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

@longshot

Thank you for tagging me *@Whatnext2018*. I am sorry I haven't been on here in many months!!

I am 10 months into the Long Covid journey now....I would love to tell you all I am 100% better but sadly not however I am MUCH improved. Basic timeline is like this:

1-3 months - horrendous, acute illness, never had a day feeling moderately OK, a few hospital trips. Main issues heart related, headaches, exhaustion, SOB
3-6 months - A little better if I did nothing at all, myocarditis/heart inflammation showed up on MRI (but looked to be resolving).
6-9 months - Improved a lot, able to take daily short walks, look after children, cook, do lots of normal ish stuff.
9-10.5 months - I would say now that most days I feel 80%-90% ok / fine and if I pace myself all the time I can live a normal ish life. I couldn't commute to work or do anything like go for a run but I am coping with homeschooling 2 children alone, cooking, housework all mostly OK. I have the odd day when I feel awful (especially around my period) if I over-do it but overall not so bad. I can handle a lot more screen time and could work (from home) but have chosen not to with my children being home. I am basically left dealing with fatigue and intolerance to exercise with the exception of walking (manage 2 miles now) or yoga.

It's all been pretty shit but overall the trajectory is upwards and I look back now and realise just how ill I was.

I have worked very hard of stabilising my nervous system. I do loads of meditation and breath work which has helped hugely. I now have to just be very careful not to do too much, take regular rest breaks and be super careful around my period which seems an extra strain on my body. I also eat a low ish histamine diet and do the 'niacin stack' vitamin regime. I don't have any alcohol or Caffeine although I did have some champers at Christmas and tolerated it ok!

For those that remember my 8 year old also had long covid. She was ill for 7.5 months and then much much better. She's 95% now most days but still has a little chest pain on exertion.

Sending positivity to you all. This has been / continues to be one hell of a journey but I am confident I will fully recover eventually IF I can avoid catching it again!!!

Thanks for that. It's really helpful and glad you are improving. Can I ask, did you have an ecg and echo and did they show anything x

@VetTraineee I did have an ecg which showed ectopic beats but they said it’s nothing to worry about. That was on the NHS. I was also offered a stress echo on the NHS in august but I chose to wait for the MRI on part of a study I was on (so that was free of charge) as the NHS wouldn’t offer it. The MRI showed up inflammation in several chambers in the heart. The Dr leading the study said it was most likely it had been myocarditis but was resolving, the scan was 5 months on from my worst symptoms you see. I’m rescanned in March and hopeful it will have gone! I still get slight twinges but mostly all gone now with the heart. However I hardly exert myself so I’m not sure what would happen if I did. My heart has been up to 130-40 on a walk and I was ok after. I’m 38 for reference and had no heart issue before.

@Dogatetheleftovers

Did anyone feel really shaky and/or dizzy when doing even simple tasks like make a snack? I’ve had both over recent days.

Yes, this is exactly how I felt for weeks. Even turning over in bed would leave me like this sometimes. It is awful, and it stopped me doing anything at all. How long have you been ill? It is 5 weeks for me, and I'm very lucky (compared to the others on this conversation) I am beginning to feel a lot better.

@CuckooSings

Feel a bit of a fraud posting here as I've only been ill for 7 weeks but really looking for a bit of support. I miss being able to breathe comfortably or wake up with energy or do simple things. The pain in my fingers is so bad now I can't even grip a jar to open it. Just sick of being tired, aching and getting breathlessness doing small things. I was back at work this week just two hours a day and I have had to spend all day in bed just to be able to function. Covid 19 sucks. The scary bit for me is the attacks where I can't get air in or out of my lungs for a couple of minutes. My GP told me off for ringing too soon as its not long Covid till 8 weeks and even then there is nothing they can do. Just pants basically.

For me it's 5 weeks since I became symptomatic with COVID. It's obviously not as long as many people here, but once I got past about 3 weeks it began to be quite scary. And it's horrible, this is the worst I've ever been in my life. I'm sorry you're not well, and that your doctor hasn't been helpful.

Some places I've read say it's long COVID at 4 weeks, but it's very unclear.

Have you gone back to work too soon? It doesn't sound like you're well enough, and I've been told by everyone not to force it. Also can you try and get an appointment with a different doctor at the practice? Or maybe call 111? I'm not sure, but if you can't breathe that's not good.

