Scared

[Pemberton1966]

Hi. I have recently been diagnosed with Lupus. I have chronic chest and rib pain. So much so I seem to struggle to take deep breath’s.

Is this all part of lupus?

[sarahsch]

Hi Pemberton, chest pain was always my most prominent symptom.

A form of pleurisy is very common in SLE as is costochondritis in which the rib cage joints become inflamed.

Both are usually easily treatable with steroids (pleurisy) /NSAIDs (Costochondritis). Once I was established on hydroxychloquine, both were kept under control.

I hope this helps reassure you. Take care,

Sarah x

[Pemberton1966 in reply to sarahsch]

Hi Sarah. Thanks for the reply. I do actually have Costocondritis so it’s good to hear about this.

As you probably know it’s not actually pain but like a crushing sensation where I feel I can’t breathe properly. It’s just all a bit scary.

I’m not on any treatment at the moment as I was only diagnosed in the last eight weeks. So I think I’ll get onto the drs today.

Thanks again

[TeaandToast94]

Morning Pemberton1966,I get this too and it is one of my signs of being particularly run down. Sometimes I wake up with it, sometimes it develops in the day. And it can be pleuritic or crushing/tight pain depending on what my body wants to give me that day!

One of the most horrible symptoms I think and even though I think quite rationally about it, it's still very scary.

Hopefully now you have a diagnosis you can get effective medications, take care and look after yourself

[Pemberton1966 in reply to TeaandToast94]

I’ve had Costocondritis for years now apparently. I always thought this was a dubious diagnosis. But to now hear it can be linked to Lupus is an eye opener. I always thought I was being dramatic when I used to complain about the pain in my chest wall. To the point I got fed up of complaining! So when asked how I was I would lie and say fine!

I just want it to go away. It really is debilitating. I’ve gone from being a relatively fit 54 year old but since having Covid quite severely I feel like I’ve aged 20 years.

I think I’m having a bit of a depressive episode! I just never know how I’m going to wake up.

Thanks for replying. It’s good to know I’m not alone. X

[Hidden in reply to Pemberton1966]

Remember you’re never alone, we are all here and if you ever feel you must talk to someone or explode the Samaritans are amazing and they live to listen.Remember as soon as you wake up and start the day the next day will be nearer, so even if it’s a bad day a better one is coming.

Remember none of your symptoms are odd or in your head, you have a unique illness that requires unique bespoke treatment which makes you special. 😉

[TeaandToast94 in reply to Pemberton1966]

Absolutely! When you hear about everything linking it's like a door is unlocked isn't it. I try not to complain about this pain to people around me too as they then panic that I'm having 'chest pain' so I try and just get on with it.

I completely understand where you're coming from though, it gets you down because it can be so restrictive to daily life! Sometimes I can go through quite a period without having it and I think hooray, it's gone... only for it to come back the next week or so and I realise that it will probably be a sticking point for me now as something that flares up. I am now trying to change my view point that it's my body's way of telling me to slow down.

Definitely agree with the comment below about googling the spoon theory. I showed this to my husband who's been understanding on the whole, but also helped him to understand that I can't push myself and that I only have a certain amount of 'me' to give at a time. x

[Pemberton1966 in reply to TeaandToast94]

What you say is so true. You think my goodness. I feel ok. Then a day/week/month later it’s back. When it’s bad everything is such an effort. Just getting a coffee and going back to sit down I sound like I’ve just ran up and down the stairs a dozen times! It’s weird that people actually understand what this feels like.

And you’re right. There’s a limited amount of time you have to give before you say ‘I’m done now!’

[Pumpkin2009 in reply to Pemberton1966]

Pemperton1966, Do you think the Costocondritis seems even worse since you had Covid? I had Covid in November and still have lingering symptoms like diarrhea, constant sinus drainage, days of debilitating exhaustion, etc. Also, some things that were in control have changed including problems with heart arrhythmia. My meds have been adjusted, but didn't work so am waiting for results from wearing a heart monitor for 5 days. I am older than you so adding more years is frightening and I feel so much weaker physically and so much less stamina since Covid. I understand what you are saying about a depressive episode because combined with lupus symptoms and then the mysterious Covid, it is very isolating to deal with. Even the lack of taste for over 6 months now, may not seem like a big deal to other people, but it gets old. I feel rather frustrated that the attitude seems to be just deal with what Covid has and continues to do to some of us. I did not leave my house. Unfortunately, my husband did and that is how I got it. He recovered normally, which I am very grateful , but with autoimmune issues, not so for me. I also know it could have been worse and I am trying to remember that. Yet, now with the vaccines, that is the main focus. - not about those still dealing with it where over the counter meds are all we have.

I apologize for the ramble, but I can't help but worry that Covid continues to be in the body and even for those who seem all right, will it cause something that no one will even link it to.

Take good care of yourself and I thank you for sharing.

Healing hugs.

