I've got myself into a state and need a bit of advice that only you will understand. I had a stinking cold last week but, being me, I didn't take any time off work. We were being inspected at work and my boss was off sick, so I wanted to make sure the inspectors understood everything we're up against and how hard my colleagues work.
Fast forward to Sunday night and I suddenly developed crushing chest pain. After I stopped panicking that I was having a heart attack and dying, I figured it was musculoskeletal and got on t'internet and decided it was coctochondritis. Went to the doctors to have it confirmed on Tuesday, where he prescribed my naproxen and signed me off for a week. I've been trying to rest as much as I can, but I feel rubbish. The chest pain isn't that much better and I'm absolutely shattered, feel tearful and sorry for myself. Even with the naproxen, my other joints are hurting more than usual - my hands hurt so badly that I can't crochet *wail*. I've had a migraine, can't sleep, have had mouth ulcers and the skin on my hands has become incredibly dry and itchy. I know this is a flare and I know it will pass. I also know it's partly my own fault for not taking time off work when I was ill, but I'm feeling really miserable.
What do I do if I don't feel any better when my sick note runs out? My doctor is really stingy and may not let me have another. What do I say? He knows I have Lupus, but 'mild', so seems to think I should cope just fine. The thing is I'm a nurse and I tend to minimise everything or make a joke out of it, so I rarely let anyone see how bad I feel, then seem surprised when people don't understand.
So, lovely people, some wise words would be most welcome!
Thank you 😁
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Nurseladybird
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If your GP is determined to be unreasonable, can't you see another in the practice? In any case, I suppose the best case you can put forward will be something that details exactly how dis-abled you are at the moment. Ideally, things that have obvious implications for work. For example - "Normally I am able to give IVs and hand out medications, but this last week, my joints are so sore that I can't manipulate anything - I cant even do my crocheting." Or, "I'm on my feet for about 6 hours every shift, but today I have real difficulty even getting from the car park to the surgery"...that sort of thing?
And try not to feel guilty or apologetic. If you are ill, you are ill. You'll feel even worse - and won't do a good job - if you go in when you are feeling bad.
Hope you are able to get the rest you need, and feel better very soon x
I would write down everything you feel and the symptoms you have so you don't make them sound easy to deal with when you talk to the GP. I often do this and find myself being disbelieved how I feel and some doctors are not sympathetic at all. Whereas if it is on paper, its more obvious to them how you feel and that it is affecting your life more than they think.
I don't see costochondritis being gone in a week do you? And "mild" lupus doesn't mean you don't have "not mild" flares in between.
You know better than most how ill you are - even if you don't let on. But you need to put yourself first at present - because otherwise you will be no use to anyone, will you? If the GP can't see how poorly you are and unable to work - you need to find someone who does. No playing the heroine!
Thanks PMRpro, I can't see it being better in a week either. I'm so used to having all my 'vague' ailments dismissed and being seen as neurotic by my GP that I'm just not confident, now I finally have a proper diagnosis, and need to stand up for myself a bit - and stop putting my needs at the bottom of the pile 🌷
Thanks PMRpro, I can't see it being better in a week either. I'm so used to having all my 'vague' ailments dismissed and being seen as neurotic by my GP that I'm just not confident, now I finally have a proper diagnosis, and need to stand up for myself a bit - and stop putting my needs at the bottom of the pile 🌷
It sounds as though you are experiencing a flare. Are you on steroids at the moment? A short course or temporary increase may be needed to help reduce the inflammation and bring your flare under control. I would suggest going back to your GP, or even better, trying to get an appointment with your consultant if possible.
It is important not to try to push yourself to go back to work when you are not ready as it could exacerbate your flare. Your doctor should understand this and be able to write you another note.
