Long covid..

[RAat13]

I've had RA for near 21 years, in December I got covid and was fine no symptoms whatsoever however, follow on 3 weeks later I started to feel really rubbish, aching in parts I've not had before, pain is excessive, chest pain, fast heart rate, breathlessness, feel like I've been battered and we are now going into my 3rd month of this, I've never had it continuous like this. Has anyone had long covid with RA and does it get better? As well physically struggling I am mentally at breaking point.

[Lolabridge]

I'm sorry to hear you're having a hard time post Covid but I think it's fairly common to experience many of those symptoms you mention. I see you are young and a mother, so trying to take things easy and get plenty of rest since the illness will have been difficult for you, but that's what is recommended. Do let your GP know you're suffering both physically and mentally and ask for help and advice.

There are some self-help books you could look at and I understand this one is particularly highly regarded. My friend found it very informative and useful with her recovery process.

amazon.co.uk/Long-Covid-Han...

[RAat13 in reply to Lolabridge]

Thank you, my flare ups before covid would last 5/7 days and as painful as they were I could handle them with bed rest but this new continuous joint and muscle aches are different. I also had pneumonia recently too which they said I caught secondary to admission to hospital. I have a great support system so always have support and always talk to my husband about how I feel, I never hide anything from him and he is a god send. I actually spoke to my GP today and they have given me different pain meds and I've got my nurse next week.I am young and got RA young too and I think not being able to play or even bath my girls has been the hardest, all I've done is rest for 3 months. Thank you for your reply x

[Lolabridge in reply to RAat13]

I'm so glad you have support at home so that you have been able to rest and that the GP is giving you new pain meds. I do hope you feel better soon. x

[MadBunny]

Thank you for raising this- I've been the same- breathlessness, palpitations, muscle and joint aches and horrendous fatigue. Some days my arms feel so heavy I can hardly do anything. It's got worse over the last month. It doesn't feel like a usual RA flare. I hope you start to feel better soon.

[RAat13 in reply to MadBunny]

It's definitely different from an RA flare, I've got no swelling to my wrists or knees. My shoulder hurts when I breathe in and my hips are awful. I have always had pain on some joint everyday but nothing like this. It's exhausting just going from my room to the bathroom. I've not been able to drive for 3 months and at times I feel like I've lost control of my life. Have you seen anyone? Did they give you any advice? I hope you're okay considering x

[MadBunny in reply to RAat13]

I must admit I didn't see anyone , and I was a bit naughty because didn't test - I thought it was just a cold , as I'd had a cold last Nov and tested negative each time. I'm assuming now it was covid .My hands have been ok- none of the swelling or tenderness I get with a flare. Yes, the shoulder/ side ribcage pain when I breathe. Right hip painful. Aches all down my legs. I can manage to do a bit of shopping in the mornings but by lunchtime I' m worn out. I find paracetamol amd lots of fluids help . I feel a little better today.

[RAat13 in reply to MadBunny]

To be honest I rarely test I o ly knew after I got admitted to hospital on boxing day for an infected nodule on my foot that led to an amputation of my toe, when you're admitted they do a covid test, mine came back positive I had no symptoms whatsoever so was none the wiser. On Xmas day I was around quite a few family members including my 4 week old nephew and unknowingly had covid (luckily none of them got it) the mornings and night time are the worse for me, my right side rib cage and sternum. My legs feel like ive been holding weights from them, they are so heavy. Last night my toes even ached. Honestly I'd take a flare up over this any day. As strange as this sounds I want to be able to do my housework again. Do you get brain fog?

I've always had a photographic memory and now I'm easily forgetting things and losing concentration.

I had 2 days where I felt okay then was right back where I am again

[MadBunny in reply to RAat13]

Sounds just like me- I get the pain on the left. And my toes have started- which Ive never had before. And yes I'm very much getting brain fog. I couldn't even remember what we had for dinner last night 🙄 . I' m not too bad in the mornings but by 2pm I've had it and have to go to bed. Lets hope we can both see some improvement soon🤗

[RAat13 in reply to MadBunny]

Think it's safe to say we more than likely have long covid then aye.. oh god I'm so hoping we get some let up soon 🤞🏻🤞🏻 I'm bored of resting 😴

[cyberbarn]

All NHS areas now should have developed a long covid service with specialist clinics. It would be worth checking to see what the pathway is in your ICS and ask your GP for a referral. There are some things, including some medications, that can help.

