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Off you pop! Long Covid sufferer

52 replies

Pegsonstrings · 30/05/2021 02:35

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?

OP posts:
Pegsonstrings · 30/05/2021 02:38

Sorry meant to add that I got taken by ambulance last Monday due to dull ace around the heart and as a precaution ecg came thankfully normal but ct showed scaring on my lungs. I feel so terribly lonely with it all

OP posts:
RickiTarr · 30/05/2021 02:41

No long COVID here but I have got a full house of autoimmune issues that were repeatedly misdiagnosed.

I was talking to a RL friend earlier about what impact long COVID will have on perceptions of chronic illness and invisible conditions. She is in a policy/economics type job and her prediction is a great deal of money will come on stream for long COVID research and treatment in 2022. (She never did answer my actual question. Grin)

I hope for your sake she is right. It’s miserable watching months drift past without answers or improvements. Flowers

Pegsonstrings · 30/05/2021 03:06

Thanks for your message. I hope some research will be done at least. To be told to just live with it is very lonely and scary. Sorry to hear you have autoimmune issues, it’s horrible so don’t wish it upon anyone

OP posts:
RainbowCrayons · 30/05/2021 03:07

A friend of mine had the same with long covid. She found that the vaccine actually helped improve her symptoms. There's some evidence that it helps the body flush out the last of the virus.

www.medicalnewstoday.com/articles/vaccination-may-ease-symptoms-of-long-covid

Hope you feel better soon. Flowers

KihoBebiluPute · 30/05/2021 03:15

Flowers its grim to be going through this. Not got any personal experience but I have a good friend with ME/CfS so I an familiar with the kinds of frustrations dealing with this. Also wanted to highlight as PP that there is some evidence that the vaccine helps relieve long covid so read up on that.

carolcarolcarrot · 30/05/2021 03:45

A lot of conversation about this on Twitter.

No provision in the Nhs currently from what I've heard. There seems to be assessment services set up with no follow up intervention (probably just so the government can say they're doing something).

I'm really sorry you're suffering with this. Certainly more needs to be more done both for the physical and mental health impacts.

BensonStabler · 30/05/2021 04:09

I am so sorry you are suffering, misunderstood and isolated. It must be terrifying with it being something new and still so much unknown. My heart goes out to you. Hang in there, things may improve over time and with more research and understanding, and making the Doctors and general public more aware. There will be better support and understanding.

Many of us with autoimmune disorders and post viral illnesses, ME/CFS, Fibromyalgia, Lyme disease, etc that wiped our prior self abilities lives out with the suddenness and magnitude like being hit by a frieght train.

It impacts on every area of your life and relationships, and people just don't 'get it' and can minimise your suffering and make ridiculous comparisons when they compare your utter exhaustion, weakness, and fatigue and brain fog to the ignorant and infuriating comments saying we all get tired, or debilitating pain is put down like it is general aches and pains of getting older. Even people that knew us before the illness don't grasp that we were physically capable, healthy, strong, fit and worked hard, kept fit etc and suddenly you are seen less than or like a misery guts who constantly complains or is being overly dramatic attention seeking and being a hypochondriac, because everyone around you, friends family, collegues tire of seeing and hearing about you ALWAYS so unwell yet you "look fine" and are even more convinced when they hear from equally ignorant and uninformed Dr's that because all these scans and blood tests etc keep coming back all clear. So it must not be true. These outdated Dr's i.e. The arrogant dinosaurs that are set in their way don't believe it is a real illness, that say it's all in your head or depression is the cause.

It usually takes people like us many years to be diagnosed, and like you said at that point dismissed from any long term help as it's chronic, uncurable, and mostly untreatable. however I do believe that Long coved has finally shone a light on these illnesses and worldwide their is going to be a lot of attention and research into this, and hopefully figure this out and how to help from a practical point of view, or some medicine that could come along one day. So there is hope. I know it doesn't help much in the meantime but please know you are heard, believed and understood, especially amongst similar suffers. Thankfully some people have amazing understanding and empathetic family, friends and Dr's. I hope you have someone in your life who is in this with you. For any doubters tell them to educate themselves if they care to understand. As for bad Dr's dismissing you or not helping you get your illness properly managed and improve your quality of life, be your own advocate and don't take no for an answer. Have a family member be there to speak up for you if you are too sick and weak to put up that kind of fight.

