Long Covid. A support thread for those who take a while to recover from Covid-19

zand

Master
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10,784
Type of diabetes
Type 2
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I have been mulling over whether to start this thread for weeks. Much is said here about the risks of dying of Covid being quite low, but not a lot has been said about life after Covid. After receiving lovely support from a poster on another thread yesterday I decided to go ahead and take the plunge and start a thread for those of us who haven't recovered quickly from the illness.

I had Covid-19 back in March and am still struggling. After the 35 days of coughing passed, I declared I was getting over it. How wrong was I?! I still have fatigue, breathlessness, tired limbs, muscle pains, joint pains and my brain just doesn't work as well as it used to. As for BGs, they aren't great either, but I admit I haven't had the energy to test regularly or do anything about them. I was a well controlled T2 before having the virus. I suspect that post Covid my T2 is always going to be a lot harder to control.

Anyhow, enough about me, over to you. How are you? And how are you coping? Let's share our experiences here and maybe we can help one another. :)

Edit: I have put this thread in the T2 section as I am T2 myself, but please feel free to use this thread if you have another type of diabetes alongside Long Covid, I never meant it to be exclusively for T2s. We're in this together. :)
 
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TrevorJ

Member
Messages
16
Type of diabetes
Type 2
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Tablets (oral)
Hope you feel better soon! I'm recovering from Covid as well. I will admit that it wasn't too bad for me, but my blood sugar is still out of control! I'm assuming its all the stress our bodies have been put under. We will get through this together!
 

zand

Master
Messages
10,784
Type of diabetes
Type 2
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Diet only
Hope you feel better soon! I'm recovering from Covid as well. I will admit that it wasn't too bad for me, but my blood sugar is still out of control! I'm assuming its all the stress our bodies have been put under. We will get through this together!
When did you have Covid? Yes, it was a huge stress for our bodies. I really must try to get to grips with my BGs, but am being an ostrich about it for now.
 

zand

Master
Messages
10,784
Type of diabetes
Type 2
Treatment type
Diet only
Still recovering here. I don't know if I will ever get back to normal.
That's how I feel too. Do you find you have better days and then relapse again? I assumed that once I was up and about I would see a daily improvement but it hasn't been like that at all. Some days aren't too bad, but then others are so bad that I can't really do much at all. I think I am getting there and then come a cropper yet again.
 
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Johnroy

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333
Type of diabetes
Type 2
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Tablets (oral)
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Not many
I to was diagnosed by doctor back in April also with pneumonia though not given a test. Blood glucose still not great. It does seem as been said, some days better then the bottom falls out. The good thing is fitness is coming back if slow. We will get there.
 
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Debandez

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Messages
4,019
Type of diabetes
Type 2 (in remission!)
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Diet only
Hi Zand and thanks for starting this thread.

Long covid has been recognised and sufferers to get help:

https://www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help/

My covid symptoms started way back in November. 26th to be exact. I've discussed with my practice manager at my surgery when on a PPG zoom. She confirmed it's been around longer than they say, in fact told me that a whole factory had to close in December in my home town due to illness sweeping through. So many people very ill before Christmas.

My symptoms kept coming in waves from 26th November through December, kept thinking I was getting better then BOOM floored again:

Fever/hot/cold/chills
Jelly legs
Couldn't breath all the way in
Persistent cough that started day 1 and lasted months. Wheezy as! and phlegmy (sorry if too much info) I have never smoked.
Headache
Nausea
Lack of appetite
Tired
Blood sugars all over the place (I use a CGM, I'm well controlled but my readings were very high and I wasn't eating much at all, no appetite. I eat low carb when I do eat and seldom see high numbers.

The persistent symptom is my wheezy chest, and I don't seem to have quite the same energy level. Not every morning but a significant amount. I was going to ask my Dr for a chest xray to see if there is scarring on lungs. I may do when things settle.

Of course back then we were unaware of covid19. When I went to the Dr with my shortness of breath, cough and wheeziness on 9th December he gave me antibiotics for a 'bacterial chest infection'.

