Off you pop! Long Covid sufferer

[Pegsonstrings]

I am sick of it, I am fed up with being told to just live with it.

Had relatively mild Covid mid March 2020. Six months later had a massive relapse that is ongoing and has seriously disabled me.

I have various unexplained neurological problems, fatigue and after having been taken by ambulance due to heart and lung issues been told that I have leftovers or fibroids on my lungs. Heart is fine. But I don’t want my second AstraZeneca jab which I am meant to have in a weeks time.

I use to run half a marathon just because. I was incredibly sporty and active. Now I am riddled with pain and some days hardly able to walk as my legs give way without warning.

Have called the GP numerous of times when I lost my speech and would not find my words, had difficulty with thinking or processing simple things and got really forgetful. Have had an appointment with a neurologist. Two MRIs as MS and other stuff was being ruled out, to be told it’s long Covid and nothing anyone can do, so off you pop.

I am isolated due to it, and my quality of life impacted majorly. I am in constant pain.

But I am sick of not being heard when I raise this with my GP and I just get left to it.

I have been working from home since I got ill last year.
Anyone in the Same boat?

Unfortunately it sounds like support might vary between areas We have a young employee with long covid and has been referred for support and tests .

He has suffered physically and emotionally as his mother and father were all ill at the same time .

His return to work has been phased .

www.england.nhs.uk/2020/12/long-covid-patients-to-get-help-at-more-than-60-clinics/

You should insist on being referred op . Not only for yourself but to help research .

I agree with other posters about diagnosis of autoimmune diseases . I went through the same . I had to get private tests in the end . One I proved what I had treatment was available but it took 5 years .

At least clinics are being invested in for long covid .

Pegsonstrings...im so sorry your dealing with this. I want to let you know your not alone, I had covid back in October 2020 which was pretty mild at the time, few scary chest pains but generally mild. However since then I have had multiple relapses, the horrible,scary chest pain that feels a dagger in the heart, tight chested, sense of smell totally off and now...8months on my breathlessness is crazy!! I can barely lift my kids some days without it taking my breathe away and exhausting me. I too have called GP around 10times in this time frame with little solution. Just last weekend I went to a&e with horrible chest pain, ecg blood etc all clear however I worry something could be on my lungs and they haven't checked. Still to recieve my 1st vaccine this month.Wish there was a miracle cure i could send ur way ,just wanted u to know your not alone as I know it can feel really lonely at times. Sending u a huge hug xx

There is a Long Covid support group here on MN. You may find it useful. I think it has been running since March last year.
There are many of us on there who have or had Long Covid. What is slightly striking, is that we all have different ways we have been affected, and definitely different current outcomes. Myself, I seem to have come out the other side thankfully.
I will actually direct message you[not sure the name of that on here] if that is ok. Probably what helped me, wont necessarily help you though.

I do think though, that the medical profession do seem to be at a loss what to do. It was the same last year, when I went to see them last summer.
I realised I needed to find out what worked best for myself. I was already aware by then, that people were reacting to covid in different somewhat unique ways.

If I were in your postion, I would join every support group there is.

@ZombeaArthur

I suffer similarly with the chronically ice cold hands and feet. Well it actually extends up my lower forearms and lower calves as well. Although mine is Raynaud's disease, not covid related.

Purely because I have been aware of possible treatments available for it, I wonder if your Dr may be able to prescribe you vasodilators to help improve circulation. Also try some special Raynaud's gloves, they keep the heat in better than average gloves and some types also help improve circulation as well. There are also different gloves that are long and continue up the arm. There are fingerless options to free you for dexterity.

Thanks @BensonStabler. I know I need to have a proper chat with my GP. Thankfully I’m able to see a doctor in person, which is a luxury not everyone is afforded at the minute. Fortunately the warm weather we’re currently experiencing has been a huge help to my hands and arms. This winter was particularly brutal!

To everyone single one commenting, thank you. Your messages are really helpful and I am sorry some of you have really struggled with long Covid and other autoimmune diseases too.

@ClaudiaAndTheCauldron Is your GP doing anything about your high heart rate? I have been at the hospital all day due to mine. I have had blood tests, chest X-ray and ECGs. I'm now being referred to a cardiologist (so they can do a 72 hour heart tape) and to a long Covid clinic as my heart rate was permanently over 115 during each of my ECGs today and all I had been doing was sitting in waiting rooms all day!
I get really bad palpitations and breathlessness from walking up the stairs too (it's crazy!)

[quote HoneyPea]@ClaudiaAndTheCauldron Is your GP doing anything about your high heart rate? I have been at the hospital all day due to mine. I have had blood tests, chest X-ray and ECGs. I'm now being referred to a cardiologist (so they can do a 72 hour heart tape) and to a long Covid clinic as my heart rate was permanently over 115 during each of my ECGs today and all I had been doing was sitting in waiting rooms all day!
I get really bad palpitations and breathlessness from walking up the stairs too (it's crazy!)[/quote]
HoneyPea I am so sorry I didn't see your post. I hope you have had some luck at the hospital.
I have had test and ECGs and I I going to see a cardiologist. My heart rate is still very high sometimes and I can feel it racing. Like you say going up the stairs or even after a shower is awful. I have been going to a long Covid group which is helping.
Let me know how you get on x

another CFS person here-unable to work for over 10 yrs now- the ONLY good thing about Covid is that we may finally get some properly funded research into CFS/ME as there are so many of us living under the radar. Do go onto the CFS/ME resources and look at some of the basic advice like pacing, stress and sleep management etc and discuss onwards referral with your GP .It's likely to be a postcode lottery (as most things are!) ..the CFS service that I am under is taking on COVID patients (it is becoming clearer that there are different"groups" of long COVID sufferers ,some of these fit very much into the CFS model but I would also argue that CFS/ME itself has different "groups" within it) .Also agree with researching further about getting your second jab (perhaps even ask about Pfizer for your second??) as part of my illness seems to be difficulty in "clearing" viruses fully out of my system hence I get prolonged/recurrent symptoms with even a basic cold and I suspect this may be happening with Covid,so could explain why some long Covid sufferers experience remission after their jabs.