It would be helpful if you research the other above illnesses as I said there is so much similarities in symptoms, causes, treatment of the people from Dr's, and loved ones. And go on support groups online on specific health websites or Facebook groups where you can relate to others. I'm sure there will be some set for long coved sufferers by now, but the others I mentioned will still be helpful. Many have had these issues for decades and have great advice on how to pace your energy and activities in to bite size steps and plenty of rest in between, tips for pain, comforts, relaxation, meditation, mindfulness, vitamins, note books or post it notes or mobile alarms with reminders when forgetful, disability aids to help you around and help with every day care and mobility, and just generally have warm love and understanding from those who do 'get it'.

I wish and hope for you a good recovery. You may not ever get back fully if like ME and fibromyalgia, but have better days more and more if managed right. Yet again some people do make great recoveries too. So still never lose hope. Research, research, research as knowledge is power. Hugs xx

Pegsonstrings · 30/05/2021 04:47

@benson thank you. I will have a look. Your post is very informative and helpful. Thanks for taking time to post. Possibly the best advice I have been given in over a year regarding my health issues.

OP posts:
CrunchyCarrot · 30/05/2021 06:38

Unfortunately you are finding out first hand how GPs deal with people having a chronic condition. I have autoimmune thyroiditis and the understanding and treatment of this and other chronic conditions by the medical profession is shameful. BensonStabler is right, you will find far more support amongst similarly-afflicted people, but cast your net wide. Long Covid often affects the thyroid amongst other things so we will have overlapping similarities.

I've chosen to go down a dietary approach to helping myself and have found groups on Facebook very helpful, plus a couple of other forums. Phoenix Rising is particularly good for CFS. Most of us have to figure out our own treatment, not easy when one is feeling rubbish.

Rest assured you are not alone, there are thousands of us, and our experiences will help you. Flowers

Egghead68 · 30/05/2021 06:41

@Pegsonstrings just wanted to offer support. I had Long Covid March-November last year and I know that feeling of being along with it well.

Presumably you are a member of the online support groups on FaceBook etc.? I found them really helpful.

There should be national coverage from Long Covid clinics now but I am not sure what they offer.

Take care. It’s miserable.

colouringcrayons · 30/05/2021 06:43

I think for long covid, and all other post-viral/auto-immune conditions, the cruellest aspect is the widespread denial.

I see so much denial on any thread about this.

I agree there is research funding going in, probably not enough but it is a start.

hopingtochangeeachtime · 30/05/2021 06:52

My friend had terrible post viral fatigue after glandular fever and found a mild dose of antidepressants really helped him.

Lindy2 · 30/05/2021 07:01

I'm not sure what GPs can do to help with chronic long term issues. I would ask about the long Covid centres that are supposed to be being set up. I think from previous Covid threads some people have been referred to them.

With your ongoing difficulties though why on earth would you risk catching Covid again? By not having your second vaccine you are not protecting yourself as best you can. Goodness knows what a second dose of the virus would do to your lungs. Get the best protection you can from this worsening and get your second vaccination as you as you are eligible. Many people have actually found long Covid symptoms have lessened after vaccination.

I had Covid in January and it was horrible. Luckily I seem to have recovered ok although it's only now that I feel pretty much back to normal. I've had both my vaccinations. I'm doing everything I can to make sure I don't catch it again (DH has a high risk job which is where we all caught it from). If it's vaccine side effects that worry you - I was very rough after the first dose but hardly any reaction after the second.

PseudoBadger · 30/05/2021 07:05

My DP is the same OP, and is currently being investigated by neurology as he has been having fits in his sleep, which they believe is linked to the infection. Such a strange and awful disease Sad

picklemewalnuts · 30/05/2021 07:22

I'm feeling a little better at the moment, after some years with a chronic illness. It's weird, I keep remembering things I used to be able to do. It's like a different life time. I was sharp, fast, competent and efficient. Now I'm woolly brained and can't remember what I've done!

