Covid for 4 weeks & still bed ridden. Anyone else had prolonged severe illness without hospitalization

I'm on the same boat as you so are few people here. Our GPs left us without any help, support or direction. But I'll try to force my GP to send me to a specialist. If not tips from this group my recovery would be way slower or not existing.

What are your symptoms now? What's changed?

I would go with what macie said dane if you can't get the help and support you need how you going to get better phone your gp and tell them you have back troubles and need to see someone if they don't listen ring your local councillors if they don't help ring the mayor in other words fight your corner what area you from dane

Yes, it seems like we will have to fight to get heard. I've just written to my GP to ask for some help. I also spoke to a GP friend of mine today who kept telling me the importance of pacing myself, do a bit then rest. I might have been overdoing things a bit (with 4 young kids it's hard not to!) so will try to watch it even when symptoms improve.

My current symptoms are strong upper back pain, pains in my legs, strange pains in chest and what feels like swollen glands on the left side of my neck. A bit breathless on exertion too. A bit of a cough. GI issues but not as bad as previously. I also am very prone to pins and needles in my hands if I lean on them.

Back pain had been easing for a long time and it's a symptom I had most strongly in first 3 weeks of virus, it feels very strong again which is upsetting as it keeps me in bed when I've been more or less up and about the last 5 weeks.

Hi

When you say back pain do you mean a back ache or pain in lungs when you breathe? I get quite a bit of pain in lungs especially right side which comes and goes.

Must be so tough going through this for so long and looking after 4 young children - Ive hardly been able to look after myself! Hope you have some good support.

Lx

Hey Dane. I am 31 and otherwise healthy before this virus. I am feeling those same strange chest pains. It is like nothing I ever felt before. At first I thought I was having a heart attack, but it turned out to be this jerk of a virus. Used to feel pain occasionally in my back and legs but not nearly as much. And it is not because of mucous and other fluid stuck in my lungs. After doing two ECGs and xrays, three different doctors said my heart is healthy and my lungs are clear. Problem is, none of those doctors can explain the chest pain. They tell me it's likely just another one of those freakish symptoms of this virus. Some knowledgable friends in the medical field tell me it may be pleurisy, or an inflammation in the lining of the lung, usually caused by a viral or bacterial infection. It also apparently does not show up on xrays. They said it usually goes away by itself. Problem is, I am two months in and still feel it. Not as much as before, but this is really getting old.

It's back pain, seems more of a muscle issue as it's worse on movement and not really worse when I cough, but can't be sure I guess. I've had a lot of muscle aches in general through the weeks, in my arms, legs. I'm having slight chest pain now which seems to be a new symptom!

The kids had to keep themselves occupied today...I was in bed and my husband working (from home but still it's work)

Anyway hopefully things will get better for all of us.

I"m in London..they all say same thing, it's a new virus and nobody knows

im 28 slim build and before the virus was rather healthy. I too have the chest pains which faded away after the 3rd or 4th week and came back recently even worse. My symptoms started on the 4th of April and ive have 3 ecgs a xray blood test and results came back fine my gp ordered me a 24hr tape and ECHO to monitor my heart, which i am waiting for and will post how it goes on here.

Hi ,

Sorry to read that you are suffering again and like Lulu said it must be so difficult with young children at the best of times during lock down let alone while you are ill.

Luckily I didn't need to fight for my ECG I just brought it up as a concern as I had an abnormal 'unconfirmed' ECG a few weeks back taken by the paramedics also I was diagnosed Bradycardic last year .My GP totally agreed that I should get one.

I 'm with Gary and Macie 100% insist that you see someone.

Hope you manage a comfortable night x

Hi Dane

I'm 9 weeks in and am improving, but still have odd breathlessness and weird aches/odd sensations across my chest and lungs. Have had joint pains as well. I wonder if this is neurological or muscular inflammation, or maybe both?

Like you say, GPs just don't know. I did have to push my GP to refer me to a Respiratory specialist 3 weeks ago, but who I haven't seen yet...

Mary

Austin,

Sounds almost exactly like what I've been through. I started feeling it in late March. It got milder for few weeks, then came back with a vengeance in late April. I tested positive for the virus mid April. I also had a normal blood test about a week ago. It still has not gone away and now that I've been trying to get back into normal life for a few days by walking or getting groceries, I seem to feel it more yesterday and today. Yes please let me know how the echo turns out. All the best.

It's so difficult to tell where the pains are coming from and seem to be so random - some days they are a lot worse than others.

I meant to answer your question earlier, I have had to see a specialist privately as it was taking too long through NHS - luckily I have medical cover at work. I am speaking to specialist 2.00 Friday for results of a CT scan I had today, if you have anything you'd like me to ask specifically let me know and I'll do my best to get an answer for you.

Lx

Good for you Lulu that you have private cover and can get the needed help. It's very kind of you to offer to ask a question for me. I think the one question on everyone's mind is, has anyone with long-tail covid fully recovered yet? But don't think the specialist will be able to answer that

Good to hear you are improving Mary. I will speak to my GP tomorrow and ask for help. I probably need another xray done but have already had 2 (they were done after week 1 and in week 5 both showed covid and second one showed no improvement) and not sure a third is safe

Dane I asked a doctor about too many xrays. He responded that CT scans are fairly common and are the equivalent of 400 xrays, so a single xray every now and then is not bad.

