blood tests. You need to go to a doctor who has much experience treating lyme and other tick diseases.

Speaking form experience!

[LauraKY]

@LookmaNohands

Lyme does not always show up in blood tests. You need to go to a doctor who has much experience treating lyme and other tick diseases.

Speaking form experience!

It sure doesn’t. And all tests are not equal. Own the t-shirt.

[RMJacobs]

I hate to tell you, but three to four trips to the bathroom at night can be indicative of sleep apnea. That was how the infusion nurse figured out I had it. I was griping about being at Girl Scout camp with my daughter’s troop and going to the outhouse multiple times at night. That was when the light bulb went on over her head.

Rebecca

[Tyrus_Mom]

I wouldn’t discount sleep apnea until you’ve had a sleep study test. Simple test and you can rule it out. It can wake you several times a minute and you don’t even know you aren’t getting any REM sleep. My husband thought he was sleeping fine. It’s not something you can self-diagnose.

[Zu_Zu]

however the four trips to the bathroom can also be the result of BP meds with whatever the water part is …???

[shiloh]

@RMJacobs - Oh, I had no idea. Now you have me concerned. I will definitely mention this.

I’m still doing my research and trying not to be one of those people that reads stuff and goes “Ack, I have this!” We hated getting those kinds at the ER so I’m trying not to read too much into everything. Common sense, common sense, breathe.

[Dajuliz]

Night sweats, unexplained rashes, body aches and fatigue are classic symptoms of Lymphoma. Please ask your primary care doc to refer you to a hematology oncologist. Lymphoma is hard to diagnose because the symptoms are so ambiguous. The tumors can be hidden in your body. The disease comes in many forms. It doesn’t show up on normally requested blood work. The oncologist will have the tools available to do the job. It is very treatable once diagnosed. You need to get the right treatment.

[stryder]

@Tyrus' Mom

I wouldn’t discount sleep apnea until you’ve had a sleep study test. Simple test and you can rule it out. It can wake you several times a minute and you don’t even know you aren’t getting any REM sleep. My husband thought he was sleeping fine. It’s not something you can self-diagnose.

This. My dentist (!) organized a sleep study and took care of the appliance. I wore a little headset for 3 nights at home. It was not invasive and while not something I’d want to do every night, wasn’t a big deal. The results were read by an MD specialist. The dental office took care of creating the appliance, which is like a mouth guard for top and bottom teeth, held together by a metal hinge. It sounds worse than it is. It keeps my lower jaw from collapsing and closing off my airway. Well, I think that’s how it works.

I’ve only been wearing it a few weeks, but do feel better rested. The amount of sleep is about the same, but the quality is better.

[CanadianTrotter]

@shiloh

The 3 or 4 trips to the potty aren’t helpful either.

Diabetes/pre-diabetic or thyroid?

My A1C’s have only gone high a few times in the last five years but my random sugars are all over the place every day.

[shiloh]

@CanadianTrotter

Diabetes/pre-diabetic or thyroid?

My A1C’s have only gone high a few times in the last five years but my random sugars are all over the place every day.

Nah - I always test too low - somewhere in the 65 - 90 range. And thyroid yes but how bad REALLY is my question. Docs keep downplaying it. But it doesn’t make you happy when the doc comes into the room, does a double-take at you and goes “Has your thyroid always been that big?” Thanks, doc, thanks a lot. :mad: And the ultrasound results are sketchy. I know THAT depends on who’s reading (some radiologists don’t like to commit) but come on.

Went to bed at midnight, slept mostly thru night with only two (!!) trips to b/r but every time I went to get up this morning kept doing that “in a minute thing” and falling back asleep. Now trying to push thru housework/catwork/job hunt but so want to go right back to bed; very tired and sleepy.

Even lil’ Baler is feeling a bit punk today - not his usual ball of energy self. He is usually roaming thru the house or tormenting Uncle Teddy, but right now is curled up under my quilt asleep.

[Simkie]

@shiloh

Nah - I always test too low - somewhere in the 65 - 90 range. And thyroid yes but how bad REALLY is my question. Docs keep downplaying it. But it doesn’t make you happy when the doc comes into the room, does a double-take at you and goes “Has your thyroid always been that big?” Thanks, doc, thanks a lot. :mad: And the ultrasound results are sketchy. I know THAT depends on who’s reading (some radiologists don’t like to commit) but come on.

My thyroid is borderline–not considered hypo at all by some endocrinologists–and I feel like a different person on 75 mg of Armour. It’s MINDBLOWING to me. It’s like…I don’t know…the difference in living in black and white vs technicolor.

[shiloh]

The first time I was told I was hypo-thyroid and I started my meds and got up to speed - you are right. What a difference. But now…bleah. I have an appt on 9/5 and am going armed with a ton of research and am going to get a referral to the endocrinologist.

[Simkie]

@shiloh

The first time I was told I was hypo-thyroid and I started my meds and got up to speed - you are right. What a difference. But now…bleah. I have an appt on 9/5 and am going armed with a ton of research and am going to get a referral to the endocrinologist.

Did you take a look at that thyroid page I linked earlier? Good info

[shiloh]

@Simkie

Did you take a look at that thyroid page I linked earlier? Good info

Oh, yes and printed, too.