[StriatedCaracara in reply to Pemberton1966]

Pemberton, I had covid March 2020 then Long Covid. I'm awaiting my first rheumatology appointment. Since first AZ jab end of March, I have had flare which I'm working hard to get over. I get a grip in my chest sometimes at the end of each breath, which I thought today might be pleural membrane being inflammed, also have what I think is bronchiectasis and when I cough up phlegm then I sometimes get autonomic dysfunction and end up feeling as if I will pass out. I'm 61 and used to be very well but since covid have had issues with first my kidneys, then lots of sweating, glands up at night - then affecting heart, lungs, joints, nervous system with some very bad headaches. I only have disprin (300 mg which I break up) at the moment. I'm scared also and since my positive ANA test last week the GPs at surgery don't get back on things so much. Do other 'pre first appointment people' find this? It is difficult to know where to turn for advice - this conversation has really helped😄

[Pemberton1966 in reply to StriatedCaracara]

Hi. The chest thing is so awful. I get what you mean about the end of a breath. My breath sometimes comes out very ‘jaggered’. Don’t really know how to explain it. And it catches you as well. How long should I be waiting for my first appointment? I read everywhere that if you get Lupus sorted ASAP and try and get on a treatment plan of some kind it’s better than leaving it. But there doesn’t seem to be any urgency. I thought I was supposed to have regular blood tests?

I will be the first to admit I knew nothing about Lupus or how severe it can be. Obviously though. But now I’ve got it it’s like wow!

Let me know when you eventually get your appointment. I just can’t see an end in sight.

[StriatedCaracara in reply to Pemberton1966]

Think there is a backlog of 4 to 8 weeks here but referrals get triaged so can jump up list if serious symptoms. I listed as much as possible to the GP. Then I felt more poorly with additional things - which would not be included I guess. I packed a bag ready to go to A&E if I need to. Some days, and some hours in days, are better than others. I 'm interested to know what happens at the first appointment and how long the appointment is - I think it is on the phone. Then I guess there are more tests (blood tests at local surgery using slips that might get posted) and functioning tests at rheumatology and elsewhere. Really new to this. Just trying to take things slowly and keep a diary so I have information that I can put together for the appointment. Take care.

[Spanielmadlady]

Lupus affects organs with connective tissues so the lungs,heart,kidneys and brain . I have 2 areas which become sore when my lungs are staring to flare I also get a cramping pain under my left breast. Pleurisy and pleuritic chest pain are more common in lupies.i had 6 hospital admissions in 5 years with either pneumonia or pneumonitis but have had none since being on lupus meds.If it bothers you at night try to sleep propped up x

[Pemberton1966 in reply to Spanielmadlady]

Wow. The more I hear the more I realise how tough this condition is. Thanks for replying x

[Spanielmadlady in reply to Pemberton1966]

The worst thing you can do is stress over it as stress is a major trigger in lupus.after 7 years I can read my patterns so things dont bother me the same .for me the best thing was just to go with the flow so Lupus doesn't surprise me that much now.i ve just had episcleritis ( inflammation of the eyeball) with you guessed it .. a connection to lupus and sjorgens which I also have .It is a difficult condition to live with but with compromise and adaptations it is possible. Google the spoon theory xxx

[Beautifulwoman]

May be pleurisy(lining of the lungs rub against lungs and cause inflammation). Could also be pericarditis(swelling and fluid in sac around the heart). I've experienced pericarditis personally. It hurts and it is scary. Let your doc know asap. Go to ER if you're struggling to breathe.

[Chanpreet_Walia LUPUS UK]

Hi Pemberton1966,

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack that you can download or request at lupusuk.org.uk/request-info....

I'm sorry to read that you are experiencing pain and having difficulty taking deep breaths. Have you managed to speak to your doctor about this?

They can refer you to a pulmonary specialist if required. We published a factsheet on lupus, the heart and lungs which you may find useful to read at lupusuk.org.uk/wp-content/u....

Best wishes,

Chanpreet

LUPUS UK

[Pemberton1966]

Hi. I have an update on my Lupus diagnosis.

I spoke to the hospital yesterday and all my blood tests came back normal!

The consultant said they are putting this down to ‘Transient Lupus’. I really don’t understand. She said because I was so ill with Covid and my unusual blood clot site, they think the viral infection I must have had had caused me to test positive.

She wants me to retest in 3 months just to make sure it comes back negative again.

But what if it comes back positive? Then will she say we will retest in a few months to confirm the positive test?

Don’t get me wrong I was very emotional when she said I was negative. After learning so much about Lupus these last few months I wouldn’t wish it on my worst enemy.

I’m now just concerned. Should I carry on as if I have it? Keeping out of the sun etc?

Or enjoy my new found freedom until my next blood tests?

Has anyone else heard of Transient Lupus? Or is it just made up because there’s no other explanation for testing positive then negative?