He did say last Friday that he thought most of my issues were due to inflammation of throat/lungs and he indicated he had seen people who had been severely ill and hospitalised - he said he thought I should expect another 6/8 weeks to recover - that would take me to approx 4 months and probably quite a few of us on here are following that same timeline - a bit different to the 2/3 weeks the Gov/NHS quote for mild/moderate cases.

wow that's a long time frame but at least it gives you a sense of what to expect so you don't get frustrated at not having fully healed yet

Wishing you and everyone well

good to hear another perspective, my GP suggested I don't hurry to get another one done

so ive been on the same boat with some random chest pains and its definitely inflammation in the lining edema. something that helped me is breathing exercises and hold the most you can, it improved my breathing and some of these issues are also caused by anxiety so definitely praying and real distractions help

also ginger tea with lemon and honey helps

Morning guys and girls had a really good day yesterday different night sweats on and off awake early maybe because still got chest or lungs recovering due to the sweats will do some walking this morning may wait for the nights to improve a bit before stepping up to jogging can hear my nose still popping this morning so that still hasn't gone start week ten tomorrow hopefully you all slept well Gary

Hi Gary

Glad you've had a good night. Mine wasn't bad either. Have stepped up my exercise to walking a bit further each time. No jogging for me because I'm not ready and because my knees are shot to bits!

I wake up with mild headaches and always have some chest constriction, which sometimes has an associated wheeze or slight breathlessness. All slowly improving though. Nice to be able to drive now as well.

I'm also pleased to say my 12 year old daughter is much improved, though still has a little way to go. She has been left highly anxious however, which hasn't been helped by seeing me so ill, her own experience, general lock down anxiety (like most people) and the general trials and tribulations of being 12. Saw the hospital Psychologist yesterday, who was brilliant. She will now have CBT when back at school and see Psychologist again in a month.

I just want to know now whether we have some immunity, so keen to get access to antibody tests sooner rather than later.

Have a good day everyone.

Mary x

Morning Gary, Mary & everyone!

Brilliant Gary that you are even thinking of jogging things are definitely improving for you quite fast now - am so pleased. On one of my walks I did get the urge to jog but feel same don't want to push it too soon and never mad about running at best if times - swimming is my thing!

Mary am just so pleased you and your daughter are both doing well - I always feel fuzzy headed in morning and still have tinnitus. You have both had such a tough time and glad she is getting the correct support.

I am sleeping like a log, 7/8 hours making up for all the weeks couldn't sleep I think but wake still tired literally think this is the body recovering/healing. Phlegm been better last few days so fingers crossed don't jinx it.

Googled my random red, smooth mark on tongue last night its called geographic tongue its caused by - yep no surprises here - inflammation!! No treatment and not serious but seems to be another little gift from the delightful little virus which just keeps on giving!!

Enjoy your day hope everyone can see some progress however small.

Lx

Hi Lulu

Glad you are sleeping well. It's a relief to get a good night isn't it?

Yes, it's been very tough for us (and all on here), but so thankful we are, essentially, all survivors and improving.

My main aim today is to take the girls somewhere near water where they can have a change of scene. We've got a lovely country park near us with a nice river. Will take a picnic and chill out.

Have a good day everyone x

Brilliant that sounds lovely Mary and perfect weather! Have a lovely time.

Lx

Morning lulu I think I may just hold back a few days with the jogging had a good walk seeing the joggers run past me and thinking no Gary not yet maybe week 12 loads of sleep and the phlegm going is good for you do you think me sweats at night is down to inflammation lulu always dry mouth in the morning have a good day Gary x

Morning Mary so glad to see you and your daughter improving and driving get you brilliant news im not surprised your daughter has been anxious it would have been awful for a 12 year old to have to go through what is a nightmare for an adult keep at it Mary and let's hope we can all find a way out of this Gary

glad that everyone seems to be making progress. I just have a tight chest and tiredness left but able to get on with life a lot more without thinking about being ill which is good. Enjoy the sunshine everybody!

Morning cat how are you getting on with the bike rides and jogging and has the cough eased up I think that is what you were having trouble with Gary

Morning Gary,

I get the hot sweats too(not menopause related) and the dry mouth.

Mornings are the worst time for me .

Waking with a headache most mornings and not being able to even open my eyes for ages ,I have to give it a good hour sometimes longer before I can get up.

Do you get them just at night ?

I can get them during the day when I exert myself a little ...like dusting ,hanging a bit of washing ect. x

Yes Dawn if I over do it I do as well that's when I have to stop readjust normally water I was a lot worse when I had the dehydration I'm going to see if I can find something at the chemist I get the headaches as well they come and go ibuprofen but sometimes do not work so I rest up just hoping like everything else with little sugar it does one and nothing else replaces it dawn are you about 10 weeks in dawn or around gary

Hi Gary,

No I was 6 weeks yesterday so still a way to go I guess .