I like Paul's suggestion of contacting the consultant directly. I recall last year, having to be quite confrontational with my GP for refusing me a sick note for contributory ESA (I've been self enpoyed for 32 years and never claimed a thing before) because, between having a very bad reaction to coming off Duloxetine and then pneumonia followed by drug induced pancreatitis, I had the temerity to go off somewhere to be very necessary lay member of a team of inspectors for a healthcare organisation. He knew I was going and said he couldn't legitimately argue that I was sick when I managed to attend this volunteering engagement.
The DWP person phoned me to query this two week gap in my claim and was shocked and told me to go back to GP and tell them that volunteering is legitimate if it's acknowledged and is not the same as undertaking paid work while supposedly off sick.
I did go back and tell him this and he didn't like it at all but I got my backdated sick note and made him change "flu-like illness" for "pneumonia" since that was what his colleague diagnosed me with and treated me for!
I'm very similar to you in that I often make light of my primary Sjogrens with RA tendencies, and omit to spell out how sick I actually am. But also I bear in mind that these people are just human and if i don't spell it out and allow the occasional tearful moment to overwhelm me in front of them -how can they possibly know the reality I'm living with everyday?
Someone on a helpline told me today "mine isn't too bad and I tolerate Hydroxy very well. When I see someone with severe RA I feel so sorry for them as mine is invisible and not crippling. Then I think to myself that, even when I'm not feeling awful, this disease dulls the colour out of my life on a daily basis".
This summed it up very well for me. Please sort out that ignorant GP if you can't access your rheumy!
Thanks for that Twitchytoes. In some ways it's good to know I'm not alone but in another way it makes me sad that we're all going through it.
I found myself being quite stern with a friend today, encouraging (OK, nagging) her to go the GP about her Crohn's flare and being acutely aware that I don't take my own advice. I'll be ringing the consultant tomorrow 😁
Hi there. I am a nurse too and was in exactly the same place as you in September when I decided that I was fit and well enough to go to work with a major flare plus pancreatitis. Guess what...I was wrong!!! And as a result I landed up in hospital and am still off sick!
So, as a nurse we always minimise things. I totally get that thought of 'it's not a cardiac arrest, it's only costochondritis,' but let's be realistic. You have a flare which has not only left you with painful inflamed joints but you also have a inflammation to your anterior chest wall which I suspect, if you push yourself will develop as a band into your posterior chest wall. Then it will be so painful to breath that you'll put yourself at risk of a chest infection.
Now, sensibly answer this....if a colleague turned up on shift in your situation would you encourage them to stay and look after their patients, do the IVs, admission paperwork, wards rounds, wait...there's an emergency, now just bleep that doctor (again). Or would you consider them unwell and therefore unfit to provide safe care to the patients and encourage them to go home?
Sorry to sound like a windbag but if you are poorly you need rest not work. Why is it that whenever we phone in sick, especially as nurses we get 'THE GUILT'. I know it's not just nurses but we seem to get an extra slab of guilt when we phone in sick, it's been hammered into us during our careers that going off sick isn't acceptable, yet the NMC code of conduct states that you must be fit to work. God forbid you make a drug error due to you feeling poorly, you'll get hung out to dry. Could you manage to do CPR effectively with your own chest pain?
My advice is drop the guilt now. Costochondritis does not go away in a week. Once you drop the guilt and accept this flare for what it is that will relieve some stress. See a different GP, no need to go back to someone who is unhelpful it's a total waste of your time. Maybe email the consultant secretary and explain the situation? Steroids are a great suggestion to get you through this.
Bottom line, you can't look after your patients if you are a patient yourself.
It sounds like you feel totally crappy with a whopping flare and a side order of guilt. You wanted a talking to so I apologise for being so direct. I think you have some great suggestions in the replies. I have to question why you go to a GP who is so unhelpful. Can you hunt around for a different one or change surgeries?
Sounds like you need rest, TLC, a duvet, painkillers, gentle mobilisation and plenty of painkillers. Diclofenac PR is alway brilliant for inflammation to the chest if naproxen isn't doing the trick. Maybe discuss that with a GP?