[Otto11]

I’m sorry to hear you’re struggling. You poor thing. I know how hard it is but having a family to look after must be heartbreaking & impossible. I caught Covid in 2021 & have had long covid since. I had only 1 GP appointment in Feb 22 regarding severe exhaustion & palpitations. I had been in bed for 3 months at that point. They arranged an ECG & that was it. They refused a referral to long covid clinic as I already had chronic fatigue since EBV in 2010. In March last year at my Rheumy appointment my Rheumatologist wanted me to be referred but wanted to do a full body CT first to rule out any malignancy as I’d lost a lot of weight. That took several months & after she wrote to my GP asking him to refer. that was August. I have had no input from primary care whatsoever not even a phone call appointment. In January after a year of being either in bed or in the sofa with a few good days in between I called the long covid clinic to see where I was on the list to be told my GP only did the referral in December so had not yet been processed. So I’m no further forward. I feel very badly let down. I hope to goodness your GP is better than mine & can offer some help. My life has been on hold since November 2021. I wish I had some suggestions & a magic wand but unfortunately I don’t xx

[RAat13 in reply to Otto11]

Thank you, it's a relief to know I'm not the only one. It's mentally tough and been in a few dark places the past few months, I will always tell my husband how i feel. I'm lucky as he works from home most days and my sister comes here everyday to help out. Without my support network I'd be lost. I hope you get some relief soon, I'm tired of being tired x

[Otto11 in reply to RAat13]

Bless you. Thank goodness you have support. My hubby tries hard in a practical sense but has just switched off from anything else. Most so called friends have moved on so it’s a lonely journey. I’m also cater for my 44 year old daughter who has severe ME & Autism. She caught EBV the same time as me in 2010 & had to give up her job & her flat & move back with us. Poor hubby now has us both to care for plus working. Like you I’ve also been in a dark place a few times so totally understand. Non of us want to be like this what I wouldn’t give to feel like myself again. I’m sure you feel the same. So much harder for you being young. Sending you lots of gentle 🤗 Try to pace & take it day at a time. Easier said than done xx

[MjohnB]

Hi. Sorry to hear you're going through this. Just replying as I went through something similar. I had Covid in Nov 2021, and although I wasn't particularly unwell with it, as I got over the virus suddenly got hit with what I would describe as flu-like symptoms: fatigue, muscle aches, headaches, dizzyness - and just generally feeling very unwell.

The first three to four months were the worse, and I didn't work for three months before starting a phased return that lasted another 3 months or so. Thankfully work were very understanding. I have a young family too, so it was a very difficult time, trying to rest as much as I felt I needed to, while at the same time being there for them. Tough times. I understand what you're going through and sympathise.

Thankfully I improved, though slowly, and recovery wasn't linear. About 9 months or so I felt was pretty much over it - i.e. back to my previous autoimmune baseline (I have PsA rather than RA).

I don't think I did anything in particular to help myself recover other than resting and pacing myself. I was very careful not to overdo things and make myself worse. I cleaned up my diet, but hard to know how much that helped.

I was referred to a long Covid clinic, but by the time I saw them I was pretty much over it. Frankly they can't do an awful lot, other than advise pacing yourself, look at diet, sleep hygiene, reducing stress, etc.

It's interesting, but there does seem to be a correlation between autoimmune conditions and long Covid. It does seem to hit us harder. My rheumatologist simply said that our immune systems are already dis-regulated (her word), so a novel virus like Covid can really mess around with it. From my perspective, I looked at it like my immune system was like a snow globe that had been shaken up, causing all these symptoms, and just needed time (and rest) to settle back down. Maybe that's oversimplifying it, but it helped me make sense of it.

Sadly lots of people do continue to struggle longer term, and hopefully science will soon have some answers and treatments. However there are also many for whom the symptoms do settle down. The reality is that they're probably a lot less vocal about it, as they've returned to normal life.

All the best for your own recovery. Keep the hope, and focus on the small things that bring you happiness each day. Fingers crossed you'll get there, little by little.

Martin