As soon as I could have antibody test in May I had one and it came back positive (Abbot). I hadn't been poorly since the covid symptoms.

I decided to pay for another this week as it happens (£39.99 from Testing for all not for profit so cheaper than standard tests). It came back positive (they use Roche, highly accurate). I had a cold over the past few days compliments of my 9 month old grandson it seems, but apart from that no illness in between. Although I understand you can get it asymptomatically. I presume antibodies can last for some time. I will have another in a few months time.

Just thought I would share here for info.

Sorry for the long post!

Screenshot from 8th December, normally in the green band. Just shows you how illness effects blood sugars.
 

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Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
That's how I feel too. Do you find you have better days and then relapse again? I assumed that once I was up and about I would see a daily improvement but it hasn't been like that at all. Some days aren't too bad, but then others are so bad that I can't really do much at all. I think I am getting there and then come a cropper yet again.

There are so many sufferers out there and lots of threads and posts on Twitter under hashing #longcovid for info
 
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Winnie-the-Pooh

Well-Known Member
Messages
244
Hi Zand and thanks for starting this thread.

Long covid has been recognised and sufferers to get help:

https://www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help/

My covid symptoms started way back in November. 26th to be exact. I've discussed with my practice manager at my surgery when on a PPG zoom. She confirmed it's been around longer than they say, in fact told me that a whole factory had to close in December in my home town due to illness sweeping through. So many people very ill before Christmas.

My symptoms kept coming in waves from 26th November through December, kept thinking I was getting better then BOOM floored again:

Fever/hot/cold/chills
Jelly legs
Couldn't breath all the way in
Persistent cough that started day 1 and lasted months. Wheezy as! and phlegmy (sorry if too much info) I have never smoked.
Headache
Nausea
Lack of appetite
Tired
Blood sugars all over the place (I use a CGM, I'm well controlled but my readings were very high and I wasn't eating much at all, no appetite. I eat low carb when I do eat and seldom see high numbers.

The persistent symptom is my wheezy chest, and I don't seem to have quite the same energy level. Not every morning but a significant amount. I was going to ask my Dr for a chest xray to see if there is scarring on lungs. I may do when things settle.

Of course back then we were unaware of covid19. When I went to the Dr with my shortness of breath, cough and wheeziness on 9th December he gave me antibiotics for a 'bacterial chest infection'.

As soon as I could have antibody test in May I had one and it came back positive (Abbot). I hadn't been poorly since the covid symptoms.

I decided to pay for another this week as it happens (£39.99 from Testing for all not for profit so cheaper than standard tests). It came back positive (they use Roche, highly accurate). I had a cold over the past few days compliments of my 9 month old grandson it seems, but apart from that no illness in between. Although I understand you can get it asymptomatically. I presume antibodies can last for some time. I will have another in a few months time.

Just thought I would share here for info.

Sorry for the long post!

Screenshot from 8th December, normally in the green band. Just shows you how illness effects blood sugars.

Hi, can I ask what was the max bg after food before u got COVID and now . For me my base has not changed but after I eat , I had a spike much higher than before . I also have a GCM ( dexcom ).
 

Debandez

Well-Known Member
Messages
4,019
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
Hi, can I ask what was the max bg after food before u got COVID and now . For me my base has not changed but after I eat , I had a spike much higher than before . I also have a GCM ( dexcom ).
I'm not sure what my max was as I don't have that info now sorry but I do know that for a few days when I couldn't eat or think of food my bs was high (like the previous post). It settled again thankfully and has been normal since.
 
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Martinabray

Member
Messages
12
Type of diabetes
Type 2
Treatment type
Other
After being extremely unwell before Christmas .....I have battled with exhaustion .A Transatlantic cruise the beginning of January saw me in bed every afternoon ...and bed before 10pm . This is totally out of character ( I have other Transatlantic cruises to compare with). Since then I have been tired all the time , tickle cough ,catarrh etc etc ...but more importantly my BS is out of control ...up & down . I haven't had an antibody test , but have been told by a clinician I must have had Coronavirus early on .
 

