Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Long Covid support thread

744 replies

fedupofbed · 21/12/2020 11:26

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

OP posts:
lightand · 22/01/2021 13:15

@ConfusedcomMum No headaches no, but I am too old for a period.

TiddleTaddleTat · 22/01/2021 21:49

Posting this recent video of tips from Gez Medinger - highly recommended.

m.youtube.com/watch?fbclid=IwAR2pSYD-waZAkihKGCVGOeVQaT0HAaCws4P47fUa5i770bAvC_C0-9amx8A&v=0EaHFuGJl78&feature=youtu.be

ConfusedcomMum · 22/01/2021 22:42

Sorry lightand I should have said for those who have peroids 🙈. Thank you so much for posting that link TiddleTaddleTat, there was another link specifically for women in the comments section of that video which I've copied below:

www.larabriden.com/histamine-intolerance-pms-pmdd/

From the info in the above article I'm guessing my PMS Covid type headaches are due to raised histamine levels so will try the tips in article to manage them. Hopefully it can help others with this particular post-covid monthly symptom.

AndsLee · 22/01/2021 23:03

@amyj606

Sorry for not getting back to you sooner! I've been setting up a local support group for Long Covid sufferers, and started a counselling diploma so I can be of more use.

Yeah, I received the diagnosis for inductive laryngeal obstruction, then was advised I would be referred on, and I am still waiting for an appointment. So, nowt was suggested. I did some diaphramic breathing though, which seemed to help.

Remaining symptoms - funny fluttery breathing through dust is still ever so slightly there. Sometimes achy joints in my back. Ever so faint burny wrists where my rash was. Ever so slight hot flushes and prickly skin sensation. However, if someone asked me on the street how am I, am I better... Wait for this. I would reply:

"yes, I am better."

amyj606 · 22/01/2021 23:31

[quote AndsLee]@amyj606

Sorry for not getting back to you sooner! I've been setting up a local support group for Long Covid sufferers, and started a counselling diploma so I can be of more use.

Yeah, I received the diagnosis for inductive laryngeal obstruction, then was advised I would be referred on, and I am still waiting for an appointment. So, nowt was suggested. I did some diaphramic breathing though, which seemed to help.

Remaining symptoms - funny fluttery breathing through dust is still ever so slightly there. Sometimes achy joints in my back. Ever so faint burny wrists where my rash was. Ever so slight hot flushes and prickly skin sensation. However, if someone asked me on the street how am I, am I better... Wait for this. I would reply:

"yes, I am better."[/quote]
No worries at all! When I mentioned it to the doctor of my throat feeling really dry or mucusy they couldn't really recommend anything just drink plenty of fluids. Its the dry breathing and flutter that is bothersome for me. My chest is tight and I have some SOB but I've got asthma and its always worse in the cold or heat. I've got bloods and an ecg booked in. Nice one setting the support group up!

AndsLee · 22/01/2021 23:46

@amyj606
It takes a while, but it will get better. At three months I hated the sensation. Hated it. Especially the sensation that my breaths were going nowhere. That has subsided now.

amyj606 · 23/01/2021 08:26

[quote AndsLee]@amyj606
It takes a while, but it will get better. At three months I hated the sensation. Hated it. Especially the sensation that my breaths were going nowhere. That has subsided now.[/quote]
Thank you! I appreciate the reply....I got really down last week just fed up with it...not just the chest and breathing issues but the joint pains both of which have taken a dip. I've had my asthma meds upped slightly but I think the majority of the issues is covid related. Thanks again!

AndsLee · 23/01/2021 09:02

@amyj606
Do you take Montalukast?

amyj606 · 23/01/2021 09:05

[quote AndsLee]@amyj606
Do you take Montalukast?[/quote]
I do I'm on fostair and montelukast...they both really seemed to help but the last week or so I've struggled a bit more but that could be my asthma as its always worse in the cold or when it's really hot. I'm going to keep an eye on things as my meds could need tweaking

ConfusedcomMum · 24/01/2021 16:42

I just wanted to update on my flare up of the covid headache and my experiment with antihistamine. So I've had the headache for the past 2 weeks, coinciding with my monthly cycle and a month after 'recovering' from Covid. I took an antihistamine yesterday afternoon and today is my first headache free day in two weeks. Completely gone! Smile

user1497873278 · 25/01/2021 09:35

Just wondered how you all feel about having the vaccine, I was really up for it before having covid but I’m still feeling not great headaches tiredness etc over 3 weeks after, how long after having covid would you want to wait to have the vaccine,. I have heard it causes more of a reaction if you have had covid.

