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Any tips to help recovery for a COVID Long-Hauler?
I was diagnosed with COVID-19 at the end of Feb 2021. Nearly three months later, neither my taste nor smell has been fully restored. My husband also tested positive and was completely out of it for one full week. He could not even get out of bed. My case seemed to be mild. Though I felt ill, I was not bed-ridden nor did I feel debilitated. Most of my activities (household and work) were not halted. My husband has zero lingering effects from his infection, meanwhile I am still experiencing chills, headaches, fatigue, and body aches on and off weekly. Additionally, I'm undergoing testing for heart valve issues. It's becoming increasingly difficult to tolerate these lasting symptoms with no end in sight. Any suggestions/tips to aid in a faster recovery would be welcomed and very much appreciated.
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I'm a long-hauler myself, and it's been the hardest thing I've ever gone through, -and I went through cancer treatment and a stem-cell transplant 4 yrs ago. I got Covid-19 in mid-March of this year. I was fully vaccinated at the time, as I'm a medical lab technologist and work at a hospital. My 2nd Moderna vaccine shot was late Jan. (As a health care worker, I don't want to discourage anyone from getting the vaccine, but I'm one of the unfortunate 5.9%, I guess.) My husband came down with Covid-19 first as he was not vaccinated, (he didn't fit the criteria to get vaccinated in Iowa at that time) and I was stunned to find I had contracted it a few days later.
My first symptoms were not terribly severe, -first I had sinus pain, sl sore throat and headaches, fever, dizziness, sm cough, and then the next week I had diarrhea. I thought I'd recovered and returned to work one evening only to discover I was still too dizzy and unwell to work. The worst symptoms for me came after the first 2 weeks of the illness, but I was never hospitalized. Horrible headaches (sinuses), light-headedness, fevers going up to 103, intestinal issues, and taste alterations. (Exaggerated taste, is what I'd call it. Everything tasted like it had too much salt, and I couldn't eat. Water tasted sweet. Fortunately, my taste issues have resolved.) I've lost 12 pounds as I was basically in bed with exhaustion, and ate very little for 2 months. I'm sure I lost muscle mass from lying around so much. Now I am up and around more, but currently have shortness of breath, (which started about 6 weeks ago), along with severe fatigue, continuing fevers, and an intermittent headache that can really incapacitate me.
I get exhausted so easily. Stairs are difficult to take, - I must pause and sit, or lie down after a flight. I used to exercise 4-5 days a week before this happened, and I am stunned to find I am not able to regain energy or strength. The slowness of my recovery has been very frustrating, and emotionally taxing. I can't really make plans to do anything, (or work) as I never know how I will feel on any given day. If I have a good day and actually accomplish things, it seems I pay for it for the next 2 days, and I have to continually rest. I wish there were a support group that wasn't on FB, as not everyone wants a FB account. (I am one of those people!) It has been so isolating, this illness, and many people just don't understand. If anyone knows of an on-line support group that isn't FB connected, I would love to know about it.
I just started PT for post covid recovery yesterday, and I'm hoping that will improve things. Also, I have a visit scheduled at Mayo this next week. The staff at Mayo have been wonderful to work with through e-visits, as locally, the doctors where I live just don't know enough about long covid. Thanks for letting me vent, but I suspect I've been too verbose. I guess I've given a long-haul comment! I certainly have a great deal of sympathy for other long-haulers out there!!
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4 ReactionsDear @lauriekh I went through radiation that ended in March 2020. Husband and both contracted Covid. I broke ribs coughing for months. Got vaccinated with second one March 11, 2021. Came down with Covid AGAIN April 6, and was hospitalized. SOB, no energy, sore throat, feel like you are dying...yes, I totally understand what you say! I too am a long-hauler.
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1 ReactionI came down with COVID 19 the beginning of January 2021. I was hospitalized for one day and sent home. 2 days later I went back to the ER and was sent home with oxygen. I was in bed for the rest of January. I have had long haul symptoms also.
I had a COVID vaccine and for 3 days after I felt like I was getting COVID all over again. What I am curious about is how have other people who were really sick with COVID, have dealt with the vaccine? I'm not sure that I want to take the 2nd vaccine.
Any advice?
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1 ReactionHello @lauriekh and welcome to Mayo Clinic Connect and the COVID-19 Group. Thank you for joining and sharing your experience with COVID and your long haul symptoms.
I am so glad to hear that you are seeking care at Mayo next week. Will you come back regularly to this discussion and share updates as you walk through your journey and care?
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1 ReactionYour story is exactly like my story, only I am a long-hauler from Mono, which I contracted in October, 2019. I have not been well since, and no doctors have any suggestions or help for me. I can no longer work or live a normal life. I have terrible headaches, dizziness, nausea, extreme fatigue, and I lost 15 pounds (not good in my case.) Many days I lay in bed not really alive and not quite dead. No one really believes I'm sick because I look normal most days. I understand perfectly what you are saying, but doctors also don't seem to want to connect the dots between COVID long-haulers and other virus long-haulers. We ALL need help, and some have been suffering for years and decades. I am sick of being told that if I just had a positive attitude I would get well. That is such nonsense. This is a real condition that needs much more attention and research. There are probably millions of us suffering and yet we are ignored or pushed aside or worse - ridiculed. It's isolating and heart breaking. 21 months and counting.....
