Hi everyone 😊 omg I found somewhere for support lol . I caught covid in march and I'm still bed ridden with no support from doc or advice or nothing. Half the time I feel like I'm going to die or must have cancer or something it's just going on and on and on . Anybody here experiencing long term covid ?
Covid since march: Hi everyone 😊 omg... - Positive Wellbein...
Positive Wellbeing During Self-Isolation
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Oh crikey, that sounds shocking. I haven't had covid, but know that it can cause many other issues. You say you have had no help. Have you contacted your GP? I don't want to patronise, but perhaps something else is going on?
Take care ☺️
in reply to mattymoo33
Hi good to hear from you😊 yes had lots of tests they came back fine apart from white blood cell count was slightly of but he said it was because my body was fighting the virus , I'm slightly anemic due to endometriosis but that was all.
Yes...😟. Since before lockdown started in February... not as acutely unwell as at the start, but have felt ill since and everything deteriorating at an alarming rate... have been hospitalised twice since and all sorts of tests , scans , xrays done and everything comes back normal.. but I can barely walk, everything hurts, falling asleep all the time but still feeling exhausted.. convinced I have this long Covid now but it’s not being recognised as that because I didn’t have a test confirming Covid at the start.. testing wasn’t available then... 😟
in reply to Nanapuff
Hi good to hear from you, I'm sorry you are so I'll and yes I have exact same problems. Doc tested me for diabetes,thyroid, blood count was fine apart from white blood cell count was a bit of due to my body fighting the virus and I'm slightly anemic due to endometriosis. He said my chest sounded clear. But my god just like you I can barley do anything stuck in bed chest flares up (I'm so asthmatic and been put on stronger inhalers now) pains in neck then glands flare up my throat starts bothering me , wierd body shakes and cramps, blocked ears, dizziness,,,,,,,,, the list goes on. I really hope you manage to get some clarity on what's been happening please keep in tou h with me . 😊👍
Nanapuff in reply to
Yes.. also have the dizziness, shakes and muscle cramps and pains in literally every joint in my body.. I will stay in touch and if I get any clarification on any of it I’ll let you know.. 😘
Hi Nanapuff,
I have chronic fatigue syndrome/myalgic Encephalomyelitis (cfs/me ) which has similar symptoms and is often caused by a virus which effects the entire system. It is not pleasant and leaves you feeling very unwell and exhausted. I have had the dizziness, cramps, joint pains, brain fog- do you get that? Slurred speech, falling to one side, tinnitus, restless legs, migraines, flu like symptoms that appear and disappear numbness, tingling. Tests tend to come back normal and there are many many symptoms ( have a look online to see if yours fit) Once you have symptoms for 6 months you can ask to be referred to a specialist cfs/me centre. The referral would be based on you having post viral symptoms that have not cleared up. Hope that helps
I am concerned with your illness and vulnerability being on your own
You could contact your local Gp and request for a support concerning your clinical needs , secondly contact Age U.K. to see if there are any agencies who can support those alone in a vulnerable state .
You will need to contact Adult Social Services
Is there anyone you know who can contact Adult Social Services on your behalf
You need a Care Plan to be put into place abs a risk assessment done to determine the kind of care and community support you clearly need
in reply to Roukaya
Hi thank you for replying unfortunately I've tried that they said there 'hands are tied" not much they can do due to the area I live in and low funding.
Call social services to request a assessment. Find out if there are any publicly funded care companies in the area or see if you can hire someone privately. Get in contact with your GP and explain fully what is going on. Best of luck. Make sure to read the care plan and also make a second copy in case. If you have any questions feel free to message me on here.
Hi,
I’m currently ‘active’ having tested positive last Friday.
When I hear of ‘long COVID’ being described people are describing, for me, what living with rheumatoid arthritis has felt like for the past six years.
A couple of things it might be worth doing....
Get your vitamin D levels checked - low levels linked to muscle aches, fatigue and depression.
Get your iron vitamin levels checked, again if low linked to fatigue.
Eat raw organic yoghurt, kafir, Kambucha tea or invest in a good probiotic supplement for gut health.
Drink plenty of water and drink some more - avoid sugary drinks.
Look up something called ‘the spoon theory’ - something used by a lady with lupus to explain to others what living with chronic fatigue involves.
Pace yourself and go for ‘little and often’. Little things like doing press ups off the kitchen wall or lightly jogging on the spot whilst waiting for the kettle to boil will get you moving and rebuild muscle strength.
Eat as fresh as you can and try not to eat after 6pm.
