Brief Health Update in Retirement in Colorado (relative, retired, diabetes)
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I very much sympathize with you. I have extreme fatigue and have had it for several years. I get through daily life with sheer grit when that works. I am still trying to find a diagnosis and treatment that is of value. My ANA is over 1280 but I do not have lupus or any readily identifiable auto immune disease.
My ANA was also homogenous pattern, which is reported as a pattern common in lupus.
And while I was a psychiatric RN for many years, I do hope I picked up some info about medical stuff. I am sure jrkliny is frustrated with a very real presentation of illness/decreased functioning with nowhere to pin it.
When I had a major mono (?) episode with severe thrombocytopenia in 1990 and utter loss of functional ability, there was no internet to look stuff up. I had read about Chronic Fatigue Syndrome and seen it labeled as psychosomatic and "yuppie woman flu." Not encouraging. I now wonder what that episode was about, all several months of it with only hospitalization insurance.
Well, 32 years as a psych RN and on antidepressants with talk therapy for many years, I think I'm on top of that aspect. I am relieved not to feel depressed.
There are MANY different psychological syndromes and psychological issues besides just depression - as you know from being a psych RN.
I was certain of the reaction to my further up the thread post, but thought I would risk it anyway.
BDL, I'm sorry you're still having exhaustion. I've followed your thread and was hoping you'd found the answer and were feeling better. With low ferritin, your red blood cells wouldn't be able to move oxygen through your body as easily. Less oxygen to organs would make exertion more difficult. Fatigue; feeling of being wiped out when you try to do anything. I assume you've had a chest xray and ruled out anything wrong with the lungs.
Just throwing this out there. My elderly mother is in heart failure (had TAVR for aortic valve; now mitral valve is Severe and not fixable). I've had a heck of a time trying to get home oxygen (there must be a lot of paperwork involved; cardiology, primary, ER all pass the buck to each other). Last week in desperation, I drove out to Big 5 at night and bought three cans of this: https://thedyrt.com/magazine/gear/bo...igh-elevation/ I took her O2 and it was 79. I put the canister up to her mouth and gave her a couple hits, then took it again and it was 85. So it does work a bit. If your ferritin is giving you a low oxygen level, this would be an easy thing to try as a rule-out. I bought an oximeter on amazon.
Your sentence "It's like having mono almost every day" was very sad to read. CFS would be very possible, given your history of mono. I certainly hope it's not lupus, but also hope it's not CFS. If there are *any* times when you suddenly feel better, analyze those times. I hope you solve this soon and feel better.
I am sure I have a medical condition, however vague.
The point is that the psyche can and often does cause medical problems.
It's something to keep in mind.
What you've said so far does not show a strong or nuanced understanding of 'emotional cause and component' which your principal physician apparently thinks is the source of your fatigue and exhaustion nor what psychosomatic means in terms of your principal physician thinking it is emotional nor medical maladies caused by other psychological syndromes other than just depression.
Working as a psych nurse on a psych unit usually sees the most severe psychological problems such as schizophrenia and paranoids, etc. - but not the nuanced syndromes.
The point is that the psyche can and often does cause medical problems.
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Working as a psych nurse on a psych unit usually sees the most severe psychological problems such as schizophrenia and paranoids, etc. - but not the nuanced syndromes.
I'd ask that we stop this discussion here. This poster and I are not going to get anywhere. If anyone has something to add, I'm sure it is welcome. I just wanted to update.
Forget about CFS. It is a dead end diagnosis with no definite criteria and no treatment.
I assume your PCP has looked at everything likely; including, endocrine, rheumatology, and simple stuff like anemia. I have just three suggestions that may have already been looked at. You mentioned mono. Have you had recent EBV panel testing? Chronic EBV is controversial, but clearly the virus can reactivate and cause long lasting fatigue. Typically the sore throat would also occur. Anyway, it might be worth testing, if not already done. I would also hope you have had a sleep study. Another stab in the dark would be something like Babesia or one of the other similar tick borne diseases. Babesia is supposed to be mild and a disease the body typically copes with without treatment. That has changed on Long Island. There seems to be a new strain that is associated with fatigue that does not resolve. Typically there are also muscle and joint pains as well as the fatigue and a flu like feeling.
Anyway, best of luck in arriving at a diagnosis. My PCP keeps telling me my disease will get worse and eventually we will have a diagnosis. It has been six years since the onset of severe fatigue.
Anyway, best of luck in arriving at a diagnosis. My PCP keeps telling me my disease will get worse and eventually we will have a diagnosis. It has been six years since the onset of severe fatigue.
How does the PCP know it will get worse if you don't have a diagnosis? ??
Do you have any interest or efforts with Functional Medicine or anything that isn't the "usual" medical course?
Are you absolutely sure it’s not related to altitude?
I lived at 8,000 ft and it took me almost a year to really adjust. I was always tired. Both my husband and I had strange abnormal red blood cells counts and our doctor said it’s because your RBCs actually have to enlarge above the normal range at high altitude.
Another thought — have they done a thorough check on your thyroid levels? Not just the TSH levels, but Free T3 also.
Some people don’t convert from T4 to T3 well, and its the T3 that actually gives us energy.
And another thought — were you tested for Lyme disease or any of the other 6 Tick infections that are becoming so common now?
Good luck to you!
Hello BDL, I am not medically literate, so will resist giving advice. But, do hope you feel better soon!
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