Long Covid support thread

[fedupofbed]

A thread for those with ongoing Long Covid symptoms.

Some resources very kindly collated by @letsbesensible in the last thread:

UK sepsis trust vids go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video go.mumsnet.com/?xs=1&id=470X1554755&url=vimeo.com/442593497?utmcampaign=5370367&utmsource=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512 Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

@Dogatetheleftovers yes I have consistently had high bilirubin, although this may have been a Pre existing issue for me (potential Gilbert's) as I had similarly high readings during pregnancy some years ago now

I've had my blood test results back today - iron normal, which I was surprised about as my symptoms have been very typical anaemia, and got worse after my period. But my vitamin D and my thyroid levels are low, so I'll be going on medication for that. I imagine this is unrelated to having COVID, but maybe adding COVID to all this is why I've felt so bad for a number of weeks now (I know it's not long compared to most here, but certainly longer than the 10-14 days many people are experiencing.

On another news I'm going back to work next week. Just doing 3 half days for the first couple of weeks, then picking it up. I am looking forward to having structure and seeing other people!

@Fiadh79 what was your ferritin number? Get hold of a transcript so you have all your numbers.
Several GPs I saw said my results were normal despite having ferritin of 14 and 20 and significantly low haemoglobin concentration. I only knew this because I requested my results by email.

Thanks @TiddleTaddleTat I have been taking a multivitamin, containing iron, which I'm going to stop. And I'm also going to arrange my next blood test for just after a period. I figure then any iron deficiency will be flagged up! And I will ask for a transcript of my results, now you've suggested that.

@Fiadh79 wait to see your transcript before stopping any iron supplements!
Sorry it's a bugbear of mine now...
I stopped taking additional iron when deficiency wasn't flagged up... turns up the supplements were keeping the deficiency borderline rather than full blown... cue months more symptoms and plummeting ferritin. There's lots of misinformation about iron out there.

@TiddleTaddleTat good point! I will keep taking them till my next appointment when I can discuss it properly. It's quite difficult having this sort of conversation in the phone!

@Fiadh79 my Thyroid is low after Covid. I am now on meds. Although not sure if this is separate to Covid. I didn't have any Thyroid symptoms.

[quote Kitcat122]@Fiadh79 my Thyroid is low after Covid. I am now on meds. Although not sure if this is separate to Covid. I didn't have any Thyroid symptoms.[/quote]
Yeah, same for me. Though I've been tired and depressed for years! I'm interested to see if things will be different in a few months.

I wonder if I can ask a bit of a sensitive question? It's 6 weeks since I became ill (I know for a lot of you it has been way longer) and I am doing quite a lot better. Though the last few days have highlighted how doing too much will really take it out of me.

Anyhow I tried to have sex with my wife this morning, but I just came over all nauseous and generally unwell. I wonder if anyone has any experience they are willing to share? It was really disappointing and I was really upset. (In case anyone is wondering, my wife was amazing about it - I'm very lucky.)

@Fiadh79 sorry you’re still feeling unwell.

The advice is to pace your mental and physical energy usage. People suffering with ME CFS have been utilising these techniques for a long time and a lot of the wisdom most likely comes from them.

This following PDF is the generic one that Drs seem to mention! There are lots of other guides, videos and even apps.

www.yourcovidrecovery.nhs.uk/your-road-to-recovery/managing-daily-activities/

Hope you start feeling better soon.

Is it common to get good days and then bad days where you’re so exhausted?

It’s almost a year since I was first unwell and I’m still getting random things happen including palpitations, reflux, cramp, red eye and fatigue. I feel as unwell this week as ever. Does anyone else wonder if they are ever going to get fully better?

@movinggoalposts

Yes that's me too. It's really crap, isn't it??

I've been unwell for nearly a year too. Just recently I've developed a very bad cough again, with thick phlegm, sore, blocked chest and breathlessness. I've been prescribed antibiotics by the GP, as it looks like bronchitis, and my DD1 (11) had a bad cold recently.