Annb

Expert
Messages
7,202
Type of diabetes
Type 2
Treatment type
Insulin
My 53 year old son and I had "a virus" in early March 2020. But "there is no coronavirus on the Island, so it must be something else." I'm sure it wasn't something else. NHS 24 response was to take some paracetemol and have plenty of drinks. Nothing about self isolating. However, we did isolate ourselves. I am T2 and my son had to be shielded due to other health issues.

My son was pretty poorly for a couple of weeks but does seem, most of the time to have got over it, although we both had what seemed to me to be a relapse a couple of days ago. It started when we both had a bad cough for about a week. I have had trouble with sore lungs ever since March. Catarrh, nausea, dry throat and skin, muscle pains and joint pains have continued to this day. Both of us are very tired all the time and sleep a lot of the day as well as the night. My BG has been pretty high throughout (oddly, it has dropped the last couple of days) and other health issues seem to have been exacerbated. But we have never been tested either for the virus or for antibodies.

Did we have covid 19? Maybe, who knows? Diabetes nurse reckons yes, GP won't express an opinion. How could we have had it? There was "none on the Island", despite 2 people being hospitalised later in March, so they must have got it from somewhere. I think it came to us from the local primary school which my granddaughter attends. She was feverish and nauseous one evening and about 3 days later, we were sick.
 

TangoDoc

Newbie
Messages
4
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
Being diabetic, vinegar, dental hygeinists, Brexit
I too developed Covid in mid March and managed to avoid hospitalisation by doubling my insulin levels and helped by wearing a Freestyle Libre continuous glucose monitor. I lost a stone of weight and have stayed down at that weight. I find I am more easily tired by exertion and am short of breath on fast walking and hills, particularly if I am pushing a wheelbarrow or carrying heavy shopping. Thank goodness I no longer carry that extra 14 pounds of weight, though I was not obese to begin with.
Because I am a retired GP, I never felt the need to contact my GP at the time, assuming that their response could be hospital admission which I knew I did not need. I am now Covid antibody positive, though the latest test seems to sugges levels of IGG are falling and IGM is gone. I'm part of a trial, you see.
It so happens that I have for some years been taking Testosterone replacement therapy, as a gel, and that might, according to my Professor of Medicine friend have stood me in good stead. It may explain why most deaths from Covid have been in ageing diabetic males. I gather that Vitamin D deficiency was also noted in those admitted with Covid and as winter approaches, maybe we all need a daily dose of that too. Safe and cheap.
It occurs to me therefore that if those suffering Long Covid are males over middle age, it could be a wise move to have their early morning blood testosterone levels checked out. Apparently, many of us are deficient, leading to all sorts of vascular problems if not managed. That would be particularly so if the sufferer also experiences lack of early morning erections, erectile disorders in general, leg cramps and lower urinary tract symptoms, like peeing at night, poor stream, frequency, needing to go urgently, any burning on peeing.It is all too easy to write these sorts of symptoms off as just being inevitable consequences of increasing age and diabetes, but, as in my case, once the low testosterone level has been found, they can be reversed. This is particularly true if administered with a daily dose of tadalafil, according to Prof Hackett.
As for me, I do believe that, after 7 months, I am making some progress, feeling stronger and able to walk more freely and for longer. I shall continue to push myself along the lines of "use it or lose it", but then, I am 75.

I have been mulling over whether to start this thread for weeks. Much is said here about the risks of dying of Covid being quite low, but not a lot has been said about life after Covid. After receiving lovely support from a poster on another thread yesterday I decided to go ahead and take the plunge and start a thread for those of us who haven't recovered quickly from the illness.

I had Covid-19 back in March and am still struggling. After the 35 days of coughing passed, I declared I was getting over it. How wrong was I?! I still have fatigue, breathlessness, tired limbs, muscle pains, joint pains and my brain just doesn't work as well as it used to. As for BGs, they aren't great either, but I admit I haven't had the energy to test regularly or do anything about them. I was a well controlled T2 before having the virus. I suspect that post Covid my T2 is always going to be a lot harder to control.

