Sometimes, somethings, knock us for six - LUPUS UK


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Sometimes, somethings, knock us for six


Hello everyone, hope you are all having a relatively good day today.

I've not been here for a while as I've been in rather a dark place where things just become overwhelming. Apart from that I had a bad dose of laryngitis which lingered for what seemed like an eternity and my joints and muscles got so bad I could barely walk some days.

As some of you know, a previous barium swallow showed I have an oesophageal web and dis motility. However, another endoscopy and a different doctor said no web, just oesophageal and stomach inflammation and dismotility caused by nerve to muscle messages. I also had a chest HRCT to find the cause of my breathing problems and it showed I have air trapping probably caused by small airway inflammation.

I now know that small airway inflammation is different from small airway disease. I found that out the hard way when an off the cuff remark from a doctor about small airway lung disease and fibrosis being common with CTD. I googled it, followed links and read that I'd be dead in 2 years. An urgent appointment with my GP put me straight that I'd been reading about things I did not have. None the less, fear set in and I think this contributed greatly to my downward spiral.

Added to this was the pain and the fact that every doctor I saw for anything from my bowels to my chest to my eyes, all dithered and expressed doubt with connecting anything to my CTD. The alternative is I have about 30 different conditions which all started together and all flare up and worsen together.

My Rheumatologist said previously that I may have mixed CTD which would include scleroderma but an ENT doctor said that although my swallowing and dismotility is suggestive of it, it would be far more aggressive than mine was. Well surely it has to start somewhere doesn't it, or do we just wake up one morning and go from perfectly healthy to severe aggressive disease? He also said my dryness, stuffiness, Eustachian tube dysfunction, nasal crusts, bleeding, ear pain and face pain were due to an allergy despite my allergy tests all being negative. Different from the last ENT doctor I saw.

Damn these inconsistent doctors. After doing so well and seeming to really be making progress, all this just seemed to send me back to where I was years ago with nothing definitive diagnosed while I get worse and worse. Plus I don't see my Rheumy again till May and my lovely GP is on maternity leave. AARRGGHHHHH

Anyway, I'm slowly getting myself back together and at least now all the tests are over I can finally go back on my wonderful Prednisolone. Just have to have a quick blood test pre pred in the morning and I'm good to go.

I have missed you all and it's good to be back. XX

17 Replies

Welcome back GG 👋👋👋👋

Am so glad you're here again: missed you ☺️

Am v much relating to "everything" you're describing...what a life 😏...only natural to be low with all this: comes with the territory

& HURRAH for prednisolone: I hope you're enjoying the benefits really soon

Take care, hang on in there 😉

🍀😘🍀😘 coco

Thank you coco,

I knew within a short space of time of being back here I'd start to feel better.

It's sooo lovely to be amongst people who totally understand what you're going through as we're all in a similar boat.

Roll on tomorrow!!!

I hope you're ok and keeping on top of things. X



Hi Georgie-girl,

It's good to hear from you again, although I wish it were under better circumstances. I'm sorry to hear that you are having so much trouble getting a sufficient diagnosis for your symptoms. Have you considered asking your GP to refer you to a different rheumatologist for a second opinion? Perhaps a rheumatologist who specialises in lupus and/or connective tissue diseases? If you let me know what area you are in I can provide you with information about any specialists we know nearby?

Thanks Paul but I already see a good specialist (Dr Kaul) and had seen 2 rheumatologists before I got to him. He knows it is some kind of CTD but not sure which one as I share symptoms of a couple. I have a terribly high RF, complement up and down but my ANA's are always minimal. They can be seen visibly (speckled) but not enough to give a positive result. He is treating me for UCTD/MCTD but without anything concrete it leaves things open to interpretation with other doctors.

Thank you anyway and hope you are well.


Georgie it's good to see you back here - even if it is following a bad period still accompanied by much uncertainty. There's no winning it seems - either these specialists blame one CTD for all our symptoms or, if they don't know enough about complex overlap CTDs, they treat the symptoms and signs in isolation - leaving GPs, who generally know a little about a lot - to join up the dots for us or not - usually not! Increasingly nontypical multisystem connective tissue diseases are incompatible with very beleaguered health systems and this doesn't help.

Hang in there and try not to worry - your consultant knows something is wrong. Like me you have been allowed to try quite powerful treatments which may have affected the way our antibodies appear and also have dampened down our overactive immune systems so that we aren't experiencing the full onslaught of aggressive disease perhaps. So then they say things like "you can't have Lupus/ Scleroderma/ Vasculitis etc because by now you would have these symptoms and signs.." But not if we've already been diagnosed and treated aggressively for a different disease surely??? X

Thanks for your sweet and reassuring words Twitchy and as usual you make a lot of sense to me. It's just a shame the powers that be don't see things our way. I have always said, if these doctors listened more to us patients and took us seriously, we could teach them far more than any medical journal. A whole new breakthrough in medical science would be achieved.

