Aaaaaargh how do I begin to tell friends & family that the RA has continued to progress & my chesty cough of the last 4 months is not just an infection although there is one there that 7 courses of antibiotics hasn't shifted, but rather a complication of RA. My poor Mum worries herself silly, my Dad gets silly & makes jokes & my parents in law lecture us on what we can & can't do. I have many great friends who thank goodness do try to understand but I don't want to be a burden to them. What do I tell our 9 year old who was so excited when I forgot the garden chair yesterday & sat on the grass with her for a picnic - usually avoided due to knee replacements & difficulty getting up.
Do I just smile sweetly when they say ''fingers crossed''; or ''the antibiotics will work'' & pretend what they are saying is true or do I shatter their illusions that because I look well - thanks steroids - I am well. Do I do what I usually do & protect their feelings (& mine from some of the reactions I will get) or allow my needs to surface. I am so fed up of the ''you do look well'' comments as many of us are. I can't cross my fingers & hope it will get better because that just won't happen? Can't anyway thanks to ulnar deviation which was due to be fixed with knuckle replacements but the latest chest development has put paid to that!
I have a good Rheumy team & get pretty good care from all the specialities I see but this feels like a step too far (I will get my head round it one day) & just for once I would like good news at an appointment. 22 years of RA, just about every treatment under the sun & 12 surgeries later, 3 more proposed we wonder what next. My poor husband puts up with so much because of the RA & our daughter just wants her Mum to do 'normal' things like other Mums.
Thanks for listening & forgive me for whinging on. Hope you have all had a great long weekend & enjoyed the sunshine in or outside with good old factor 50+.
Written by
Chatsi
To view profiles and participate in discussions please or .
I often have suffered very badly from this and when it first occured I went straight to a n e as I was struggling to breath and really thought I was having a heart attack. It turned out because off the tight crippling pain around my chest and ribs "all swollen and inflammed" that I was struggling to breathe and had to be shown how to breathe corretly with the costcocondristis.
Touch wood mines been on best behaviour for a while.
Yours does sound more serious.
As regards to your family, I feel its always better to tell your family the sutuiation, as they cant support you properly otherwise.
I really hope you manage to get your head round it soon xxx take care xx
Hi there, in the past I have had problems with RA in my ribs causing many problems when taking a deep breath, then I would start to panic and it would become worse.
You need to be open and honest with the rest of your family in order to gain their support. When you have had RA for so long like you, I've had mine 17 years the family to tend to take it for granted that your "ok" and doing "well". even though deep inside you probably feel like crap and that's putting it politely!! But the longer you go on letting them think your ok the worse you will feel, sit them down and talk. It's difficult for children to understand but your nine year old as obviously only ever known you with the RA just like my son who is now 16. As she gets older she will learn more about the RA and get to know just how difficult life is for you.
I just wanted my son to grow up with a little understanding but not for me to keep mentioning the RA, I wanted him to have a normal life/upbringing as possible, but that's how I am you may feel differently
I think Julie (above) may be right it is "costcocondritis " mine comes and goes not had an episode for a few years now, so perhaps yours is something else.
Gosh, I'm worrying now I had a chest infection about month ago and am still coughing!!! Costcodritis it s new to me - Gulp!
PLEASE request a chest xray.. urgently if you havent had one... if you are taking methotrexate..., had unrelated rib poblems... years ago... metho.. can cause chest/ rib/ lung problems.., chest infection or rib inflammation are the two less worrying possibiltities.. please ask Gp to arrange an xray.. he will contact the xray dept.. then you can ring them to get appt.. should all be possible same week take care
Hi,
I developed lung complications and severe breathing difficulties 17 months ago, it took over 7 months to get the right mix of meds to sort out. I've got rheumatoid nodules in my lungs and increased scarring of the lung lining. I also had an infection that was difficult to clear and coughed so much that I both cracked a rib and popped a hernia in my diaphragm As there were concerns about Fibrosis I was relieved when this was ruled out - it's taken me a long time to recover from physically and I still have some breathing probs/wheeziess and worsened asthma but nothing like it was before so it's manageable. I now see the cardio-thoracic consultant 3 monthly and hopefully this will decrease further soon.
I was concerned to avoid viruses and infections during the winter and friends and family have been responsible about not visiting when they her ill or coming down with a cold etc. I know how frustrating it is to be told 'how well you look' when you feel anything but! Steroids can give you a healthy glow and rounded face masking what else is going on.
How much you tell people depends on how much their reaction bothers you and how much in denial they are. Most people are somewhere on the spectrum between outright denial and over anxiety. You're not 'whingeing' and it's a terrible strain to be constantly protecting others and doing an 'I'm Fine' routine when that's not how you really feel Sometimes it's easier to say what you need to say - and be heard - if you write a letter. You could say that there are things that you want to make them aware of, but you don't want any drama or upset in front of your daughter. Children do need to be protected from health anxiety - they are only too aware of the reality of living with a chronic disease but you don't want them to be worrying about the future.