So it could be that. But I've been there before, far too many times. I get bad cough, GP prescribes antibiotics. It hasn't helped before, but we'll see. If it doesn't clear up, I'll be referred for yet another chest X-ray. Which probably won't provide any answers once again.

This cough is the same one I've had for months, on and off, with thick phlegm choking me. I'm suspecting it's another flare-up, though it's worse than it's been for a while. I don't have a temperature. I haven't had one since the summer thankfully. So there have been some improvements.

I'm sounding very discouraged, I know.

@Dogatetheleftovers

Is it common to get good days and then bad days where you’re so exhausted?

Certainly was for me. Sometimes I wouldnt particularly notice[weeks went into months with it all] but people around me would say " you are having a bad day today aren't you] and I would then realise I was. For no reason we could point to.

@movinggoalposts

It’s almost a year since I was first unwell and I’m still getting random things happen including palpitations, reflux, cramp, red eye and fatigue. I feel as unwell this week as ever. Does anyone else wonder if they are ever going to get fully better?

Thankfully for me, I had covid last March, and the random stuff lasted until mid October. After that, I waited for the next stupid new symptom to arrive, but it never came. Some of the symptoms I had were blood related, amongst other things. The fatigue was unreal. I have felt tired for the past few weeks, but so do lots of people this time of year. But I did think and feel, that by mid Jan I no longer have long covid. I am just not quite so sure as I was.

I too have some sort of throaty mucus thing that others may be talking about here. But it is minor for me, and not sure it is covid related in my case?

Just popping in to say hello. I'm nearly 11 months on now. Feel sad that my life has changed because of Covid but just trying the various treatments. Currently having respiratory physio - apparently I have a breathing pattern disorder (mouth breather rather than nose breather). One week in but hasn't made a lot of difference so far. Still feel like I'm wearing a tight corset. Also have a one week course of prednisolone but a bit reluctant to start steroids tbh.

Glad to hear treatments are working for some.

Hi, how is everyone? @Lightsabre and @isitorisntit I'm sorry you're both still here after so long.

My symptoms here remain the same but just updating on my news re trying to get access to a Long Covid clinic. This is still in its infancy where I live, and I just kept getting appointments cancelled and pushed back... and the appointments were with Respiratory rather than anything cohesive. Anyway I wrote to my MP last week and I've just received a phone consultation out of the blue from a doctor... I'm now officially on the system at last!

In all honesty I'm not sure how much help this will be for me as I'm really lucky that DH has health insurance through work which I've used to the full this last year - so I don't need scans, tests, etc. But it's good to finally get acknowledgement. I'm being referred for breathing physiotherapy, and also they're going to liaise with the local ME CFS service on my behalf, so that I can get some support for the fatigue.

So the message from this for anyone struggling to get the medical care they need is to write to their MP - it really worked for me. Love and healing to everyone.

I wonder if anyone could offer some advice?! I go from feeling like my throat is super dry (breathing through sawdust) or as if there's fluid when I breathe? Anyone else found this? I spoke to a lovely nurse today at asthma UK and she gave me some tips to try and distinguish if its covid or asthma and said to try and get a referral for a long covid clinic

Sorry no one answered you @amyj606. I didnt because I didnt get that. Looks like perhaps no one else on here has either?

Do you now think it is covid? Let us know how you get on with your referral.
I dont know if anyone on here has been referred. I got covid nearly 1 year ago, so long covid wasnt even a thing back then.

@lightand No worries at all. I spoke to asthma UK Friday and they were really helpful. They said its more than likely covid related said to record my PF and if its really variable it'll be asthma. They said to ask ask a referral for the chest issues and joint stuff

@amyj606 breathing through dust has been reported by some covid long haulers, some have said antihistamines or low histamine diets have helped resolve.

I wouldn't describe line as breathing through dust, but I get a thickly throat and (less frequently after 11months) feel like my chest is constricted and I can't breathe to the bottom of my lungs. In the early days I did have a fluid sensation too. For me, time as well as low histamine has helped make things better.

Hope you find a way to improve symptoms soon.