[quote longshot]@VetTraineee I did have an ecg which showed ectopic beats but they said it’s nothing to worry about. That was on the NHS. I was also offered a stress echo on the NHS in august but I chose to wait for the MRI on part of a study I was on (so that was free of charge) as the NHS wouldn’t offer it. The MRI showed up inflammation in several chambers in the heart. The Dr leading the study said it was most likely it had been myocarditis but was resolving, the scan was 5 months on from my worst symptoms you see. I’m rescanned in March and hopeful it will have gone! I still get slight twinges but mostly all gone now with the heart. However I hardly exert myself so I’m not sure what would happen if I did. My heart has been up to 130-40 on a walk and I was ok after. I’m 38 for reference and had no heart issue before.[/quote]

This sounds like me and I am a similar age. I had abnormal ecg but normal echo. Now I'm waiting for an MRI scan. Please keep us updated regarding mri scan in March, hope all is okay

Hi everyone,

I've not posted for a while because it's all a bit groundhog for me at the moment. I can see more new people joining the forum, which is sad, but I hope it provides you with the support and comfort that it has given me over the months.

Quick summary - got ill end of February (so nearly a year!). Never felt so ill in my life, felt like flu at first with 40+ temperatures. The high temperature burned out after a few weeks but then I had months and months of other awful symptoms (high heart rate, palpitations, gastro problems, SOB, GERD to name a few). I'm now left mainly with extreme fatigue and PoTS symptoms. I'm working a couple of hours a day from home but can't walk for more than a few minutes.

@MillStone and @Crayfishforyou thank you for the SSRI feedback. I finally started Sertraline and it's really helped - not with the physical symptoms but my brain feels less foggy, and I feel sort of mentally lighter. It's helping me cope with everything better.

I'm also reporting back on my appointment with Dr Peers today - tagging in our histamine experts @TiddleTaddleTat and @AndsLee (hope you're both still improving?).

None of the measures I've already taken to lower histamine levels have had any effect on my ongoing symptoms, but she wants me to tackle it more aggressively and up the meds. I'm currently taking 2 loratidine a day, so she's suggested trying cetirizine instead. She's prescribing another mast cell stabiliser (something I've never heard of and whose name I can't remember!). She's suggesting I start the LDN (that was prescribed for me by another specialist but I've not tried yet). She also says that at the end of the month a new version of famotidine will be widely available (the equivalent of Pepcid in the States. This would be a great alternative for anyone currently on omeprazole for reflux) so she will prescribe me that as well.

Finally she really emphasised the importance of vitamin D, vitamin C and also iron. I'm having more blood tests to check levels of everything.

Sorry this has become a bit of an essay - tried to put in as much info as possible. Love and healing to everyone.

Hi @fedupofbed thanks for your update and I hope you’re okay. So pleased the SSRIs are working out and you’ve had a positive appointment with Dr P (that’s exciting news). Fingers crossed your new plan brings change🤞

Chugging along here and managing a short walk each day, a little yoga and working part time from home. I have to have strict breaks and rests throughout or otherwise the breathlessness, heart palps and back/calf ache, tinnitus etc quickly remind me to slooow down. That said I’m seeing some stability and good progress lately.

Hope everyone else is okay 🙂

Ps. Something of interest, the NHS are setting up a new Covid rehabilitation pathway — this is different to the LC clinics. My trust has just opened and my GP has referred me. I believe the service offers a range of therapies. If anyone’s interested it might be worth a call to your surgery.

@fedupofbed that’s how the sertraline made me feel too. I’m glad you’re also benefiting from it. I was advised to stay on it for six months after I feel totally well and not come off it in the winter.

Hi I finally found you all
Due to work load I have not posted for a while . Pleased to hear that some of you are improving if slowly . For those of you joining I am so sorry that you are having to go through this but these threads were invaluable to me back last Mach when I was very ill.
So for the update I am managing to work full time but still get very tired and I have found my concentration is not what it used to be. One strange symptom I have from the early days is that when I wake my eyes take a long time to focus even with my glasses on Yet an hour later i can read things normally. I still get the cough and sore throat especially when I am tired but doctors say my lungs are clear. I have really good days and days when I am so tired I want to stay in bed for no rhyme or reason. If I shout I get breathless and start coughing for a while after. However in comparison to how I felt I am on the mend and feel lucky as a close neighbour the same age as me and much fitter died of covid at home 3 weeks ago and another colleague has been ill since christmas and is in the early stages of recovery as we were back in the Spring of 2020, Husband who had covid about the same time ad me has the same tiredness and good and bad days, His lingering problem is sinus conditions that does not respond to antibiotics plus what he feels like is mucus in his adams apple that he needs to cough up He also feels breathless still in the evening,
I know this is a long haul but I know we are getting better if slowly and we were the ones who had no help at all when this was just starting so really are the guinea pigs. Wishing you all a good evening and hoping you all feel better