Whatnext2018 · 25/01/2021 09:42

Hi all,

Had another histamine flare up or whatever it is last night, very scary 🥲second one since Tuesday night.
My period is very heavy and going on for 8 days now, I’m guessing this is the reason? Has anyone else had this? I notice my worst symptoms are definitely during period and sometimes ovulation, does anyone know if there’s something I can take for this? I’m really unsure what to do. I’m not on the pill as am 43 and struggled with fertility for years so felt no need.
Last night was awful, I start to become very hot with vibrating inside and the strange tingling/fizzing everywhere and then it’s just like every part of my body is ‘On’ and working overtime if that makes sense?I was exhausted but couldn’t sleep. Has anyone had it? I’m getting worried it’s damaging my body.
Feeling so alone in this at the moment, thought I was making progress but to get to 10 months and have this happening is hard, don’t know where to go from here.

LetsBeSensible · 25/01/2021 10:39

@AndsLee great to hear you’re better!
@Whatnext2018 you have my sympathy

Bit the bullet and requested referral to Long Covid. Got the dozy GP call me back going on I didn’t have a positive test/antibodies so what made me think I had covid? Was fast asleep as well so literally not awake and couldn’t think. I think he is referring me. He said heart rate up to 100bpm is fine, no 90, no 100 (all websites say 90. PersonallyI think a HR of 98 when lying down watching tv is a bit high but what would I know?)

fedupofbed · 25/01/2021 11:13

@Whatnext2018 I'm so sorry you're having a tough time, that sounds really scary and unpleasant.

I read on a link someone posted further down thread about the relationship between oestrogen production and histamines. Oestrogen produces more histamine which then produces more oestrogen in a bit of a spiral. This made sense to me as I couldn't work out why my periods came back so frequently since being ill (I'm peri). I recently started taking the progesterone only mini pill to try and balance things out but this is only based on guess work and reading other people's recommendations- I'm sorry I can't remember who suggested this otherwise I would link in. It's too early to say if this is having any effect on me, other than I've bled on and off now for about 3 weeks... which I'm not sure about either 😕 - something else to worry about!

@LetsBeSensible good to hear from you and sorry your GP is so unsupportive. Can you ask to see someone else? They are completely fobbing you off. But hopefully you've got a referral now. Mine has been indefinitely cancelled!

@user1497873278 I'm a bit unsure about the vaccination too. As I'm not a key worker, older or vulnerable though, I figure I've got plenty of time to think about it - so parking it for now.

OP posts:
Indecisive12 · 25/01/2021 11:21

@LetsBeSensible I have the same with my HR, GP says a resting HR of 95 is normal, I keep explaining it isn’t to me and my HR used to be 60-65 so I can feel the difference. My blood pressure is now high so they are monitoring that so will hopefully take it all more seriously. I’ve had an ECG (showed tachycardia) and bloods though.

@user1497873278 I’m unsure about the vaccine too, I’m scared of getting Covid again but also don’t want to set myself back by having the vaccine. I’m also currently unable to walk to get the vaccine so it’s a non-issue even though I’m NHS so eligible.

I’ve been given codeine which is helping with my joint pains, I also had joint swelling last night for the first time. I’ve stopped ibuprofen on GP’s advice due to heartburn and my asthma and it has helped my heartburn. I’ve been referred to ENT as my voice is weak and I struggle talking for long, a 7 minute phone call was enough yesterday for my voice to go. I’m 10 weeks post positive test and being referred to long Covid clinic too. Just waiting on more bloods (need to book when my voice is back) and an x-ray.

Whatnext2018 · 25/01/2021 11:43

Thank you @LetsBeSensible and @fedupofbed When it happens it’s hard for it to calm down, I took an extra histamine last night. When I’m in the moment, I get worried something dangerous can happen, do you think it can? (It also ramps up my anxiety, as is evident!)
I have an appointment with the doctor, Monday was the earliest I could get, I’m hoping it doesn’t happen again before then. I have to get this sorted now, can’t live like this, especially with a toddler to care for, so want to be fit and healthy again.

Bambini83 · 25/01/2021 11:43

I’ve been watching this thread for so long but haven’t ever posted as I’ve never really been sure Long Covid is what I have. I seem to have had a crazy amount of the symptoms those who have been suffering with Long Covid do over a similar time line but I don’t know if it’s just coincidence/crossover of post viral symptoms.