ZombeaArthur · 30/05/2021 07:30

I had COVID early last year and I’ve suffered with long COVID since. The fatigue I’m used to as I’ve suffered with chronic fatigue for years, although the fatigue I experienced when I had COVID was unbelievable! I’ve had a constant brain fog for over a year, my mind simply doesn’t work the way it used to and, after over a year, it doesn’t look to be changing. The worst symptoms I have are with my hands and arms which are permanently cold, like ice. I also get severe pain, sometimes so bad I can’t use my hands. In cold weather, I can’t do things like hold a pen or handle money as I can’t feel my fingers.

A poster above mentioned antidepressants, which I was prescribed years ago to treat my chronic fatigue and I’d completely forgotten about. I’m gonna call my GP this week and give them another go.

ClaudiaAndTheCauldron · 30/05/2021 08:03

Hi OP. I also have Long Covid. It's shit.
The fatigue is awful. It's worse some days than others. Some days I can't get out of bed. Some days I need a nap just to get through the day of doing basically nothing.

The brain fog and confusion and 'losing words' has been awful for me too. I have tried to describe it to some people and they say, "I forget things too!" But this is on a whole other level. Sometimes I can't link things to do, or it doesn't occur to me to do them anymore. Losing words and forgetting what I've said and coming back and saying it again 10 minutes later...my family have learnt to work with me. I haven't driven a car in 6 months.

The worst thing is the high heart fate and breathlessness and chest pains. I'm waiting to see what the latest x-rays say. Going up and down stair or taking a shower will get my heart racing and leave me so breathless. The chest pains just get worse.

I keep being told it is after effects of viral illness and it will take time. Honestly it's been 6 months and I'm fed up now ☹️

Berniesknittedmittens · 30/05/2021 08:32

Another sufferer here although no fatigue. I have lost some hearing and have no sense of smell for 10 months, this does seem to be coming back slowly but things don't smell the same.
I also am front line NHS. The general consensus from management there is: get over it now so we can clear the backlog of delayed treatments. I'm sure I have some sort of anxiety/ depression, it's just awful!

CFSKate · 30/05/2021 10:25

The ME Association has been posting about LC. Scroll down for news section.
meassociation.org.uk/

Noapplejustcrumble · 30/05/2021 14:52

I am the same.. Had the first AZ a month ago and it has increased all my LC symptoms. Seriously wondering whether to have the second dose.

strangeshapedpotato · 30/05/2021 16:51

Your GP knows no more about this than a random bloke down the pub so not surprising they can't help.

Your best bet is to do your own research, but avoid "Alternative medicine" practitioners because it's a certainty that these leeches will be selling snake oil cures for this - they always crawl into any holes left by medicine and long-covid is a HUGE hole - we don't even know yet what causes it, never mind how to treat it! With the right GP you can then go armed with whatever knowledge you have gleaned and use them to get referrals, prescriptions etc.

I think you should get your vaccination completed though - early research suggests vaccines help with long covid.

stayathomegardener · 30/05/2021 17:06

ME for 17 years and then long Covid from March 2020 infection so I hear you.

Get on to Dr Myhills Facebook page and buy her book. Great track record in helping the ME community.

BensonStabler · 30/05/2021 19:08

We can also not underestimate the emotional and psychological effects. It is life changing. The longer it goes on, the more you miss out on and feel like you are a burden, can't do simple every day tasks of living. You're unable to go out to work or go out socially, shopping other than online or need a loved one to do almost everything for you. It affects your abilty to play with your children, look after your home, it affects your friendships, some of which are lost if fair weather friends decide they have no use for you now that you are awlays sick and unable to go out and have fun, it affects romantic relationships and family. Literally every aspect.

We really mourn and grieve for our old selves and all the abilities we had, and if still not getting better as each month/year goes on, you need help in coming to terms with and accepting your future won't be everything you dreamed and planned. It takes time and outside help to really adapt and accept these major losses. I am speaking as someone with ME/CFS, Fibromyalgia 20 years and other multiple chronic illnesses on top. I am truly hopeful though for you long covid sufferers. Fingers crossed you just get increassingly better.

I too agree that it would be safer to take that second vaccine to protect yourself. I had bad side effects with my first AZ but not my second. Understanding hugs to all of you with these debilitating chronic illness. You are all warriors. Stay strong, you are not alone. 🤗

BlackeyedSusan · 30/05/2021 23:03

I'm not surprised. Which says a lot in itself.

BlackeyedSusan · 30/05/2021 23:04

I need o go to.tbe GP about fatigue but I am too bloody knackered

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