End of my rope

[challny]

I can't breathe. I just can't breathe. I mean, I can suck in some air, just not enough to satisfy me. I want it to end. I'm sucking on my rescue inhaler all the time. None of it helps. I think I've learned through this forum that nothing helps with emphysema. You might see some changes with chronic bronchitis and asthma, but emphysema seems to respond to nothing. I'm on 3 different inhalers. I exercise. That's a joke. Exercise does nothing. I walked 3.2 miles today, walked some dogs, mowed my yard then took a short bike ride. I've been doing this kind of thing for 2 years. It does nothing. I'm just getting worse. The exercise thing is a myth, as far as I'm concerned. Every single thought I have is breathing.

[mellyme]

Hello, friend. Sounds like a bad day. You, I believe, live in the path of a strong approaching tropical storm. The barometric pressure is crushing, and the incoming humidity will tax the lungs under the additional pressure. Avoid the imminent local heat, and forego the yard work and long walks through these times. You will find things loosen up once the storm passes or veers off and away (the preferred choice). Keep the chin up. It should pass, just like the storm. Don't let it give you stress as this will tense you up which is bad for our breathing. Keep us abreast, and stay dry.

[adapting in reply to mellyme]

hi challny, i don't know where you live but if this is true, i would have to agree it's the pressure, i have copd but live a normalish life, but when there's high pressure i am destroyed, feel similar to how you described, also my sinuses would be extremely painful. hope this helps and it's just a temporary thing!

[sassy59]

That sounds awful and frightening challny but you are breathing, ok not as well as you would like but even so.....

This forum exudes hope and help for everyone no matter what the problem so please take things easier when feeling like this and chat to us on the forum as and when you feel able.

Take care xxxxx

[knitter]

If you are using your rescue Ventolin all the time, and getting little relief....it means that your condition is not being controlled by your other medication.

please get professional medical help today, to get you over this crisis.

Then maybe your other inhalers can be reviewed.....I had to try a few before I found one that worked better.

Best wishes.

[tomc]

Knitters advice is a strong reply.

You nay be overdoing the exercise, your meds may not be right to full control your breathing.

I have found that when I get down fed up my breathing suffers, I know as everyone here does that if you take a negative attitude your breathing and general health feels worse.

See your GP and get an appointment with a respiratory consultant at hospital ALSO, sak about PR...Pulmonary rehab to learn how to control your breathing AND just as important the levels of exercise that is good for you.

In my opinion, you are overdoing things.. I I walk down three flights of stairs then jump on a bike then walk 2.5 miles then get back up three flights of stairs and do the hokey pokey in front of the telly AND survived... I would thank the lord claiming it as a miracle..

SEE GP, ask for hospital reassessment, Ask for PR (TO LEARN HOW TO BREATH and exercise PROPERLY eat good, work within your capability NOT YOUR EXPECTATION.

i COULD GO ON( I`m good at rabbiting as the song says " If your gonna do it, do it right!"🎹

[hypercat54]

Hi I am only mild but the thought of doing all that exercise makes me feel ill to start with. I wish I could do half of that. I know it's because I am over weight and unfit but you are doing well. x

[challny]

I'm hoping to see my GP soon, as I'm on my last Xanax pill and I don't know what would happen if I run out. The weird thing with the exercising is this: I feel like crap just sitting on the sofa, but I don't feel any worse if I go out and walk. Yesterday it was probably 95 degrees with extreme humidity and I walked 3.2 miles and my breathing was just the same as if I was sitting on the sofa. I hate to complain so much, but I've just been feeling so rotten lately. And as so many on this site have said, it is so hard for people without this disease to understand. So this is really the only outlet I have. Back in February, my FEV1 was 71 percent, according to my pulmonologist. What I fear is that it has dropped quite a bit since that time, despite my efforts to improve it. Has anybody's FEV1 dropped quickly? Maybe you shouldn't tell me. I am set to see her (pulmo) on the 20th. My other concern right now are these Xanax. I know I've become dependent on them. I've Googled that. If I don't get an appointment with my GP in like the next day or two, I could really be in for a rough ride. And I thank all of you who have taken the time to talk with me. As I noted, I have no one else who will listen. The last thing a healthy person wants to hear are your health problems.

