Long covid and venting my frustration

I had covid for the first time in August of this year, I also have cystic fibrosis and reactive hypoglycemia.

Well a month after covid I got double pnemounia and since then I’ve never been the same. I am skin and bones, my blood sugar is wacko, but what mostly bothers me is my stamina is completely gone. If I do activity (by the I mean like walking or putting up Christmas lights for example) for more then 10-20 minutes I am completely wiped out and have to sit/lay down.

My doctor told me recently that covid has hit a lot of CF patients like this and it could take a few months
I just want my life back, I’m frustrated and scared

7 Likes

When I was at my last neurological appointment (I have MS) I told the doctor I probably had long Covid. He told me that he had read that SOME people do recover and get their health back from long Covid, and that the neurological symptoms tend to go away, in time.

I have no idea of how this works with people with CF, but for some people at least there is hope.

4 Likes

Are there any long covid treatment clinics in your area? Or perhaps you can join online? Having the support of others going through similar issues and working to find solutions may really help. I hope you do see improvements soon, and if not, this is a great place to vent/share your feelings and frustrations!

2 Likes

I’m part of a Reddit group of people also working on recovery, beyond that my CF doctor is taking the lead

1 Like

If your blood sugar is really crazy, I would probably ask a GI doctor to check your gastric emptying times. If your stomach empties too fast it does scary things to your blood sugar.

Another thing you may want to do is consult a nutritionist and take a close look that your protein and caloric requirements are being met or exceeded.

1 Like

I had a work up done last year in ICU actually. What happening is with high carbs meals my pancreas is overproducing insulin sending me low.
I had figured out the balance mostly before covid, but now sometimes that doesn’t work anymore (I’m guessing from a 10 pound weight loss)

I’ve had Long Covid since March 2020. I had to move to the care of a specialist community Diabetic team because my control went really wild, even with 20 years experience under my belt. About 5-10% of people with LC develop diabetes. My cholesterol level has also shot up, for unknown reason but I guess LC, and I’m currently negotiating with my GP about it. The medical professionals still really don’t know what to do about Long Covid because the disease is both less than three years old and also a very strange one. Many viral infections have a long tail of malaise but most don’t throw in new symptoms several months later. I have found support in a specialist Facebook group, as we patients tend to have the best solutions to problems, and have found acupuncture, which treats the whole body, the most effective treatment.

5 Likes

That sounds horrid, and I’m sorry you are struggling with it. I send jingles your way and will continue to mask in public.

2 Likes