Low 02, chest pain, noisy breathing . Not been taken seriously. .

[DarcyCat]

Hello. My name is Suzanne and I'm 30 years old. I have M.E (chronic fatigue syndrome ) . At the end of November I was sent to hospital by my GP for a suspected pulmonary embolism. My oxygen levels were 87% and even though I was given oxygen (5 litres ) it didn't improve. I had a chest xray but apart from that I was basically left on a heaving ward for 3 days before being discharged with an 'infection '.

Since then I have seen the asthma nurse as I've been coughing up blood and been extremely breathless who changed my inhaler to the turbohaler plus steroids.

Everytime I finish my steroids my blood returns. My breathing is extremely noisy. She noticed 2 large polyps in my nose but my throat is constantly making a grating sound.

I am overweight and feel like nobody is willing to do anything or take me seriously because it's all been blamed on my bmi.

This last month I have completely lost my voice although I haven't had a sore throat. I'm exhausted constantly. My neck is stiff and really tender. I can't breathe when I'm asleep and I no i have undiagnosed sleep apnoea but again nobody is willing to help.

My lungs are full of vile tasting mucus that I can't cough up, my head is pounding, my finger monitor has my 02 levels at 85% and heart rate between 90 and 120 beats per minute. I feel like my airways are collapsed and every breath is an effort. I have no appetite at all.

How do I get help when all i get is everything blamed on my weight. All my glands in my neck are huge aswell.

[andyrrc]

HI Darcy I know how you feel in some ways I went through similar things with my mother on occasions. It is very hard when all seems to be going wrong and you are feeling helpless to get anything done to support you. You need to keep fighting for things and try and keep yourself strong, yes easy said I know. What is your GP doing to help, keep at him to get some more tests done as it seems there must be an underlying condition that is being hidden by the perception of bmi too high. You say you have ME do you have a specialist that deals with this - maybe you can put pressure on them to try and do something?

Not much help I know but here for you to rant at if you feel you want to.

Andrew

[DarcyCat]

Hi Andy. Thanks for your reply. As far as my GP practice goes the receptionist is always adamant I see the respiratory nurse rather than a doctor which isn't helping matters. I just have this gut feeling that something is really really wrong. Especially as I'm getting worse day to day rather than better. The only thing I can think of doing is presenting myself at a different hospital and hope they aren't as useless as the previous one. All I want to no is what is wrong with me because as you can imagine my mind is now thinking the worst.

[sassy59]

Hi Darcy, maybe give the BLF helpline a call during office hours Monday to Friday on 03000 030 555. They may be able to help.

Good luck to you. Xxxxx

[DarcyCat in reply to sassy59]

Thanks I'll do that 😊

[cofdrop-UK]

Hi DarcyCat and welcome

It is not up to the receptionist who you see and you don’t have to explain to s/he either. If you want to see a GP then you have to be assertive and polite and make sure that’s what you get.

Good luck - let us know how you get on.

Cx

[andyrrc in reply to cofdrop-UK]

Absolutely right - I think some receptionists actual think they are doctors the way try and dictate

[Lilmo1 in reply to andyrrc]

You took them words directly from my mouth. I have said our receptionists think they're doctors defiantly. Example..i had 4 courses of antibiotics recently for 2 bugs i had diagnosed and an ongoing chest infection all that many and only cleared it for a week or two so when i asked a receptionist to order me another course as its back SHE said no you'll have to see a doctor told her I'd very recently finished 4 courses still no was her reply. But when i asked at a time before this for a script for antibiotic for my hubby he got it no bothered. One rule for one different rule for another. I never do take antibiotics as it always clears up itself but jus not this time.

[Hidden]

Hello, I’m sorry you are not well and obviously very anxious. I feel maybe you should perhaps find a sympathetic doctor who will sort out your problems and reassure you. It is very frightening when we know something is wrong and we feel so poorly. Try ( it’s very difficult) to not get stressed as being anxious just makes everything worse. Do find a doctor or hospital who WILL help you. I wish you all the best.