Hi, how is everyone? Still Groundhog Day in terms of symptoms here. My latest bloods have come back all in range, but definitely on the low side for vit D and ferritin, despite taking supplements, so I'll be upping them.

My big news though is that I have my Covid vaccination booked for this Friday 😬. I'm slightly terrified about side effects but Gaz Medinger's new film is very encouraging.

Has anyone else had it yet?

Hi @fedupofbed thanks for posting that video - it is very encouraging news and has given me a lift tonight.

Sorry to hear you’re struggling with vit d and ferritin levels. Not sure what your vit d level is or how much you’ve been taking - I found the Vitamin D council website helpful when I first had low blood result. I took 4000iu loading dose for three months which brought up my level very well. I used the sublingual spray for better absorption. Then halved to 2000iu maintenance dose. My level has dropped from where it was but remains optimal so I’m going to carry on with that. I might reduce to 1000 in summer. I also take Vitamin k2 as MK7 and magnesium as I was told these are important to take with vit D. Sorry if I’m telling you what you probably already know!!

Ferritin is one I’m still struggling with - my level in Dec was 20 and GP suggested supplement. Nutritionist prescribed floravital which I took for 4 weeks. I then stopped prior to thyroid blood draw as ingredients could skew results. Taking this seems to have nearly doubled my level to 39 which is great news but I’m conscious that my haemoglobin, haemocrit levels and transferrin saturation are all top of range. I’m conscious of iron overload and don’t know how likely this is (I have heavy periods). I’m supposed to be carrying on with the Floravital twice a day but have halved dose and checking with nutritionist again. It’s a complete minefield and I gather raising ferritin without actual anaemia can be difficult. I now believe the low ferritin to have been the cause of my tingling extremities as this has stopped! Which is a huge relief after over a year. I hope you manage to get your levels improved - I’ve been told optimal is around 80.

Other updates from me - thyroid panel finally done. Results all in range bar FT3 which was slightly out of range (high) suggesting slightly hyperthyroid (I think). TPO antibodies remain out of range but have come down which I’m pleased about. The hyperthyroid state rings true to some of my recent symptoms - palpitations, increased anxiety. Nothing out of range enough to prompt any treatment though and I don’t think it’s worth paying to see endocrinologist again at this stage. I still strongly suspect I’m at the outset of Hashimotos.

Stool profile results back - no sign of infection or parasites which is good news but I’m the very highest level for dysbiosis and heading into inflammatory. Nutritionist has prescribed a wealth of supplements to aid gut healing. I’m having to introduce everything at snails pace as my body feels sensitive and over reactive to everything at the moment. Diet wise I feel I’m failing as I lack the energy to cook.

Since latest relapse in Jan I’m still nowhere near back to baseline. Newest symptom is random pinching feeling in arms and legs - mainly right leg. Struggling with PEM and fatigue massively again. Not getting out for walks like I was before Jan. SOB persists - I’ve tried to speak to GP today as this wasn’t previously a predominant symptom of mine. Offered a phone call but not until next week.

Really didn’t mean to do such a mega post!! Hope everyone else is as well as they can be.

@givemeanother Thanks! I saw the histamine posts on this post and have introduced a antihistamine into the mix, vit d and first defence. I've got my phone appointment tomorrow to go over my bloods so I can mention my niggles - joint pain, weird chest things. The agency I work for have been in touch about work (education) but I don't know if I'd manage back full time. They've been pretty poor really. They made the decision to furlough some staff but not all and I can't help but think its because I wasn't working

@Bambini83 so sorry you're still having such a ride. You're right, the whole ferritin things is a bit of a minefield - and I'm not clued up at all with regards to the relationship with haemoglobin, etc, so thanks for filling me in a bit. My ferritin is 22 and I've been taking Spatone but a bit intermittently (ie keep forgetting) so will up to twice a day for a while. My vitamin D is 76 which is just in range, despite already taking a high dose supplement. I've now switched to Biocare emulsion drops (recommended by Dr Peers).

@amyj606 I hope the antihistamines help - lots of people have reported great success with these. Hope your appointment goes well tomorrow too.