Post-COVID Syndrome is real

Posted by nant @nant, Jul 26, 2021

I had covid mid April and have had many PCS symptoms. I seem to be educating my doctors and therapists. Sometimes it feels like they think I am faking and the next time they tell me they have heard the same thing from others. I am doing everything from aqua therapy, speech therapy for the "fog" and still exhausted, headaches, fog and not sleeping well ect. I have used my short term disability at work and working thru my PTO time. I am more than frustrated. Any encouragement?

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ginkgo biloba, increases blood flow to brain, 120 mg in the a.m. try this for brain fog.

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@dcgirl1977

I had a moderate case of Covid in August of 2021. Felt like bronchitis for me. Cough lingered until end of September. Then I got vaccinated and many symptoms came and went but one new one developed chest pain so bad I landed in the ER and Docs said it is inflammation. Mostly fine but one day I had horrible pain right side rib area by liver and threw up. Fine until Thanksgiving and it happened again. Then happened again today, it’s now December. So over it all coming and going.

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I'm dealing with similar symptoms but not as severe. Chest pressure, that later included my bronchial congestion and also soreness in my back on the other side of where the pressure was in the front. I had asthma when I was younger and the bronchial stuff was similar. I also have felt it in my back in the past when I got sick. However my symptoms started well after I got covid and shortly after I got the vaccine. I only think covid- related inflammation because I've had tests done and they were negative in terms of causing this. In addition I had a "bout" of what was like TMJ for a long time, but I had none of the problems that would typically cause it.

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@jocelyneg

ginkgo biloba, increases blood flow to brain, 120 mg in the a.m. try this for brain fog.

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When considering complementary or supplemental treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. I usually turn to NIH's National Center for Complementary and Integrated Medicine (NCCIH) website https://nccih.nih.gov/

In the section "Health Topics A-Z" current therapies and conditions are listed explaining the most recent evidence, cautions and potential of future studies.

- Ginkgo https://www.nccih.nih.gov/health/ginkgo

Ginkgo is widely used in Europe for treating dementia. At first, doctors thought it helped because it improves blood flow to the brain. Now research suggests it may protect nerve cells that are damaged in Alzheimer disease. Several studies show that ginkgo has a positive effect on memory and thinking in people with Alzheimer disease or vascular dementia.

Studies suggest that ginkgo may help people with Alzheimer disease:
- Improve thinking, learning, and memory (cognitive function)
- Have an easier time performing daily activities
- Improve social behavior
- Have fewer feelings of depression

It might be worth a discussion with your doctor.

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@dcgirl1977

I had a moderate case of Covid in August of 2021. Felt like bronchitis for me. Cough lingered until end of September. Then I got vaccinated and many symptoms came and went but one new one developed chest pain so bad I landed in the ER and Docs said it is inflammation. Mostly fine but one day I had horrible pain right side rib area by liver and threw up. Fine until Thanksgiving and it happened again. Then happened again today, it’s now December. So over it all coming and going.

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My liver area progressed from random stabs to now a constant throb ready to stab me if I walk or rotate or sit too long or exercise or sudden movement.

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@tolson24

My liver area progressed from random stabs to now a constant throb ready to stab me if I walk or rotate or sit too long or exercise or sudden movement.

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So basically stabs all throughout the day everyday. They found cysts on gallbladder and liver and still are reluctant to to it to the pain despite elevated ferritin and another liver enzyme (I am a non drinker for the most part so it’s not that). My life is miserable and have so many other pains too. Primary doctor very supportive but specialist scratch their head and say and do nothing about any results found. Recently detected a lesion and just said well it could have been a birth defect yet I find a past mri from 15 plus years ago that findings reported no abnormalities (because I had my a migraine for a week. Now I get migraines weekly yet no one seems to care.

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Wishing all of my fellow long haulers a Merry Christmas and a Happy and Healthy New Year.

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I am earlier in this journey but I am seeing a naturalpath to boost my energy and immune system. I have also had to do a big mental shift and think of my recovery as a much slower process like a patient rehabilitation from a major injury. I still rage against it but it gives me perspective.

Also the social worker in me ask are you getting short term disability?