Anyhow, enough about me, over to you. How are you? And how are you coping? Let's share our experiences here and maybe we can help one another. :)

Edit: I have put this thread in the T2 section as I am T2 myself, but please feel free to use this thread if you have another type of diabetes alongside Long Covid, I never meant it to be exclusively for T2s. We're in this together. :)
 
Messages
1
I came down with Flu like symptoms on the 3rd of January my wife and daughter non diabetics came down with it at the same time. We were bedridden for around a week hard to fully breathe,coughing for months, really weak limbs, itchy eyes and a runny noses on and off especially when I put on a e acfmask. Like others have said it would ebb and flow I am into my tenth month feeling weak, I just rest when I can. As I type my arms still feel heavy and like people have said too weak to test my bloods for months. There are no covid tests beside swab tests near here, so i have not been tested but I know from the symptoms and way I felt, we have had what they call Covid. 10 months of illness but I think I am slowly getting over it. My front and back lawns are 3 ft high. I will attack them once I get some energy. Take care everyone and try to rest/sleep when possible.
 
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Kyambala

Well-Known Member
Messages
382
Type of diabetes
Type 2
Treatment type
Insulin
I too developed Covid in mid March and managed to avoid hospitalisation by doubling my insulin levels and helped by wearing a Freestyle Libre continuous glucose monitor. I lost a stone of weight and have stayed down at that weight. I find I am more easily tired by exertion and am short of breath on fast walking and hills, particularly if I am pushing a wheelbarrow or carrying heavy shopping. Thank goodness I no longer carry that extra 14 pounds of weight, though I was not obese to begin with.
Because I am a retired GP, I never felt the need to contact my GP at the time, assuming that their response could be hospital admission which I knew I did not need. I am now Covid antibody positive, though the latest test seems to sugges levels of IGG are falling and IGM is gone. I'm part of a trial, you see.
It so happens that I have for some years been taking Testosterone replacement therapy, as a gel, and that might, according to my Professor of Medicine friend have stood me in good stead. It may explain why most deaths from Covid have been in ageing diabetic males. I gather that Vitamin D deficiency was also noted in those admitted with Covid and as winter approaches, maybe we all need a daily dose of that too. Safe and cheap.
It occurs to me therefore that if those suffering Long Covid are males over middle age, it could be a wise move to have their early morning blood testosterone levels checked out. Apparently, many of us are deficient, leading to all sorts of vascular problems if not managed. That would be particularly so if the sufferer also experiences lack of early morning erections, erectile disorders in general, leg cramps and lower urinary tract symptoms, like peeing at night, poor stream, frequency, needing to go urgently, any burning on peeing.It is all too easy to write these sorts of symptoms off as just being inevitable consequences of increasing age and diabetes, but, as in my case, once the low testosterone level has been found, they can be reversed. This is particularly true if administered with a daily dose of tadalafil, according to Prof Hackett.
As for me, I do believe that, after 7 months, I am making some progress, feeling stronger and able to walk more freely and for longer. I shall continue to push myself along the lines of "use it or lose it", but then, I am 75.

Good afternoon Tangodoc,

Thank you for your Post - I am so glad that a retired GP is on this site.

Two years ago I was diagnosed with Prostate Cancer: 22.3 4+4. In April 2019 I started 37 doses of Radiotherapy and refused the "Hormone Injections". Changed my diet from LCHF to Chicken or Turkey or oily Fish with salad and Green tea with Lemon. My PSA in December was 2.6 For months after the Radiotherapy I felt exhausted.

In January this year I had a nasty dose of the Flu for 2weeks even though I had Flu Injections last September. After I recovered my wife also had Flu for two weeks. In February I had "food poisoning" after eating in a Restaurant.

On 9th March I was very ill with what I think was Covid 19 - very bad chest pain, heavy cough, so weak that I could not dress or undress myself and lived on Cornflakes and "Sport" drinks. My wife is a retire Nurse and we isolated ourselves for two weeks - on day twelve I started to feel a little better and could eat a light salad with Chicken. On day 14 I managed to walk outside with the aid of two walking sticks. A week later I was down to just using one stick. Three weeks later I did not need a stick at all. I did not contact any Medical Authorities as I did not want to go into Hospital.