Either way, I really hope you feel better soon. Sending gentle hugs, but seriously....drop the guilt you are human, not superhuman!
I don't have any advice on how to get your doctor to take you seriously, but I do know that I had to retool my way of describing how I feel to people. I, too, used to joke and minimize. I always sort of thought the doctors were supposed to just "catch it" if I felt truly unwell. So now when I'm feeling really bad, I've learned to sound grim and unhappy (because that's how I feel when it flares up!). It makes me sound like a grump, and occasionally sometimes comes off as a little mean, but if it means I get taken care of properly, it's worth it.
I recently had a flare myself and had a really good chat to my doctor, I ended up in tears and saying that I feel that no one understands apart from you guys on this support group, I told him that I didn't think even the medical professions don't seem to understand and he admitted that he didn't know a lot about lupus and this is why we see convulsants and even they only get the science behind it and could never understand how if feels unless they are a sufferer, he tried to understand and put me on naproxen, try to level with your gp and do not hide your feelings if you are tearful then show them that, I am a phlebotomist and do come across others with lupus in my work and some of them are amazed I can do my job with the demands on the services and being in my feet all day just like u are, don't get disappointed in the days u struggle to do your job praise yourself for the days you do! It's a hard to do so well done for every shift you get through x
I suppose part of the problem is that I can't even explain to myself how I feel, so I never know how to describe it when my doctors ask how I feel - 'rubbish' sounds perfectly obvious to me, but clearly could mean anything.
I admire your warrior attitude and will follow your lead. Thank you 🌻
I just wanted to say that I totally get and understand what you mean. I often have people ask me what my illness is and how it effects me and I get all embarrassed talking about myself and end up making a joke about it and saying "oh it's ok... that's life..." etc. But it isn't!
My family live with me so do understand because they don't need me telling them, -they can see.
I also think you need some steroids. It's the only thing that gets me out of a flare.
Hope you're feeling a bit better now, I'm a bit late responding as I'm behind in reading everything.
I find that they work fairly quickly, if I have pleurisy for example, they generally help the pain within a day! I tend to have 30mg the first day then take it from there and reduce down each day when I feel an improvement, generally after a day or two. (I know there's no need to taper on a shirt course but I feel that it's less of a shock to my system if I gradually reduce them! )
Ok, I need to get another sick note anyway, as I'm definitely not ready to go back to work tomorrow, so will see what my GP thinks. Still no reply from the rheumy nurse either...........
You've had some good advice re treating this flare and speaking to your consultant is a very good idea!. As someone who has had this chest pain for years I've been advised that if it suddenly worsens and doesn't resolve then it should be checked in A&E but as a nurse you know this. It can also be pericarditis or serositis, inflammation of the lining of chest and lungs. Celebrex is a better anti inflammatory to treat it as is colchicine which I now take and it's transformed me. Hope you get the help you need and feel better soon. Look after yourself, you must do that before you can help others. X
I can't imagine how wearing it must be having this pain long term 😟 I've just found out my consultant is on leave, but I'm waiting for the rheumatology nurse to ring me back. Hopefully she'll be supportive.
I'd love a £1 for every time that has happened to me!. So annoying when you need his advice badly!. Hope the Rheumy nurse is helpful, keep us posted. X💐
First of all a gentle hug and things will change. Start being honest! These docs don't live in your skin nor do the people with whom you interact. Honesty is always the best policy.
Can anyone figure out what might be causing the flare? I am most curious about this as I've found by listening to little body signals I can avert many things. We are all different, but I have many food triggers which are very complicated in that sometimes they can take a couple of days to manifest; sometimes a food reacts in combo with another. It took a long five years with me being pro-active, but it worked. I send blessings and love and hopefully you can discover the gasoline.
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A lot has happened 
Feeling a bit lost...,
Just wondering how you explain your illness to people...
THE LONELINESS OF LUPUS
