Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
Connect
Hi seidholz,
I understand not wanting to rely on adderal or any other drug. My daughter feels the same. My thought is that sometimes they may be the kickstart that is needed and then one can incorporate other things like the diet, etc.
Your research comment provides hope. I wish you, and all others, continued improvement.
Thank you for your reply.
Hi Law59,
Thank you for your suggestion.
I appreciate your response very much!
I am so sorry for you. I've been into this for 3+ years, as my wife passed in my arms. I'm. 70 and was very active I still heat with wood in Wi. with the help of friends. it's tough Just hang in there. Life just sucks sometimes. I pray things get better for you, I just don't have much faith in the medical field.
-
Like -
Helpful -
Hug
2 ReactionsHello I have had all of the above, still do. It has been for over 3 years now. Johns Hopkins has an excellent Long COVID clinic. You need to be referred. I strongly encourage you to see about this. The form is on their website and your daughter's Primary Care Physician can refer her. I am currently a patient with them. I am so grateful. It has had a huge impact on my mental well being. My body is another story, but I understand why and what is happening and have coping skills, I work with a specialized Physical Therapist, and I have medication. I hate taking medicine but it is necessary and my quality of life plummets to fully bedridden without it. I would encourage your daughter to pace herself with exercise. I have been told to limit activity to 20 minutes an hour, sometimes I can do 20 minutes and sometimes I can't. Long COVID is attacking my autonomic nervous system, I have neuropathy with CRPS in my foot, leg, back and neck and head, gastroparesis, POTS, etc. I am learning to live with this and find the good in life in this new very altered state of living. I wish you and your daughter good luck. She is lucky to have you.
-
Like -
Helpful -
Hug
1 ReactionOh William. I am SO, SO very sorry for your loss!
I lost my husband suddenly and unexpectedly (he was not ill and we were to go out the evening he passed. While driving home from work it was like someone told me Bill died. I screamed out loud in the car, went home and found him).
I can only imagine your situation with your wife.
My heart truly aches for you. Feel free to reach out to me if need. I'm just getting acclimated to this board, so sometimes I don't know where to find responses but I'm working on it. Many hugs.
-
Like -
Helpful -
Hug
1 ReactionSame age here. Liver transplant survivor of 19 yrs. Also have non-CF bronchiectasis (progressive lung disease), and now long COVID since late 2021, Delta version of Covid, my second case. I have exhaustion almost all the time,brain fog, memory problems, a blood clot caused ischemic in my large colon in Aug 2022, they thought I had colon cancer, transferred my to my transplant center 400 miles away by private ambulance. Starting in Nov 2022, I had vertigo(dizziness) and nause very bad for 10 wks.
Now I’ve learned by constant research that LC causes the mitochondria in muscle cells to be damaged or destroyed. Mitochondria is where the energy for our muscles is made. They discovered this by doing biopsies of muscle cells. Then they found same thing in other diseases like Long Lyme, Chronic Fatigue, ME, etc.,
So then I researched what I could do for damaged/destroyed mitochondria and found quite a few supplements, in large doses may help., Ubiquinol, NAC, ALA, D-Ribose, Creatine, etc etc. so that’s what I’m trying now.
-
Like -
Helpful -
Hug
2 ReactionsYes…mitochondria is the latest focus of the research. And looks promising. I take all the supplements but actually need to know the effective dosages. Get out of our way Big Pharma!!
Supplements have been heaven sent for many of us.
-
Like -
Helpful -
Hug
1 ReactionI think your bet bet is to go to some medical university-affiliated doctors, they accept a Medicare and Medicaid, and are more up-to-date with newest treatments and more open to LC being real. My former internist told me he didn’t believe in it or any other similar stuff, thought it was all in people’s head. I switched.
-
Like -
Helpful -
Hug
1 ReactionI increased my Ubiquinol dosage to 600mg. Went up on others too. I’m taking 1&1/2 tsp’s of Creatine 4 X/day. When I have to do anything I try to wait for my Creatine dose and it enables me to do simple things, like make up the bed, for a couple hours at least. I can’t over-do it though or I’m down for 10 days-2wks.
I had one of the doctors I was using say the same. Quit thinking about Covid, quit reading, quit watching anything. She said none of what I was experiencing had anything to do with Covid. This was a doctor which was noted on her information to focus on Covid issues and had reference to FLCCC.
This was near the worst experience I had with the 12 amd counting doctors I have seen.
I had a severe case of Covid some weeks prior.
Within a couple weeks I was diagnosed with three pulmonary ebolisms, one deep vein clot groin to ankle, and four shallow vein clots. A few months later I was diagnosed with Covid Viral Reactive Arthritis.
Doctors......
My Covid related experiences have been many and difficult. The experiences with most of the doctos (90%) have not been good or were very bad. The immunologist and hematologist were in the top most pitiful doctors I have experienced. These were both recognized with authority by their positions. The rest were pretty poor and a few were middle, neither helping or causing issues. I have two doctors listen and make a difference.
Jt
-
Like -
Helpful -
Hug
2 Reactions