Hi everyone. I am sad to see new people joining and hope that there is some help that us long(er) haulers can offer in terms of treatment . I became ill in mid March and had a mild-moderate case of Covid for about 2 weeks. Seemed to improve then deteriorated significantly in May to the point I had to stop working (from home) and delegate most household tasks, staying in bed most of the time. From May to October I plateaued with generally poor health - significant and debilitating fatigue, dizziness on standing, earache, tinnitus, terrible insomnia, and muscle aches. These would be consistently bad with times I would relapse, usually after very minor exertion such as walking to the end of the road (less than 2 mins) or staying on a call to a family member for more than 10-15 mins.
I began seeing a naturopath / nutritional therapist in Sept who put me on a lot of supplements and recommended regular eating including a snack before bed with protein and tried to help me prioritise food preparation as a key remedy for the fatigue as this seemed to be a problem. She looked through all my GP ordered blood tests and determined several deficiencies including a clear iron deficiency (ferritin was 14 in May), B12, folate and likely zinc.
I improved by Nov but noticed I was seeing symptoms increase after eating plus I started consistently waking at 3am with terrible palpitations and anxiety.
In late Nov I came across MCAS and Dr Tina Peers' work and started to put the puzzle pieces together - while I Had been improving with the naturopath's advice about regular food, I had introduced many seemingly 'healthy' but actually high histamine foods such as kimchi, kefir, and boiled eggs that I'd cooked in batches and kept in the fridge for days (this raising histamine).
I was diagnosed with PoTS at this point by the syncope cardiology team.
I had blood tests around this time and found my ferritin had gone up to 35.
I went on a low histamine diet and started 2 loratidine daily. After a week or so I saw significant improvement in the fatigue, I felt amazing.
Then I came across the NAD+ theory of long covid through a Medium article and then Gez Medingers videos and started supplementing with 150-300mg nicotinic acid daily. The improvement was significant and quite sudden.

So now in early Feb 21 I'm still where I was in early Dec, stable as long as I stick to quite a strict diet and medication/supplement regime.
Lately I had a serum iron blood test (keep getting these repeated as the GP thinks there have been anomalous results) and ferritin is back down now to 20. I stopped taking iron as at one stage by transferrin saturation became high , however I've learned that's normal in iron deficiency. I'm now back on a higher dose of iron as I think that could be helpful to kick the last of the symptoms, at least that's my hope.

@fedupofbed thanks for reporting back on your appointment with Dr Peers, very interesting about the new H2, keep us updated on any progress you see from increasing doses/tweaking medication. Interesting too that she mentioned iron as this has been part of my story for sure.

Take care everyone.

@TiddleTaddleTat what a great summary of your journey, I hope it will be really useful for those who have joined more recently. So good that you're stable, but yes still frustrating that you have to stick to the strict regime.

Dr Peers really emphasised the importance of iron, so I'm thinking this is a thing amongst her patients. She also said how beneficial niacin is to everyone (flush or non flush - she personally prefers non flush because you don't get the side effects).

Finally, last thing to report is that she's involved in a study investigating whether there is viral persistence in long haulers, as this is still unclear.

@Meercatmama lovely to hear from you too, and glad you are still improving, if slowly. I'm sorry about your neighbour and colleague.

@MillStone glad you're gradually progressing too. What a long journey for us all. Thanks for the tip about the rehabilitation pathway, I will check it out. So far I have had 3 Long Covid clinic appointments scheduled and then cancelled! Next date I have is for April. But I think the rehabilitation pathway may be more appropriate for me anyway as the 'Long Covid clinic' where I live is basically the respiratory department.

@fedupofbed
Thanks for asking for me, and for the feedback from Dr Peers. Glad there has been some improvement for you, albeit slow. You really have has a kicking from this thing! X

@tiddletaddletat
I am also finding benefit with following MCAS treatment. I don't take niacin, but it is included in my daily multivitamin with minerals. Iron and zinc is also included. A way back I was tested as Iron Deficient. I have no idea if this has resolved now, but in fairness I was always a little deficient anyway.

The supplements I take each day are: multivit with minerals, Vit D3, Probiotic, HCL and fish oil. I have cut back now on the DAO, and only take this if I feel like I am going to have an 'allergyish' day.

I am pretty much eating what I like now, although I have cut dairy. I feel there is a benefit. I mean cut though, not fully eliminated. I still have milk in my cereal for example.

Meds: famotidine, montilukast and aspirin every day. I take larotadine if I need it. I no longer take it daily. I will continue this for another 4 months and see.