Just need to know when to stop.It still slaps me sometimes as I think I feel ok to do things and then I feel awful again.Like yesterday early evening I did some dusting and cleaned my kitchen window and bang my chest felt tight breathing heavy .

Just going to prune the garden a little today but with lots of rests.

Enjoy your day x

Yes Dawn I know what you mean I'm trying to work out how long the dry mouth will last I sorted the dehydration well I thought I had but my urine is darker than it should be I know its the virus just trying to get there enjoy your pruning and the sunshine Gary x

Thank you Adrian. Yes, I have been praying every night. How long have you been going through the chest pains?

my chest pain comes and goes, the longest it has stayed was about 2 days but it has been less consistent ever since i started doing the breathing exercises and going for long walks outside, dont worry rufio we"ll be out of this soon

Hi Lulu... Just want to mention that I've had tinnitus too. For me it has been present the entire time. 10-12 weeks (not sure) Seems to be a symptom not discussed as often as others. My symptoms kept changing and relapsed several times. I feel fortunate that I never had any serious lung issues, headache, phlegm, body pains, racing heart and fatigue like so many others here. But I did have repeated severe anxiety, dry mouth, weird dreams, difficulty falling asleep, short nights, dizziness, brain-fog (like you - especially in the mornings) unsteady walk, numbness and tingling in hands, warm and cold sensations in the body, (Cool breeze brushing across my legs) I also developed difficulty swallowing for a couple of weeks. Couldn't swallow my own saliva, but food and drink was no problem. Weird. ... But the anxiety was the worst! It would come and go as if it had a life of it's own.... I'm now approaching the magical 12-week point and the disease has been a lot less relapsy, duration between attacks are at least 1 week apart now, and intensity of the attacks have lessened considerably... The tinnitus is definitely linked to the attacks. It gets louder when the attack approaches... As I said, I feel fortunate that my symptoms weren't as severe as most here on this forum, but alarming nonetheless. The not knowing coupled with anxiety as a primary symptom makes this thing very difficult to deal with. Also the persistent, relapsy, and constantly changing weird symptoms frighten all of us.... Hope you continue to recover well Lulu. (As well as everybody else).

...Forgot to mention a couple more symptoms... I also experienced arthritis-like joint pains especially in the hands, and strange little pains coming and going throughout the body. A couple nights of acid heartburn, mild nausea, and mild sore throat behind the nose. But again most of my symptoms were on the lighter side, but they were definitely related to Covid and would appear and disappear rather quickly.

Interesting about the tinnitus - I notice it mostly in the evenings when I am sitting quietly - I have also had quite a bit of popping in ears so probably all related to respiratory issues. Sounds like you have had the full mix of symptoms - mine have mainly been throat and respiratory - let's all hope the magic number is 12! I am a lot better than I was but still have lung/breathing issues but get my results from CT scan and blood tests tomorrow. I am obviously worried as I know things are not right but just praying that whatever is going on is temporary and will slowly improve.

Glad the relapses are less intense and less frequent that is reassuring for us all.

All the best,

Lx

Thanks Lulu, yes, things are finally looking up. But I say that cautiously as this thing has a way of crushing our hopes of recovery through unexpected relapse. I've learned over the course of this illness NEVER to assume that it's done with you! Although, as I've said, it does seem to be improving over time. - A lot of time.

About your blood tests and CT scan: When I first acquired Covid-19 I went my GP for a standard blood test. And of course the results came back normal. That was about 3 weeks in... Then around week 6-7 I had particularly bad night and decided to go to the dreaded ER where they did a couple more blood tests, a heart test, and a CT scan. Again everything came back normal. And of course the doctor began hinting to me that it was just anxiety. I had to endure a speech about "These are stressful times, etc..." - Uhh.

So it seems that in my case, and in many other cases here, the doctors just aren't finding anything wrong! Which is frustrating but good news in a way. It seems to indicate that what we are experiencing is an atypical response to a virus that doesn't appear (for now) to be causing any permanent damage. The lifespan of this disease appears to be somewhere between 3-4 months judging by those on this forum, but of course the real numbers will need to be revealed in time.

I think what makes this experience so difficult for many of us is that we are not used to dealing with a virus for so long. So we've set our expectation for recovery too low. I think we might benefit from expanding our concept of "how long this should take" to include a rough estimate of 3-4 months. Maybe then we might mitigate our anxiety and stop adding to the anxiety that this disease is already creating in the body.

I think you are right, because I didn't go to hospital I listened to the Gov/NHS guidelines for a mild/moderate case and expected to be sick for no more 2/3 weeks - they state severe cases who have been in ICU recover in six weeks!!! Had we been told the truth and expected 3/4 months recovery time, with many relapses, it would saved us all a lot of anxiety. Ok we would still be worried but if we were being told a long recovery period was "normal" it would have been reassuring.

It was for this very reason that Res started this thread - because couldn't understand why hadn't recovered after 4 weeks - yet alone 4 months!!