Awaiting first Rheumatologist Appointment

This is my first entry. I recently found I have RA, typically intersitial lung disease. I was a bit shell-shocked when my GP first told me and the blood tests and chest x-ray confirmed it. I am now awaiting my first appointment with the rheumatologist at my local hospital.

I havent had any real symptoms...I get a bit of pain and stiffness in my hands from time to time, nothing (touch wood) very painful or serious for too long. I would otherwise describe myself as a fit and healthy 37 year old. I have noticed that I can't do as much exercise in the gym recently and sometimes I have to stop and get a breath when I'm out walking, but other than that I feel fine.

I have noticed a slightly annoying cough and I feel as if there is something in my throat permanently, which my GP explained could be due to inflammation.

I have read a LOT of information on the internet ... not all of it good, so when I found this website I was relieved because it seems to be practical and informative. I am keen to make changes to my diet because if I am honest, I have let myself go the past couple of years....a LOT of sugar, sweets and chocolate has crept in. This has been kicked back out again, with the exception of a couple of squares of dark chocolate every now and then ;0P

I've also found swapping milk to soya has helped, and kicking out potatoes and reducing bread have also helped. I don't really drink and I don't smoke anyway. I do take supplements including good old cod liver oil....I am really hoping and praying that the rheumatologist gives me a positive diagnosis that I can do something about. I am generally a positive person and I don't shirk from a challenge.

I will update this blog regularly as it may help others understand their condition too.

[sylvi]

Welcome, you have found a lovely site here. The people are very friendly and helpful. They are there for you if you want to have a rant and they will enjoy your triumphs as well. Don't be afraid to ask anything you need to know about however trivial they seem to you,someone will have an answer for you.

Best wishes sylvi. xx

[Hidden in reply to sylvi]

Thank you sylvi !!! Xx

[Hidden]

Welcome. As Sylvi says this is a really good place to start communicating about your condition. I'm sorry you have been diagnosed with RA and I'm afraid I can't help you with this type of RA in your lungs because I know so little about it. I had thought that people who had RA in their internal organs rather than their joints primarily - developed this after getting the more typical type of RA first but obviously I was wrong. I hope others can help you more but I just wanted to say hi. Tilda xx

[Hidden in reply to Hidden]

Hi Tilda

I have had previous tests for arthritis but they came back negative despite having pain in my knees from time to time...more like stiffness really but I can usually walk it off.

I was diagnosed with Sjogrens syndrome last year which is also an immune system disorder, I am unsure if they are related.

I must admit I am petrified about the ILD, I'm only 37 and have no kids yet, but I am frightened it will be very serious. When I googled it I found all sorts ranging from manageable, to curable to fatal condition so I am very worried and extremely scared.

X

[Hidden]

Hi

Yes I assumed like Tilda that RA would be bad before it affected your organs.

Sorry you have been diagnosed with this, I'm sure someone on here will be able to help you.

Will be interested to see how things progress.

Wishing you good luck.

Mary

[Hidden in reply to Hidden]

Thank you for your kind words Mary, I really appreciate them x

[Hidden]

RA and related conditions such as Lupus are so complex that I think every person presents slightly differently and there are some extreme variations to all if them. Also many of the inflammatory arthritis's show up negatively for Rheumatoid factor and 20-30 % of sufferers of RA are sero negative. So while positive blood tests are a strong indicator if there are symptoms too - negative blood tests certainly don't rule RA out either. But your story has certainly taught me something and I hope you get that rheumatology apt soon so you are treated effectively. I would hazard a guess that if you aren't suffering terribly from pain in joints or chest it won't be a very aggressive form and will be very treatable so please don't worry unduly.

If you are planning a family then I would advise you to tell the rheumatologist this and he or she will bear it in mind when choosing your medication. 37 is not that young for RA there are many on this site who are in their early twenties or who have had it since childhood. To me it sounds young because I'm 49 but then many i know think of me as young too so it's all relative of course! I feel really sure you will be okay because I do think you would be much more sick if you had it badly so I hope this makes you feel more positive.

Tilda xxx

[Judi]

Hi nice to meet you.

I was 43 when I was first diagnosed with RA (back in 1993 'ish) and thankfully I am still walking about. (I'm 62 now to save you working it out)

We all have a variety of problems on here and bet that we've all 'googled' our symptoms at some time or another (and found different advice every time and .......... frightened ourselves to death). We are all unique.

I found this site a while back and it's suprised me how much more I've learnt from reading others posts.

