Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@Beautifulpeople I haven't been referred to a rehab centre either, I think it's really early days still.
If you scroll down to the videos posted by @LetsBeSensible yesterday or day before they are good, the aim of rehabilitation is to reduce symptoms first .
Are you working / physically active?
Do you notice symptoms reduce when you rest more?
Is there an impact on your symptoms from stress and worry about your health?
Maybe you can talk to a different gp at your practice.
It is good that you have been referred for the xrays and tests.

@Frankiemintz my tummy is huge since having symptoms in early March. Now diagnosed with gallstones and have a hospital appointment later this month to see if I’ll have surgery. Not sure it is causing the bloating. It does get worse through the day and especially after eating. I get sore under the ribs because of the pressure, a bit like in late pregnancy. The GP thinks it’s causing the heartburn/reflux too.

My asthma is worse too. I take Fostair 200, two puffs twice a day and still need ventolin a few times a day, particularly if exercising, even walking. I sometimes get the burning/menthol/raw sensation in the windpipe but much lighter than in March. My ten yr old is coughing recently in asthma type way, was previously too mild for a steroid inhaler. She got one prescribed post symptoms so I’m encouraging her to take it more often. But she’s otherwise fine.

Periods still loopy, more frequent than usual with cycles of 11 days, last one 23 days while on U.K. holiday, wasn’t impressed. Hair failing out but that was happening already, probably stress related.

I’m not as bad as most, which is why I haven’t posted much. It’s so tough having no answers. I really hope the ongoing lung issues isn’t a sign of long term damage.

I need to do yoga too - any suggestions? I’m studying at the moment and making my neck and back very sore.

@Beautifulpeople sorry you’ve been struggling so long and haven’t been taken seriously. Maybe You could try calling 111 and asking for advice / help? They might be able to request a 111 Dr to phone you, so you can explain the situation and the problems you face. I think 111 Drs can write notes on your medical record and instruct you to visit hospitals(?).

@TiddleTaddleTat do you know if the idea is to reduce every single symptom by 100% before building up movement / exercise? Does symptoms include things like calf and back ache?

@MillStone yes I think so. In the videos posted below it talks about first establishing a baseline - where no symptoms are present - before very very gradually increasing activity and waiting 2-3 days between each increase to allow you to build up conditioning.

It is coming at it from a fatigue angle, which for me is my most debilitating symptom, but when I did strip back my activities to my baseline I noticed all of my symptoms (including fatigue) reduced significantly. It lasted about 2 weeks. Then I increased activity too quickly (walked slightly up hill, 5 minutes) and that was too much and caused a bed-bound relapse of 4 days so far. So the increases need to be very small, like 10% at a time, and the aim is to eliminate symptoms.
If symptoms appear, it indicates that there is too much exertion. That was my interpretation of the video in any case.

@TiddleTaddleTat
Thank u for reply
Prior covid I was fit and healthy.no Heath issue. My symptoms is on and off. I am only working couple of hours, so dont think it's work.i am usually quite active fit and slim.but I am taking easy at the moment and going with flow. If im tired,I take rest so no it's not bcz of overwork. I noticed that it's come back no matter how healthy you eat,drink or rest. Looks like this is all damage done inside bcz of virus. Fed off this merry go round.
Request to some one who recoverd after all this 4or 5months relapse and now fully recovered please post here so we can see some light and be positive

@TiddleTaddleTat thanks for the detailed reply. I misunderstood and thought baseline was avoiding ‘bust’, I didn’t realise the aim was to avoid all symptoms — just avoiding bust!

Even though I’m now capable of doing more, I am still suffering with various symptoms for most of the day and it’s not pleasant at all.

Sounds like I need to reign it back, but to where!? My heart has been pounding like a drum for the past 5 months no matter what I do. Same with the reflux and to some extent the back and calf muscle pain.

I had my letter from the CFS yesterday. I need to phone tomorrow to make an appointment for an initial assessment.

I think you said you had been referred too. Any news yet?

@MillStone the idea is that once your symptoms reduce (including fatigue) you continue to rest to 'bank' energy. We all overestimate what we can achieve once we start to feel a little better and so do much more than we can safely do. I really recommend the videos , they went into some depth and also openly challenge the idea of graded exercise therapy for CfS.
No I haven't been referred (yet). I'd really like to speak to a physio specialising in fatigue but haven't found one yet.

@Whatnext2018 How are your eyes? Mine still very sore. Did you find anything to help?
@Andslee @BeautifulPark. Burning skin quite commonly reported. What part of body does it effect?
It's my main and most painful symptom, since recent relapse seems to affect all body.
Can identify with discussions regarding anxiety.
I think it's big issue.

Take care everyone. Thanks for your encouragement.

@BeautifulPark Mostly my hands, and the back of my neck later in the afternoon. I'm sensitive to heat.

