Mental Health: How Are You Feeling About The Focus On Long Covid? | MyFibroTeam

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Mental Health: How Are You Feeling About The Focus On Long Covid?
A MyFibroTeam Member asked a question 💭

I hear a lot about long covid and how many people have had an extremely full and healthy life up until having COVID. It would be nice to hear on mainstream media to hear how Fibromyalgia is as, if not more, debilitating as long COVID.

I do feel sympathy and empathy for long COVID sufferers, but when you speak to individuals who have this, there are a few different responses
1. Those who finally understand how awful FM is
2. Those who think that it is completely different and maybe… read more

posted March 10, 2023
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A MyFibroTeam Member

I have a sister-in-law who has Fibromyalgia and is a Covid Long Hauler. She also has Lupus SLE. It has caused her Fibromyalgia to flare as a constant flare. She is getting a lot less sleep because the flare is super bad, a lot more than anything she has had before. She has nausea all the time now. She goes to the ER once a month and they give her a "cocktail" infusion which helps her for a couple of days and then right back to the way she has been since getting Covid-19 even though she got all the vaccines and boosters for it. She has never eaten much and is very anemic as well because of it. She has lost weight and didn't have any weight to lose to begin with. She cannot take any rx medication and finally is taking a low dose of Gabapentin because she doesn't eat enough. She is starting to eat peanut butter on her toast in the morning. She has had shots for iron. She does go to her pcp a lot because they are trying different things to help her, but have told her she has to eat more in order to get an rx medication to help her. They are afraid to give her rx sleep medication but she does take otc sleep aids because she is so frail. She is the same age as I am almost 68. She also has severe anxiety. He husband is very supportive which is good. However having anxiety, she goes nonstop all day until evening in order to try to deal with her anxiety. My husband is on paxil for his anxiety as he was the same way before. It is genetic. The dr. says if you don't have serotonin, you can't produce it, you have to take paxil, or another medicine that works for you in that class of rx's. This is my husband's sister. I always say we all have a lot in common but no two of us are the same. When it comes to long haulers, I read what is put out, but I listen to my sister-in-law, but don't try to tell her what to do. Hugs and prayers to all. God bless.

posted March 10, 2023
A MyFibroTeam Member

I've had Covid now 3 times. The first was by far the worst. The 2nd & 3rd were bad enough too, but was not hospitalized. I believe I have long Covid though after reading typical symptoms of it, mine is different. Ever since the 2nd Covid I have stuffed up sinus that drain to the back of my throat and it sometimes feel like I'm choking. I'm constantly coughing up phlegm now, and though I also have COPD, that wasn't much of a problem before. I've had all but the last vaccination. Gentle hugs.

posted March 11, 2023
A MyFibroTeam Member

DleeWallech I'm sorry to hear about your SIL. I work in the healthcare system. I have done a deep dive into reading about various conditions. I took Low Dose Naltrexone for something like 1.5 years as most prescription medications I could not tolerate at all. I stopped taking centrum vitamins and tried vitafusion multivites (gummies). It was the right vitamin mixture for me. I've understood since that some of the ones like centrum don't fully dissolve. I have a family member who works in medical research and took some advice from one of the nutritional studies - also many of my very good work colleagues are gastroenterologists. With all the reading I came up with what I call my 5Fs 1 Fresh food - Organic (as little frozen or heated food) 2 Fiber (worked my way up to 30g daily) 3 Fermented foods 4 Filtered water 5 Fasting Intermittently. This was all to rebuild my microbiome and it worked. From the time I was officially diagnosed around 2016 to now, I was able to get rid of walking with a cane and now walk up to 4-5K daily five days a week. I sleep very well, I'm way happier, Fun fact: Your microbiome produces >90% of serotonin. The other thing I did to help against profound depression that runs in my family was to take SAMe. I can tolerate that without side effects as it is an amino acid. I don't know if any of it would help your SIL or husband, but those who I have seen with varying health issues who go into remission tend to follow a similar lifestyle.

posted March 10, 2023

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