Help.. terrible night. What do I do next?

Hi, I hope you don't mind posting a bit of a panic post. I think I have scared myself and perhaps need some perspective!

Last night I woke up wheezing quite bad again (always on the inhale). It just wouldn't rest. Until eventually I took two paracetomal and my blue inhaler (Salbutamol). It really scared me. And I managed to cough up some brown mucus.

My situation at the moment is that Ive just had two rounds of antibiotics for a supposed sinus/ middle ear infection with painful eye, temple, jaw and ear pain (4 weeks). I have also just had an asthma test with reversibility. Ive had a year now of increasingly annoying and nagging dry cough/throat. The results showed a slight improvement but no significant result - so not asthma. Nor was an obstruction evident. But prescribed a steroidal inhaler as the nurse distinctly heard my wheeze. Suggestion of allergy (never had allergies before) and just had bloods done for this (waiting results).

I quite a few of the other symptoms of Sjorgen's. Dry eyes, sore eyes on movement, difficulty opening them in the morning, focussing problems. Dry nose, very very dry mouth. Im increasingly stiff on the morning or after having sat down for more than 5 mins. Sometimes its hard to write with a pen. I have peripheral never hyper excitability - constant twitching never goes. Muscle spasms - painful. The other night I got really sharp pain in my collar bone breathing for 3 hrs and then it faded. Then really sore back spasms.. I felt utterly exhausted in the afternoon. Loads of other things, I could go on...

But the wheezing scared me and is new thing perhaps over the last 3 months. I haven't got hold of the steroidal prescription but will get it today. I have a steroidal nose spray too. Im due to see the GP for results of general bloods tomorrow but if they come back normal does that mean the end of the line for any Sjorgen's diagnosis or should I push for specific tests? Does any of this sound like Sjorgen's? I just feel so convinced that it is reading and researching about it... but if the GP says my bloods look fine - what next?

I am so fed up of having one good day only to have many bad ones. Im so fed up of believing there is something else going on but my family looking at me as if I am just a hypochondriac!

Suggestions regarding the way forward would be fantastic. Im just feeling a bit at a loss this morning.

8 Replies

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  • Hi trueman,

    We're unable to say whether your symptoms could be the result of Sjogren's or not, but some of those that you have listed are common symptoms of that condition. There are specific tests for Sjogren's but I'm afraid I don't have much information about them. You may want to contact the British Sjogren's Syndrome Association (BSSA) for advice - bssa.uk.net/

  • Thank you. I will. I would like to be informed as to what tests specifically would rule in and rule out Sjorgen's. So I can ask the GP tomorrow. Also go armed with some information. I don't want to self diagnose but I feel like Im getting nowhere. I may return to some relative normality but can't cope with another flare like this. And also if I know, I can not bother you guys if I'm not showing results that suggests Sjorgen's!

  • It might be caused by gastro problems - it sounds crazy but if you suffer with acid reflux (which could be caused by antibiotics if nothing else!) the acid can get aspirated into the lungs, which isn't pleasant. Have you had difficulty swallowing lately, upper tummy pain, heartburn, chest discomfort, sore throat?

    The other thing that i could think of is angina - have you ever had angina episodes before? Is there anyone in your family with angina? It's unlikely to just happen out of the blue, I suppose but you don't mention whether you've checked your heart already and whether that's ok so far.

    I'm still more inclined towards the former suggestion, rather than the latter. Maybe see a gastroenterologist.

  • Thanks Purpletop. I have had gastric reflux for years. I am on tablets for that. Strong ones. My heart has been tested with a hotter monitor recently and no issues. I am 40. I was thinking post nasal drip with my nose being dry its all dripping backwards and into my lungs? And Im not clearing it well. For some reason. But the throat area seems like I get wheeze there too. It feels like something is obstructing it.

    Its frightened me anyway. The wheezing last night :(

  • I can imagine! Not being able to breathe properly is scary. I still think it is gastric, particularly when you mention that your throat area seems to be affected too. The strong acid tablets don't prevent gastric reflux in the long term, particularly as you've been on them for a long time. Also, they can cause heart problems if taken in periods longer than 2 weeks.

    I don't think that post nasal drip would cause the wheezing - not sufficiently acidic to damage.

    But I'm no doctor - get it seen to properly.

  • The wheezing would scare me too. Have you had a chest X-ray?

  • Sorry to hear of all your problems,I was diagnosed with sjogrens finally when I had under local anaesthetic a lip biopsy,it's taken from the salivary glands from the inner part of the lower lip,5 were taken and each one showed positive with whatever it was they were looking for,and then I was given a definite diagnosis. Sending my best wishes to you xxx

  • Hi Trueman

    You might have a chest infection if you coughed up coloured mucus. You need it checked out by your GP. X

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