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Long Term Covid articles - MUST READS
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
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HugInterested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
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Thank you for advice on what to do
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.
YES, I'm being seen by OHSU Long CoVid Clinic. My PCP told me to go back to work part time, 4 hours a day and I'd be able to work my stamina and strength back up over time. Wrong advice. I knew it was wrong when he told me, but you need a doctors note for medical leave and a job for medical insurance. I suffered every day. Crashed every week, Was sent home often as my manager could see my pain in my face and body motions.
9 months later I finally am able to be seen at OHSU Long CoVid Clinic and the first thing I'm told is that I'm doing too much.. And it is stressed by both my doctor and physical therapist that staying under, well under my energy threshold is the only way my body can heal. Literally, self care such as eating, showering, dressing and taking a walk 3 times a week for 10 minutes taking breaks every 1-2 minutes and keeping my heart rate between 90-110 is all they want me to do. If I can go a month without crashing, she tells me than they can start building me back up, but it will be at an incrementally slow pace and still take a year to two years. Pacing is key.
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1 ReactionI joined the COVID Loong-Haulers Discussion Group on Facebook. It has saved my sanity many a time over the last 17 months. You aren't allowed to give medical advice, as each person is affected uniquely and the care they need is tailored,. But can share what has worked for you and your symptoms. If not the Mayo Clinic, you might look for a CoVid Long Haul Clinic near you. OHSU has been wonderful. My doctor admits that there are still more questions than answers, but at least she believes me and doesn't gaslight me by saying its depression or being overweight, or whatever other reasons doctors give when they are too embarrassed to admit they just don't know.
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2 ReactionsI have joined the COVID-19 Long-Haulers Discussion Group on Facebook. It has been a huge support as so many long haulers are dealing with what you describe. It has saved my sanity over the last 17 months more than once. It took a referral and 9 months to be seen at OHSU COVID LONG HAUL Clinic, but it was worth it. They haven't overprescribed medications and really listen to my symptoms. They admit to still having more questions than answers, but share in depth what they do know to help me understand. I hope you find the right support you need
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.
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
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.
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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1 ReactionYes the burning is a prickly feeling at times. Certain parts of my body feel like I have a horrible sunburn and other parts feel like I have pins and needles or a prickly feeling. Your chances of finding SOMETHING to help you get moments of relief are better with seeking out a FUNCTIONAL MEDICINE Dr because I too agree that the conventional med dr's are useless. They are too programmed to treat only things they understand.