Can anyone help?: Hi, anyone have problems with... - LUPUS UK

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Can anyone help?

mainlyconfused profile image
11 Replies

Hi, anyone have problems with (grim I know) phlegm? I was diagnosed last June but in the run up to this was suffering shortness of breath and loss of voice a year before that. ENT can't find anything and its still there. Gp can't shift it either. cold weather makes it worse too. I used to sing, but can't get any top notes. Any ideas? Could it be Lupus related?

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mainlyconfused profile image
mainlyconfused
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11 Replies
pattismith profile image
pattismith

Before l was diagnosed with Lupus, l had a severe case of Laryngitis, which lasted for 2 months, l had never had it before in my life, then followed by 2 chest infections.

field profile image
field

I love your user name, is sums up the frustration of this disease so well.

I suffer with breathlessness all the time, some days it is worse than others, but its always there, especially on exertion. My rhumy tells me this is a common lupus symptom, however, I do not expereince phlegm with mine.

I have not experienced the throat problem so cannot comment on this. However, you have to remember that lupus is a very mysterious and the most frustrating illness ever and can manifest as many different symptoms, Just because they cannot find anything doesn't mean its not lupus.

copdber profile image
copdber

I also suffer with breathing problems and have a chronic cough this lupus upsets everything in our bodies. Sometimes I need a short course of steroids to get me back on track. I thought being on plaquenil and imuran that it would be enough but still I need to use steroids. I'm also on a steroid inhaler.

mainlyconfused profile image
mainlyconfused

Thanks so much all. Its so frustrating, I've now given up choir which i loved. I'm due to see my lupus nurse again in a few weeks, I might see if she can suggest anything else. Thanks again, it's so nice to get some feedback.

happyfeet profile image
happyfeet

Hi, don't know what meds u r on, but three friends and family members have had similar problem. Drs had put them on ramapril and apparently it causes all the symptoms u describe. Am going to see dr next week as is happening to me amd is makimg it difficult to swallow. May not be answer for u but thought I would memtion it. Healthy wishes

Heatheric profile image
Heatheric

Just an idea for the symptoms - have you tried a steam inhalation? That can loosen phlegm and help with the breathing. There are quite a few essential oils that can help with congestion/catarrh such as cedarwood, eucalyptus and peppermint. Also, although you may not be able to sing to your previous standard, the breath control etc should be beneficial, so keep up with the singing. Good luck

MrsB2nd profile image
MrsB2nd

Hi

I have been diagnosed almost 2 yrs but the rheumy thinks I may have had mild Lupus for 34 yrs!!

My voice has changed and I too cannot sing now :( (I even made my son cry when he was younger once when I was singing along to the radio in the car!!! Ha ha!) I am so envious of people who can sing, I love it, and it saddens me that I can't now.

I often break into a coughing fit when talking or 'singing' with the children in my nursery.

I have episodes where I get very 'phlegmy'.

I don't really have breathing problems though, thank goodness.

Coppernob profile image
Coppernob

May not be relevant, Mainlyconfused, but I've had an intermittent dry cough and breathing issues for a couple of years. Got fobbed off and fobbed off until a bronchoscopy finally revealed a completely blocked right bronchus. ('See - I TOLD you I was ill'!) It's still blocked. It's a work in progress. They think it might be a form of chronic allergic pneumonia. I'm just saying, keep on at them about it, make sure it's fully investigated.

btw, I'm in a choir and love it - and I actually find the warm-up breathing exercises and the singing itself, plus moving about with choreography, help my chest and breathing.

Steam inhalation's probably a very good idea. I have a nebuliser with ventolin and saline nebules from the doc but steam inhalation (perhaps with a few drops of olbas oil) would be very effective too.

Also look at NAC (n-acetyl-cysteine) - amino acid very good for chest congestion. Solgar do it in tablets.

All the best.

I have a few overlapping conditions. Scleroderma can cause some of the issues you have noted. Have a look at the Raynauds and Scleroderma community and see if any of what they are saying makes sense.

Nightjar profile image
Nightjar

Hi Mainlyconfused, I had problems with blocked up sinuses (..also phlegm from chest) and took umpteen antibiotics 'cures' for years - which never cured it. I even had a tooth taken out, as they thought that was the culprit. It turned out the tooth was perfectly healthy, so wasn't very happy about that - though my problems did improve ..for a short while. The 'saga' went on for many years and it turned out, in my case, that the problem was due to allergies. I was particularly sensitive to wheat, dairy, synthetic 'sugars' and food additives(!) - but other things too, including various smells (dust, mould, smoke, perfume, petrol, some flowers), etc...

I finally got better with the help of homoeopathy and (not least!) changing my diet to organic. I also cut down on grain (includes pasta and rice!). Have also noticed that cutting down on sugar has helped. I do hope you can find out what is causing your problem. Good luck! xxx :)

mainlyconfused profile image
mainlyconfused

Some really useful advice. Im going to look everything mentioned, so a big thank you.

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