Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
#1
I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
I was diagnosed as having 498 'events' in an 8-hour period when I did my overnight sleep-lab test a decade ago and have been using a CPAP machine ever since with very satisfactory results - which doesn't make me an expert but does mean I have some experience of comparing how I used to sleep with my machine - very well - and how I've been sleeping recently - not so well.
I have a suggestion based on that experience and follow-up research I've done in recent months and have come to a conclusion that may interest those who have experienced 'oddities' in their lives since the spring.
Look up Sjogren's Syndrome to see what I mean.  
It's not fatal but neither is it curable;  it can however, by treated and controlled and that may all we need to know along with the 'how'.  There are numerous web sites on the subject of Sjogren's, many of them from the most respected and reliable sources.
I offer this suggestion because I, and a convincing number of people I know, have been experiencing similar changes to our normal lives and I do honestly believe that many of us were exposed to COVID-19 before the media and politicians admitted to the rest of us that we had a global pandemic on the loose.  
In those with very healthy immune systems, I think it might be possible that those immune systems leaped into action, battled those mild COVID cases, beat them down and left us with bodies that had been slightly changed.
Since the spring I've had a serious problem, on waking after mostly interrupted nights, with a dry mouth, dry eyes, shortness of breath, chronic fatigue and an onset of dental decay.  It comes and goes - today I feel about half my age of 82 - and ready to tackle anything.  I thought one of the most useful things I could do with all this energy, is pass on what I have experienced in the past few months in the hope that someone, somewhere may find it helpful.
I haven't set foot out of my apartment since April with three minor exceptions that didn't bring me into contact with anyone other than the son who does shopping, cleaning and heavy lifting for me, and my grand-daughter who both wash their hands on entering my apartment before touching anything.  
I repeat - I HAVE ABSOLUTELY NO MEDICAL TRAINING - but I have had a life-time of paying attention to my body, my mind, and my world.  If this helps anyone who is unnerved by unexpected changes to their life . . . I'll be glad.  
Stay safe - stay well - and good luck with 2021 . . . I'm sure I speak for all the 'nice' Canadians when I wish our friends south of the border, a speedy resolution to their current problems . . . 
Maggie
Post Reply Post Reply
#2
RE: I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
Autoimmune disease. I think I have one. Seeing a rheumatologist next month. My main symptom is chronic fatigue. Followed by joint pain, bruxism, headaches, rosacea, reflux, nasal congestion, food sensitivities, chest pain, dry skin face, dry eyes and indigestion.
Post Reply Post Reply
#3
RE: I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
I am fairly sure my wife and I caught Covid in Barcelona or Naples in May of 2019.

But I also suffer from long-standing 'post-viral syndrome' following a severe flu-like episode in 2010.

Post-viral inflammatory conditions are well documented and I expect Covid will trigger them in some people.
Post Reply Post Reply
#4
RE: I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
I've had some symptoms of Sjogren's since around March. Started with chapped, dry lips, became dry mouth (no change in my CPAP'ing, was on a FFM at the time with great seal, switched to Bleep and mouth tape successfully a few months ago), and as of November you can add the dry eyes in the morning. All treatable symptoms (chap stick, extra fluids with a dry mouth rinse and Xylimelts, moisturizing eye drops). Of course there is no cure, though some progression is possible. Not sure what to do about it.
I'm really good at distancing, follow the mask rules when they were put in place, really don't go anywhere I don't have to other than the YMCA. You've intrigued me on the genesis of this, though, as I remain quite surprised at its development and progress. Google will be my friend for a couple days. Thanks.
Post Reply Post Reply
#5
RE: I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
(01-14-2021, 03:23 PM)weiss27md Wrote: Autoimmune disease.  I think I have one.  Seeing a rheumatologist next month.  My main symptom is chronic fatigue.  Followed by joint pain, bruxism, headaches, rosacea, reflux, nasal congestion, food sensitivities, chest pain, dry skin face, dry eyes and indigestion.

You added the symptoms I hadn't included.  I too have joint pain but I don't necessarily put that down to Sjogren's as I've been a constant gardener all my life and joints do suffer from that especially in damp weather.  I don't grind my teeth but I have developed a painful habit of biting the inside of my cheek mainly due to enlarged glands along my jaw line - an area in which I have never before had swollen glands. No significant headaches but a mottled pink rash that runs from my ankles to my thighs - I put that down to my age and poor circulation as I have two artificial knees. Nasal congestion - yes, absolutely! - and a runny nose.  Food sensitivity - I put down to my age which has reached the 'tea and toast' stage but I have almost completely lost any interest in food and find it difficult to come up with menus that attract me.
It couldn't hurt to mention Sjogren's to your rheumatologist - I'm trying to alert the medical community to the possibility that they may be seeing more patients with 'odd' symptoms and we can't always expect them - especially now - to search their medical memories for any and all possibilities.  Any help we can give them would be useful, I'm sure.
Post Reply Post Reply
#6
RE: I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
You're welcome and good luck . . . Maggie
Post Reply Post Reply
#7
RE: I AM NOT A DOCTOR BUT I DO HAVE A SUGGESTION
In the early 1990s I was diagnosed with undifferentiated connective tissue disease, with secondary Sjogren's. After a lot of prednisone and many flare/remission cycles, I actually went into a permanent remission in the late 1990s.

A couple of things I learned. CTDs often don't neatly fall into categories (lupus, RA, etc). Profound fatigue can be the primary presenting complaint for any of them. Sjogren's can be secondary to another CTD. Many CTDs can be set off by environmental factors, including some viral infections. Broad screening via ANA is not enough by itself; a skilled rheumatologist will do a fairly extensive panel of blood tests.

Before seeing a doctor about possible CTD, think about the following. Is your fatigue constant? Does it worsen with exertion? Do you have joint pain? Do you have areas on your skin with fine blood vessels visible in web-like patterns? (These are telangiectasia). Are your mouth or eyes dry? Do your fingers sometimes turn white, then maybe blue, then maybe red? (This is Reynaud's phenomenon.) Do you notice a brownish color on your face across your nose? Is your skin very sensitive to sunlight? Do you see little calcium bumps on your fingers? Are there areas of your skin that are stiff? Do you have close relatives who have autoimmune diseases?

Ideally your doctor would ask these questions, but if he/she doesn't, you should volunteer any potentially relevant information.
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  New ASV unit. No Doctor help! Barry5k 9 319 12-01-2024, 12:51 PM
Last Post: SarcasticDave94
  New user, 3 months in, doctor useless niss9 1 219 10-22-2024, 05:23 PM
Last Post: Deborah K.
  Mild sleep apnea, doctor recommended a dental appliance but not sure how to proceed. MysticEcho 5 440 09-20-2024, 08:04 AM
Last Post: nightgagger
  Upload Data to Doctor with Mac westonjazz 5 2,114 09-10-2024, 12:16 PM
Last Post: weepingwillow
  [CPAP] Trouble with flow limits, doctor won't help ChickenTenders 7 531 08-21-2024, 10:19 AM
Last Post: ChickenTenders
  My doctor suggested patience Annecelesye 27 4,883 08-10-2024, 02:47 AM
Last Post: Annecelesye
  Does New Doctor Need to Know I Tape My Mouth? TiredOne789 3 391 08-04-2024, 04:35 PM
Last Post: TiredOne789


New Posts   Today's Posts


About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.