Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Miss Emerita
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Miss Emerita » Sun Jul 03, 2022 10:48 am

Did your doctor follow up with you on the ANA tests? For example, did she/he ask you about joint pain, dry mouth or eyes, occasional white and blue tinges to the fingers, or fatigue exacerbated by exercise?

Autoimmune diseases in the connective-tissue family sometimes can't be diagnosed fully via blood work. They also don't sort themselves neatly into specific diseases, and the picture (including blood work) can change over time. You have several general indicators consistent with autoimmune disease, and you have a complaint of fatigue, which can be the primary presenting symptom of autoimmune disease.

I recommend that you ask for a referral to a rheumatologist. (Rheumatologists treat all kinds of autoimmune connective-tissue diseases, not just rheumatoid arthritis.) My primary care physician was good, but she missed a diagnosis of undifferentiated connective tissue disease. She sent me to a rheumatologist, who make the diagnosis almost immediately.

I also don't see tests for thyroid function or testosterone. You might want to suggest these to your physician, along with a repeat of the autoimmune-related tests.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Dylanmatthew
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Dylanmatthew » Sun Jul 03, 2022 3:10 pm

Miss Emerita wrote:
Sun Jul 03, 2022 10:48 am
Did your doctor follow up with you on the ANA tests? For example, did she/he ask you about joint pain, dry mouth or eyes, occasional white and blue tinges to the fingers, or fatigue exacerbated by exercise?

Autoimmune diseases in the connective-tissue family sometimes can't be diagnosed fully via blood work. They also don't sort themselves neatly into specific diseases, and the picture (including blood work) can change over time. You have several general indicators consistent with autoimmune disease, and you have a complaint of fatigue, which can be the primary presenting symptom of autoimmune disease.

I recommend that you ask for a referral to a rheumatologist. (Rheumatologists treat all kinds of autoimmune connective-tissue diseases, not just rheumatoid arthritis.) My primary care physician was good, but she missed a diagnosis of undifferentiated connective tissue disease. She sent me to a rheumatologist, who make the diagnosis almost immediately.

I also don't see tests for thyroid function or testosterone. You might want to suggest these to your physician, along with a repeat of the autoimmune-related tests.
I was told the positive ANA was common and that he was not concerned about auto-immune disease being present. I never experience any pain besides my dull headaches I get sometimes. My fingers look normal, no dry mouth or eyes. Fatigue exacerbated by exercise, maybe. But thinking on it, I am just always fatigued. But perhaps it is worse after I've done more physical activities.

I will be looking for a new doctor because I believe my current one is too set on me just being depressed and that is it. He only did these blood tests because I specifically requested them.

I did a blood test for "total" testosterone, not sure why he didn't include "free" as well. But the total was in the 700s. My thyroid lab from 2020 was TSH 3.19. He only checked my FT3 & FT4 in 2019 because I requested it, the labs showed they were in the middle of normal range.

I have had all of sat, sun and tomorrow off and so far I haven't done anything, really. I am so fatigued, I feel unwell, sick... I wonder if it is truly textbook depression and the fact that I am so lonely and touch starved. I haven't connected with another human in so long. I just want to be cuddled and loved...

https://imgur.com/a/8gBa53A TSH
https://imgur.com/orr3nwr Vitamin D

Architect
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Architect » Sun Jul 03, 2022 5:05 pm

I have had all of sat, sun and tomorrow off and so far I haven't done anything, really. I am so fatigued, I feel unwell, sick... I wonder if it is truly textbook depression and the fact that I am so lonely and touch starved. I haven't connected with another human in so long. I just want to be cuddled and loved...
Hi friend, sorry to read of your journey, hope you find resolution soon. I truly can relate to what your sharing. Truly don't know how to explain without writing a massive book. For a very long time, I was living in isolation, fatigue, I struggled with multiple symptoms daily. I was to tired to socialize, live a productive lifestyle. I knew this was abnormal, prior I was very outgoing/sociable person, lived a very active lifestyle, to hardly getting off the couch.

