COVID long-termers 14 weeks+

[isitorisntit]

Welcome all. I'm sad that many of us are still here but at least we have each other. The other thread is full, hence this new one.

Welcome anyone else who is struggling with a long recovery from COVID. They're a supportive lot, here.

@AliCon that’s great to hear. How long have you felt better for? X

@MillStone I was prescribed it for nerve pains, for me that has been the worst symptom, mainly in my arms but initially in my legs too. I’ve been taking it since April. It is an epilepsy drug but apparently good for nerve pain though I think the calming effect of it has been the main benefit!

@Criticallythinking about 2.5 weeks now. Prior to that I had a major relapse and got into a very bad headspace thinking I would never get better. I realise a relapse might still happen but I did a lot last week (10,000 steps per day minimum) on not much sleep and feel better than I've felt in a long time

@AliCon that’s great to hear. I had a major relapse early June and a few small ones since and feel like I’m still emerging... it’s so hard to keep the faith isn’t it? My boss keeps asking how I am and I have to say no change, still off sick!

@Criticallythinking the relapses are the worst, I wonder if everyone has a trigger for them. My husband has had very mild SOB since his suspected Covid in Feb and he thinks stress is a trigger for him.

@AliCon yes that makes sense I had returned to work (only working from home) and it was busy and stressful. I realised that I was going to have to stop if I was going to get better.

Week 16 here.

My remaining symptoms are a tight, tickly chest. I’ve done no exercise at all and I spread out all my activities so only do one thing a day. Not able to work, and due to my casual job don’t think I’ll have a job to go back to as they’ve had to hire someone now to replace me.

My main problem is lack of energy and tiredness. I’m sleeping ok at night but all morning I feel shattered, as if I’ve been hit by a truck. Feel better as the day progresses.

@Frankiemintz welcome. That sounds very much like fatigue, of the post viral kind. It’s frustrating as hell but you sound like you’re managing it.
I lost my job the week before covid. I am having an assessment for work capability soon to see if I need to be doing job searches (or not)

Hello new people, and sorry you're here too.

@LetsBeSensible I'm sorry about your job 💐. Can I ask how long you've been living with CFS and any tips for managing it... I'm assuming rest, healthy eating and careful pacing?

@TiddleTaddleTat a belated thank you for the physio info you sent yesterday - it was really helpful. I'm trying really hard to keep my heart rate as low as possible and now fully back in bed again 😕.

I've been reading these threads for a while (and the Long Covid FB group) and as there are so many of you knowledgeable about post-viral issues I hope you don't mind if I ask for your opinions?

I was ill last November - light-heartedness, nausea almost like morning sickness, extreme tiredness, the worst headaches I ever had and awful pains in my joints. I also had a tight chest, chest pains and a feeling that I couldn't breathe and periods of feeling my heart was racing. I was completely wiped out for a week or two. The doctor told me I had a flu-like bug.

Then, the same thing happened in December and January coupled with a profound sense of despair - I remember telling the GP that I just wanted to die. The doctor then told me it was all down to anxiety. I am anxious but I felt the anxiety was due to the symptoms rather than vice versa.

In February, I relapsed again though for less time and again it was put down to anxiety. In March, I had a slight cough and temp and a week of extreme fatigue followed by several weeks of having a menthol-like sensation in my mouth (possibly covid? Who knows).

The periodic light-headedness, chest pains and racing heart feelings have continued along with a general feeling of being tired (I work three days a week and am exhausted each week by the end of this and had to give up commitments I had on other days as I was too often tired.)

Obviously, this started last year so before covid, but I have been searching for ideas of what is wrong for months. I had decided it must be hormonal in some way and have also had a pelvic scan (normal), iron tablets and three ECGs but nothing seemed to quite fit. No one ever suggested to me that it could all be post-viral but once I started reading about the post-viral symptoms of covid sufferers, it all seemed very familiar. Does what I describe sound post-viral to you?

@fedupofbed No probs, glad it was useful.
I've been trying to keep my heart rate from spiking up and I do think this has helped my fatigue from getting worse. However I am still completely debilitated by it, especially in the morning and until about 8pm really. The only energy spike I seem to get is about 10pm then I'm in bed an hour later !

@Swirlingasong That sounds frustrating, you haven't been able to get any answers about what has been happening to you. Have you asked the GP if it could be a post viral syndrome? It can occur with any virus , particularly those that are considered more serious (inc. flu). Have you been checked for whether you had anything like glandular fever etc.? Might shed some answers.

Thanks, TiddleTaddle I haven't asked the GP as I have not been back to them since Feb. I do now have an appointment booked but am nervous of bringing something up on the basis of 'I read it on the internet' as I already feel they have me down as a hypochondriac.

@Swirlingasong It does sound like a lot of things I’ve felt also, worrying that its been so long though so I’m not sure if could be covid or not 🤷‍♀️
Do you ever get the feelings of despair etc now or did it stop after the first three months?
I’ve had some dark thoughts before and strange feelings during all this and really don’t want them to return. I’ve heard others have also and have no idea what causes them.
So sorry you’ve been suffering so long 💐

Hi all, felt better but not 100% for around 10 days up until Friday. Friday morning started back with the stingy eyes, dizziness, chest still tight and today tightness sort of under my armpits? Very achy all around that area, has anyone else experienced this?

