Long covid has stolen my life.

[Greedybilly]

It's been 2 years and I'm going round in circles. I pace, rest , take every vitamin going and still I can't get better. I feel so awful probably 5 days out of 7. I always end up trying to do something on a good day and then paying for it. Friends are busy getting on with their 'normal' lives. It's so horrible - Dr's are no help. Has anyone got anything positive to say about LC recovery please as I've completely run out of hope now.

Small steps every day you need to build yourself back up. Im not saying you will ever be running marathons or even back to where you was but anythings better then where you are now i have long covid and it sucks

@youalright- I'm sorry you have it too- it's a horrible illness. I seem to have run out of hope recently...

I had 2 years of some unspecified, undiagnosed lurgy that the GP said may be CFS/ME/Long covid/PVF.
I had to pace myself and I've been a lot better for the last 2.5 years after taking early retirement. I have been super busy for the last week which has left me pretty worn out so I'm not as recovered as I had thought. I lost 2.5 stone 2.5 years ago and have kept it off. I think this has really helped. I changed my diet quite drastically. Eat very little sugar, eat a lot of fermented food, only eat between 10am and 7pm, cut down on carbs, eat salad before dinner, eat a savoury high fiber, high protein breakfast.
While this is all anecdotal and not advice, hopefully some of it may help you.

I had an awful 9 months of nervous system issues post covid back in late 2022 - chronic pins and needles multiple times a day , enormous back of head/neck pain , buzzing in legs and 1 finger, burning pains in forehead and eyes, weird spacey feeling , blood pressure through roof, - it was awful, I was convinced I had motor neurone or a brain tumour - went to A&E twice, had a lot of bloods and an ultrasound on neck as also had a lump - doctor put me on low dose beta blockers to get my anxiety down and I saw a private neurologist who was terrific and did a load of tests and said she was sure it was post viral syndrome and very possibly a bad reaction to my 4th vaccine - her advice for me was to lose a couple of stone, up my walking to 10,000 minimum a day( excercise for me wasnt an issue- , in fact I felt better walking around) practice Wim hoff breathing twice a day on the bed for 15 minutes a time, lots of neck exercises, go gluten free for 6 months and cut out sugar and eat very clean, very little alcohol and no caffeine - and to make sure I upped my vitd, vit b complex plus I took something called alpha lipid acid that she suggested -. gradually I improved a lot but it took time-.I think the breathing stuff really helped a lot - she basically said my nervous system was totally out of kilter and needed a calming reset and it would take a fair few months. One day I woke up and the head pain had just gone and all the other things stopped instantly that day too - all very odd - I’ve been left with dry eyes but I’m 64 so that could just be age and I do tire more easily , but I can function ok - on the plus side I lost weight and I eat far better these days. I feel for you , as it’s awful and frightening -

4 years and I still have it. Literally feel like I am dragging myself through life every day. It’s utterly miserable. I’m grateful I have ‘some’ life but really mourn the life I used to have.

There are no answers for you in conventional medicine. However, I would dig deep in the online community and look for alternatives. Maybe start with the ‘disinformation dozen’ and go from there. They were all vilified and now being proven right.

Did you have your jabs by the way?

Thanks for all the comments. V much appreciated x

@Blackwidowsbitewhy would you want to know ?

I was just wondering.

I had Covid in the first wave and was seriously ill, it took me about 18 months to feel like myself again. But I was already early retired so I could just rest. I did nothing but rest for a year. I get mighty irritated when people say oh it’s just a cold. I don’t have an answer but you have my sympathies.

@ViciousCurrentBunthank you! Sadly too young to retire here.

I'm almost 2 years in and trying to recover. But still holding out hope that I will.
Things I have realised help:

1. Pacing. I've been boom and bust and that has to stop. Have just started using a free app called FatigueSense. Have a look at the free advice from CFSHealth on Instagram/FB - your baseline is probably lower than you think.
2. Finding a doctor who can prescribe off licence. Everyone with LC has a different version of it and there are drugs that can help, but it has to be personalised. Take a look at Dr Robert Groysman and read his books if you can (on Kindle).
3. Lifestyle measures - Groysman goes into these too. Try things one by one and stick with what makes a difference. Calming the nervous system is a big one. The Suzy Bolt programme is helpful for this, but I personally don't think it's all about the nervous system retraining, which helps, but as an add on to medical support.