What I don't get is when you almost certainly have a condition which is being treated by one doctor, you also have several of the symptoms associated with the disorder but other doctors will still try and dismiss it and tell you it's not connected. Almost like having a cold and being told the runny nose is not connected to the cold it's something else.

Even worse than that is a doctor of another speciality telling you you don't have something that has been diagnosed by it's specialist. You wouldn't find a dermatologist telling you you have bowel cancer or a gastro doc telling you you don't have a brain tumour so why do some doctors feel they know all about autoimmune CTD ?

Sorry, I'm going off on one again but it really frustrates me.

Anyway, I hope all has been well with you lately and you haven't suffered too much. X

Hidden in reply to Georgie-girl

Oh heck. It's so weird that you should say all this SAS stuff just now.

I'm back on island home for a final month. I always felt that my diagnosis of RA was incorrect and I was right. For about four years now I've felt sure that I had a combination of Scleroderma and Sjögren's. The first rheumy said I might have this but for now it's RA Second rheumy -a prof said I had RA with secondary Raynauds and Sjögren's and the secondaries would only ever be a severe nuisance. The RA was the thing. He said burning and freezing in hands and feet was Raynauds so forget neuropathy idea. My rheumy said he was sure I had small fibre neuropathy not Raynauds. Anyway nifedipine gave me "scurvy" according to a dermo prof! Next derm said spider vein red spots on face was Rosacea and gave me cream. Not Scleroderma for sure.

Then I moved and saw rheumy no.3 who undiagnosed RA and told me I had no CTD. When I asked about first rheumy thinking Scleroderma was possible he snapped "you may well have RA but you certainly do not have Scleroderma!" as his parting shot.

Then last year I was rediagnosed by different rheumy with primary Sjögren's - took this on chin because it was summer but privately felt Scleroderma still on menu.

Then spoke to rheumy registrar who reluctantly agreed with my rationale that being aggressively treated for early RA could have flattened Scleroderma equally well.

So having nailfold test in 7 weeks time now. All okay in my mind - I've decided I don't have it at all - just Sjögren's. The nailfold test will be waste of time.

Then out of the blue all my fingertips turn hard, pitted and horrible two weeks ago. Same time my Raynauds really kicks off more. Raynauds only started with RA so it's definitely secondary but mild to my mind. So what's with the papier-mâché varnished hollow fingertips then?

My former GP studies them closely and is intrigued but entirely baffled so I'm told to rub betnovate on them twice a day. Is this really a good idea I wonder? I ask on Scleroderma international forum today and the admin messages saying lots of things can cause my symptoms so just have to be patient. Really, what else, apart from Scleroderma, makes fingertips turn to varnished papier-mâché?! She suggests I ask rheumy about the betnovate. I don't have another rheumy yet and if I phone who is going to believe or be interested that my fingertips have turned into varnished paper mache?!

Call me a hypochondriac but I'm starting to trust Dr Google over the "trust me I'm a doctor" brigade! Type in fingertips hard with pitting and get Scleroderma every time.

Quite proud as all typing has been achieved with side of pinky finger but thinking I may have to go quiet as typing with superglue fingers doesn't feel right - unless it's just dry fingers from the only confirmed CTD I so far have of course? - but what about the hardness, pitting and varnish - Blue Peter generation - paper scissors and paste me perhaps?! X

Crumbs. When I read stories like yours, Georgiegirl, I realise what an epic journey each one of us is on.

Maybe we have been unknowingly recruited on an intense SAS-style training programme, because goodness knows we get put through it!

So glad you are posting here again, though. We need to stick together. x

Thank you Whisper, we certainly do need to stick together.on our epic journeys.

We all seem so very different with varying symptoms yet really we're all fighting the same awful disease and quite often the doctors too. Sometimes I think I'd be better able to handle an intense SAS programme than this damn autoimmune thing.

Hope the cat lets you get some sleep tonight X


Hi Georgi girl, it's nice to see you back. I think we all visit dark places from time to time - it must be part and parcel of chronic ill health. I had a bit of a downer last summer and decided to self treat with some St Johns Wort - big mistake as it induced such huge photo sensitivity that the resulting severe neuropathy lasted for the entire summer!

I picked up on your mention of air trapping & small airways inflammation (bronchiolitis) - this is something that I now have but its not terribly common and I'm interested to hear how you manage it. I have an inhaler and annual PFT's but my breathing is bad currently and my next Respiratory appt in August seems a long time away.