Good to hear from others who have experience of lung issues due to RA, especially that you have got a level of meds which has helped. Hope thinngs continue to improve & you can reduce your appointments. I suspect I will be having lung washouts & biopsies to determine type of scarring (thats what rheum Cons hopes will happen).
Like the idea of writing a letter & saying about our daughter - thanks - I do better putting things into written word, gives me & them time to process.
Wow coughing that much, my cough just sounds awful but doesn't hurt or anything.
Not sure if its my denial of the latest issues that is more of a problem - writing on this blog has helped thats for sure - don't want to panic others though. I know I am not a typical patient but am not sure which of us is?!
It is scary, especially when it comes out of seemingly nowhere. I had various wash-outs and biopsies and actually felt better once ~I knew what it was and what could be done about it. I spent 5 months + on 60mg of pred but did manage after a decreasing dose and other meds kicking in, to get off it again.
It's an adjustment and it takes time and can be quite emotional but you will get through it and come out the other side
This site is so helpful, knowing so many understand & care & take the time to hook up & connect.
Though I wish you hadn't had to go through it all, thank you for sharing your journey - it helps - even my husband was relieved when I said I had met someone on here who had had similar experiences.
Like you once I know whats going in for sure I will deal with it - hate being out of control & yet should be used to it after 22 years or so! Thanks for the encouragement.
Thanks everyone for listening & responding - you are such stars.
Know I need to be honest with the family & I will do so at some stage - just don't want to be a greater worry to them. We have always tried to be honest with our daughter so will continue that too, at a level she can cope with - she copes amazingly well with it all. I have never done things normally so this is just another complication.
Know lots of people who have had chest infections but not my symptoms so please don't worry - see your GP if needs be. I am not a standard patient apparently!
My GP is ok but usually just says call the Rheumy team & puts me on antibios. Am seeing the Respiratory specialist on Wed, since Feb my Rheumy team did chest xray, then CT scan, lung function tests, stopped the Mtx 2 weeks ago. They have seen me weekly for last 8 weeks so keeping an eye on me. Its possibly a drug reaction as been on rituximab for about 3 years now (4 cycles) but definately acute inflammation of the lungs of some sort.
I am new to the blog but have also have very severe RA but am taking abatacept, having been on pretty much all the others and either failed or dramatically not tollerated the others.
I have 3 children and my family know the deal sadly having lived with me through it and understand that its all "immuney". Basically any system in the body the immune system can effect, the RA can effect which includes organs, nerves, gastric things etc. My older son at 15 worries a lot about me and so we have to be a little careful how dramatically things sound but equally, his feeling of something being "up" and not knowing what is worse.
Just to add to the list of tests, they also do ultrasounds to check for excess fluid round heart and lungs. Obviously the drugs like MTX can effect the lungs and people who have latent TB can get really ill on the immuno meds.
Rheumatoid lung sounds ever so scarey but I have met several people with this. It normally follows people who have severe disease (but not always I have met one lady with RA Lung and she is fine on MTX and SLZ and leads a very active life dog training). Once that RA is controlled the lung symptoms also settle in general and a mega dose of steroid is often the short term "head it off at the pass" type treatment.
The national place that specialises in immune related respiratory conditions is Hammersmith in London.
In the meantime, I would be really honest with yourself- that life has dealt you a poop filled hand in the respect of health and every time you find out the next bit this horrid disease is taking from you there is a loss and grieving process attached. Take great care of yourself, have a big cry and shout and be angry. Then you kind of move on and think- right- how are we tackling this next bit.
Thanks so much - feel so much better having heard the responses on here & the encouragement that it doesn't have to be bad news - its the way my Cons pats me on the shoulder & the Rheumy nurse hugs me when I leave clinic makes me wonder what are they not saying!!!
Will see whats said tomorrow, allow myself space to react & deal with it, making the most of each day as well as I can & enjoying the good times. It is a huge loss & the uncertainty we all face is to quote Warrior a 'poop filled hand'.
Thanks everyone, really appreciate the support of the last few days, the care, wisdom & encouragement.
Look after yourselves
Chatsi
Gina if you are still coughing you need to get it checked out especially if you are on methotrexate, if its costocondristis you would know about it as like I said above it cripples you in pain and like when your knee swells from inflamation your ribs and breastbone swell and inflame and feel like they someone is crushing you.
I really hope you dont have it please get checked out with your doctor.
Chatsi yours sounds much worse than the costco, I really hope you get the medical help you need soon and all the support from your family that you need. xxx
Thanks RA-Fibro. Am sure I will get sorted just seems to be a while coming!
Take care
Xxx
Sounds like everyone above has given you lots of great advice. I wish you better and hope that it clears up soon. And don't worry about offloading how you are feeling on here - that's what we're here for Ann x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
As there were concerns about Fibrosis I was relieved when this was ruled out - it's taken me a long time to recover from physically and I still have some breathing probs/wheeziess and worsened asthma but nothing like it was before so it's manageable. I now see the cardio-thoracic consultant 3 monthly and hopefully this will decrease further soon. 
Advice/Tips wanted please
Advice
Hand, fingers and arm pain
I have shoulder and neck pain driving me mad, I have headaches most days down one side of my head .