[Carnival567]

I agree with cofdrop and Andy. It is not up to the receptionist to tell you who you can see. Also, if you feel as though your bmi is making the doctors ignore you then bring that topic up so you can clear the air. However, if you are overweight it is not helping you, so you could also ask for help to lose weight. You do seem to be rather self conscious about your size - are you on steroids because they don't help. I do hope you get the help you need soon. Those receptionists are bullying you, and I know from experience that the only way you will get what you need is to be assertive. I wish you all the luck in the world, and hope you feel better soon xx

[Sillysausage234]

Hi,Foul taste possibly oral candidiasis?fungal infection caused by steroid inhalers maybe

[rossie1942]

The sad fact is that you are not going to get any help until you change your doctor. In my experience some doctors once they make a diagnosis lose interest. Write down what you have posted here and show it to new gp. Good luck

[DarcyCat in reply to rossie1942]

Thanks everyone for your replies. I wanted to point out iwas overweight in my opening post as that is what people are focusing on.

You are correct that I have a huge thrush infection since November. I've been on repeated courses of nystan and canestan to no avail.

The receptionist here take all your symptoms and decide who you should see. It's a new thing the surgery are doing and is causing alot of problems.

I had an excellent gp who sadly left last year so I haven't found a doctor yet that's understanding. Maybe changing practice completely is the way to go.

I've packed ahospital bag and plan just to turn up when it's getting to the point of being to much

[Sillysausage234]

Have you tried a course of flucanazole?if your thrush is out of control,also do you have a nurse practitioner as I find they give you more time than a g.p.

[andyrrc in reply to Sillysausage234]

Alan is correct and I am surprised that the doc has not given flucanazole one 150mg pill usually does it for me and I get it every time I have steroids.

[DarcyCat]

Is that the tablet? I can't have that because it interacts with my regular medication 😊

[Sillysausage234 in reply to DarcyCat]

Yes it’s usually 50 mg a day for 7 days normally, thrush gets really nasty I had the same problem countless nystan courses in the end only after hounding the g.p.i had an endoscopy and the oral thrush had turned into oesophageal candidiasis very nasty symptoms like yours ,the specialist said it is caused by not using a spacer device with the steroid inhalers the treatment plan was 2 weeks then after that failed a months then 2 months cleared it eventually.

[DarcyCat in reply to Sillysausage234]

Wow I didn't realise it could get down your osphagus, just done a quick search and it definitely sounds like that's quite possibly happened in my case.

I will call the gp when they open and demand a doctor because I really need this sorted.

Thanks again

[Sillysausage234 in reply to DarcyCat]

Good luck it does cause horrendous chest pain and leaves you s.o.b. Looks like little septic blisters on the camera,such relief when it’s gone 😊

[DarcyCat]

I don't have a spacer either. I was just advised to have a drink after use but since been on the sybicort turbohaler my thrush is absolutely awful

[Sillysausage234 in reply to DarcyCat]

You need one a spacer device not the little blue aero sure one either they are no good,unfortunately hope you get to grips with it soon as it makes you really ill,if left untreated 🤞

[DarcyCat in reply to Sillysausage234]

I can imagine. I'm already convinced I'm dying. I've just seen it can develop into a fungal ball in the lung 😕 I tick all the symptoms so will definitely stomp my feet and demand it's sorted

[Sillysausage234 in reply to DarcyCat]

ask for an endoscopy ,best wishes,hope you sort it soon.

[DarcyCat in reply to Sillysausage234]

Thanks Alan you have been a huge help 😊

[Sillysausage234 in reply to DarcyCat]

I’m no expert but when I read your symptoms and the despair your in I can relate to that good luck do hope you let us know how you get on👍

[Sillysausage234 in reply to DarcyCat]

Don’t worry yourself too much,and google can do that I think it only goes in the lung with h.i.v. Patients for example.

[anng1814]

Hi DarcyCat,

I think Alan has given you really good advice.

I also wanted to add, have you asked the ME society about this? It is annoying for you that your good Doctor has left and you almost have to start over again trying to explain both ME and your lung problems. Yes, Doctors can be quite disgusting when your BMI is higher than it should be. I am very slim, but my daughter has PCOS and finds it very difficult to lose weight. When I've been to the doctors with her, I am almost accused of being critical as I am thin and they seem to think it is for vanity reasons I have taken her to the doctors. Another doctor told her, recently, to stop watching X-factor and move around more. This was extremely insulting, as she has two small boys and has no choice but to move around a lot. She does not sit around eating all day!

Both ME and steroids can make you feel very tired, but from a very limited knowledge I have, you are more prone to throat infections and viral illnesses than most people, without ME. Do insist on a Doctor's appointment. You really do not need all this hassle when you are so unwell.

Take care.