I’m just over 2 years in too and have had another crash so feeling a bit despondent. I do think I need to take the nervous system retraining seriously though. Any ideas on where to start with this?

@Polkadottablecloth I have read the robert Groysman things - I was interested as although I didn’t follow at the time, everything he said was how it worked for me , I think it’s probably more use for those whose nervous system has taken the brunt of it , rather than those who developed heart/breathing issues and POTS etc - I know myself the stuff tge neurologist told me is covered a fair bit in Robers books and Facebook pages , breathing retraining lying down plus low grade stretching and chair and bed exercises seemed to help a lot - for the spacey feeling ( I got this a lot- felt like I was going to feint) the neurologist told me to sit very still , breath in and out and focus on breathing then focus without blinking on an object 25 feet away and stare at it for 30 seconds a time without moving or blinking - then sit still for a further 30 seconds and stand up and walk around. If I was out and about just stand still and do the same ( I probably looked bonkers) - it did though help me - initially when I was first ill I felt like I had a stroke, as one side in particular and one leg in particular just felt heavier than the other and average noise and sunlight all felt way too loud or too bright. It’s like my senses had freaked out and that’s the reasons the neuro felt in my case it was a definite disruption of my nervous system - was hard to know with me whether Covid or vaccine, as I had vaccine and then 2 days later had Covid. I suspect I had the vaccine when Covid was already brewing and they interacted badly ! I do know people though online who have all struggled with this, some vaccinated but plenty who were not, as were ill before the vaccine was available, so I lean towards the virus being the main issue for most- I also put my vit levels at optimal rather than just ‘okish’ and since I recovered have kept it that way

The Suzy Bolt RRR programme is good - find the parts that work for you. She does a 2 week free trial. I don't personally totally buy in to her focus on NLP, I think you really need good medical support too.

Also, if you have any history of trauma and haven't had psychotherapy, then see if you can access that too. That's crucial for nervous system regulation.

@didntlikethis- yes been following Dr Groysman- his explanations on why certain symptoms occur do help in a funny way as I can make sense of certain things in an illness with not much logic.
Done loads of yoga nidra breathing meditations which have saved my bacon and given me a tiny bit if control back.

It may be worth looking up Mast Cell Activation Syndrome (MCAS). There is a brilliant GP on Instagram who specialises in this and other chronic illnesses like ME, Long Covid and MCAS. He’s called dra_says (Dr Ahmed). He’s brilliant and does many videos educating people on these illnesses and what can help.

Have a look at Jennifer Mann on Instagram and her Heal programme which is brain retraining. She used the techniques to recover from CF herself. You can sign up to a feee masterclass via Zoom on 11 Aug. I’ve also signed up.

i do feel that nervous system dysregulation is at the heart of Long Covid for many patients. But brain retraining takes some motivation and commitment to see results.

more than six years suffering here, can’t remember what it felt like to feel fully well and full of energy every day. Prior to March 2020, I took my good health totally for granted…..so you have my utmost sympathy OP.

There was an organisation called Long Covid Kids-obviously you're an adult, but maybe there's a similar group, or some of the advice could be helpful.

@DogGawn- I'm so sorry it's just awful. Dragging yourself through each day becomes normal:(

Hi, I had LC for two years - completely debilitating until I took a supplement called your Gut Plus. Absolutely life changing and I would 100% recommend it. It was developed by a University for long covid so not a quack medicine. It’s not very expensive and definitely worth a go if you’ve tried everything. Xx

The jabs reduced the likelihood of contracting long covid by about 25%. Whether OP had them or not is largely irrelevant as we know people from the vaccinated and unvaccinated groups still contracted it.

Placemarking

So weird you say that because where I worked we had the jab early. A bunch of us had the floaty space feeling. Utterly bizarre. Literally like you were walking on water and couldn’t feel your legs and thought you could faint but you didn’t, and it wasn’t the same. It was just out of body. Very surreal.

Something really wrong with those jabs. Regret taking them but can’t go back. So glad my children haven’t had them.