Long Term Covid articles - MUST READS

Posted by summerof42 @summerof42, Aug 26, 2023

The priceless information below is something that ALL physicians need to be reading to better understand, acknowledge and support their patients. I've been suffering for 3 yrs now, currently very ill and down to 90 lbs, 30+ horrible symptoms, can barely function and in horrific pain all over my body. I know I can't go on much longer and sadly, I can't find any doctor to help me. I love life so much, but this is so very hard.

I want to help others and if we make every effort to provide this information and link to the doctors, including Mayo, maybe we can get the help we need. For me, it's too late and too much damage in my body.

https://hms.harvard.edu/news/most-important-question-about-long-covid

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@seeker4answers

When you say skin burning, is it like a prickly burning feeling? Did you ever feel it inside your mouth?
I had very bad covid and took months for all symptoms to go away, but a year later, a life event stressed me so badly that I started to have very bad symptoms and have for months now. I’m convinced the virus living dormant has taken up with another and I’m as you were wondering how long I can live like this.
I have to find a functional med dr. The ones I’ve seen are useless. Completely useless.

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P.S YES I did and still do feel the prickly feeling or tingling in my mouth at times. When I tell my doctors this they look at me like I have three heads. At this point though I don't really care what they think because if something triggers an A-HA! moment in their heads, I will tell them I'm the queen of Sheba if it will give help and answers to what we are all going through post covid.

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@memcat

Low Dose Naltrexone has been a huge help in relieving the worst of my pain. I'd been using edibles mostly at night so I could sleep, but they are expensive. My pain was 6-9 24/7. I used pain cream during the day so I could function to some degree. But the LDN keeps my pain bearable. I still have to pace, as my pain increases if I don't stay in my energy envelope, but it has been a huge help in getting some relief. Pepcid and Zyrtec are what I'm on for the Mast Cell Issue. I still have gastrointestinal issues that she gave me a gastropathies diet to follow. And while my oxygen levels are fine, I'm short of breath often through out the day.

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I am so glad to hear the LDN is helping you!

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@jimmy4

That med did agree with me
I also took steroids and what happen-now I have cramps in my leg and very hard to walk or sleep
I feel like what ever I take it make me worse

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I was on steroids for three days before I could not take them any longer. The heartburn and jitters was something I just could not stand. I too have troubles with taking things because it all seems to make me worse. I had three ambulance trips after starting new meds that were prescribed at baby doses, for reactions that were off the charts (hallucinations, BP sky rocketing, severe muscle cramps) You are not alone in this mess. I only hope that the researchers figure things out to help those with unexplainable issues.

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@ritzgerb

I am in week 4 of taking LDN and I think it might be helping with fatigue...in a few more wks I should have a more difinitive response.

I would like to know if long haulers, who have all their vaccines and boosters, are getting the Fall booster.

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Well....in terms of the BOOSTER my PCP has recommended I do not add any more fuel to the fire that is going on inside of me by getting a booster. If anyone does get the booster and they feel better please let the rest of us know. As for me, I will be following my docs advice for now.

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@macastronomer

I don't know how long it has been since I originally had covid. It was sometime during the height of it all when we were all masked and locked down. Long covid, for me, made my muscles fatigue with any kind of continuous use. This primarily hit my arms, although I felt it in my legs some as well. I had shortness of breath and I would feel flutters in my chest sometimes.

The fatigue I had was odd. Early on when I used my muscles to do heavy lifting, I would pay for it starting 2 days later and it would last for at least a week. A year later and I could still do heavy lifting and and I had no repercussions if it was fairly quick (carrying something for a minute and put it down). But any amount of consistent weight (lifting my phone to my ear for 5 minutes) resulted in fatigue, carrying anything light for 10 minutes, and holding my head up all day at work was killing my neck.

That neck pain became bad and would result in excruciating headaches. A PT said this was the muscles causing nuchal ridge pain. I ordered a device (a rubber triangle thing) that manually pushes/separates/rubs this area while laying on it and turning my head. It would make my neck crack and release the muscle tension. It worked great. I had to use it for the last year or so and still use it from time to time.

Getting better (which I'm still doing) is hard to notice because improvements are so slight. But, over long periods of time, I know what it was like back then and I can see the improvements. Noticing fatigue is less and less often. Shortness of breath and flutters are very infrequent.

Before covid I was taking the stairs to work 14 to 16 flights. I have now done that a couple times in the last couple months and am starting to feel like starting to do it again.

I'm thankful this is getting better for me. Here is a recollection of my situation: I originally got the Covid vaccine early on. One of the first when the "I got shot" photo-selfie sign was up. I never got boosted after that. I have had a tested positive result of Covid twice, and have not probably had it more than that. But I have also had negative results even after being exposed from close contact with other Covid positive people.

I will pray for all of you who are suffering afflictions with the results of this whole thing (be it Covid, vaccines, whatever). I pray for you to see positive results and have hope that your symptoms fade away faster than mine have.

God Bless

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Could you please tell us what the neck device was and where you ordered it? I would like to get one as my PC ordered PT for me but my insurance will not cover.
I’ve been over 3 years in and will still crash for days after a short visit Friday a friend or a doctor appointment. Glad to hear you’re on your way to recovery.

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It was the Davinci Tool. I ordered it from Amazon. I ordered the combo pack with came with a Firm and an Extra Firm version. The Firm is the better of the two as it has a little more give. If you get both, start with the Firm and eventually you can use the Extra Firm when you get used to using it.

