Fibromyalgia Action UK

Breathing problem

Hi Having breathing problems not sure yet if sats wise or just local ie muscle or throat area?

But have trouble just just getting up a few stairs even sometimes it isn't quite so bad ish but wake up wheezy/short breath but makes my head hurt/balance etc type things too.

They always say "asthma" like a one trick pony but when went back to nurse at quacks before she no it isn't!

Could it be a Raynauds thing even have asked to be referred to the royal free as have a Raynauds clinic there did speak to Raynauds people before they said they can check on a one off or regular as needed.

Do have P tumor but they found a growth on my thyroid but said that it's working ok?

My lung cap has dropped as used to blow flow meter to end last year was getting 550/600 now at a real force got 500 other was lot less.

But have found since got put on Tgels my breathing got poor along with pains/pressure points as couldn't touch forearms and grip got worse found it would get worse for a while after putting Tgel on then not so really bad after a while but this has got bad since.

Endo just said we will give you another brand to try if that don't work we have another and another i said yeah then you will kill me!

Have a read up about Tgel problems and they say Estrogen is bad makes that sound like Candy!

7 Replies

One of the other problems Tgel gave me was gyneco increase as made them get leak again has p tumor gave me very high Prolactin which causes growth now bigger so need to wear support or get problems with nipples etc so never just rains! Pours instead?


I think you need to see a Dr. as soon as you can. If the Dr. you are seeing doesn't seem to be listening perhaps you need to see someone else. I have found in the past, some Dr. have difficulty in explaining why the symptoms your getting are not concerning them, which is a big problem when it's as serious as yours. Another Dr. may suggest seeing a new specialist or at least do some more tests &/ or a re-run of the ones you've already had.

I think it's appalling the way you have been left hanging like this. I hope you find some answers asap!! Tulip xx


I would advise that you see your GP as soon as possible, you need a proper check up, breathing problems should be taken very seriously. I'm no medic but see about having the thyroid checked out properly if you have a growth on the thyroid it must surely undermine production, mine was showing borderline hypothyroid and is being treated. All best wishes. Lou xx


Hi Oscarbravo,

Just a suggestion: Have you been tested for COPD. Pls go back to your GP and insist they listen to you. If they dont then If you can try and see another GP.

I do hope that you can find an answer.

Sending you lots of soft hugs :)

Elizabeth xxxxx


I am so genuinely sorry to read that you are struggling with your breathing like this and as an Asthmatic with COPD I would urge you to seek medical attention and investigation for this problem. I would make an appointment to see a different GP or if your breathing gets to a point whereby you are worried about your safety, then go to A&E or ring your out of hours doctor and get a ''walk-in centre'' appointment.

I want to genuinely and sincerely wish you all the best of luck with this issue.

All my hopes and dreams for you


1 like

Hi thank you all for replies and nice to think of me.

Did think of COPD but not brought up yet but hes going to look at breathing when go to Quacks this week and pain in belly always have just above/around belly button area if push on it.

Did Xray chest other day not heard till go there and did get letter from Endo said looks like don't have Cushions! but also proved didn't listen to what it said plus put things in never spoke to me about!

As did say to them that tried a very small amount of estrogen gel over few days after the T one which sort of improved my breathing! plus brought pains in pressure points down as before just touching say ribs was like being beaten or fore arms by elbow.

Said why can't we try something out for while and see how get on maybe they could "actually" learn something? bing ere NO just said not male and not conventional like hitting a brick wall did say not trying to stay on it but find a level etc that would be ok but which would help as we all know with these illnesses we have to find out what works for US/Each person.

But last time went to Endo's spoke to PALS about poor service got from them as one said take Tgel and tumor isn't causing problems and other said no need to take it's the tumor causing the hormones to be wrong so said it can't be both has to be one or other and making themselves look stupid! correct me if im wrong to complain but feel/felt not listening to me as it could be the way my body is wired it don't like high T? but unless they check it properly will never know as we are all different as many with fibro know what you get bad with it another won't.

One other thing that many get with Fibro is the coccyx pain/problem well guess what the E takes it away! so to me it's something new to learn and i like learning things.

they gave me another Tgel (Testim) but reading about tat in tests many of there punters fell by the wayside/died! so stopped test!

Fills me with confidence(read up about T hrt and problems it causes quite scary to be honest and many GP's won't leave you on it like with Statins)

But do think there's a link in it with my breathing and thinking could be airways as always bring up thick stuff.

The thyroid they said on ultrasound scan looked like they'd been a bleed and things on it ganglion's? or sound like that then at sit down chat/preach(actually the Doc was quite good) did say there is a growth on it but will monitor it but thyroid is showing ok now mind did have a test few years back where it was very low retested it and said ok.

But do wake up sort of wheezy/short of breath but when see Quack next hopefully get something sorted out.

But will let you know how get on! or not!


Well had a blow/flow/peak? test other day said don't think an obstruction and amount seemed ok i blew did say i used to blow it off end on flow meter years back as a racing cyclist so had good lung capacity/flow.

mind had a real bad headache while after.

But i am getting so short breathed all the time wake up like it some times.

got up other morning had to move some bits and clear kitchen as have them measuring up after a short while was really out of breath head spinning so had to sit down.

One other thing find apart from food sits on chest till next day is if saying sucking through a straw like used to need industrial suction for McDogburgers milk shakes back then(Don't touch MD now)my mouth becomes really sore for quite a long while.

One thing wondering about is as have Raynauds is Scleroderma problems?

The other is arcs/rads or whatever it's called(where's the Author when you need him! lol)did ask in hospital other day but they didn't have a clue as been exposed to chemicals(glyphosate)before.


You may also like...