My sister and a friend had post viral syndrome from flu long before Covid and both of them had to change careers. Sister was a nurse and friend was a teacher. My sister was lucky to survive it as it kept repeating. She was given an early retirement as was my friend.

So much great advice, BensonStabler and cls123 I very much agree with you both.

It is such a huge shock to have your identity and whole life pulled away from underneath you... and it takes time to grieve that your day to day life is not what you expected right now.

However... it is really important that you find communities who understand to support you, that you look into the importance of rest, pacing, diet etc. etc. and you do everything you can right now to let your body heal as much as it can. This can be a long haul, months or even years.

Most importantly for me was to work on my mind: I couldn't control everything that was happening to me, but I could work on living moment by moment through mindfulness (and the ideas behind as much as the practise) and lowering my anxiety.

Learning to accept where you are now, right now, opening your mind to the possibilities of a very different life (lives even), and above all, learning to bear it is hard but incredibly rewarding. Chronic illness does come bearing some gifts....

@PseudoBadger I appreciate you posted back in May about your DP's experience. If you're still on the site I'd like to find out more as mine has suffered similar with no previous history and we got nowhere with neurology.

Sincere commiserations from a long long term M.E sufferer, misdiagnosed the first thirty years as mentally ill.
I left the Uk when I was finally diagnosed and been here over twenty years and have as little contact as possible with the medical fraternity here. Banging head against brick wall gets more and more painful

I will seek medical help for other things. eg broken wrist. But for this? No.

I am on my pension so it is easier for me as I have no obligations - except t my cats..

Good that reference was made to the M.E Assocaion. They were a tower of strength to me over many years.

Avoiding stress is vital. Accepting how ill you are is vital for healing and self worth.

I live alione in solitude on a small island and am a very private person. No one here knows how ill I am .

Eat carefully; rest all you can. Talk here and to others who understand.

Blessings and peace..

PS. M.E blessed me with Raynauds so severe that they cannot find a pulse in my right foot, and appalling pain. So I am on long term codeine which zaps all pain.

It panicked them into testing for lupus... Negative of course. But that was many years ago now.

Another with ME/Fibro/etc/etc so I truly feel sorry for you and just wanted to say that if you have the energy seek out a GP who has some knowledge in this field, but don't hold your breath while searching as they seem few and far between.

It's almost 20 yrs for me and in the very early stages I found a GP who had ME himself, unfortunately he lived 4.5 hrs away and there was no way I could ever get back for a consultation, but he gave me some good info and suggested I treat myself unless I found someone who actually 'knew' what they were doing.

Generally I've got it under control with OTC medication as long as I stick to my strict regime. Have had two surgeries this year and they have taken their toll in regards to fatigue due to the surgeon and hospital staff not being tolerant and/or understanding. Doesn't matter if someone is in medicine or whatever, they seem to think there is nothing wrong 'because you look OK'.

Yeah sure....

Sorry OP. Not in your exact boat, feel lucky to have escaped with a lot milder symptoms but I still can’t cope with exercise of any kind or any emotional stress all of which are fairly unavoidable with kids. I’ve had blood tests and a sit to stand test from the GP which they still refer back to from months ago as if that was relevant and now blood tests are rationed so nothing at all. It’s shit I am really sorry you’re having a shit time and you’re in a much worse state.

@meadowbleu Badger here...
Poor DP is not good. No more fits (he reacted badly to the trial of epilepsy meds so was taken off and no further occurrences) but terrible brain fog and trembles. Regarding the rest of his symptoms he is worse than ever. He has crippling fatigue, chest pain, cough, breathlessness, swollen ankles, insomnia, depression, no appetite. He has a respiratory appointment tomorrow but no idea if this is a long Covid clinic. There has been no joined up approach for him from the NHS. He is still under the neurologist also but everything seems to be being treated separately instead of holistically. He hasn't worked since February and is on SSP.

@DrHildegardeLanstrom thank you for coming back to me. I'm very sorry to hear about your DP's ongoing health and all the ways he's affected.

Nowhere near as serious here, but mine had the night fits, pins and needles and some brain fog. I well imagine he's also had other minor issues which he's just dismissed. He's been assessed for epilepsy but told his symptoms don't fit the criteria and not been offered meds.

As others have also said and as you say, there's no holistic response, but also a real reticence to address that either the vaccine or covid infection itself, are likely responsible. We're at a stage of having to wait and see if it keeps happening or not.

Could I ask if you'd mind messaging or connecting with me somehow here if you do get any further useful information because I haven't come across anyone else with experience of seizures and feel very brushed off by the medics. I'm also reading all the other comments and advice. Thank you.

Please could someone very kindly link to the long Covid thread on here? I was on it a while back but didn’t keep up as my symptoms got better with first jab, then worse than before after the second jab. It was a really helpful thread to swap tips and support each other.

@ClaudiaAndTheCauldron I had completely forgotten I had written this! I had my heart tape which they only decided to do for 24 hours and haven't heard anything back yet (it said it could take 12-16 weeks for results!!) Haven't heard anything about the long Covid clinic I was supposedly referred to either. I have since had both my jabs and feel like it has helped lower my heart rate slightly but not much. I've had a couple of episodes recently on sharp pain in my left side (below my ribs) made worse by sitting or breathing deeply but not really any palpitations luckily. Hope you get more help from the cardiologist soon 😊