Been researching lots and Beta Glucan 500mg seems to be bringing positive affects in lots of people, has anyone tried it? I may order some online.

I also saw this about red blood cells and 120 days

This

@fedupofbed how do I manage CFS! Badly! I’ve had it over 15 years. I’m really unhealthy. I only recently quit smoking. And I swear the two greatest things that help CFS are Epsom salt baths and home shopping delivery.
I’d been in a career which demands a lot including additional hours and all I did was eat junk to fuel myself then crash at night. I know now that I can’t commute, I can’t work full time and I will have to take a lower paid job. I’m getting older, it’s getting harder and honestly you’re at the mercy of your manager as to whether you get reasonable adjustments. My last one decided I wasn’t disabled, didn’t need any and made sure I was run ragged with the highest workload. And that’s the SECOND time it’s happened.
You really just have to be comfortable with who you are and what is possible. I’m not cutting out (two cups of tea per day) caffeine, it’s miserable. Sugar, chocolate, crisps, whatever just try to be balanced, eat fruit and veg, take a multivitamin and vit d. YOLO!

@swirlingsone could be post viral fatigue. Do you ever have sore or pulled muscles? Did you ever fully recover, or just get “well enough” to work?

Hi everyone, and welcome to the new people. I’m sorry you’re experiencing this too.

Next week it will be 4 months since my symptoms began

I also realise some specialists mark 4 months as being when they consider ME rather than CFS and this is really worrying me. Anyone else seen this? Do you think it’s general (medical) accepted knowledge?

I haven’t spoken to my GP for a few weeks, but probably need to do that soon.

I have felt a bit better for the past two weeks, but that’s with not working, resting as much as I can and just doing minimal childcare (luckily both are in nursery and school).

I’ve still got:

• Swollen glands and throat which come up typically after 2pm on a bad day and last till bed
• Strong fatigue with little desire to go out which is really unusual for me. Lots of lying down in the garden/on sofa.
• Can’t concentrate much though recently have been able to start reading again which is brilliant
• I’m managing about 7000 steps a day. I’d really like to raise this but feel pretty nervous as long walks seem to trigger symptoms.

What helps?

• sleeping well at night. Easier said than done I know, but if I drink minimal caffeine and no wine my deep sleep stage is longer and I feel better in the morning.

• Gentle yoga

• lots of sunshine

• paracetamol and ibuprofen (I tried Naproxen but it tends to make me feel more dizzy).

• Doing everything way more slowly. Including standing up, eating etc. I’ve found this helps with dizziness/racing heart.

• only just started all the supplements so not sure what they’re doing yet.

• Salty hot baths

@LetsBeSensible I’m with you on the Epsom salts and Dead Sea salts, they are so comforting and relaxing!

On the plus side, my GI symptoms and also back ache, muscle aches and torn calf muscle have calmed down. Fingers and feet no longer swollen either. Chest is tight often but no SOB anymore. So all in all... progress, but very very slow, and I feel mentally very weary and ground down by all of this. Particularly feel useless as a Mum/Partner.

We are currently planning a camping trip for later in the summer, and while it’s more glamp than camp, I’m feeling quite anxious about it, particularly the absence of a hot bath!!

Whatnext sorry I didn't mean to worry you. Yes, I get very down sometimes but I think that might just be me!

Lets I have recurring muscular problems in my back/shoulder. I always just got well enough to work but did cut back on non-work stuff. But actual rest is pretty hard with two primary aged dc.

Actually one last thing that helped me - a few weeks back when I had a bad relapse and was waking ever my morning with headaches so severe I could hardly get out of bed - was to immediately drink a load of rehydration solution (I use the Zero brand you can get from Wiggle in a pint glass of water).

This would really help me until the paracetamol kicked in.

Just for anyone else now experiencing those awful waking migraines!

@Swirlingasong - sounds very like covid to me. Have you got a plausible route of infection for getting it that early? I would be surprised if there weren’t some cases around in the uk at the end of last year, particularly given the number of flights back and forth. There was also a recent spanish study that suggests covid may have been around from earlier in 2019. Whatever the underlying cause, i hope you start to feel better soon.

@LetsBeSensible thanks, sounds like you've juggled a lot of balls for a long time.

@Whatapickle78 yes I was vaguely aware of the 4 month mark and this has been playing on my mind (I first got sick end of February). I've been reading more and more about ME/CFS which is not necessarily helping, mentally at least. I'm just waiting for one more blood test result (expected any day now) then I'm planning to go back to my GP. Not sure if I need another cardio referral too as my heart rate is still worrying me ( now very low resting but still spikes high when I try and do anything- anyone else still get that?).

So my plan for today is 'radical rest'. I'm going to try really hard to stay away from my phone, quit my racing mind and listen to relaxing podcasts in bed all day. Easier said than done for me.

Nothing I can think of other than a couple of trips to London and living close to a tourist hotspot Monty

@Whatapickle78, yes I had a lot of underarm aches on the left side in particular. These have eased off from daily now but still occur but now there's a burning feeling rather than an ache.

Day 98 for me. Private GP has prescribed low dose of Prednisolone steroids 5mg 3 x daily. However I think I'll wait until my respiratory appt next Thursday before I take these. Really hoping they'll work on the breathlessness and lung pain. If I could get those two things sorted then I feel I could manage the fatigue and throat issues.

@fedupofbed
Podcasts sound like a great idea over reading. Good luck with the radical rest!