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When to accept permanent long covid?
Post-COVID Recovery & COVID-19 | Last Active: Jun 10 7:12pm | Replies (162)Comment receiving replies
Hi,
I had Covid the end of 2019, beginning of 2020. I had ( have ) long haul covid. My problem has been my Dr. s they treat my symptoms separately. No one sees the problem as just being one thing. Then there's the Dr's that say everything looks fine on your test, I'm not seeing anything. Then I doubt myself, am I crazy? The ringing in my ears that never stops, extreme fatigue. I don't go to Drs now, I have given up on even trying to see if anyone can help. When I have asked about long haul covid as being a problem, they tell me that maybe I should see if I can find someone who specializes in the long haul. I figure this is what I have to live with. I use to own a restaurant, now I can't even go into a restaurant. My business is gone, my husband has passed away. There is nothing left, unless you count long-haul covid.
Replies to "Hi, I had Covid the end of 2019, beginning of 2020. I had ( have )..."
I can empathize with your post. Going on 3 years of this. I lost my partner of 20+ years 12/18/23. I found him deceased in our house. He was 56. This is an autoimmune disease. I am convinced of that. Inflammation plays a big part of this. I, too, have tinnitus. Sometimes it is louder than other times. (Usually in the morning and evening). The doctors are stumped, honestly. There is research going on. I suggest you check out https://recovercovid.org/ They are doing research, in fact they have a large study beginning at the end of the year and are looking for participants. They also have webinars that discuss the results of studies they have finished. Some of it is over my head, but in the beginning, I had to do my own research due to the doctors I saw, knowing NOTHING about LC. I want to say that I understand the hopeless feelings. I also want to thank you for your post. You are still here and I know it feels as if there is nothing left. I have felt that as well, but you are here and your post has helped me realize I am not alone. This support group has helped me so much. Hang in there. You are not crazy. I have to remain present, in the moment. My mind will spin out and "future trip." I do not know the future. All I have is today.
Where are you located? There are long haul clinics throughout the USA.
I had my first visit last week; I have seen more health professionals than I care to mention as we winter elsewhere and that is where I developed LC - so also have a medical team here (gastroenterology, cardiology, pulmonology, dermatology, allergy, ENT). We have a LC clinic here (Boise) and also have a few clinics in Arizona where we winter. As there is no “test” for long covid, getting an appointment is often self-reporting. The physician (internist) at the clinic here is helpful, including his team. He said he’s willing to try a large variety of therapies. He’s even had patients that make their own LDN (crazy) as it has to be made in a compounding pharmacy and can be expensive.
I find the most difficult thing about getting medical help is feeling well enough to get to the appointment or test. LC is a barrier to getting help - feeling so ill and gathering enough energy to get out the door.
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I'm so sorry for your situation. Much of it sounds so familiar. But the last part of your post is heartbreaking. Please reach out for as much support as you can find to help you through this. Best wishes and hugs.