Take care and keep us posted when you see the rheumy

Judi xxxxxxxx

[Hidden in reply to Judi]

Thanks you Judi. X. I have now self imposed the 'no surfing' rule! Having read everyones comforting comments I realise there are no hard or fast solutions and that everyone's cases are individual. I will continue writing as soon as I have more information. Thanks again, I feel like there are people on my side now, its extremely reassuring x

[Rockpool60]

Hello..and welcome I hope you get your appointment soon.

I too had something wrong with my throat..I kept telling the physio and the GP it felt like somebody had a hand or finger near my windpipe..kept getting checked for Thyroid. I was prescribed Lansoprazole for GERD as he thought that was the cause.It took another 20 weeks of blood tests for him to think it was inflammatory arthriitis and blamed me for having stomach problems for delaying the diagnosis :/ This site is brilliant and lovely people who have helped me already by their support and lovely words..take care xxxx

[Hidden in reply to Rockpool60]

Thank you Rockpool. I have an ENT appointment on monday which I anm so pleased about. I feel if they could just sort out my throat I could do the rest myself. I have recently felt that same windpipe feeling and was told at a+e it was due to the inflammation of the area - we think its due to hayfever because its very bad during the season and I don't get the feeling during the winter. However what is constant is the dryness which makes me feel like I am going to choke. I was diagnosed with sjorgens syndrome which attacks the salivery glands but have just been left to get on with it. It really gets me down because it is a constant worry that I am going to choke. I can't eat without having a drink because I can't swallow the food. - am hoping my appointment may help xx

[helixhelix]

Hello, sorry to hear that you've become "one of us". I can't help you specifically either, but did ask about this a while back. When I was first diagnosed with RA I was worried about ILD as I've had tuberculosis, several bouts of pneumonia and lots of episodes of bronchitis. So I knew my lungs were pretty rubbish. And at that point I was struggling to walk, and with the energy of a rather aged sloth. Anyway, my rheumy was quite comforting as she emphasised how much treatment has moved on now. Basically I came away with the impression that no matter what type of RA you have, if you can find a drug regime that works for you then the prognosis for things can be ok and you can have a fairly normal life. If you've read posts on here you'll know that finding the drug combination can be a bit of a long winded and exhausting trial, but chances are that there is a combination that will work for you with your type of RA just as well as for other types. And if it's been caught early then so much the better. So do try to stay positive, it's scary so also feel free to whimper when you need to, and good luck with rheumy appointment. Polly

[Hidden in reply to helixhelix]

Thank you Polly! My chest condition only happened following a bout of the swine flu about 5 years ago, ever since then I've noticed I get a winter chest complaint and a summer cold (which I suspect is pollen). I recently had two course of antibiotics for a chest infection which I suspect was caused by cleaning a rather dirty house when two tenants vacated. The doctor sent me for a chest x-ray then, which obviously showed inflammation, but also some scarring. As I said though its all a bit of a shock because apart from being unable to do as much at the gym, and maybe getting out of breath after walking four flights of stairs, I haven't noticed anything at all. But when the words ILD were spoken about I freaked. My rheumy appointment isn't until august so I will keep calm and stop googling! Thanks again xx

[helixhelix in reply to Hidden]

And I forgot to say that my aged an aged sloth days are now behind me. The drugs have made a huge difference, and am miles better than i was. Px

[Judi in reply to helixhelix]

Now Polly mind what you say about 'the aged sloth" ............ that describes me down to a 'T' (it also made me smile!)

Judi xxxxxxxxxxxx

[SootyB]

Hi, sorry to hear that you're still in a grey area with regards to your prognosis - I can sympathise, as I'm currently without a diagnosis, but with constant pain, exhaustion, etc. Still putting a brave face on, though!

Your throat symptoms rang a bell with me, along with mild breathlessness, and an occasional wheeze that makes me sound like an old man (and amuses my boyfriend no end), so I'll be interested to follow your progress.

I stumbled across this site by accident, and have received great support from everyone here, so I hope you find the same, and wish you the best of luck with the consultant.

Keep smiling - it makes them all wonder what you're up to!

Sara xx

[Hidden]

Thanks sara xx. I don't have wheezing at all, so I am at a loss. But I have my ENT appointment today so fingers crossed xx

[caggy]

Hi ya, I found this site a month or so ago after leaving work because my RA was unbearable, I also took the decision to stop treatment almost as a protest but because nobody would listen to me. I know that if I had found this site and had time to communicate as I do now then I would have not taken the drastic action I did. This site is great and so helpful even if you want to talk what seems rubbish, everybody understands because none of us has the all the answers but together we help one another. I didn't think I was too bad when diagnosed(18mths ago) and told I was... according to the blood results, so don't worry really you can carry on being positive and listen to all the advice you can get. Hope all goes well for your appt and you get all your questions answered, take a partner or friend who will listen too!