My symptoms first started in late Nov/early Dec 19 which does make me wonder if i was too early to consider Long Covid. I joined the Slack group a while back and I know there are a couple who think they were infected that long ago but not very many.

I started with a virus that was a stomach upset in essence. I never felt fully recovered and had post viral fatigue, heavy legs, back pain, abdominal discomfort/bloating and pins and needles sensations, dizziness, dry mouth, headaches. My husband and little girl had a virus with cough. My little girl had a temp and viral rash that came and went for months. I didn’t really get anywhere with the GP or diagnosis. My husband had fatigue, sore legs, tight chest on and off for months. Then March we got another virus - this time I had really sore throat, headache, extreme muscle pains and chills but no fever. Husband had the same virus. I carried on with an array of symptoms that no one could explain and seemed to come and go in terms of severity. In May I had a frightening episode with blurring in my left eye and was sent to A&E with tachycardia. This was deemed to be anxiety. At that stage I was referred to a neurologist for my neurological symptoms but I’m still waiting to be seen. In June I identified a lump in my neck - ultrasound identified two thyroid nodules. Cytology was normal. NHS blood testing showed normal thyroid function and they dismissed any of my symptoms as thyroid related. I took matters into my own hands and have been having private blood draws for full thyroid panel - I have elevated TPO antibodies. Paid to see a private endocrinologist who suggested start of autoimmune thyroid disease a possibility, also suggested ME. I had the blood test to rule out Graves Disease and personally think I’m at the outset of Hashimotos. Had low vitamin D which is resolved and low ferritin which I’m still working on. I have early stage (stage 1) HPA axis dysfunction/adrenal fatigue - did private salivary test.

Symptoms have been so varied and strange at times I couldn’t list them all!! Have included fizzing/buzzing sensations, tingling and cold extremeties, menthol taste in mouth, heart palpitations, tight chest, SOB, feeling of something stuck under right rib, PEM, burning/prickling skin, enlarged glands, white coating on tongue which never fully goes away (swabbed and no infection) etc. Worse around ovulation/period and seem to have relapses for no apparent reason. Have considered that I have MS, CFS but I don’t have any official diagnosis.

Have tried dietary changes (currently working with a nutritionist on an elimination diet), supplements, pacing, vagus nerve exercises, meditation.

It’s over a year now - I quit my job last September as I just couldn’t cope. Have a four year old and hoped to have another very soon though that feels extremely unrealistic. I feel very alone at times and do find it helps to read threads like this regardless of whether I have the same root cause to my issues!!

I had been doing so much better since December and would say I was 70-80% back to my normal self and feeling quietly optimistic. I had a bad couple of days over New Year where my neurological symptoms went crazy for a day or 2 then seemed to settle down. Then a week ago I started with a virus (??) had diarreah for a day and it seems to have set me right back to square 1. My gut has clearly been impacted quite badly as I’m back to reflux, belching and bloating and I hadn’t been this bad for months. My tight chest/SOB and heart palpitations have also come back. I recently carried out a comprehensive stool test which the nutritionist recommended - I literally can’t wait to get the results and start on a gut protocol as I feel my gut is at the centre of a lot of these issues.

So sorry for the mega epic post Blush so hard to condense over a year into a few paragraphs!!

The reason I felt compelled to post @Whatnext2018 is that from reading these threads we seem to have a strangely similar symptom path. I had exactly what you describe over New Year and it did pass after a day or 2. I don’t know if that reassures you in any way!!

fedupofbed · 25/01/2021 15:58

@Bambini83 thank you for posting, what a long and arduous journey you've had. I'm so sorry you're still going through it. I remember reading about there being earlier cases. I also have a friend who thinks her daughter had it in the December (she had a respiratory illness and mysterious Kawasaki-like symptoms).

It sounds like you've done so many proactive things to try and find answers, especially all the extra tests (which I've thought about but not done yet). Were you given any meds for your thyroid issues? Clutching at straws here, but have you tried cutting out gluten? I only ask because there is a link between Hashimotos and Coeliacs (which I have).

Sending love and healing.

OP posts:
LetsBeSensible · 25/01/2021 16:17

@Whatnext2018 I never really got the fizzing/tingling so I can’t say, but I would say that (as a non-Dr) probably nothing bad will happen and I say this coz I’ve not heard, or read of, anything or anyone saying that they started with fizzing then (serious bad thing) happened.
Obviously seek medical advice from your GP though.

