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Any tips on coping w/isolation, loss of support. LC since 2020
Post-COVID Recovery & COVID-19 | Last Active: Oct 31, 2023 | Replies (31)Comment receiving replies
Hello, I am so very sorry that you are going through this. It’s discouraging that the medical profession does not yet have effective treatments for this complex and currently poorly understood illness. I struggled with similar problems both physical and emotional. It sounds like you have a supportive caring husband and children who love you. Give yourself grace. Pacing yourself is important. Don’t force yourself to do more than your body can do at this time. Take naps when you can. Your body needs to recuperate. I consultated with an immunologist in NYC and she prescribed a very low dose of prednisone 5 mg daily for my muscle and joint aches. It resolved the pain and gave me a lot of energy to do things . I also take low dose naltrexone 4.5 mg for brain fog issues. That has also helped. Antidepressants have done nothing, but. Mood stabilizer lamotrigine 100 mg has been really effective in stabilizing the sadness and depression. These few medications have allowed me to find the energy and interest to do the things I like such as gardening, bird watching, reading, walks in nature, meeting a friend for coffee and even taking a class in swing dancing - the music is so joyful it lifts my spirits even if I can only through one song. When you have a little bit of energy, try to do something you enjoy but never force yourself. Be kind to you. Your last sentence worries me ..it sounds like you are depressed and perhaps seeing a therapist or counselor to talk about your feelings might be helpful. Please have faith and hope that as we learn more about this illness you will improve. Also consider applying for federal disability Long Covid is now categorized as a disability. Monthly payments are over 3,100 dollars. Speak to a physician with experience in disability benefits. It’s clear that your illness is preventing you from working as you once did. Apply for every government assistance that you may be eligible for. NYS is very generous even with SNAP which provides 800 dollars a month for a family of three with low income. Don’t hesitate to speak with a local social services case worker. Find a thoughtful physician who is open to allowing you to participate in your own care and be your own advocate. Based on personal,expericme - prednisone 5 mg one daily, low dose naltrexone 4.5 mg daily and lamotrigine 100 mg once daily have been life changing, I wish you all the best
Replies to "Hello, I am so very sorry that you are going through this. It’s discouraging that the..."
Are you taking prednisone every day?
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I appreciate the suggestions about the medications. I’ve tried so many things w/no improvement, which is discouraging.
If you’re able to garden & go swing dancing, it sounds like you’re doing pretty well!
I improved quite a bit for about 8 months. I was able to go on walks, run errands, etc. I’d give anything to have that level of mobility back.
I then began having cardiac issues again. Since reinfection, I’m nearly bedbound. I can’t walk to my own mailbox, let alone go out to see friends or to the store.
Friends, even family, who were supportive for the first 6-12 months stopped returning my msgs quite a while ago. I heard from someone else that it “makes them too sad to see me so sick”. And others, don’t want a friend who can’t go anywhere. I basically have to live like it’s still Spring 2020.
I only leave my house for doctor appointments & that leads to days-long crashes.
Of course I’m down bc who wouldn’t be? I think a lot of people in this forum are a bit older as they discuss taking early retirement due to cognitive issues. I’m in my early 40s. I was a competitive swimmer & runner prior to this illness. I’ve gained over 50lbs due to my inability to exercise at all (SVT). I have a therapist & psychiatrist & am fine but this situation is just incredibly hard. I’ve had my whole life ripped out from under me in my prime.
I also lost my father to Covid. So this has been 3 nightmarish years.
I work with my therapist on coping strategies but we can’t change the logistics of my situation. There’s not much wiggle room.
I’ve also been to countless specialists & honestly none have been any help at all. They recognize all of the severe cardiac issues but kind of shrug as to how to move forward. Ive tried 3 cardiologists! They’re all baffled how I could be so young & previously very fit & now can’t walk 10’ w/out my HR jumping to 160. It seems too complicated & they don’t really want to try.
And the appts are so physically taxing for me, it’s hard to keep searching for new providers who may actually care and/or help. At what point am I actually impeding my healing by continuing these countless appts. that are no help at all?
So it feels like I’m in a holding pattern until there’s a breakthrough in research. This is the hardest thing I’ve ever done. So few understand how difficult it is. Thanks again for your suggestions.