@BeautifulPark I started taking ibuprofin for it a couple of days ago. Seems to help. Convinced it's autoimmune.

@TiddleTaddleTat thanks I did watch the videos the other day and I just rewatched 3-5.

I hope we can all get some individual guidance from experts soon.

@MillStone yes absolutely individual guidance is what I'm crying out for . Don't have the funds to see a physio privately, I'm hoping to get a referral from gp this week

@MillStone
Thanks for your advice
I rang 111 for my burning upper back and joint pain
They said dr will ring me back
Please everyone keep posting your update so we can learn from each other
Is anyone already fully recovered after all this long period please post here so we can be positive

Dr just rang me. First she told me to go and do covid test,after 10 min explaining everything three time and telling all my symptoms,she just said we can't do anything.take paracetamol and go to your Gp.
No help at all.

Ah @Beautifulpeople I’m so sorry. I think call your GP again and persist - have you tried asking for the same GP more than once? I went through two others before I found one who ‘got it’ and I’ve stuck with her. What worked for me was calling several times about the same issue (joint and nerve pains) and stressing that it was impacting my daily life for a long time.

Wishing you loads of luck and please do be hopeful. A good friend recovered from both glandular fever and a few years later a very serious head injury and said in her view hope is extremely powerful- even if it it is just hope that a bit of the day will be ok. Then the sun starts to come out a bit more sometimes (metaphorically). She also said to view progress over weeks and months rather than days which I have found helpful.

Morning everyone - how are you all today?

It was my 5 month anniversary of symptom-onset on Saturday (hardly something I feel like commemorating!) but this is where I now am if it's useful to others:

• GI symptoms - still running to the loo 2-3 times every morning. Taking electrolytes to manage this.

• Sore throat and swollen glands - kicks in early afternoon after I've been active (or earlier depending on what I've been doing). Need to lie down on and off from 4-8pm typically but obv difficult to do with small DCs! I've just started taking Omeprazole as an experiment to see if it helps. After a week, it does seem to a bit... but now I'm worried having read all of your GERD posts about the nasty side effects!

Have any of you had good results with just taking Gaviscon instead?

• Joint pain - swollen joints in hands and pain in my shoulders seems to start each month now about 10 days before my period and continues until day 8 of my cycle. It's not too bad the rest of the time.

• Headaches also worsen with the same cycle, not too bad the rest of the time.

• Fatigue - lasts all day, and this really is my worst symptom I wake up every day feeling like I've not slept, it takes about 2 hours to feel 'normal' then from around lunchtime onward I am knackered again... this is really what makes me feel most depressed. As does the brain fog which goes with it.

What helps the depression and fatigue is gentle yoga and cold showers (thanks SO much @fedupofbed for this tip!)

Despite all the above, there is still slow slow progress (I think). I have to keep reminding myself that from late May-July I basically wasn't able to leave the house. I spent most of the day lying down. Now I am leaving the house, even just for very small easy tasks, every single day and that is HUGE progress, even if most of the time it doesn't feel like it... I still however, don't feel ready to return to work, which is a worry.

I'm now looking forward (got to find that optimism somewhere!) to my 6 month mark. From looking at the posts on the Facebook Longhaulers group, there are a few who are noticing strong recovery around 6 months. Fingers crossed for all of us.

I also finally have some appointments lined up with ENT (next week), Rheumatology and Neurology consultants. My GP has been really brilliant and I'm so grateful for that. Curious to see what their take will be on my positive autoimmune blood test and ongoing symptoms, I'll post here after each appointment if it's helpful.

Thanks to everyone for keeping this thread going. I don't post often but I read everyday and it is such a massive help. xxx

@Whatapickle78 Thanks for this, please do update!

Week 21 for me. This week I find out how my 24 hour ECG went, and have been called in for a bloods panel on Thursday. Will be really interesting to see what they test for - ANA is a definite. There was mention of an antibody test too...

I definitely felt a difference with my period this month (a mild turn for the worse) - although manageable. This was accompanied by the dreaded burning of skin thing, though less intense and for a shorter period.

So, my symptoms remain:

• The "breathing through dust" thing, which I thought might be thrush. I am now leaning more towards the Consultant's idea of "Inducive Laryngeal Obstruction". Makes sense with the silent acid reflux... Back on Omeprazole as instructed. It definitely makes me feel "dryer" in my throat. I think it is helping...

Still with the burning skin - intensified by my period. I have started taking Ibuprofin for this, seems to help a little. I think I said before, I am definitely more sensitive to heat, and my hands swell like balloons if I am out walking in the warmth. My skin is really tight and shiny on my hands at times too.

The pain in my lower back seems to be lessening, and so is the pain under arms (which the Consultant thought was muscular, and to do with the "breathing pattern disorder" I seem to have developed). She had a good poke around there and said she couldn't feel any swollen glands. So...

To sum up remaining symptoms:

• burning skin
• "breathing through dust" sensation in throat

That's about it...

