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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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I have the same fatigue and lack of energy issues due to 3 cases of Covid. I have had virtually every potential cause tested for with no answers. I have quizzed my NIH admins and docs and they all say the same thing- “we don’t know”
I consulted my GP who did more tests and , again, couldn’t find any legitimate causes. He labeled it Cronic Fatigue Syndrome and suggested scrutinizing my caffeine and sugar intake as well as policing my diet. He also prescribed low dose Adderal in the morning to jump start my system. It seemed to help but I don’t want to rely on a drug that may have long term effects so I am now concentrating on exercise and diet and it’s seeming to help a bit but not great.
Frustrating to say the least but again, all the researchers are telling me that these symptoms are appearing to slowly go away in their study subjects. The ferocity of the Covid virus attacks the immune system in a much stronger way than other viruses, and takes longer to recover.
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10 ReactionsHang in there! I am slowly feeling better. It has been 3 years since I got Covid the first time. EBV was reactivated and caused chronic fatigue. Daily naps and managing your activities has helped.
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5 ReactionsHi @bba3. I am so sorry your daughter and you are going through this as so many of us have. May I suggest you reach out to Mayo through the request appointment at end of this site. Post Covid is very complex and just the process of seeking help can exacerbate symptoms. Hopefully they can assist or have wonderful referral sources for your area to have one clinic focus providing proven methods and less stress seeking care. It will be better!🌈
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1 Reaction'The ferocity of the Covid virus attacks the immune system in a much stronger way than other viruses, and takes longer to recover.'
I couldnt agree more with this. Prior to my second Covid exposure i was of the mindset that it was just another Flu.
WRONG.
This is all together a different beast.
I cant make sense of it, and Im hoping that research and science can make progress and give us some answers. This virus did not feel 'normal' to me at all. It felt like bio warfare on my system.
Im taking it one day at a time.
Hoping that now if this message reaches you and everyone that you are better and blessed.
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3 ReactionsI believe that this virus for surreeee reactivates other viruses in our body. I know that.
It will be known science probably 5-10 yrs from now just how it works, and how the viruses are takin over.
Some peoples immunity isnt as greatly affected as others, as one can see in the numbers. Some bounce back, others are trashed.
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3 ReactionsI am definitely trashed. Just turned 79 and would love to live my remaining years a bit more comfortable, a lot more comfortable.
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2 ReactionsAmen Lindlk. With you. I'll be 79 in a couple of weeks and wouldn't mind being a bit more comfortable myself. Doubt that's going to happen but I'm getting better at handling it. One of the things that helps me is to remind myself of what others are going thru. Puts my plight in perspective. Yesterday, I was reading [when I search for "celebrity diseases"] about Michael J Fox hanging in there, Christina Applegate putting on 40 pounds, walking with a cane, Bruce Willis dealing with his dementia, Kathy Griffin's PTSD. Seems like everybody's got something.
I wish you the best my friend.
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6 ReactionsI am 86 and rarely leave the house because of exhaustion, weakness. I was active and involved before this hit 15 months ago. Definitely takes a lot of thought control. I wanted to update a post I made awhile ago. I started a plant based diet and experienced a dramatic improvement in symptoms. I was so thankful, but it only lasted a week or two. I have relapsed back to previous condition, even though I continue on restricted diet. I also refuse self pity. Could be much worse.
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6 ReactionsPlease check out information on ME/CFS and POTS. I have both after Covid and both my kids have post-Covid POTS. ME (aka Chronic Fatigue Syndrome) is a chronic complex neuro-immune disease, often brought on post-virus. Lots of research saying about 50% of people with LC meet the criteria for ME/CFS. There’s no cure, but lots to do to help with some symptoms, increase chances of improvement and decrease chances of getting worse. Pacing is the #1 most important thing to learn. It’s not as easy as some may think. POTS is Postural Orthostatic Tachycardic Syndrome. Dx criteria is elevated heart beat upon standing of 30 BPM or more after 10 min. Common co-morbid dx w/ ME/CFS and often seen after LC. If she has both, it’s tricky. There are meds that help POTS (like beta blockers,) but other thing that important is to increae muscle in legs and core. Tough if she also has ME/CFS as exercise can worsen symptoms due to post-exertional malaise (in my view, the most frustrating symptom of ME/CFS.) I mention POTS as fainting can be sign of POTS. Lots of other lifestyle changes that can help both.
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2 ReactionsHi Law59
thank you for your reply. Things have gone from bad to worse as she continues to get every bug there is. On top of that her hip is no better at all. Apt at the end of week with ortho. He'll likely want another MRI and I'm anticipating he will advise surgery. We'll see.
I am SO eager for her to get to a doctor (even GP if not internist) to do bloodwork. The fact that she is sick ALL the time (I know there's a lot of viruses going around in addition to COVID) has to mean she is immunocompromised. even months ago (last time she had bloodwork) she has severe deficiency in D vitamin. I have read on this board that some people are finding fatigue improvement when taking magnesium along with D3 and B vitamins. She is so overwhelmed with not feeling well that emotionally she can't do more than one type of dr at a time. I keep mentioning things I am reading on line, but instead of it helping it seems that it aggrivates her. She is an adult so I can't "force" her but I can't help but think that this could be a relatively easy thing to identify. It won't be a magic bullet but at least it could be a start. And if it helps even a little, she may not get sick so often - which gets in the way of her doing other appointments like PT for example.
Sorry, I got off on a tangent. I just want to help her so badly and I feel she is moving at a snails pace. Thank you for listening.
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