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Awful fatigue, shortness of breath, brain fog..anything helping you?
I have been a long hauler 2 years now. Fatigue, shortness of breath, brain fog and depression have changed my life. I have tried and done everything the doctors and others have told me in these 2 years. I set 1 or 2 goals for the day and do them in the morning stopping to rest when I need to. I fix dinner in the morning too. Afternoons are nap time 2 to 3 hours. I eat alot better and stay hydrated. It has really changed my life but I finally know what is wrong with me! Have you got any suggestions??
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@taunya6543
Taunya, I have mixed feelings about Naltrexone. It has to be specially compounded at a compounding pharmacy. I was started on a .5 ml dose. After two weeks, dosage went up to 1 ml. Two weeks later, it went up to 2 ml. In other words, I started up with a .5 ml capsule, which increased to two capsules, which increased to four capsules. When the pharmacist tried to put 2 ml. in one capsule, my body did not tolerate it well. It seemed truly odd.We have tried again and I’m not tolerating it. This single capsule makes me feel extra tired, a little nauseated, a little dizzy. As of this morning, I have stopped taking all naltrexone. I will consult with my PCP to see what she thinks. Just looking online and checking several hospitals and clinics, I can see that many drugs are being used to try to help patients like us. I am starting to think that tackling Long COVID needs a multi-disciplinary approach. I need the supplements, I need proper rest, I need physical therapy geared to Long Covid patients, perhaps I need medication in order that I may sleep well. I need positive stimulation and affirmation, especially around this illness. Nowadays, there are so many scientific papers from excellent journals that talk about long Covid. In reading them, we can see that some medications or therapies help
some people, but not others. The further I go, the more I see how complicated this process of healing seems to be.
@taunya6543 Hello, Low Dose Naltrexone has made a huge difference for me. Started at 1.5 mg and titrated up to 4.5 mg. Long Covid since July 2024 with all the common symptoms - fatigue, brain fog, PEM, insomnia, tachycardia, and shortness of breath. I started Naltrexone in April of 2025. Within a few weeks I noticed improvement to some degree on the lower dose (1.5 mg). Wasn't until I started 4.5 mg that I really noticed a difference.
@shario It really works for me. I have been on low dose naltrexone for 8 months and after 5 years of long covid, I can now wake up nearly pain free, walk 30 minutes without shortness of breath or exhaustion, only have palpitations when I overdo it, skin is clear of rashes, and my food sensitivities are going away. It took a while but it does seem to be regulating my over reactive immune system. I can still eat foods that I know will increase my pain...and they do! And I know I can still deplete my energy too much and feel badly for a few days...but if I stay within my long covid induced limits, I have a much more normal life on naltrexone.
I’m tired of explaining why I’m tired, why I have to explain these sudden losses of what I want to say (brain fog), etc. ad nauseam. I’m also dealing with relatives who think I’m just getting demented/Alzheimer’s or just looking for attention.
suef
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1 Reaction@dhawker08 thanks for your feedback back...going to my doctor with this!
@suefish oh how i understand all that! I'm sick and tired of being sick and tired! I'm sure everyone else is tired of me using it to not be able to do things..it's hard looking normal to friends and yet understand how awful you feel sometimes and yes just being tired!
@caldiana13 Very well said, it all is so frustrating! My daughter told me of a friend who got well on a very strick diet. It was for 5 weeks. I am trying Whole30 for 30 days..no dariy..no sugars..and no grains..only on day 12 and no change but it's early..also a smoothie every morning with anti - inflammation, greens..fruit..and everything is can work in. I have lost 3 lbs however so something is good out of trying this..also I am trying to sleep alot...good luck on your journey....
@vostie Thank for some good news! I am going to try it.
@taunya6543 thank you for your thoughts and support. I know EXACTLY what you mean. I think that some of my friends just figure that I’m crazy and that they’re tired of hearing “excuses.” Sometimes I feel a little bit better and then I forget the name of a restaurant where I eat often. Even my family is getting fed up.
@suefish I know it is hard especially with family but you need to keep going..find joy in what you can do..be kind to yourself on down days and try to find some peace.