copd difficulty

[Yvonneh1234]

I’ve got copd emphysema I’m on trilogy inhaler and blue subutamal inhaler I have a lot of aching at the bottom of lungs an diaphragm on a regular basis I do get breathless on stairs is there any other meds that can help? It really gets me down at times I’m 44 an feel like no one is helping I also need to lose weight but some days it’s a task just doing normal everyday things .thankyou in advance for any replies

[Yvonneh1234]

I’m also new to this forum so don’t no what to expect

[Annscottie]

Hi Yvonne. I have had severe COPD since 2010. I think you need to go back to your GP if you are having pain in your lungs. You could also ask for a referral to Pulmonary Rehabilitation which is a set of classes for people with lung problems. PR should educate, help and give you confidence to cope with your new diagnosis.

There is also a lot of information here : asthmaandlung.org.uk/condit...

The GP might also be able to refer you to a dietician to help with weight loss.

When first diagnosed it can be quite overwhelming but this forum is very supportive. Maybe others will come along and have different suggestions.

Best wishes to you.

[Yvonneh1234 in reply to Annscottie]

Thankyou for your kind words xx

[Yvonneh1234 in reply to Annscottie]

I find it very overwhelming tbh I just want to be able do everyday things with my son without the aching feeling or breathlessness xx

[Annscottie in reply to Yvonneh1234]

Yvonne, Did you know that Asthma + Lung UK have a helpline?

You can get in touch by phone, email or whatsapp.

This is the page with information about the helpline - scroll down to the bottom asthmaandlung.org.uk/helpline

[Patk1 in reply to Annscottie]

0300 222 5800

[Spacecat1]

Have a word with gp about nebuliser for the ho.e. and inhaler

[Bevvy]

As suggested speak to your gp about a referral for pulmonary rehab course. There you will learn how best to take care of yourself and also how to exercise safely. PR is a class you take twice a week for a number of weeks and is run by people such as respiratory physios or nurses. It is well worth it.

[Patk1]

Read up on aluk website : controlled breathing.it does help with stairs,walking etc.slow down to a speed u can breathe easier x

[Yvonneh1234 in reply to Patk1]

Will look that up Thankyou xx

[CyprusPat]

I also have emphysema so on a personal note I’ve found subutamal makes my breathing worse so I use atrovent if I need it. I don’t have any experience with trilogy. A visit to the doctor would be a good idea.

[Yvonneh1234 in reply to CyprusPat]

Yes subutamal makes me have heart palpitations but gp say use it less Thankyou for advice xx

[Mellywelly]

Hi, sounds like you need different medication to try and it can take a bit of time to find the one that suits you best. If only one medication treated everyone, life would be so much simpler. I am still trying different ones and due to try one 22nd of this month. I have my fingers crossed for you and me. Good luck chook 👍 😉

[Yvonneh1234 in reply to Mellywelly]

It’s only recently the aching pain my gp seems reluctant to change any meds for me all they say is your quite young to have it the amount of times I’ve heard that 🙄 I will try again with gp this time I might say I feel like I’ve been fighting with Mike Tyson can you help 😂thankyou for advice xx

[Nitroblonde20]

Regarding your weight which you don't need me to tell you doesn't help I saw on the news that they are introducing an injection once a month into the uk to help you loose weight I can't remember the name but ask your gp about it its worth asking x

[Ergendl]

Consider joining a singing for lung health group or learning diaphragm exercises to help strengthen the muscles involved in breathing.

[Izb1]

Hi Yvonneh1234 and welcome to the site. I would do as others have suggested and go back to your gp for treatment. The weather seems to be against us at the moment but a walk round the block everyday really helps not only your body but mind as well, you can increase this every week without it being a chore . I nearly always meet somebody and have a chat x