Reason being, I knew there was something wrong with my health, went to many physicians/speciality clinic. All labs were normal, many, many tests, all normal. Clinics were all convinced I was depressed, but mental health evaluation I didn't have depression. I worked with the mental health clninc, whom were wonderful, MH psychologist spoke with physicians/specialist, to discover cause of my isolation/fatigue.

Long story short, my thyroid triggered off additional healh disorders over time, sleep apnea, diabetes, etc..... Labs do not always reveal abnormalities at any given specific time. As I shared in my previous post, Thyroid labs fluctuate, specially TSH. Diabetes fluctuate, etc....

You may need a serious of test overtime to indicate a problem, such as complete CBC, Thyroid panel every 3 months or sooner.

Labs are used for references, but not specific to every individual. Example, my body prefers low FT3 opposed to national average, mid to high. My Vit D is 46, I take 4000 units daily, although my Vit D was 41, same as yours considered slightly low, for me, pcp agreed.

Once all my health disorders were addressed, regardless of labs, I'm doing perfectly fine now, living an active lifestyle.

As I shared in previous post, unknown health concerns can lead to stress/depression. Mental health can rule out if stress/depression is caused by health or mental. Many medications, script/otc, supplements can cause undesired side effects. For me mental health clinic was able to help me pinpoint what was going on, discuss with physicians/specialist.

A test I suggest you ask for, which is highly overlooked is adrenal fatigue (Cortisol levels)

Sorry for writing a book, hope you find resolution soon, wish you well....

dataq1
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by dataq1 » Mon Jul 04, 2022 7:07 am

Regarding Flonase:
My partner’s experience with Flonase was positive, helped clear nasal swelling but did not impact her AHI numbers after two weeks of useage. She did not have any apparent side effects.
On the other hand, i was given Flonase by my pulmonologist to “try” for a couple of weeks. While I could feel that my nasal breathing was easier, the medication apparently affected my nervous system making me very jumpy and hypernervous- the two weeks that I tried Flonase were the worst in terms of getting to sleep or staying asleep. I would wake up every every 15 minutes and then not be able to fall back into sleep for another 20 to 30 minutes. After 2 weeks I was l Iike a zombie.

So, as others have alluded above, side effects may be mixed for each person.

Best of luck to you.
"THE INFORMATION PROVIDED ON CPAPTALK.COM IS NOT INTENDED NOR RECOMMENDED AS A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE."

Tec5
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Tec5 » Mon Jul 04, 2022 10:00 am

dataq1 wrote:
Mon Jul 04, 2022 7:07 am
Regarding Flonase:
I was l Iike a zombie.
Similar experience here, became a hyper-zombie, stopped using the Flonase and returned to "normal" in 36-48 hours. I never want to repeat that again !
I am neither a physician nor a lawyer, so DO NOT rely on me for professional medical or legal advice.

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lazarus
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by lazarus » Mon Jul 04, 2022 10:37 am

Few things worse than a jumpy zombie.

I know I promised to go outie, but maybe I'll risk further irritating Granny (who doesn't always seem to do well trying to understand nuanced posts) by continuing to speak to Dylanmatthew.

Book to follow:

Fatigue is a primary symptom of my allergies. I have year-round AND seasonal. I don't so much get the common symptoms of runny nose, itchy watery eyes, and the like anymore (although I did as a child). The fatigue can mimic depression in many ways except that for me it is accompanied by sudden upset stomach and flu-like aches.

That particular pattern of reaction to allergens began decades ago after a particularly bad respiratory infection that almost took me out, followed by months of mono and then basically a form of chronic fatigue that lasted two years, almost to the day. During those years I noticed that, surprisingly, I no longer reacted to allergens with the same classic allergy symptoms. At first I thought I no longer had allergies, but then I began to figure out that new pattern of being achy and having an upset stomach and being flat emotionally on particularly high-pollen days.