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3 ReactionsTo all the long-haulers, we are an exclusive bunch...at least! Here is a new dilemma for me! Any good detectives out there that may solve the "mystery?" Both husband and myself came down with Covid in March 2020, just as I was finishing radiation treatment for throat cancer. After getting both vaccinations in March 2021, I contracted Covid for the second time April 2021, and was hospitalized overnight. I am still experiencing Shortness-of-Breath (SOB), Fatigue, and a "new" one--Paralyzed Vocal Cords. Here is the so-called mystery: Yes, radiation causes all kinds of problems to vocal-cords, throat parts, etc., yet my vocal cords were not paralyzed until the second Covid infection. I never knew Covid caused this condition, but guess what? It DOES cause paralysis of Vocal Cords. Who knew? This Wednesday, I am due for a tracheotomy due to difficulty breathing. Apparently, My vocal cords are frozen bilaterally, which means there is just a small opening for air to get in. The doctor can perform a "Cordotomy," which is basically chopping off a section of the vocal cords/cord, to make a larger opening. The voice will be negatively affected, and it may not work well enough to account for anything, whereas I would still need a trach to breathe well. If the condition is caused by the Covid virus, there is a chance the condition may correct itself in time. This is the situation! I just wish there was a method the doctors could use to know for sure exactly what caused the paralysis. Thank-you, for listening. I hope all the Long-Haulers, become Long-Term Over-Takers.
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1 ReactionMy husband came down with Covid in December of 2019 when he was teaching some students from out of the country. I came down with it in February 2020.
My sense of taste has not fully returned. Sense of smell not normal either yet. I suffer from late in the day spells of heavy fatigue.
All I can tell you about is self care and what my very wise doctor told me. Not enough time has passed to know yet what the long term effects will be but making a point of resting when you are feeling tired is very important. He told me that pushing yourself too hard can result in some symptoms appearing again.
Mine were extreme fatigue, low grade fever and congestion deep in my lungs. I am 73 and recovered at home.
I do believe in natural remedies to enhance ones health and that’s why my doctor is an osteopathic doctor. I feel that so little is known about Covid-19 still that a good book on self healing might be a good thing to look into. I have several.
I have had great luck with vitamin D3. 5,000 mg a day. I was tested and my levels were extremely low. It is said that D3 offers some protection from a bad case of Covid.
Maybe this can help.
Since this thread sounds like it is taking a turn towards arguments I am exiting this website.
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1 ReactionHi @jeanniesroom I see you’re new to Mayo Connect and would also like to extend our welcome to you, as did @amandajro, on behalf of all the members in our community based forum.
I’m so sorry you’re still experiencing symptoms of having Covid-19. It’s such an insidious virus! Thank you for sharing your experiences with our fellow long-haul members. Your doctor is right, it’s such a new disease that it will take years to compile complete and factual data for long-term health issues related to Covid.
As you can see Covid is a very visceral subject and emotions run high. I’m sorry if you’re feeling this thread is turning towards arguments. We strive hard in Connect to keep this a safe environment to have conversations which follow community guidelines. Disagreements are fine, but mutual respect is a must.
I’m saddened that you are exiting this website. I hope you meant just this thread and will continue on with our wonderful community of members helping each other through our shared experiences. It’s a safe place to get and offer encouragement, to find answers and most importantly to allow people struggling to find hope.
We value your input and hope that you will continue with updates on your working to overcome C-Diff. Good luck with this next round of Vancomycin.
Wishing you all the best, Lori.
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2 ReactionsI sincerely hope you did not construe my comments as negative. They are not meant to be negative. Laura Hillenbrand (famous author) has suffered with ME/CFS for decades, as have many, many others. We have many of the exact same symptoms as COVID long-haulers, so I am pointing out that this is nothing new, it's just that for a long time no one really believed that this illness was real. Of course, it is very real. I'm just hoping the rest of us who have been suffering with the after-effects of a virus can be included in the long-hauler groups and research efforts, and not just COVID patients. We deserve it.
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1 ReactionHigher that usual doses of both niacin and vitamn C are used to treat certain conditions, including Covid, but there are not yet conclusive studies of effectiveness for treating post-Covid long haul symptoms. Studies are on-going, and it may be worth a try for you...with the following considerations.
Anyone considering a protocol of ultra-high doses of Vitamins B3 (niacin) and C (ascorbic acid), please remember that while generally beneficial, there may be risks based on you personal health profile and underlying conditions. It is highly suggested that you consult with your care provider before trying it.
In the case of niacin, doses above the recommended daily allowance (RDA) should only be taken with your PCP's knowledge and consent if: you have diabetes, liver or kidney disease, low blood pressure or low thyroid, or are pregnant or nursing.
High doses of both ascorbic acid and niacin can also cause digestive issues, stomach pain and diarrhea. If this happens to you, stop or lower the dosage. If symptoms continue consult your PCP.
Ascorbic acid and niacin are both water soluble compounds, which means they must be taken with adequate water to help flush them from your system, and you are likely just excreting the excess in your urine. More moderate doses may be equally effective.
Sue
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