[Hacienda in reply to challny]

Hi Challny, I may have appeared a bit short on my Comment recently. Skis and Other members have given you Valuable advise. We are all Different with our Lung's and some may suffer more. I do think that if your FEV is in the 70's then your exercise routine is passable. As I said it could be that your an Anxious Person, Anxiety does get to us all coping with our Disease. Your Consultant, Pulmonologist should be able to assess your inhalers, they may need changing. I take Symbicort 400, High in Steroids, Eklira, Both taken every 12 Hours and Ventolin Taken when Necessary . Along with Oxygen. My FEV1 is at 32% an increase of 2% through Valves and Exercise, Rehab, Gym, as for walking, I wear a FitBit to record my steps every day, which inspires me to do so. an example:Today , House Cleaning with Hubby, off to Lunch (Driving) Home, walk in the garden to tend to Flowers, so far I have done 2,399 Steps, I will do 5000 on my Exercise days and my Bike in doors, It may not look a Lot, but to me it gets better each day. Sorry to go on, But as I said we are all Different. We are Friends who help each Other. Good Luck my Dear. let us Know how you get on. xxxx

[challny in reply to Hacienda]

Hacienda, 5,000 steps are a lot! I read somewhere that a fitness goal is 10,000 steps. I think that might be for normal, healthy people. I think 10,000 steps is 5 miles. That's a lot of steps. Just a few months I was doing 5 mile walks, but not anymore. I had a 5-mile walk mapped out. Now I can do about 3. Up until recently I was also playing golf and sometimes walking 18 holes. I have not played for a couple of weeks now. It's been 3 weeks since I went to rehab. Before that I was going regularly for more than a year. The last time I went I actually JOGGED a half mile on the track. Not all at once, mind you, but jog one lap, walk some, jog another lap, walk some and so on. Five laps equals half a mile. That was just 3 weeks ago. Today I spent most of the day in bed. Something has really gone haywire in the last few weeks. Also used to track my 02 sats at rehab and they were always between 96 and 98, before, during and after. I wonder if everything could crash so suddenly in the span of a few weeks? It certainly feels that way. Anyway thanks so much for your replies and I do hope you ares getting better each day. I have nobody else with whom to talk about this. Even at my rehab, probably 98 percent of them are cardiac patients. And, as I'm sure almost everyone with this disease has experienced, you simply cannot talk to a healthy person about your problem. They just cannot grasp it at all. Heck, I was a healthy person until 2 years ago.

[Kristicats]

Hi challny I hope you really do not have the impression that nothing helps with emphysema ?Many people with similar and more severe emphysema than your good self have managed to improve their breathing and general health or keep it at the same level. I think the most important thing is being on the right inhalers. I’m on fostair inhaler twice daily and Spiriva Respimat inhaler once a day and never need to use a rescue inhaler. My Fev1 was 56% before being on these inhalers and is now stable around the level similar to yourself 70s. Perhaps you could have your medications reviewed? and ask your dr to refer you to pulmonary rehab were you will meet other people with emphysema and also get more support. Your posts show me that also this is a stressful time for you right now and I hope you will seek medical advice to sort out your breathing and anxiety . Good luck

[challny in reply to Kristicats]

Thanks so much for your reply, Chriskho. I have been enrolled in pulmonary rehab for some time. In fact, I completed the course and went into the maintenance program. This must be going on 2 years. I was very involved until the last couple of weeks. My program was 15 minutes walk on the track, 15 minutes on rowing machine (very difficult) and 15 minutes on stationary bike, plus some work on weight machines. This program I was/am in looks to me to consist of 95 percent cardiac paitents. Very few pulmonary patients. I liked the program and I still like it. I've just not been feeling well enough to go for the last couple of weeks. But I've still been walking. I try to do something every day.

[judg69]

Hi Challny, from my own experience, whether or not I am being active, exercising or just resting in my recliner, if I am relying on my rescue inhaler more than two or three times a day then it is time to see the Dr or go to the Emergency room , and to do It today. Sounds like you may well be in or going into a major flare or exacerbation . Please get to the hospital. All Best Wishes, judg69

[challny in reply to judg69]

Hello, judg69. I have an appointment with my pulmnologist on the 20th and will let her know what's going on. I think I can wait till then.