The physical therapist I worked with used his fingers like a stand on my neck while I laid on my back and it immediately felt great. This device can be placed on three different sides, but the side the works the best is the Scalloped Edge. It is angled to match your nuchal ridge and the curvature of your skull.

When you move your head slightly in the direction as if you're looking up-down-right-left it will work out those muscles. As those relax, you can slightly lift and set down your head in different positions and it will crack a few cervical vertebrae. The pressure release is great and those muscles let go and those headaches subside.

I only recommend using it for about 5 minutes at first. Over time you can add longer periods. Eventually the need for it subsides.

Here's a pic and I'll follow with another reply with a link (as I'm not sure it will let me put a link in here).

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@macastronomer

It was the Davinci Tool. I ordered it from Amazon. I ordered the combo pack with came with a Firm and an Extra Firm version. The Firm is the better of the two as it has a little more give. If you get both, start with the Firm and eventually you can use the Extra Firm when you get used to using it.

The physical therapist I worked with used his fingers like a stand on my neck while I laid on my back and it immediately felt great. This device can be placed on three different sides, but the side the works the best is the Scalloped Edge. It is angled to match your nuchal ridge and the curvature of your skull.

When you move your head slightly in the direction as if you're looking up-down-right-left it will work out those muscles. As those relax, you can slightly lift and set down your head in different positions and it will crack a few cervical vertebrae. The pressure release is great and those muscles let go and those headaches subside.

I only recommend using it for about 5 minutes at first. Over time you can add longer periods. Eventually the need for it subsides.

Here's a pic and I'll follow with another reply with a link (as I'm not sure it will let me put a link in here).

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Just FYI, Medscape, a medical education and news service for medical professionals, released a podcast abt Long COVID. This is part of a series. The Infection specialist physician stated that the SARS-CoV-2 virus is known to be a neurotropic virus. It crosses the blood brain barrier and enters the brain. The physicians discussed that it also causes cardiovascular symptoms (postural hypotension etc) but they don't know why.
They are not offering suggestions for treatment at this time. They are looking forward to something in the future.
I think it's important for sufferers to have validation and evidence based knowledge of some of the causes of our symptoms. They stated 10-15% of those who contract/contacted COVID19 developed Long COVID. They mentioned that vaccinated individuals were less likely to develop this and that co-morbidities were a greater risk factors than being in the oldest age group.
Long COVID is an ongoing podcast subject in Medscape, arguably one of the most regularly read sources for medical professionals.

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I went to the long covid clinic for my first appointment last Friday, Sep 15. They told me that, regardless of the cause of the disease, an anti-inflammatory diet should help. They also recommended n-acetyl cysteine, which I haven't tried yet.

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@summerof42

I know I said, "its' too late for me," but that's due in part to my current health and long term Covid ravaging my body, creating numerous symptoms, being alone and in many aspects due to having no acknowledgement, support or help from any and all doctors. I've branded as this just being "anxiety." So, if and when I see a new doctor, hoping they can help, my chart is red flagged as Dx for anxiety and also jumping around seeing numerous doctors. The last nurse told me as such, so they rush me off - even at 89 lbs. If they were in my shoes and going this, you can bet your bottom dollar they would be trying to find a doctor to help.

When I was in the hospital, they dismissed me the next day telling me to follow with PCP, who is horrible, I begged for them to help with no luck. When they wanted to give me blood thinners (can you imagine!) because they said all patients are provided this drug because of being in bed, I refused and said I will find the strength get up and walk around. They looked at that as me wanting to walk off the calories! I didn't need to be on blood thinners.

I keep a food diary since they don't believe I eat every hour to try and gain weight, I even brought in a friend who told the doctor how much I eat, they don't' believe me and said so, even though it was documented in the hospital everything I ate. The answer from the GI I saw due to my concern with the weight loss, I need a feeding tube. What they need to do is find out "why" I'm losing the weight and not absorbing my nutrients, especially given the extreme pain in my abdomen. Several days ago, I was awakened during the night with excruciating pain in my abdomen and there was nothing I could do. If I went to ER, they'll send me home, even though I have a Inguinal hernia. I now have low B-12, low ferritin, low zinc, chalazion that developed and became infected, requiring two surgeries, etc and they don't care. When I try so hard to tell them "anxiety" wouldn't cause the above mentioned, etc they ignore me.

I so badly want to post my plea for anyone on this forum who lives in Wisconsin to please refer me to a doctor who knows about long term covid and can help. I don't know where else to turn 🙁

Love & Hugs to all for your true compassion. I pray our Dear Lord to help us all during this difficult time.

I pray every day for our Dear Lord to hear my prayers and help me.

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I am so sorry for everything you're going through. I was having a lot of gastro problems, bloating, pain just not right. We know our own bodies. Did a pelvic Ultrasound and was screened for cervical cancer. I then realized I was actually very constipated and did a dose of epsom salts which seemed to clear up a blockage and got things moving. I feel much better. Was also told by a friend that chewing organic fennel seeds, half a teaspoon, till they're pulverized and swallowing would be helpful. Which it has been! I finally had gas which I hadn't notice wasn't happening. I get so overwhelmed with all of my symptoms and the brain, fog and the fatigue and the discouragement that it's hard to think straight on these things. And I forget what I know. Really keeping an eye on things to make sure that I am regular and not constipated. Now the bloated feeling is gone, thank God.
Sending you Gods blessings and a big hug!

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