Having been unwell almost all of last year, I've just been diagnosed with long covid. I've had lots of different symptoms but the worse one is that I am so, so tired all the time, yet I can't sleep. I've never had problems sleeping - my problem has always been that I sleep for too long!! I started taking MenoSerene in early December. I had to stop taking it because it messed with my sleep. I not only could not get to sleep but could not stay asleep either. Stopping it, has made no difference. I still can't sleep. I had a telephone consult with my GP last Monday. I was very surprised when she confirmed that I did indeed have Covid last February. I thought as there was no test available at that time and the anti body test came too late for me, I would never know for sure. But after a long conversation with her, she confirmed it. It explains all of my many symptoms which I was never quite convinced could all be down to my thyroid - too many new problems. This means that I went straight from Shingles to Covid and then moved on to long covid!! It was probably a mixed blessing as I still had anti biotics and anti inflammatories in my system and I was still taking pain killers for shingles pain, when I got covid.
I've now been referred to my local long covid clinic. Is there any way of helping with my symptoms? I've had nine months of pretty much sitting doing nothing - too tired to do anything but the essential cleaning and cooking. I've been doing a few short walks ( no more than 15 minutes ) a few times a week. But I collapse in a chair as soon as I get home and stay there until I have to get up to cook dinner. Now I'm trying to do a little more but nothing helps with my sleeping.
I also have vision problems. My new glasses had to be sent back to be remade as my focusing had changed. I've got to take the remade pair back as everything is blurry and I get a bad head ache after wearing them for an hour.
Has anyone any advice for dealing with long covid? Has anyone attended one of these clinics? What should I expect? I have read that it may be a case of monitoring rather than treating.
It's been rather a shock as I never expected to get a confirmed diagnoses as I never had a positive test. I did lose my sense of taste for twenty four hours so always wondered about covid and long covid.
There was an additional reason for the diagnoses. My husband and I were both ill particularly during the first week of our Orlando holiday. I lost my taste on our second day. Our symptoms were different - I was very short of breath whilst he had a persistant cough. He's never smoked and never had a cough so it was odd. We were both really tired for the whole two weeks. He was then over it although he has had some odd moments mentally which he never had before and he is sleeping more. I was really tired for five or six weeks - going to bed every afternoon and sleeping for a few hours - something I never do. We were very surprised on our return to find that my two youngest sons and a girlfriend were all ill during our first week away. This is very significant - Covid is the only virus where people are ill at the same time. Every other virus people are ill one after the other. It's all due to the different infection patterns.
With Covid the period between infection and symptoms varies from almost immediate to up to fourteen days, resulting in everyone being ill at the same time. All other virus this time is constant usually a couple of weeks meaning everyone is ill one after the other. For this reason my doctor said I must have had covid and not any other virus.
What I could never understand was why my husband was ill ten or eleven days ahead of me when Covid is so infectious. Now we know - he just had symptoms earlier than me. I also could not understand why after getting over the virus I was really well for ten weeks and then became really unwell again. Long covid does this!!
Any help, advice or suggestions would be greatly appreciated.
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dizzy864
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Some people who have Long Covid have done well by following the self-care that people with ME/CFS do, particularly in terms of exercise.
I suspect that the NHS and the medical profession will do its utmost to dismiss and ignore physical symptoms of Long Covid and will push everyone to mental health services for CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy). If it doesn't work then they will blame sufferers for their own suffering. In my opinion, the NHS has an ever-lengthening list of chronic health conditions it will only treat as a mental health condition, and Long Covid will be one of them.
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Two things I've read about Covid are that people with low vitamin D and low zinc are more likely to get the condition and to have severe symptoms when they do. Perhaps you could check as many of your nutrients as you can afford or your doctor will check for you and post the results on here asking for feedback, check that your thyroid hormone dose is right for you (Covid could have changed anything), and try to keep the exercise levels down until you are well enough to do it.
Hi, I hope you are wrong. Time will tell I suppose. I've been supplementing with vit D for many years. It is slowly rising. I've been supplimenting with zink for two or three years but never had it tested. I also suppliment with B complex, C, Iron and magnesium. My B12 is always near the top - probably because I've been supplimenting for 25 years since I had a problem. Iron, I find particularly difficult to raise. Too much of it really upsets my tummy so I take 20 mg a day - as much as I can tollerate! Being vegetarian there's nothing else I can do.
I think the problem you have is that nobody is sure yet what causes Long Covid. So apart from very generic suggestions that aren't terribly helpful there isn't much that anyone can offer.
As for treating low iron there are lots of choices.
If you want to try raising iron with food this site is useful :
The iron content of a particular supplement appears to be the main determinant of whether people can tolerate it or not.
For someone who can't take high dose iron supplements, one suggestion might be ferrous gluconate 300mg. Each tablet contains 35mg of pure iron, and the maximum daily dose is 4 - 6 tablets per day in divided doses. But you can take as many as you can tolerate up to that maximum.
I've never taken ferrous gluconate myself, I can tolerate the higher dose ferrous fumarate 210mg, so I've no idea what the gluconate is like. But it's cheap, so it might be worth a trial. You would need to buy it from a pharmacy in the UK. You don't need a prescription but you do need the pharmacist's permission.
Always remember that regular testing is essential when taking iron, for the reasons given in this thread :
Thanks for your reply. As I'm vegetarian I don't eat red meat and haven't done so for over forty five years. This does make boosting iron levels with food very difficult. I do eat as much iron rich vege food as I can.
I tried all of the different iron suppliments and all of them really upset my stomach. For the past three years or so I've been taking iron bisglycinate which definitely works better for me. I started off with one tablet a week and can now tollerate one tablet ( 20mg ) a day. When my present bottle runs out I'll buy a 25mg tablet and hopefully I'll still be able to tollerate that.
The main problem that I have is that I don't absorb any vitamins and minerals very well. Although all my levels are improving it is a really gradual process for me.
I forgot to say, I had already found the NHS site. It's very basic stuff and nothing that I hadn't already worked out for myself. I just wondered if any one had some more personal advice.
Is there anything on the internet about ‘post-viral’ problems as I’ve read that there is such a thing as ‘long flu’ or any other viral infection? Good luck.
I know that some viruses can linger for a long time. A few years ago, I looked after my friend's 13 year old daughter as her mother worked. She had glandular fever and it left her too tired to go to school for over two months after she'd recovered from the actual disease.
I've never had flu and was lucky enough to have an exceptionally mild dose of glandular fever when I had it as a child. It was so mild in fact that I had no symptoms - a blood test confirmed I had it when my brother had been quite ill with it!!
I've never heard the expression 'long flu' and my friend's daughter was told she was struggling with the after affects of glandular fever. 'Long glandular fever' was never mentioned although in today's terms it probably would have been.
Not having had Covid-19, I'm not well placed to judge this program. However, I am posting in the hope that someone gets something from it.
Long Covid, Vaccine queries
Inside Health
Most people recover rapidly after catching coronavirus. But I chat to three people who were infected almost a year ago and are still feeling the impact, both on their bodies and their minds.
Doctors are having to rapidly grapple with how to treat patients with long Covid. We speak to one of them, Dr Manoj Sivan, the Research Lead for the Long Covid Service in Leeds, who warns that long Covid could be a “second pandemic”.
We also have GP Dr Navjoyt Ladher answering your questions on the Covid vaccines.
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