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Thank you for your comments. It is a rehabilitation, and definitely a marathon not a sprint. I used my short term disability and my PTO. In September after 23 years my work asked to "part ways". So i have taken early SS retirement. I am in a post covid clinic here and doing everything they ask. I do have preexisting conditions so it it a journey, but am blessed to have this forum and my support system here. As I have said before you must be your own advocate in this process. Thank you all for your support and input.

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Chronic Pain: 2 of multiple pains that I need help with. Joint pain in toes, hands/fingers and palms. Significant limiting use of hands and walking that has increased over past 20 months (worse in past 12 months); and now electrical pains in fingers, random tingles in torso, and arms and legs BUT worse in my feet went from annoying tingles awhile back to now since October had progressed to what I am guessing is neuropathy, is so bad I can hardly walk due to excruciating pain! I use a walker to lighten weight and walk and hobble on sides of feet!
Help! Anyone know about CBD oils to help rather than Tylenol or Advil that are not helping...or how to fix this pain or how to live with it? I eat a clean low histamine diet and weight 127 -130 lbs.

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@nant

Thank you for your comments. It is a rehabilitation, and definitely a marathon not a sprint. I used my short term disability and my PTO. In September after 23 years my work asked to "part ways". So i have taken early SS retirement. I am in a post covid clinic here and doing everything they ask. I do have preexisting conditions so it it a journey, but am blessed to have this forum and my support system here. As I have said before you must be your own advocate in this process. Thank you all for your support and input.

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“Nant ” You posted in July that, “I seem to be educating my doctors and therapists.” My exact sentiments. Many( or maybe even most) doctors are long hauler phobic. They have too much on their plate to even try to deal with an entirely “new” medical field. Enter Omicron....and we are further back on the burner. It’s the reality of the situation and requires that we forge ahead with a very proactive approach to our own situation. There is quite an impressive amount of research going on but most Drs aren’t knowledgeable regarding same. And they don’t have time! Examples: In order for me to know whether or not there were any indications in my blood work for the reasons why I have severe muscle pain and extreme weakness and tingling and numbness, and eliminate anything as a “cause” I went to my GP. I see her once a year for annual physical. In hand I had a printout of the CDC recommended list of blood tests for long haulers. This dr was so relieved that I did the leg work that she readily wrote the orders. I did have to educate her regarding the fact that people with an MTHFR gene mutation should have their homocysteine checked since there is an implication of a connection to Covid complications. All five vials came back impressively within range. After all...I’m one of those who 14 months ago was totally healthy, exercised intensely 7 days a week, ate five servings of vegetables and fruits a day. And long haulers’ tests often come back normal. The irony of it all.
Example: I had an EMG done by another unknowledgeable-of-long-hauler dilemmas-dr, who while sticking the needles in my feet, legs, and back comments under his breath to the tech assisting him, “I wish we knew what we were looking for.” EMG came back normal. The autonomic part of the test has yet to be rescheduled since the machine has been broken for the past month and they have yet to reschedule me. Cleveland Clinic for all of the above.
Example: I originally was almost excited that I could move on to another big name, Mayo Clinic, by clicking on the blue box and getting an appointment. I waited my turn in the phone line that was a matter of two days of waiting for the scheduled called. I was greeted by the nice Mayo info taker, answered all the name, address, and insurance questions, put on hold while she checked availability of appointment and was then told the first available appointment was in a year. Yep, reality. The long hauler line is long...and the answers few and far between. I am impressed that you got in a long hauler clinic. The clinics across the country are booked. I hope they help you. Meanwhile for those of us who are not clinic lucky, we must Google our symptoms and locate doctors.
There is marvelous research out of Northwestern U indicating that Drs should be ordering MRIs and ultrasounds to locate nerve damage. I’m printing out the research and about to start locating a neurologist who will place the orders. Sounds simple enough, right? Not if they have a one-size-fits-all mindset...and are long hauler phobic. All we are asking is for “a little respect” regarding what we know from having too much time to discover what the doctors need to find the time to pay attention to.
As for the Mayo mentors....Gd bless your efforts. Thanks for letting us all gather on common ground. You might want to offer your links to the doctors on staff....just in case. And fellow long haulers....keep Googling and gathering info.
And pay no mind to the blue Mayo box...it will give you false hope until next year. Just sayin...in case someone hears.

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