I had read that the 6 month mark seems to be a significant milestone for recovery. I had also read 3 months before too, however, I definitely feel better than 3 months ago.

Hope you're all doing OK. Will let you know what bloods they take on Thurs...

xxx

Hi @BeautifulPark For now, the stingy eyes seems to have calmed a little abs replaced by a few other bits coming back again, albeit with thankfully less intensity,
Feeling hopeful to hear that 6 months could be a turning point, few weeks off that point.

At the moment, symptoms for me are still slight dizziness and the foggy head, tight chest at times, aching in calves, some aches after walks and I felt a quite down and empty yesterday,
I really want to feel 100% ‘With it’ again.

Is anyone on Omega 3 and noticed any benefit? I’ve read a few articles about the link to Covid and inflammation. I was taking Cod liver oil but switched to Omega 3 a few days ago.

I hope everyone is seeing improvement and gradually getting there, I think we all are slowly but surely 🙏

I’ve been taking Omega 3 @Whatnext2018 but have to say I haven’t noticed much difference. However, for the past few days I’ve been taking ibuprofen to see how this helps and noticed some improvement to symptons. I’m going to continue to see if it has a longer term positive effect

Good luck with your bloods on Thursday @AndsLee hope they bring a bit more clarity x

@Whatapickle78 Thank you! I am fairly confident my ECG will be fine, and that I will test positive in the ANA test, but whatever it is will be mild and transient. That's my prediction...

Someone was asking about Omega 3? I found a fair difference when I started taking that... Indeed, I have stopped taking all of the supplements every day, I stagger them, including my probiotic. The one I kept going with was the fish oil Omega 3 capsule.

Today, I have not used my very "alcoholly" hand sanitiser, and my hands are not stinging in the same way as they were last week (the sanitiser I am using today has aloe vera through it). It seems to have helped. I say this, because I think I am intolerant of alcohol. Certainly the alcohol in hand sanitiser catches the back of my throat, and there is no way I would entertain drinking any of it just now. This I believe is common with both post viral and auto immune issues. I wonder it it's partly to blame for my burning hands?

Is it wrong to be excited for a blood test? haha

Hi folks, I'm just popping in here (have followed your threads on and off since the beginning). Since some of you have gone on to develop CFS I don't know if it's been mentioned previously, but there's a good CFS forum you can browse, maybe will help? There are some Covid-related posts there, but it's a mine of information.

forums.phoenixrising.me/

I do feel for you all. I have Hashi's (autoimmune underactive thyroid) and can definitely sympathise with fatigue and just random awful symptoms. I dread contracting Covid in case it makes it so much worse.

I wish you all well and hope you will in time find your way to good health again.

I say this, because I think I am intolerant of alcohol. Certainly the alcohol in hand sanitiser catches the back of my throat, and there is no way I would entertain drinking any of it just now. This I believe is common with both post viral and auto immune issues. I wonder it it's partly to blame for my burning hands?

Can't leave without replying! I have histamine intolerance (definitely related to hypothyroidism and autoimmunity) and I do get things like burning palms of my hands after certain foods, and other things like dizziness, headaches etc. It happens several hours after eating if I'm going to react. I definitely can't tolerate alcohol now and had to give it up, or else I react. Isn't life fun?

Afternoon all.

Feeling pretty drained today. Still recovering from a relapse last Tuesday and have been trying to rest as much as possible but notice I still clocked up 1400 steps yesterday so trying to take it easier today.

Im week 22-23 and main symptoms are fatigue, aching legs and arms, brain fog, constant tinnitus, and chest pain. I get hot flushes and periods of racing heart if I push myself too much. That means trying to unload the dishwasher in one go or standing for too long e.g. making both toast and a cup of tea is still a stretch.

I'm using all my available energy on meeting mine and DD's basic needs- food preparation, cleaning and tidying (though have dropped standards significantly), and achieving basic hygiene. Aside from that I can fit in some TV time, some phone time, and a little of a light hobby each day e.g. sewing or gardening like taking cuttings. Nothing more strenuous yet.

Benefit is mostly seen from lots of serious rest - although I struggle to be completely restful during the day for more than 30 mins at a time.

I've also noticed a difference after starting to take B complex about 3 weeks ago.

I'm not expecting to be able to resume work for some months. I will lose a lot of income and we will struggle and need to borrow. I can't see an alternative right now - I am acutely aware that if I don't focus quite seriously on my recovery now my chances of a longer term condition will go up and up. When I relapse the symptoms terrify me so I am highly motivated to avoid them as much as possible.

I've read a fair bit from people with ME and when asked what they wish they had known following the original illness, they have almost universally said that they wished they had rested much more.
I was a very healthy, fit person and I'm in my 30s. I've been fortunate never to have a major health scare and so convalescence does not come naturally to me but I am trying to see the positives of slowing down and taking things at the pace I need.