Step outside at least once a day if possible - even if it’s raining!
Mental health wise some counties have self referral services (Let’s Talk Wellbeing’) so you could try and find out if this exists in your area. There’s also a free website/app called Smiling Mind which is worth looking at.
Being long term ill is draining so be gentle with yourself and try to take ‘pleasure’ in the small things in your life - a gratitude diary is a light way to remind yourself to do this. At the end of each day, In any old or posh new shiny book, write down as fast as you can 10 things you are grateful for... don’t stop until you’ve written the 10th one down - they don’t need to be classy or showery, just from you! Start each one with Today I am grateful for..... some days I’d struggle and I’d fall back on my mantra of ‘Today I am grateful that I don’t live in a war zone’. You will know when the diary has served its purpose and you don’t need to do it any more (6 weeks -6 decades!).
I hope that there is something useful in that little lot
All the best
Ali
Wonderful advice Ali. It can apply to us all, with or without Covid. The Gratitude diary is a good idea too.
in reply to Ali_H
Thankyou Ali very useful advice 😊
Hi Loki777, That sounds awful, but I know it's emerging that 'long' covid19 is a recognised thing. I think that if you haven't had help, you should now seek it, via a phone call to your GP surgery. It seems that clinics are to be set up to help those people like yourself who are still suffering all sorts of symptoms, months after having had covid19.🙏👍
in reply to
Hi cheers for replying, I will try to call them this afternoon thankyou😊
MidoriVisually impaired
I think its time for a complaint to your Surgery, This should not have got to this state. Apart from anything else, the longer you stay in bed the less likely you are to gain any measure of fitness again.
Are you getting fed properly? Does anyone (district nurse or carer come to see you?) Surgeries are so concerned with keeping the well folk safe that they forget about those who can't get to the Surgery.
Please write to the Practice manager at your surgery, Copying it to the Care Quality Commission, and your local Health Trust.
Cheers, Midori
in reply to Midori
Hi thankyou for you're reply , in a bit panicky now, you mean I'll never get back to myself? Omg , no I have no help apart from my ex husband who is and has been amazing ,yes I eat very healthy all the time,
The more you lay in bed the more muscle strength you lose; This is why exercise is important. Can your Hubby get you some Exercise bands to use in bed? You can loop them round your feet and pull against them. Bean cans are good for arm exercising. Ideally your Doctor should have referred you for Physio, so that you could have some exercises tailored for you.
Can you get out of bed at all? If you can, it would be better to do so, even if it is only in a chair. How do you manage toileting, for instance. Can you make it to the bathroom or have a shower?
Do you have any hobbies to take your mind off things, as worrying doesn't help. Anything which distracts you from brooding on the problem.
Cheers, Midori
in reply to Midori
😊 yes I can get up and go too the loo which is a bonus 🤣👍 what a good idea about the excerise bands👍👍 I'm going to invest in some, thankyou for all you're help really is appreciated 😊😊😴👍
Probably better for you to be upright, as Covid gets into your lungs, so sit in a chair as much as possible and mobilise yourself gently to keep your muscle tone.
I once had to spend 3months in bed; I ended up in a wheelchair for several weeks until I could get my muscles going again, but I was never as strong, so please mobilise as much as you can (I don't mean run marathons!), so you don't get too weak. Bedrest also causes loss of calcium in bones, so if you can get VitaminD with Calcium it would also help. If you can get some sun before it gets too cold it would also help, even if it's only 15 minutes a day.
Cheers, Midori
in reply to Midori
You're help is appreciated so much and I will I've got up today and after reading these messages I had a wee walk around my garden , did some deep breaths in the fresh air 👍👍 thankyou 😊👍
I am so sorry you are so ill it is disgraceful that you are not getting any help. People on here are very helpful. I do hope you improve soon
in reply to Sylvia22
Thankyou very much👍👍
Yeh that's what I was told🌟⭐
😊😊 thankyou I hope you are right 😊😊 yes I can manage out to my garden , I feel bad having to rely on my husband see he's my ex husband but we are best of friends he's such a wonderful man I'm sure if I talk to him we could mabey arrange a wee walking day. Thankyou so much for you're help 👍👍😊😊
Short walks will almost certainly help, but not too far at first, You don't want him to have to carry you home! 
Cheers, Midori
I will thankyou so much and you take care to😊👍🌟
MidoriVisually impaired
Hope you are beginning to feel a little better. It will take time, so baby steps at first, then building up again.