Hope you quickly reap the benefits of the pred - it's wonderful stuff! 😃😃

Hi Clare and thank you. Sorry to hear you had a downer too. They just sort of creep up on you and then suddenly, boom! At the mo, I don't have anything to treat the air trapping with. I have complained for ages that I had breathing issues but no one took it seriously. Then my Rheumy sent me for a CT and there it was. I haven't seen my rheumy since and the GP I see while mine is away doesn't seem too concerned. I have made an appointment for next week to see another GP at the practice though to try get a referral to a respiratory specialist as I'm sure it's something that needs further investigation. I don't really know too much about it to be honest as things I have read are very conflicting and sometimes quite scary.

Funny enough my lung function tests were all ok so I don't know if that's good or bad.

So for the time being I'm just going to have to manage it with the pred and hope it helps.

Please keep me posted on your breathing and any progress etc and hope you get some relief soon.

I have read that PFTs are relatively insensitive for showing small airways air trapping. Mine showed initially on ct and now shows on PFT too but treatment is based almost entirely on getting the CTD under control. Inhalers are of limited value as only 30% gets to where it is needed so steroids & DMARDS are necessary and prompt antibiotic therapy when needed.

Do keep pushing for the referral, ideally to a resp doc who understands autoimmune conditions. Best wishes, Clare xx

Thanks so much for that reply Clare, it really helped me understand it all a bit better.

I will certainly push for a referral as it really does seem necessary and I don't think we should take any chances with our lungs.

Thanks again for your help and do please let me know how you get on. X

Sorry Clare I forgot to ask you. If you don't mind me asking, how long have you had the air trap problem and what were your first symptoms that made you seek help?

Mine started about 18months ago with what seemed like I was forgetting to breathe sometimes. Other times it was like I had to work to breathe rather than it being a natural thing. On a couple of occasions I would have trouble when lying flat but the worse thing was the feeling that I couldn't get enough air in. I woke a few nights gasping for breath. At first I put this down to my nasal congestion but eventually, along with all the other things, I started to realise something wasn't right. I even had x rays which showed nothing and were reported as normal. Again it seemed like me against the doctors. Still, I got there in the end.

Would love to hear your story. X

Identical signs. It started approx 2011 with a general worsening of all symptoms (weakness too), bouts of severe pleuritic pain mimicking PE. CTPA revealed lung shadows. I started to wake in the night gasping for air having not breathed for a while - a completely terrifying feeling of suffocation. I also couldn't/can't breathe well when flat or if anything weighed on my chest ie seatbelt, scarf. Referral to resp consultant in 2012 (private initially), spirometry was low normal ie 80% predicted but other specialised tests revealed significant resp muscle and diaphragmatic weakness. Coughing & laughing leave me empty of air, to be able to run across a road is a distant memory! Monitoring was then 3 monthly and picked up on the air trapping - I think the test is RV/TLC and mine is 154% which is quite bad. Not a great deal is known about Small Airways inflammation due to their remote location so treatment is based on relieving symptoms and minimising exacerbations - easier said than done. Respiratory medicine differs from rheumatology in that it encourages patient controlled, aggressive treatment - I'm not very good at getting it right! My spirometry is worse now but still better than those with COPD which affects large airways so I have to lay it on quite thick with my consultant or he just wouldn't see the struggle.

Also, lots of us get GERD or LPR (silent reflux) which is known to exacerbate lung/airway conditions.

Do you have a copy of your PFT's? I would suggest that you keep it and compare it with subsequent ones - doctors do miss things . . .Feel free to ask away - I will try to help as much as I can. Best of luck at your next appt xx

Hi Clare and thanks so much for all this useful information.

Sorry it took me so long to reply, been back in hospital. Had terrible chest pains going through to the back and thought it was lung related but turned out it was stomach related. As you said, reflux can make our breathing a lot worse.

I did see my GP about a referral to a specialist but she said she has written to my rheumy who ordered the CT in the first place, to see if he will follow it up if he thinks it necessary. Apparently, she said it is not always necessary.

Well I never!!

What was the test you mentioned that found the resp muscle and diaphragm muscle weakness? I think mine started with the diaphragm as I used to get pain in the area and severe bouts of hiccups but I was told I was being silly and if my diaphragm wasn't working I would not be breathing. I still get it but not quite sure what to do about it.

What is the treatment you take for yours, steroids? What dose and does it allow you any respite?

I'm so sorry for sounding like a dumb nut and for asking so many questions but this is all so new to me.

It's quite scary but I'm being told it's no big deal and I shouldn't worry. How ridiculous!!

Anyway, I'm pleased your doctor sounds like he is on top of things, although it is so unfair that you have to suffer and can't get to see him for ages. Is your GP much help in the meantime?

Thanks again Clare for your invaluable input. You have been a great help. Oh, and what is a RV/TLC? ;-)

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