Not alone. I am considering doing EBOO. It is a process of cleaning and oxygenating the blood. Dr Volpp in Carlsbad California is the doctor. I find that exercising makes my tremors and fatigue worse. I also have had bouts of depression. Very strange. Stay strong. ❤️
I gave a family member suffering from tremors which seem to aggravate her severe anxiety and numerous other post COVID symptoms. We have not had any success in finding someone who can help. This has been going on for over 3 months. Looking for any help!
I just spent 10 days at Mayo for a post/Covid work up. I can’t recommend them highly enough! I saw Dr. Overgaard in the consultative medicine group. If you can get yourself to Mayo, then do it. You can refer yourself. Just call the main Mayo number and ask for a long Covid clinic appt. (My stay was a bit longer than usual because I have other issues too). They have a great program.
I just spent 10 days at Mayo for a post/Covid work up. I can’t recommend them highly enough! I saw Dr. Overgaard in the consultative medicine group. If you can get yourself to Mayo, then do it. You can refer yourself. Just call the main Mayo number and ask for a long Covid clinic appt. (My stay was a bit longer than usual because I have other issues too). They have a great program.
I had so many tests, too many to list. They gave you meet with a doctor via video first to determine how to proceed, what initial tests they want. Then you meet Day 1 with the lead physician and they gave you see other specialists who order their own tests, and so forth. It’s the most comprehensive card I have ever received.
@blgilles I think one has to be careful in saying that all long-COVID patients are "like CFS/ME" - this is not the case for many of us. I don't have exertional malaise or blood vessel/heart/lung/gut issues, for example. My exhaustion is caused by electrical disturbance when trying to rest or sleep, which causes small muscle spasms, which in turn results in larger tendon and muscle issues. I am in the neuro cohort, in which most of our issues are caused by central nervous system overactivation/autonomic dysfunction. This group is characterized by electrical stimulation of the CNS, which leads to sensory issues, brain and muscle inflammation, buzzing and tingling sensations caused by neuropathy. It is likely exacerbated by inflammation, but I don't seem to have the vascular issues that would go along with what you're describing. I do think there are two overarching categories of long-COVID - CFS/ME type and neurological types, within which there is the POTS group and the CNS small-fiber neuropathy group.
Thank you for the detailed response though. I think it could help many find relief.
Early on I took some cyclobenzaprine to reduce muscle spasming. I am taking some general anti-inflammatory supplements (fish oil, circumen, turmeric, melatonin etc.). Valium and CBD help me some during the day with residual vibrations, but the worst by far is at night. I honestly haven't found anything that's really helped with that. I think an escalation may be called for, like a very intense round of anti-inflammatories and/or I keep hearing people are trying gabapentin. Not my favorite idea but I'll probably try anything that seems reasonable at this point. Alpha- and beta-blockers have not worked. They would work, I think, if the cause of it were reduced or removed - currently I feel like it's inflammation, both brain and body.
I just spent 10 days at Mayo for a post/Covid work up. I can’t recommend them highly enough! I saw Dr. Overgaard in the consultative medicine group. If you can get yourself to Mayo, then do it. You can refer yourself. Just call the main Mayo number and ask for a long Covid clinic appt. (My stay was a bit longer than usual because I have other issues too). They have a great program.
I have prayed for 2 years to be able to go to the Mayo..but I have not been accepted and turned me down because of my insurance. I hsve been affected literally head to foot with e everything in between. Sadly, I had to apply for Disability. Irs a hard pill to swallow at 57. It started with stomach pain in mY of 21. 3 1/2 weeks later I came out with half my kidney that has infar Ted whi h means dead. I have chronic fatigue, depression, anxiety, severe tinnitus, lost a 1/4 of my hearing. I have an immune deficiency which has made it worse. My labs show I have various blood diseases that are shown to be indicators of Covid. Protein C, factor v. Factor v111, d dimer, igg deficiency which now I have to get weekly infusions. I have severe brain fog, tremors to where I almost can't write. I'm meeting with a neurosurgeon on Monday, I was told a few weeks ago I have 2 aneurysms 😳 I sleep about 3 hrs a night and have been told I have stage 2 esophogit6. Oddly enough I have adth6but have not even had to use my inhaler.
This has been the longest 2 yrs. My nephrologis recommended the May after my 2nd visit, DENIED, Then Barnes Jewush in st. Louis DENIED then National jewish in Denver. They have a top rating for immunology and asthma w a great Covid clinic. My dr put in referal in February of 22 and sounded promising. He put it as URGENT as all insurance companies and physicians know thT means a 62 hr response with an approval or denial. Well, let's just say 100 plus phone calls, my dr and nurse faxed and relaxed over 100 pages, broken promises etc. 4 in a half months later, ALMOST 5, I WAS DENIED. THIS SHOULD BE CONSIDERED ILLEGAL. THEY ARE AND HAVE BEEN HOLDING MY LIFE IN THEIR HANDS TO DECIDE IF IM WORTHY OF LIVING. All this has affected every aspect of my life and NOW in process of going on disability. I have no money, rental assistance from the state of kansas ended so sitting here worried every night ad I go to bed, of I will wake up. With my factor v111 disorder it is a far greater possibility of having a blood clot at any point. I follow Dr V's podcasts and read articles. He spoke about long haul cobid patients and how we have to treat like people gave long haul and then cross off symptoms because this will result in 1 out of 3 people going on disability. Well here I am. I just wonder where I would be had I got any help almost 2 years ago? It's quite sad. My kids are 20 and 21 away at college. I've raised them since 2013 on my own since their father passed away. I would like to think I could live plenty more years to see them grow. But I'm really questioning how long I have. Every month I'm in the er or hospital and they find more and more. My body is manifesting from inside out. Now have full blown psoriasiss. It's so bad I'm beginning to isolate. Half of my friends think I'm crazy or just lazy. Believe me I wouldn't wish this on anyone.