[50shadesofgrey]

hi and welcome, I’m new here and new to emphysema, I asked my doctor to refer me to pulmonary rehab and had a call Thursday so just waiting now for date. I also need to lose weight and at first when I was diagnosed I became very lazy as I thought because I was getting breathless it was best not to do a lot. This site made me aware that keep moving was good for you so I’ve bought me a cheap smart watch and joined in a local radio station to get sponsored to raise money for kids who are less fortunate (cash 4 kids) it’s get fit in 4 weeks and I just have to do 30minutes a day of any form of exercise like dancing, walking anything as long as I’m moving. I’ve lost 2.5 kg in the last 3 weeks and feel better for it. I’m now starting the couch to 5k nhs app. I hope you can get the pain sorted and then hopefully you too can start your new journey like me, I’ve just got to get the pains in my legs and knees sorted now, the joys of getting older 🤣

[Yvonneh1234 in reply to 50shadesofgrey]

That’s great congratulations on your hard work 😊 hoping to get the pain sorted an start light exercise asap I need to roughly lose around 2 stone im just over 12 stone atm .i was just over 9 stone until I found out I had copd an stopped smoking then I just ballooned ,I hope my journey is as successful as yours☺️ Thankyou for advice xxx

[Patk1 in reply to 50shadesofgrey]

That's great 50shadesofgrey x

[50shadesofgrey in reply to Patk1]

Hi pat, it’s all thanks to you, you was the first that answered my posting and you said to stay active. I got very lazy I thought because I got breathless I shouldn’t do a lot but you told me to stay active and I did. Thanks pat xx

[Patk1 in reply to 50shadesofgrey]

Xxx

[leo60]

Hi Yvonneh and welcome 😊 I would also say go back to your GP. Ask about the pain in your lungs, pulmonary rehabilitation and changing medication. I was on Trelegy, which was great for a while, but have moved on to Trimbow and not looked back! We all respond to medication in different ways, just to say there is other medication out there. They will try you on an environmentally friendly one first, but if it doesn’t work for you then ask to change.

Hopefully better weather will help us all! Xx

[Yvonneh1234 in reply to leo60]

Hi when I’ve asked about pain in lungs I just get told you’ve got emphysema there’s no cure ,my g p also say s apparently the trilogy inhaler one of the best to be on ? I don’t really no much about it except I feel a failure as a parent as I can’t even run around with my son who’s disabled ive done p rehabilitation before but due to family having covid had to stop going then they changed the time to school time so I couldn’t make it there Thankyou for your kind response xxx

An yes I can’t wait for better weather too for anyone with respiratory conditions ☺️

[leo60 in reply to Yvonneh1234]

Ask for PR again and as Timberman says, you must be referred to a consultant and don’t take no for an answer 😘 It’s not curable but you can have a reasonable quality of life if you are looked after properly.

Good luck and you are not a bad mum btw! Xx

[Yvonneh1234 in reply to leo60]

Aww Thankyou I have posted an update xx

[Timberman]

Hi Yvonne - its hard to give advice since our cases are all so very different. But there is one thing - have you seen a fully qualified COPD specialist yet?

It is a very specific area and your GP is exactly that a 'General' Practitioner. He or she cannot know enough of any one disease to be the best line of help. You need to be referred. Then, when your meds have been better suited to your needs you want to be sure and get into touch with the local COPD team. They are the nursing experts in your field and can work near miracle in improving your lot.

In particular they should refer you for a Pulmonary Rehabilitation Course - this is a 12 week course of two hour sessions of exercise and advice delivered by skilled nurses, physiotherapists and health professionals. I

I do not know your weight but I would urge you to get as close to your best BMI as you can - you can work this out on line using your height and weight; its is not an exact science but a vert good guide to what you should aim for.

By the way, I am 80, have had emphysema and bronchiectasis for 15-20 years, used to be a smoker until age 50, have a genetic history of the disease; I am also a leukemia survivor and have congestive heart failure. And I just got back from scootering round for coffee at the Fox and Herb and doing some shopping.... life is not so bad!

[Yvonneh1234 in reply to Timberman]

Can I ask to see a copd specialist from my gp?The last I heard from specialist was when I was diagnosed with copd emphysema an it was a telephone consultation due to COVID 2021 she discharged me and told my gp change inhaler to trelogy since then I have yearly checks at gp and they just give me antibiotics or steroids if I have a chest infection .my mum and brother both had copd but have since past but they didn’t really discuss things . . .you sound like an inspiration to us all Thankyou for your advice and kind words xx

[Timberman in reply to Yvonneh1234]

Glad it helps. I am surprised your consultant signed you off; COPD does not go away and is not curable. Do you have a COPD/Asthma service in your health area? If so try to contact them. I use them all the time and they are brilliant and really understand our disease.