Happy ending:

Once I understood the pattern in my case, I was able to make some changes so that I can deal with allergens effectively.

One big change was always keeping humidity below 50% in my living space and working space. Than has brought the dust mites down to a level at which they no longer play with my emotions, those little evil invisible creatures! Getting that constant allergen down has made the seaonal allergens much easier for me to deal with.

A second thing was doing the allergy-shots thing again. I've done it on and off all my life, but the practitioners and overall methods seem to have come a long way in recent years with targeting and customizing treatment. I kept increasing dose until once my face swelled to the point my eyes almost swelled shut. Then I, uh, stopped, again. But I'm still glad I did it. It took the edge off in a way that has lasted several years.

A third thing is that I do better with avoidance. For example, the pandemic has made it so that I can wear a KN-95-style mask outdoors in my part of the country on particularly high-pollen days without drawing any attention. Before COVID I only wore a mask when doing yard work or mowing the grass or the like; now I do it any time pollen is above 9 or so in my area if I absolutely have to be out in it several hours.

I feel fortunate that I was able to find the triggers to what was messing with my mood and have been in a position to do something about it. And now that PAP has my sleep-breathing fixed, I wake up able to face every day with the full expectation of joy.

Point (and I really do have one):

Never give up looking for patterns to mood stuff. No need to obsess and chase every red herring, but there's also no reason ever to shrug your shoulders and simply accept where you're at. Sometimes we have to follow our nose (figuratively) as a trigger detective.

Too many people think, 'I don't sneeze like Aunt Martha, so it can't possibly be allergies; must be something else.'

I wish you success, assuming you even made it to the end of this meandering autobiography.

The End

Except this footnote: My doc felt I shouldn't use Flonase year-round, though some do. He said for me to pick the worst season for me and only use it then, if I do. My allergy doc is more conservative than some docs when it comes to allergy meds with eye-damage risks. And as the Flonase site says:
If you are 12 years old or older and have been using FLONASE steadily for 6 months, check with your doctor before continuing to use FLONASE on a daily basis.
https://www.flonase.com/products/flonas ... lief/faqs/.

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Miss Emerita
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Miss Emerita » Mon Jul 04, 2022 11:48 am

I regard the doctor's response concerning autoimmune disease to be entirely unsatisfactory. It may be true that you don't have an autoimmune disease, but you need further follow-up, preferably from a rheumatologist, before you can reach that conclusion with confidence.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Dylanmatthew
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Dylanmatthew » Mon Jul 04, 2022 4:07 pm

Miss Emerita wrote:
Mon Jul 04, 2022 11:48 am
I regard the doctor's response concerning autoimmune disease to be entirely unsatisfactory. It may be true that you don't have an autoimmune disease, but you need further follow-up, preferably from a rheumatologist, before you can reach that conclusion with confidence.
Hey, I finally had some time today to check my thread. I will respond to the others above later.

I think the 1:40 and below is negative and 1:40 above is positive. My doctor said it's common to have false positives. He did not recommend I see a rheum but said he'd refer me if I wanted. I was worried about the extra cost of seeing a specialist PLUS more blood tests (which cost a lot too.) I need to stop putting a price on my health, I know. But I got a lot of testing done as you can see and every time I do my previous, current and even an endo sees the results and says "You're fine, just depressed."

The ENDO saw my TSH and said I need to go out and live life and meet people, LOL!!!

I am feeling defeated. I really hope this fatigue and malaise is from depression and sleep apnea. I don't want to keep looking for problems, I want to treat myself!

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Miss Emerita
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Re: Struggling with FATIGUE. Please, any advice! I tried to make my thread detailed

Post by Miss Emerita » Mon Jul 04, 2022 11:11 pm

Good to know you’ve been giving this careful thought.

It’s boring advice, but maybe not bad—get out into the world by doing a little volunteer work. It’d be wonderful if you could find a good match for your interests and capacity.
Oscar software is available at https://www.sleepfiles.com/OSCAR/