Long Covid clinics

[BG2015]

I had Covid at the beginning of April. It was very mild and I had very few symptoms. I'm asthmatic, usually well controlled.

I also have recently successfully completed treatment for breast cancer.

Since then my asthma has been terrible. I can't walk far without gasping for breath, carrying washing up and down stairs is a struggle. I have a constant cough which doesn't ever clear my lungs. I had a 5 day course of steroid tablets in May which gave me short term relief for about 2 weeks. I've seen my asthma nurse twice who has changed my steroid inhaler but I can't say it's made any difference.

I've now been referred to a long Covid clinic and have a chest X-ray booked for next week. I've discovered the appointment is a telephone appointment and I'm a bit stumped at that. How can they assess me over the phone?

Anyone have experience of what will happen?

I’ve just had mine. It was long and I was exhausted at the end of it!

I was asked a lot of questions about my symptoms and which were bothering me the most. Then was given advice relating to each symptom. I’m getting a letter and advice sheets sent to me for each symptom.

Advice sheets? Is that it?

Did you find it helpful? What are your main symptoms and how long have you been suffering?

Sorry, loads of questions

Maybe once they've seen your x-ray results and had an initial chat on the phone, the clinic may ask you to come in if they feel it would help you. I'm still under the long covid clinic. I had an online 6 week course that was very helpful, I'm seeing physio and a psychologist, all linked to the long covid clinic. Maybe you could ask if your clinic offers anything like this? Good luck

Think of it like a triage appointment, they find out about all your symptoms and which ones are causing you the most problems and then refer on to the appropriate services respiratory, neurology, rheumatology, physio etc..

I have found it helpful, I got face to face physical rehab, advice and help with prescribing medication for my symptoms and also my return to work. So has my DH who was referred on to several specialities for complications he had.

Ds got referred to the long covid clinic, it was actually at the same place as the ME/CFS clinic & the advice was the same, pacing.

You’re lucky you’ve been offered anything.
my dd has had cfs for three years now, following a serious illness. Pacing is all they’ve offered.
Good luck

I don't know as got told they don't refer until 6 months after infection! My GP pointed me at the Covid recovery website and said to follow the bits of advice on that that were relevant.

Forgot to say - I had pre-clinic questionnaire, blood tests and chest x-ray. Nothing was mentioned about those so I assume normal.

The most helpful thing I guess was to have validation and confirmation that I do have LC which I needed for work. They’ve told me no exercise at all, other than 20 mins max walking a day and no weight bearing exercise which I’m not sure about as prior to Covid I was a marathon runner, and if all my tests are ok then where’s the harm? That felt like standardised advice rather than individualised.

I had Covid in Feb. Went back to work as soon as I was negative, still felt unwell then collapsed a couple of weeks later. Have been off work since. Main symptoms are crushing fatigue, unable to concentrate and word find, tinnitus, dizziness and headaches.

My only symptoms are breathlessness and coughing.

I'm tired but that's not covid related, more like chemo/cancer/ongoing medication.

I've been weight bearing at the gym for nearly 2 months, that doesn't make me breathless, just walking and carrying things too particularly up stairs e.g basket of washing etc

I've been trying pursed breathing today and I haven't coughed as much as usual. I'm also pacing myself too - don't have much choice really!

@BabbleBee They’ve told me no exercise at all, other than 20 mins max walking a day and no weight bearing exercise which I’m not sure about as prior to Covid I was a marathon runner, and if all my tests are ok then where’s the harm? That felt like standardised advice rather than individualised.

Have you read about PEM - post exertional malaise? If you’re waking up feeling really tired on the morning after you exercise then you are experiencing PEM, which is a really bad sign and means exercise is actually making you worse and depleting your overall available energy. There’s no test for PEM so all your test results can look completely normal. That’s why the clinics recommend that you don’t exercise until your energy system has recovered.

You will never get better while you’re still going round this loop. It’s really hard to switch your mindset from exercise being good for you to exercise being harmful, but you absolutely need to do it.

There are loads of people with long covid who were previously marathon runners and have fallen into exactly this trap.

Interesting, I was told no strenuous exercise until I could manage a brisk half hour walk but the GP encouraged gentle walking. I can do this for hours but do find I tend to pay for it the next day.