Sorry, I didn't say before, in case you might be thinking What Does She Know? I am a retired nurse, and my specialty was rehabilitation.
Cheers, Midori
in reply to Midori
Hi hope you are well😊 no I wasn't thinking that at all I appreciate all help and advice I thankyou for going out you're way to message me, thankyou😊👍
Try to do some stretching, yoga poses, and some deep breathing to open up your lungs 
. Your lungs need exercise just like any other part of your body 
. I pray, but other people meditate. Get your D3 sunshine in, even if you have to put on a bathing suit and lay out on a towel, as you safely, and ( virtually) experience the sandy beaches of Aruba, Trinidad, or any other vacation site you have enjoyed in the past . Yesssss I have done this, just make sure your not in view of any peeping Tom's 
. If you live on a first floor you can invest in an inexpensive one way contact paper where you can see out, but no one can see in. I take a 5,000 unit D3 capsule daily which keeps my blood levels perfectly in balance. Every living creation thrives on sunshine. The lighter your skin, the higher the level of D3 you will need to take. Make sure you also take your Iron, if you are not eating enough in your diet. There is something called slow iron tablet, that my sister takes. These capsules will not cause constipation. See if your Dr. will test your D3 levles at your next blood panel test, I hope/pray you will be good as new ASAP .
in reply to RLN-overcomer
Thankyou for you're reply , the sun bathing bit made me laugh I live in Scotland and all its done for days is pour down with rain lol bless you cheers for you're reply 😊😊👍👍
RLN-overcomer in reply to
Try to invest in a sunlight lamp
in reply to RLN-overcomer
Good idea thanks😊👍
Hi Loki,
I have chronic fatigue syndrome/myalgic Encephalomyelitis (cfs/me ) which has similar symptoms and is often caused by a virus which effects the entire system where many end up bed bound. It is not pleasant and leaves you feeling very unwell and exhausted. Tests tend to come back normal and there are many many symptoms ( have a look online to see if yours fit) Once you have symptoms for 6 months you can ask to be referred to a specialist cfs/me centre. Hope that helps
in reply to Bee-bop
Hi thankyou for you're message it's very interesting thankyou I will have a look into this I just hope my GP will agree to this if I ask there very much " oh this is all in you're head" then my results come back or they do a phycical examination and there like " oh mabey you're right" very disheartening. I appreciate you're reply and I will try thankyou keep safe and well😊🌟
Bee-bop in reply to
I was the same with the everything is coming back normal. Mine is linked to a car crash so, I was told it was just my body and mind getting back to normal after the injury and trauma. It is weird trying to explain how exhausted you are when you do very little and even trying to watch a film makes you feel ill? I was a very active self employed single mum before all this so, I knew things weren't ok but, it took me time and someone I knew getting post viral syndrome to realise that my condition was identical. Good luck and don't take NO for an answer. There is a definite known long covid condition and although it is new and they are just learning about it, it definitely has similarities with cfs/me.
I will also add as a kind of funny, I have one foot that goes freezing cold even in summer-only since the crash. It is not circulation that causes this as that was tested, nothing on the MRI and not nerve damage as nerve conduction study came back normal so, that means it must be in my head....believe me, there is no way I am making that up! I used to say to people feel my foot, go on see how cold it is?! Thing is, no one wants to do it 😂😂😂
in reply to Bee-bop
Hi sorry I'm just replying now been sleeping like 18 hrs a day . How are you? Thankyou for answering me yes totally people and docs look at me like "you're still not better?" Like I'm some kind of looney , till they look at the color in my face draning to a kind of green colour. was on the phone to my GP last week he's as helpful as a chocolate fire gaurd 😕
Bee-bop in reply to
Rest is the best thing you can do right now. You can always ask to speak to a different GP at the same practice. I was lucky that I managed to get two ok Gp's who helped me in the end.
I know it is hard when you feel exhausted and ill to try and keep on to get the care and support you need when you don't feel believed. I hope you can get that soon.
I was anaemic too earlier this year and I feel that getting on top of that helped me a bit. How are you doing with that ?
in reply to Bee-bop
Still taking my ferrous fumarate pills , very heavy time if the month just now my gynaecologist wants me to start some new med for endometriosis feel worn down. Unfortunately that is the better doc at my practice, very frustrating. I tried to change doc surgery but because of where I live I can't get accepted .
Bee-bop in reply to
I hope the new meds help. Rest as much as you can.
That's a difficult one with the GP and not being able to change surgery really can be a bit of a postcode lottery with getting a decent doc.
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