I have two really good GPs at my surgery, they don’t work every day and I did specifically request those two but I just keep getting Dr Nob. I was supposed to have a meds review as well, all he did was ask me how many of each I take each day. That was my annual review.
It just pisses me off, I make a real effort to write a good history and request on the online form, they don’t read it and just ask what I want. Then tell me I can’t have it! I also asked for a pip letter, he said he would send a medical report. Reception have emailed me a list of every reason I have given to see the GP since I joined, plus my prescription. How’s that a letter for supporting Pip? Have had to do another request now. Sorry I’m just moaning but it’s all so unnecessary and wastes time.
@Indecisive12 I am without a voice more than 60% of the time since I got ill in March. Hoping my ENT appt next month goes ahead but not that hopeful, it was originally last November and got put back. Andslee helpfully told me about Relay UK who can speak for you on phone calls!

LetsBeSensible · 25/01/2021 16:21

Too wound up to remember another thing I was going to post.
I use a progesterone cream for PMS, for anyone thinking about using progesterone in any shape or form I recommend you have a read up on the website wellsprings serenity cream, obvs you can buy the cream from them there as well, but loads of progesterone info there too.

Bambini83 · 25/01/2021 16:22

Thanks for responding @fedupofbed. I’ve been reading all of your various journeys for months but felt a bit of an imposter to join as I don’t necessarily fit in timing wise!!

I can’t lie I’m struggling emotionally right now as I had seen such progress and feel like I’ve gone all the way back. My palpitations and SOB are the worst of my symptoms at the moment and they’ve never previously been a central feature. Such a horrible feeling, I’ve started to worry about Covid (re) infection but my husband thinks it can’t be possible given I haven’t had a cough (and never had). It’s been 10 days today so I’m not sure it would be worth testing now. I don’t go anywhere so no worry about infecting others.

I haven’t been prescribed anything thyroid wise as my numbers are ‘within range’. So I’m at the frustrating stage of waiting for my thyroid to fail or hopefully prevent that happening through diet and lifestyle changes. If anything I present more hyperthyroid but I understand for some people that can happen prior to the hypothyroid stage. I’m due my latest thyroid panel now - can’t go to the hospital as usual so trying to arrange private nurse to come to house for the blood draw. Yep I’ve cut the gluten and also dairy, caffeine, sugar, alcohol, processed foods. I’m on an elimination diet now for egg, nightshades, grains etc. I do wonder if I’m doing the right thing as I know many are finding relief on low histamine diet. I haven’t suggested the possibility of long covid to the nutritionist and she hasn’t suggested to me. Feel like I’m on this path now and have other options if needed. She is very helpful as she looks at things from a functional perspective and has suggested other tests down the line for heavy metal toxicity etc. It’s all based on trying to calm/halt auto immune activity. The stool test was very expensive (and we couldn’t really afford it) but it was one of the things I was really keen to do. It’s very detailed and looks at gut dysbiosis (how much your gut is leaking basically) along with intestinal parasites, host of gut infections etc.

In terms of other testing I found the salivary cortisol quite useful - I did one that tested DHEA as well and my cortisol goes wonky mid afternoon.

Sorry for the huge ramble! If there’s any specific you want to know in terms of tests I’ve done feel free to PM me. Sending love and healing to you too!

Indecisive12 · 25/01/2021 16:50

@LetsBeSensible thanks for that. I’m putting off phone calls to make appointments and things because obviously my voice is so weak so I’ll give Relay UK a try. I’ve just got an appointment through for ENT next month, it’s at a private hospital but NHS. Got my chest x-day appointment too.

@Bambini83 it must be hard when you’re doing everything right and get such a set back. I just keep being told it’s new and everyone is still learning about Covid but it doesn’t help the sufferers. I hope you get some support from the long Covid clinic.

Bambini83 · 25/01/2021 16:58

Thanks @Indecisive12 - you too.

I’m not really being treated as Long Covid (tbh I’m not really being treated at all 🤣) but I keep moving forward and hope for the best!

Indecisive12 · 25/01/2021 17:03

It fits with long Covid though so it’s worth pursuing I think. Sucks either way to be feeling like this.

Bambini83 · 25/01/2021 17:12

You’re right - I spent ages back and forward to doctors in the earlier stages. If I’m honest I haven’t dared to suggest it as I worry my notes are covered with notes about anxiety/being a hypochondriac! I haven’t had great experiences so far. I did have a phone consult with the CFS service a couple of months ago but she said they wouldn’t work with me until I’ve seen the neurologist. The service they offer is a 7 week course on managing symptoms which I think they’re doing online and I wasn’t sure how helpful it would be for me.