About 9 months post vax I developed tremors ( internal tremors started weeks after vax) My fingers looked like I was always playing the piano and my whole body twitched. I was on baclofen for a month and then almost all tremors resolved. I don’t need to take it anymore. I’m not sure if it resolved because of meds or time.
Connect
Connect
Like
Helpful
Hug
Exercise also makes my tremors worse.
I just spent 10 days at Mayo for a post/Covid work up. I can’t recommend them highly enough! I saw Dr. Overgaard in the consultative medicine group. If you can get yourself to Mayo, then do it. You can refer yourself. Just call the main Mayo number and ask for a long Covid clinic appt. (My stay was a bit longer than usual because I have other issues too). They have a great program.
-
Like -
Helpful -
Hug
1 Reactionwhat did they all do at mayo for the post/covid work up? what where your symptoms?? i know mayo is a great place...
I had so many tests, too many to list. They gave you meet with a doctor via video first to determine how to proceed, what initial tests they want. Then you meet Day 1 with the lead physician and they gave you see other specialists who order their own tests, and so forth. It’s the most comprehensive card I have ever received.
I have very similar symptoms. What are you doing to treat?
I am taking 4 Ibuprofen, 1 Gabapentin, & 1 muscle relaxer every 6 hours. Seems to help me get around.
Early on I took some cyclobenzaprine to reduce muscle spasming. I am taking some general anti-inflammatory supplements (fish oil, circumen, turmeric, melatonin etc.). Valium and CBD help me some during the day with residual vibrations, but the worst by far is at night. I honestly haven't found anything that's really helped with that. I think an escalation may be called for, like a very intense round of anti-inflammatories and/or I keep hearing people are trying gabapentin. Not my favorite idea but I'll probably try anything that seems reasonable at this point. Alpha- and beta-blockers have not worked. They would work, I think, if the cause of it were reduced or removed - currently I feel like it's inflammation, both brain and body.
I have prayed for 2 years to be able to go to the Mayo..but I have not been accepted and turned me down because of my insurance. I hsve been affected literally head to foot with e everything in between. Sadly, I had to apply for Disability. Irs a hard pill to swallow at 57. It started with stomach pain in mY of 21. 3 1/2 weeks later I came out with half my kidney that has infar Ted whi h means dead. I have chronic fatigue, depression, anxiety, severe tinnitus, lost a 1/4 of my hearing. I have an immune deficiency which has made it worse. My labs show I have various blood diseases that are shown to be indicators of Covid. Protein C, factor v. Factor v111, d dimer, igg deficiency which now I have to get weekly infusions. I have severe brain fog, tremors to where I almost can't write. I'm meeting with a neurosurgeon on Monday, I was told a few weeks ago I have 2 aneurysms 😳 I sleep about 3 hrs a night and have been told I have stage 2 esophogit6. Oddly enough I have adth6but have not even had to use my inhaler.
This has been the longest 2 yrs. My nephrologis recommended the May after my 2nd visit, DENIED, Then Barnes Jewush in st. Louis DENIED then National jewish in Denver. They have a top rating for immunology and asthma w a great Covid clinic. My dr put in referal in February of 22 and sounded promising. He put it as URGENT as all insurance companies and physicians know thT means a 62 hr response with an approval or denial. Well, let's just say 100 plus phone calls, my dr and nurse faxed and relaxed over 100 pages, broken promises etc. 4 in a half months later, ALMOST 5, I WAS DENIED. THIS SHOULD BE CONSIDERED ILLEGAL. THEY ARE AND HAVE BEEN HOLDING MY LIFE IN THEIR HANDS TO DECIDE IF IM WORTHY OF LIVING. All this has affected every aspect of my life and NOW in process of going on disability. I have no money, rental assistance from the state of kansas ended so sitting here worried every night ad I go to bed, of I will wake up. With my factor v111 disorder it is a far greater possibility of having a blood clot at any point. I follow Dr V's podcasts and read articles. He spoke about long haul cobid patients and how we have to treat like people gave long haul and then cross off symptoms because this will result in 1 out of 3 people going on disability. Well here I am. I just wonder where I would be had I got any help almost 2 years ago? It's quite sad. My kids are 20 and 21 away at college. I've raised them since 2013 on my own since their father passed away. I would like to think I could live plenty more years to see them grow. But I'm really questioning how long I have. Every month I'm in the er or hospital and they find more and more. My body is manifesting from inside out. Now have full blown psoriasiss. It's so bad I'm beginning to isolate. Half of my friends think I'm crazy or just lazy. Believe me I wouldn't wish this on anyone.
-
Like -
Helpful -
Hug
7 ReactionsThis is going to sound lame, but I take 1/2 of a 25mg Benadryl at nighttime and it helps a lot.
About 9 months post vax I developed tremors ( internal tremors started weeks after vax) My fingers looked like I was always playing the piano and my whole body twitched. I was on baclofen for a month and then almost all tremors resolved. I don’t need to take it anymore. I’m not sure if it resolved because of meds or time.
-
Like -
Helpful -
Hug
2 Reactions