Mild COPD/Tired

Hello,

I've always appreciated everyone's advice on here. I was diagnosed with mild COPD a year ago. I'm 37 years old. I feel constantly fatigued and breathless (like I can never get a proper breath). Feels like constant suffocation unless I just sit still, which is what I spend most days doing these days. I gave up smoking a year ago.

My oxygen sats are always around 98% so I'm not sure why I feel so breathless.

Should one feel this way with mild COPD? I do fear for how I'll feel in the future when this thing gets progressively worse if I'm already pretty tired and breathless in the very mild stage.

I'm fearful to make any big plans for the future since basically, through research, it looks like one basically slowly suffocates to death year after year.

[Puffthemagicdragon]

I'm in my mid 60's. I was diagnosed with very severe emphysema nearly 4 years ago. 98% is about normal for a healthy person .Mine is generally 93% at rest. I find that keeping active is the best way to deal with it. My condition has not deteriorated in those 4 years. Your lungs will only deteriorate the same as anyone else , that is through growing older. Just try and stay away from infections.

[Hidden in reply to Puffthemagicdragon]

I do need to work on being more active. I am overweight as well. It's difficult to find the energy to excersize but I could certainly try harder. Thank you for your reply.

[jayspurs]

Hi Suzipete,

Sorry your feeling not so good. I am mild copd with bronchiectasis (two lung disease's dont be jealous , I dont really get out of breath except when I am on the London Underground the air down there is horrid and I normally have a blast on my ventolin inhaler which seems to do the trick. I also take one puff of Symbicort a day. Do you take any medication ? If not then maybe you should go to the doctor's and advise him of your symptons. Your condition has very likely not worsened, but before you may have been completley Asymptonmatic (bad spelling) and now just having some symptoms) Your sats are better than mine which hoover around 96%. did you have a full lung function test or just the simple one at the doctor's as it would be handy to know your dlco/tlco as this can sometimes cause some people to become breathless. Do you do a stressful job this can also have an impact. I also get tired but I put this down to getting up at 5am and home at 6pm. but I try to get 8 hours minimum a night to keep the immune system in top shape.

I too for the last 2 months have been readiing every piece of academic research I could find on COPD and Broinchieactasis. Whils I 100% agree with you it is progressive, there has been very little in the way of studies carried out for people of our age with the disease. Doctor's are unsure of people like us becuase we are not so common if you exclude those with Alpha 1. Whilst our lungs are damaged we cannot deny this, because of our youth our bodies are a lot better a compensating for the loss of lung function that we have. Maybe as our bodies get older we will notice the difference more.

Keeping in good shape goes a long way to helping how you feel both mentally and physically, I know you can see from my previous posts how I have struggled. But I do feel good and my life remains the same other than me puffing on a few inhalers and eating better and doing far more excersise than I ever did before.

Ok so we may not last until we are 80, but I would be happy with 70, would you ?

Let us know about your meds.

All the best

Justin

[Hidden in reply to jayspurs]

Thank you very much for your reply Justin. I have had a spiro test and then three other ones that were less evasive in the doctor's office. They all suggested that I have maintained lung function. I'm not real clear on the numbers. I tried Spiriva for medication and it actually made me feel worse. I was more breathless and tight chested. I was only on it three weeks or so. That's another thing I'm unclear on is how log it takes for those medications to open up the airways? I'm going to a different doctor for a second opinion on everything in a couple of weeks because I constantly remain confused. I was also told that this will not affect my lifespan (I think you saw that post awhile back) and I just can't help but think that can't be accurate. Not with the research I've seen.

No, unfortunately 70 is still too young for me to be ok with but I understand it looks like I may not have the choice. I wish I could be more positive like you but I don't see much to look forward too with this disease. I don't look forward to the future anymore. I know the worst is coming.

Thank you so much again for your reply. I'm glad to hear you're carrying on so well.

[jayspurs in reply to Hidden]

Hey

I am really sorry, It really was not my intention to make things worse for you quite the contuary. I was just saying that us youngsters there is hardly any studies on us at all. It is quite possible for people of our age to go on until we are 80 or beyond, but it is very dependent on many factors, our overall health, any other conditions etc. I know how you feel I truly do. Another thing to consider is that testing for COPD has only really become prevelant over the last 10 years and testing people of our age is not common at all, what I am trying to say is that many people today approx 2.2 million are waliking around the UK with COPD but undiagnosed with 900,000 clinically diagnosed. So there is more than a highly likely chance of people diagnosed at 70-80 who have had this disease for 30-40 years this is based on the law of averages.

I think getting a 2nd opinion is the right thing to do, but I would go back to the doctor's and ask to try another medication. I think they do take a couple of weeks to kick in fully, but they should start to relieve your symptoms a little straight away.

Please don't be disheartned, I also know that a leading proffesor in the field Proffesor Peter Barnes who one of my freinds I met on here advised me on. Has recently found a molecule that may help in treating the actual inflamation as opposed to the the symptons is causes. I would suggest that a medical breakthrough is more than possible in the coming years.

Chin up

Justin

[Hidden in reply to jayspurs]

Oh not at all Justin! You helped very much! The diagnosis itself is depressing at times and I'm having one of those days about it but your responses are most valued. I truly thank you. I'm glad to have the support.