I have been Type 2 now for about 25 years and been on Insulin Humulin M3 plus two Metformin SR for about eight years. I was using 60 units AM and 40 units PM until I started the LCHF diet and this decreased my needs to 40 units AM and 24 units PM. With my new diet my needs have again reduced to 30 units AM and 24 units PM. My fasting BG is usually between 4.3 and 5.9 but when I have a cold it can shoot up to 8.

I have been on Sildenafil 100mg now for about 5 years for ED but the tablets have changed from "blue" to "white" and no longer seem to be as effective (or is it my imagination). Should I ask for 150mg tablets? Should I ask for a Testosterone examination? I am almost 79 years of age and could this be the onset of Impotence?

The desire is there but the ability to perform seems to have disappeared.

What do you advise?
 

Jaylee

Oracle
Retired Moderator
Messages
18,213
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Kyambala ,

I'm sorry to read of your difficulties.

You really should contact your own GP regarding your personal issue.
DCUK has ethos rules in place, no one can diagnose on this forum.
We can only guide & support regarding our own experience on relevant matters & wish you well with your HCPs.

A11. Important: Members are generally not Health Care Professionals, and those who are participate on the Forum as Members, not Health Care Professionals. Members are unable to diagnose any condition, or instruct in the alteration of medication, irrespective of personal or professional standing or experience.

https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/
 

Alexandra100

Well-Known Member
Messages
3,738
Type of diabetes
Prediabetes
Treatment type
Tablets (oral)
How are you? And how are you coping? Let's share our experiences here and maybe we can help one another.
Hello Zand, congratulations on starting this important thread, which has obviously already helped a lot of fellow-sufferers. It's good that Long Covid is now being recognised. It must have been terrible for early sufferers who kept being told it was all in their minds!
 
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Kyambala

Well-Known Member
Messages
382
Type of diabetes
Type 2
Treatment type
Insulin
Hi @Kyambala ,

I'm sorry to read of your difficulties.

You really should contact your own GP regarding your personal issue.
DCUK has ethos rules in place, no one can diagnose on this forum.
We can only guide & support regarding our own experience on relevant matters & wish you well with your HCPs.

A11. Important: Members are generally not Health Care Professionals, and those who are participate on the Forum as Members, not Health Care Professionals. Members are unable to diagnose any condition, or instruct in the alteration of medication, irrespective of personal or professional standing or experience.

https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/

Thanks Jaylee,

Perhaps somebody else might be in the same boat - or experienced these problems in the past.

I wait with anticipation.
 

Annb

Expert
Messages
7,202
Type of diabetes
Type 2
Treatment type
Insulin
Having some difficulty today with breathing. I can breath, but having to concentrate on standing up straight and giving my lungs some space. Even so, I don't feel that I'm getting enough oxygen. Oxygen sats between 89% and 92%. I felt like this briefly about a week ago; then sats were down to lower 80s and I was clammy and nauseous. It didn't last long. I think this is another manifestation of long covid and it is eased a bit by taking paracetemol. I was considering phoning the GP but since the drug improves it, I'll probably leave it and see how we go. Feeling quite grotty today as well, with other non-covid issues. Might be connected.
 

Kyambala

Well-Known Member
Messages
382
Type of diabetes
Type 2
Treatment type
Insulin
Having some difficulty today with breathing. I can breath, but having to concentrate on standing up straight and giving my lungs some space. Even so, I don't feel that I'm getting enough oxygen. Oxygen sats between 89% and 92%. I felt like this briefly about a week ago; then sats were down to lower 80s and I was clammy and nauseous. It didn't last long. I think this is another manifestation of long covid and it is eased a bit by taking paracetemol. I was considering phoning the GP but since the drug improves it, I'll probably leave it and see how we go. Feeling quite grotty today as well, with other non-covid issues. Might be connected.

Good evening Annb,

After reading your post I realise that I probably got off light with my dose of Covid - although I did not think so at the time.

I really do thank you for your post - and I also hope that you will be feeling much better very soon. My wife and I will also remember you in our prayers tonight.

God bless.