[Shadwell]

Well I think you are doing pretty well walked 3 miles mowed the lawn ECT ect wow wish I could do that look on the bright side seems like your doing ok

[barbs47]

Hi I have a definitive diagnosis of emphysema and can say that humity, storms,cold fronts, rain, heat etc definitely affect me and my breathing. I cannot answer for the other diseases under the COPD umberella. Hope this helps with your question. Barbs x

[challny]

Oh, I'm breathless. Very breathless. Not gasping for air, but just feeling like I'm not getting enough oxygen. I have been prescribed 3 inhalers, Symbicort, Spiriva and Ventolin. I use all of them. Until fairly recently I seldom used the Ventolin. Now I'm using it all the time. I think the numbers I was given were incorrect to begin with, or else I have had a rapid decline since February. It's so weird. Yesterday it was very hot, yet I mowed my lawn and took a 3-mile walk. But I felt bad the whole time. Yet I was able to do it. I go to pulmonologist Monday for a new breathing test. We will see what happens. For the first time, I'm beginning to think I might not have much time left.

[Hacienda]

Are you in USA? your Rehab is nothing like ours. You seem fit and able. Im on oxygen, and waiting Lung transplant, From your description of your Breathing, I feel very well, are you an Anxious person, if so, then that is probably your problem. See your Doctor .

[challny in reply to Hacienda]

Hi again Hacienda. How is rehab different here in the U.S. from over there?

[Hacienda in reply to challny]

Morning challny, Yes, the difference being here our Rehab is more Sit Down Chair exercises, and a Lot of patients are limited with other Disabilities, most are in the Older Age Group. I also go to Breathe Easy Group Exercise Classes, a little more upbeat but based on Rehab, Our Instructor is a Power Lifter/Physio. who has her own Gym of which I attend also, She has specialised machines added to the Norm, so us with lesser lung Power can Train on within our capabilities. I hope that answers your query Hun. Wishing you a Good Relaxed Calm Weekend. XXXX

[skischool]

Challny,

in my eyes you are a super hero to do all the exercise you do,i wish i could aspire to your physical prowess,listen to melleyme re the impending weather,barometric pressures,humidity et al.recently you say you split up with your partner,you have anxiety issues for which you are on medication i believe.this recipe of events

will probably lead to anxiety related breathlessness as Hacienda has mentioned.so perhaps time to discuss these issues with your Gp and respiratory consultant.and to cover those bases as redsox says maybe even get your ticker checked out.

best wishes Ski's and Scruffy

[challny]

Hello. I love and appreciate all your responses.

[challny]

When I was first diagnosed by my GP, who thinks I'm riddled with anxiety over this condition, he wanted to check out everything, so he wanted heart tests. I did an echo cardiogram and the results were given to a cardiologist, who though he saw something. So they set me up for a heart catheterization, which they did. I actually wanted them to find a blockage, but no. The dye shot through right away. I was home in a couple of hours. I think the heart doc said I had a slightly irregular but benign heart beat. Or something like that. All I can say is that I feel really bad. But, like I said, I see my pulmonologist on Monday and I will make it clear to her how poorly I have been feeling. I truly don't believe my breathing problems are weather related. It is very, very hot and humid where I love (the U.S. Gulf Coast) but I never really feel any worse after being out in it. I once asked my doctor about this. I said if I walk in hot weather and it makes it hard to breathe, will it actually worsen my condition, and she said no.

[Stumpy55]

Hello challny, I do understand your problems as I suffer Emphaseama, amongst other illnesses myself. Recently I was put on Trimbow to use two puffs twice daily with a spacer. I tried to get use to it for a couple of weeks, however my breathing became very severe, so I contacted my nurse and she has helped me to get back onto my nebuliser meds and seretide 500, she was really understanding, in fact she is better than my G.P now I can cope again. The thing is everyone is an individual, and what helps one hinders another. The worse thing with lung disease as everyone will agree is controlling your breathing, don't over do excercise and know when to rest. I agree with the others in their advice to you and they know with experience. So take a visit to your G.P to try and get the right meds for you and then you will feel less stressed which will make your breathing a lot easier. Take care of yourself Challny, and please stay Intouch with us? 🌹💐xx

[challny]

Thanks for your concern, Stump55. When I was at pulmonary rehab one of the nurses advocated pushing your limits with exercise. I guess I'm trying to do that. A couple of months ago I was doing a lot more than I am now. My meds are Symbicort, Spiriva and Ventolin. I'd ask for a change, but that seems to be a pretty standard combination. My breathing test Monday will probably reveal a lot. I'm rather frightened.

[Stumpy55 in reply to challny]

🤞take one day at a time challny, it won't do you any good getting all uptight. Please let us know how you get on? ✋️😉xx