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Extreme fatigue and exhaustion
My daughter has had COVID several times (4-5). The fatigue and exhaustion has eventually weaned but this last time (since February) her long-COVID symptoms remain. There are times when she's very tired and can do a little at a time and then take long period of rest, but there are also times when the exhaustion is so severe she can fall asleep in the middle of eating! She will literally sleep for days on end!
When she's not sleeping all day, I get encouraged that perhaps it (at least that symptom) is improving but then she will have these flare-ups and there's literally nothing she can do to stay awake.
She has the other symptoms as well. Brain fog and confusion can be very severe. She also has had breathing issues and pain that shoots down her leg into her feet.
To complicate things more, she is unable to work so is on Medicaid and it's difficult to get doctors to accept Medicaid. We are in VA. She is searching for a good regular doctor (internest) and then will go from there. I am having difficulty determining which doctor she should go to after that because she has so many issues.
The other issue is that due to her shortness of breath, she nearly passed out when in the post office and fell and as a result tore the labrum in her hip and has 4 bulging discs. She is seeing 2 ortho doctors and has been going to PT (when she doesn't have to cancel due to fatigue) but it is no better and will likely need surgery. She has a difficult time dealing with all these doctors at the same time which is why I'm trying to determine which one she should go to next after finding a regular doctor (Infectious disease, rheumatologist, neurologist, etc). This overwhelms her so we are trying to the "best" thing next. She has been to a pulmonologist and could not finish the pulmonary function test due to lack of breath. Dr was a bust - absolutely no help and said maybe she has asthma!
Blood tests months ago revealed an extreme vitamin D deficiency but the doctor only had her take OTV vitamin - not a high dosage even though she was told this was one of the lowest she's ever seen in her patients.
If only we can find someone who can help be her advocate. Feel like we are all on our own.
We are in Northern VA by Dulles Airport if anyone knows of any good doctors to recommend. Thank you all for "listening" and providing any info that you can. God bless us all.
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Let me know if that works.
First of all, thank you for your recommendation. I really did not think these places acceptem Medicaid. My daughter cannot work, so she does not have good insurance and we've had a heck of a time trying to just get into regular doctors and didn't think a medical university would even consider seeing her with Medicaid. But it is worth a shot. Right now we are dealing with trying to her torn hip ligament fixed as she fell due to lack of breath due to covid and tore her hip labrum and had 4 bulging discs as a result. PT has NOT helped, so the doctor wants her to go to a pain management place to get some cortisone shots to calm the area does (SI joint) because since he cannot even maneuver her hip the way he wants, he is reluctant to do the surgery to fix the tear. The responses from some of these doctors are so disturbing I cannot adequately express. And Medicaid will not take the ortho's recommendation (strangely enough since he's the one treating her) and wants her to get into a GP for the recommendation. That appointment is weeks away. If she gets that recommendation, then who knows how long until she gets into the pain clinic. In the meantime, she is in constant pain (no position relieves it). The ligament is not only torn, but "frayed," so will not heal without surgery.
Regarding your experience with doctors: I feel terrible for you. I am so very sorry you and others have to deal with this in the midst of being so ill! We went through such similar experiences years ago when we were seeking treatment for our daughter's brain injury. Because it did not fit in a casebook scenario, doctors didn't want to believe her symptoms. That only had her more reluctant to express how badly she was feeling, so I had to "fill in the blanks," and later read notes written by doctors indicating that I was a helicopter mom, and that she was an "only child" which made it worse. She was a teenager; of course a parent would advocate for her. And what does an only child have to do with it - as if to suggest it wouldn't be much of a concern if there were other children! The responses we had were from places like the Cleveland Clinic (when after a 3 day assessment the neurologist's big diagnosis was "you know, there are different colored cows." WHAT the heck does that mean?! Translation: their arrogance is so great they can't admit they don't know. She he sent us home, telling us to get her into psychotherapy. So I really emphasize with what you, and others Im sure, have/are experiencing. So we find that we can only try to help one another . God bless everyone on this board. Heart and hugs to all. Thank you for your response.
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2 ReactionsThere are some plants (herb and other) which produce some good anti-inflamatories and a few which produce some pain aid. All normal extracts. I have used legal levels of THC. This just makes you not care. It still hurts. Not in use now.
In testing on myself, I use curcumin, cinnamon, garlic oil, saw pawmetto, black sativa oil (nasty taste - use in extract mix incapsule), dandelion extract, green tea extract (last three in capsule - had profound effects on my Reative Arthritis pain and I am not sure of the mechanism (s), but large difference), good quality CBD oil (THC < 0.03) (the effect is significant as an anti-inflamatory, my wife and I both use for many years prior to Covid - effect is specific to rate per day and strength - we use 1000 mg/ml strength @ 0.25ml for wife and 0.75 for myself), and we eat many many specific vegetables grilled or roasted in olive oil, salt, garlic powder, and tad black pepper.
We eat broccoli and brussel sprouts mutiple times per week, cabbage, sour kraut, cauliflower, garlic, peppers, cucumbers, cilantro, tomato, sweet potato, fennel, artichokes,....
We grill and roast fish, pork, beef, and chicken.
Prior to Covid, my doctor (one of the two good ones) asked me a number of times what I was doing for some of my numbers to be as they were. I pointed to the vegetables and a couple heavy weight work-outs a week. At 50, I was in near the best condition since age 24. Did you know over 40% of pharmaceuticals used to come from plant extract - synthesis models? This was some years ago (maybe 1970 to 1980s).
There are possibilities out there to help. Keep up the strength and courage. Psalms.
If I can help, let me know if you need some direction.
I tried boswelia. My pain was so severe that I recognized no impact. Others say it helps.
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1 ReactionI am unable to send links.
Look up Oregon State University, Linus Pauling Institute, Phytochemicals.
Scroll to the list of phytochem (plant chemicals) groups, click, and read up. The list is thorough..
Rates per body weight are the issue.
Read up on a dose response curve. Log the information of responses. Track all information.
The hematologist (bad one) asked why I took all the supplements in so many words. He told me to live my life. He said I was an enigma. I had three pulmonary embolisms in four lobes of two lungs, a deep vein clot 34 inches in length, and four shallow vein clots.
And he was stumped that I was alive.
God has taught me to look farther and depend on Him.
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1 ReactionThank you very much for your reply and recommendation. I am glad you are feeling encouraged and it is having a positive effect on your mental well-being. That is so important and I can see the drastic change in my daughter’s mental well being feeling with this along with her brain injury and trying to get her hip surgery from her fall due to COVID. I wish you continued success and more progress with your issues. Please keep us posted. Blessings.
Thank you for your reply. That is a good point you make about medical university-affiliated doctors being more open to LC being real. With so few healthcare providers accepting Medicaid, I really didn't think medical universities would accept that insurance. It is worth looking into. Thank you.
Thank you for your post.
I hope you find the supplements helpful. I would appreciate you keeping us posted. Wishing you all the best.
What supplements / dosages are you currently taking to help with mitochondria?
Sorry for your daughter....I can relate to the fatique and shortness of breath.
I wish i had some answers but i am in the same situation.
Just know you guys are not alone and day by day is all you can do.
Hopefully some research and better resources come along the farther we go along
with this.
Thank you for your reply.
I am sorry you are experiencing this, too.
Have you found anything that has been helpful?
She had to deal with a stressful situation yesterday and she's been depleted ever since. The fatigue, as you know, is so extreme.
Are you taking / doing anything that has been helpful?