Symptoms: very mild 'prickily burny' fizzy skin on occasion (the 'on' feeling) , which usually subsides quick. Sometimes I still feel sensitive to fabrics. Breathing through dust sensation pretty much gone, but left with dry mouth and a burnt tongue. Sometimes I get a stabby pain in my chest, fleeting though. I occasionally get the briefest sensation of air not reaching my lungs, but it is fleeting, and nothing like a few months ago with the full on SOB. Symptoms of course ramp up during period. I think I'll have a couple more very very mild cycles, and it will go. To anyone in the street, I would say I am fine - 95%.

I do sleep fine, but I still get the weird ass dreams. I wish that would go. I think this is the aftermath from having such a fright?!

@fedupofbed interesting that Dr Peers emphasised iron. I can now see looking back at my blood test results that the really significant fatigue coincided with my lowest ferritin readings. There is a lot of crossover with some iron deficiency and long covid symptoms - shortness or breath and tinnitus , for example. It also turns out that remedying an iron deficiency is far from simple and you need to take quite large doses to cause a rise in ferritin. It's another thing that the handful of GPs I've talked to about my blood results seem to have little awareness about. In fact my nutritional therapist also failed to see the significance of my iron deficiency over quite a period of time.
I wonder if COVID does something specific to ferritin stores? Another question to add to the long list of current unknowns about this horrible virus.

Re Iron - I am convinced its an absorbing issue in the gut...

@AndsLee you make a good point, the nutritional therapist said my blood results looked like low stomach acid which results in poor nutrient absorption. I wonder if this is common after a significant virus...

@tiddletaddletat
I'm fairly sure the virus wiped out my stomach acid.

I have found you all again. Sad but oddly comforting you're still here. I'm not alone. You're not alone. 11 months in (all but 4 days) and I'm off for more bloods and a second lung xray soon. What have I missed?

Hi All, good to see some old names - although wish we didn’t have to still be here.
Has anyone got phlegmy stuff stuck in their throat they need to cough out? Sorry for sounding gross. I’ve had it for a few days now and really irritating.

@Moodgie

Hi All, good to see some old names - although wish we didn’t have to still be here. Has anyone got phlegmy stuff stuck in their throat they need to cough out? Sorry for sounding gross. I’ve had it for a few days now and really irritating.

I get that it either feels like I've got mucus stuck or feels like I'm breathing through dust. Had a bit of a wobble the other day with everything.

@amyj606 I was first ill in March and still had what you describe in the summer.
This is now a new feeling and I do have actual phlegm when I cough out.

Just a quick check in from me. Sorry to hear of those still struggling. And great to hear from those doing well.

Really interested about the discussion around iron stores as low ferritin has been a consistent for me too. I’ve supplemented small amounts using Spatone previously and managed to slowly increase slightly. My nutritionist has me on Floravital now (she also talked about the gut and its involvement). I do wonder if some of my neurological symptoms are iron related as after 4 weeks on the Floravital I found my buzzing/tingling was improved and I did have more energy. I’ve been worried about iron overload as I read it can be easy to go into overload if you’re trying to increase iron stores without actual anaemia but nutritionist doesn’t seem concerned. I’ve had to come off my supplements the past couple of weeks as I’m trying to get my thyroid bloods done. Do feel the tingling starting to creep in. My mouth is cracked in the corners and tinnitus is worse.

I’m still having palpitations and SOB on exertion since my latest illness/relapse. Dizziness and lightheadedness back. If it’s no better in a week or 2 I’ll have to get in touch with GP.

Still on the lansoprazole, hoping to wean off it. My gut profile results are in - luckily I don’t have any sign of infection but my gut dysbiosis is the highest on the scale! My gut has been negatively impacted this last round. I’m now having regular diarreah and struggling with what foods I can tolerate.

I feel I’ve taken huge leaps back and my mental health is the worst it’s been. I fear I’m heading into depression and there’s no light at the end of the tunnel. Just taking it day to day.

Six weeks in and I still feel ill, I thought the main symptoms would be gone by now, I keep feeling hot and getting the throbbing headache and sinus pain that I had in the beginning, I know I was very ill for 3 weeks and that I have improved but I feel nowhere near ok. Some days my stomach is bad and I can’t eat. because I feel sick, then it’s my chest again feeling tight, then sore throat, has anyone experienced so many different continual symptoms, it’s exhausting

[quote Moodgie]@amyj606 I was first ill in March and still had what you describe in the summer.
This is now a new feeling and I do have actual phlegm when I cough out.[/quote]
Ah I'm with you! I've rung the doctors about my bloods something has shown up but nothing to worry about. Hopefully it's something that can be treated and might help with things

Has anyone had abnormal liver blood tests? I was admitted to hospital with Covid twice in January and blood tests were done but the consultant wants the liver test repeated by my GP.