[1968 in reply to jayspurs]

Totally agree, in this time of medical technology we live in I do agree there will be a significant break through regarding Copd/Emphysema. Did we have this medical knowledge 5,10 or even 15 years ago, medical technology is evolving at a great speed so I guess all I can say is watch this space, did you hear the one about a surgeon growing an ear on someone's forehead? Or re producing internal organs? Well let's see what they come up with in say 5 yrs

[Hidden in reply to 1968]

I guess we can all hope 1968. Thank you for your reply.

[Puffthemagicdragon]

Have you been on a PR course ? Ask your doctor. Very beneficial.

[Hidden in reply to Puffthemagicdragon]

I have not been to a PR coarse but it is something I plan to talk to the doctor about. Thank you for mentioning it.

[Hidden]

Hi Suzi I am only a little bit worse than you but I find I can get very breathless on exertion too specially climbing the dreaded steps and hills. Do you take symbicort? This opens your airways. And use your blue ventolin inhaler more. It's also possible you have an undetected infection so I would go back to your doctors asap and tell them your symptoms.

I feel spiriva doesn't help me either and can make me more breathless but my doctor told me to keep taking it as it is a longer acting bronchilator then spiriva and will strenghten your lungs.

Good luck. x

[Hidden in reply to Hidden]

Thank you cough a lot!.

I did not know that Spiriva could strengthen the lungs. I'm glad to learn that. I only take a short acting inhailor on a as needed basis. I keep hearing positive things about Symbicort and plan to ask about it. Thanks for your reply.

[Hidden]

Hi Suzi, you have so much going for you. You are young, your sats are high, you have maintained your lung function !!!! Get your inhalers sorted, join a gym or take any regular excercise and you will be amazed at how much better you will feel. Good luck and take care !

[Hidden in reply to Hidden]

Thank you Argana, I do need to excersize more for certain. Appreciate your reply.

[SilverLady17 in reply to Hidden]

May I suggest getting a small dog. I have one which means taking him out 2/3 times a day. This is how I get my exercise, my copd is worse than your's & I am 64 but I do not have the same breathing problems you seem to have. I do agree that you need your meds reviewing you should not be so breathless if your's is mild, it sounds like you need to go back & keep going back till you get the right meds for you. That's what I do. By the way it was my specialist who said that having my dog to take out was more beneficial to me than going on one of those treadmills. Good luck I hope you get things sorted.

[Hidden in reply to SilverLady17]

Thank you SilverLady for your thoughtful reply! I actually have a small dog, I got her after being diagnosed. I walk her without any issues. Though I feel breathless I'm not breathless when I'm actually moving unless on stairs or uphill. I do constantly have the feeling of never getting enough air. Food makes the suffocation feeling worse. Just even one sip of coffee makes the suffocation feeling worse. I also have pressure feelings in my head throughout the day. It's all very strange and hard to describe. I'm guessing it's just apart of my diagnosis.

Thank you again for your thoughts and reply.

[Pietba]

Suzi your mind is your worst enemy - please read my posts and you will realize that I nearly gave up on life due to depresion whyen I was diagnozed. I feel fine now and sometimes feel a bit tired but that is after working in the garden for a whole day on weekends. I am 57 and also fairly overweight which I'm trying to get down now. I weigh 140 KG and is 1.87 Metres tall. I however followed a lead that someone has put on here and there may be a light at the end off the tunnel for all of us. Please follow the the lead I've posted here. I know however that clinical trials in the USA can take forever but with so many people effected by the disease I think they will do the best they can. dailymail.co.uk/health/arti...

[Hidden in reply to Pietba]

Thank you Pietba I agree about the mind being our worst enemy. I looked through some of your posts and can relate a great deal. Thank you for the wonderful link! That is very hopeful and amazing if it ends up working in humans! Thanks for that shot of hope. This illness really gets you down if you let it. Than you for helping me.

[sukee52]

I was diagnosed at age 16 with v mild COPD, (actually only called chronic bronchitis then) at age 18 had half my left lung removed. I am now 62 and have progressed to moderate. Tiredness can be a problem , all that effort needed to breathe, but I still am able to walk approx 7 miles a day, and with the help of the inhalers have a good life. I hope you get some good advice and help to make sure that you have as good a prognosis as possible.

[Hidden]

Thank you Sukee! Your story is very encouraging! You were awfully young to be dealing with this illness and to have a lung removed but it sounds like you didn't let it get you down. Thank you for sharing your story with me and for the reply!

[Pietba]

Wow Sukee - 46 years to progress from mild to Moderate - I will be 103 - I think the good Lord would have called me home for other reasons than COPD by then - It will simply be past my shelf life / Expiry date.

[lizgentrycharles]

Please get tested for Alpha-1 Antitrypsin Deficiency. It is a very rare but very bad genetic condition. I wish I'd been diagnosed at your age. If so, there is treatment.

[Hidden in reply to lizgentrycharles]

Hi Liz, I have been tested and it was negative for Alpha-1.

[onamission]

This is the worse time for anyone just being diagnosed thinking your alone, your not we are always hear.

My oxygen sats are always 98% this means oxygen is getting in I'm on a rehab course at the moment and i questioned this with the physiotherapist running the course and said I had seen a locum DR who did not want to give me antibiotics because my sats were ok she said this it means nothing.

[Hidden]

Thank you onamission for your reply. Was she suggesting that sats do not mean what they state or that it doesn't show a more underlying issue? Thank you again.