[Yvonneh1234 in reply to Timberman]

I’m not sure I will try trace on local Thankyou xx

[Alberta56]

Lots of good ideas here. I'd say just try to get walking again very gently. After my heart attack I was urged by the nurses to walk just a little bit each day, so I started going to the post box and back (hanging on to husband) , which is about 100 yards from my home. Before too long I could do 150 yards and gradually more and more. Stairs are much less of a problem once you're a bit fitter. Best wishes.

[Yvonneh1234 in reply to Alberta56]

Thankyou for your kind words I’ve just had a chest infection so hopefully things will improve an hopefully get an appointment with gp xx

[Fruitfiend]

Hi Yvonne ,I had exactly that problem a very painful diaphragm it hurt to touch even as for lifting it was agony couldn't breath ,well my doctor sent me for upper gi tests they were clear I worked it out it was constipation, as my stomach was rock hard ,I have diverticular disease nut had never had this side of if,,now I never eat a whole meal just little and often the relief was amazing,i

[Yvonneh1234]

thankyou everyone for your kind words an advise ive tryed to get in with gp but apparently no appointments for 3weeks so I will keep trying and update with anything new xxx

[Timberman]

Hi Yvonne, I do so feel for you. I am 80 now and probably in a worse state but the thing that really gets to me is how hard it is to get any real exercise. And without that, only a virtual starvation diet will shift the weight.

A few years back I managed to lose 17 kilos but a few are back and I am now about 20 kilos over weight at 103. I know how much it would help to get it off but as you know we have few pleasures in life these days; eating remains one of them! I am off the alcohol and have drastically cut back on sugar (although drinks remains a problem!). If you have any ideas I'd be glad to hear them!

[Yvonneh1234]

I think my problem is I don’t eat most of the day due to seeing to disabled son by the time I eat it’s usually late and then it’s shower n bed 😂I’m terrible for coffee although I take sweetener now instead of sugar but it’s what gets me threw the day . . . At least that’s what I tell myself 😊xxxxx

[Yvonneh1234]

hi just an update😊

Finally got in with gp ! I was sent to a n e for X-ray n bloods gp thought I’d got pleurisy after nearly 7 hours I got told it was strained muscles threw coughing and having a chest infection doctors said X-ray was ok an my stats were quite good considering.i also asked gp about referral back to copd clinic which in the area I live is called respiratory clinic at the main hospital he said I don’t need to be referred as with the gp? So think I hit a brick wall there 🙄 on the other hand I went out today and walked round shops with partner and daughter I haven’t done that for weeks so I was pleased to get out for an hour . . . Next is going for short walks a see how I get on I also suffer with extreme anxiety ( had this since early teens )going outside in crowded places an such so this is a big jump for me 😊 I just want to thank everyone for there kind words an support I’ve been given over the last few weeks it really touched me that people can live with this disease hopefully I’m on the right track an going go slow a steady an get abit fitter aswell I will update any information or anything new Thankyou all again

Yvonne 💕

[leo60 in reply to Yvonneh1234]

Hey! You sound much more positive, that’s great! Short walks sounds good, can build on that especially with nicer weather on it’s way.

The referral, or lack of, is a pain, I’m not sure how to get round that, but keep on at them!!

You will get there xx

[Yvonneh1234 in reply to leo60]

I will be honest my doctors are shocking it’s took me ringing every day to be on hold for 45 minutes that they haven’t got appointment’s . . . They don’t seem want to no anymore an if you want to be referred you don’t stand a chance so I don’t no how I’m going to get there 🙄 just trying to stay positive tbh me moping around isn’t helping anyone especially my little boy I’m feeling a little better now I thinkthe pain n aching was really getting to me Thankyou for your advice and support 💕xx

[leo60 in reply to Yvonneh1234]

You are right, and you do sound more positive 😊 Glad you’re feeling a bit better.

Here anytime xx