C o p d stinks

I don’t post here very often, but I was wondering if others with this dreaded illness have found as time goes on more illnesses are being added to list and if so are they directly connected to c.o.p.d . I have very swollen feet and legs, have tablets to reduce water retention, severe cramps in almost all of my body waist down and fingers, bladder weakness and heart palpitations. It’s all getting a bit much to cope with. I am stage 4 with this horrid thing. I would be interested to know if others are suffering from any of these illnesses. I try to do things but am now struggling getting to other rooms needing to rest before attempting to journey back. I am feeling really down about it all it’s so frustrating. Sorry if this sounds like moaning, if nothing else it’s felt like I’ve had someone to talk to.

29 Replies

  • Moan as much as you want on here everyone else does best wishes kazz

  • Thank you made me smile

  • Thinking about you do come on her and provide updates and ring the helpline to make sure you’ve got everything you need to make things easier for you good night kazz xxx

  • Good night Alan and thank you again. Sleep well xx

  • I’m never far away from my I pad if you need someone to offload things to I know how you feel night god bless 🙂

  • Your very sweet Alan, take care x

  • Not a moan, an update. :) The forum is here for you to say how you feel. Some days we feel worse than others. I hope you have someone coordinating your care. Why not give the BLF helpline a ring on Monday (03000 030 555) and chat to one of the nurses/advisors there. They may be able to offer further support or some advice.

  • Thank you so much

  • Hey Kazz don't ever feel bad about posting a moan (sorry an 'update'😊) people on here are always so supportive. Im quite early stage COPD and Bronch amongst other things so havent your symptoms but it sounds like you're having a really tough time and I'm sure others will be along who understand better than me...But I thought I'd say hi anyway xx

  • Thank you so much xx

  • Hello kazz01 .

    You are not moaning. Goodness gracious and even if you were that's perfectly okay. I do it all the time and I don't have swollen feet and legs and horrendous cramps.

    Do you have a nurse visiting you? How do you manage to see the doctor? How about getting to the shops etc.?

    I am sorry things are so very hard at the moment. Please know we are here anytime you need to talk. It's important to do so I think.

    Sending gentle hugs.

    Cas xx 💗🌿💗

  • Thank you for your reply I have the option of having the lung nurses but have declined them at the moment, many more out there worse than me and resources short, I can ring them anytime I need them though. I don’t go out very often my daughter does get me out on the odd occasion when the weather permits, as for the dr bless them they come to me, which I’m eternally grateful for. Thank you again for your message and good wishes. I do hope this finds you well. xx

  • I am so glad the doctors come to you kazz01 and you have the option of the nurse coming if you ever need it. Thinking of you. Keep warm. xx 🌹

  • It does drag you down. I don't have problems with swelling but do have problems with bladder when oxygen drops. I am tired a lot of the time. I just try to make the best of it.

  • hi Kazz...I want you to know that I feel for you! I have the same symptoms as you. stage 4, 24/7 oxygen, anemia, very exhausted, just recently can’t walk more than 10’ without gasping. my legs are very weak and i have severe muscle cramps in my hands and ankles. really hurt! I was diagnosed in 2006 and been on O2 since 2012. I am just now starting to get slightly swollen ankles. Doc told me to watch the ankles/feet and if severe swelling he will drain. said it would be due to stress on the right side of the heart.

    I too have a racing heart beat. I just purchased a wheel chair but it is useless for me if I don’t have someone to push me. I live alone but have a bro and sis. Unfortunately, they are very busy so I have learned to accept the dreadful disease and just live one day at a time. sometimes I experience a lot of pain through my shoulder area but my doc has prescribed hydro morphine which helps a lot.

    The most important thing, now, is to have the best quality of life, so enjoy every pain free moment and count your blessings. i hope you will feel better soon. We have good days and then comes a nasty day. here’s to the good days! 🍾🍸 Jackie PS: I am almost 78.



  • Hi Kaz, I don't have swollen legs etc but have suffered cramps and found bananas helped, the sodium or is it potassium they contain.

    I'll compete with you! I've had copd for about 20 yrs and yes it stinks. I'm 67, end stage.

    on top I have a pair of hernias, bilateral inguinal caused by violent coughing about 10 years ago. Ie they are in my groins and since diagnosed I have been fibbed off with "they are not life threatening, but surgery could be, and not allowed repair. Now they are huge, swell up rock solid and put pressure on the colon beside the left hernia, sealing the colon 100%. UNLESS I am lying prone when gravity allows the hernia to retract. Otherwise just a tiny bit of wind gives me hell. I'm on 30mg Morphine twice a day.plus Oramorph to supplement. 2 yrs ago gp referred me for surgery, as high risk of strangulation. Surgeon said no general anaesthetic as I'd certainty not survive, but he thought hr might get away with using an epidural and do both together. But to check he sent me to his top anaesthetist, who vetoed epidural immediately and said only possible way would be doing one at a time just on a local. Even so it'd be very high risk and if I survived the surgery I'd have to survive weeks of recovery in hospital, avoiding ANY infections. Not promising.

    Back to surgeon and we came up with the solution that, if and when I felt I could o longer live with the pain and restrictions, i.e. when I had nothing to lose, he'd do the repair. What I have learned since, and what I bitterly resent, is that my local PCT policy was never to do hernia repairs unless life threatening. So what I was told, partly true, was not honest. I could have moved, asked for referral to another hosp and had repair long ago. Rant/off !

    I'm in hospital right now, such a scary place. For a week nobody knew my oxygen prescription and I was denied any higher rate than 2 litres/minute. I'm assessed as 4 lpm for activity but that was no longer in my notes and nobody would check with my oxygen nurse.

    I forgot to say, I've been bedridden since start of this year and my hamstrings so short I cannot straighten legs , knees are at hardly better than 90 degrees. Any attempt to stretch them causes great pain in left hernia, and I'm not risking further damage. I can only use bedpan lying on my side so that hernia does not block colon - it is simple gravity. But of course I'm told by knowledgeable HCAs that I could and should use commode and to emphasise their point they forcibly shove bedpan under. Likewise, I've discovered I'm lactose intolerant as it creates gas which inflates hernua to rock hard and it takes a day or more of massage, rolling to left, massage, roll to tight etc etc for hours until, a tiny bubble st s time, gas is passed sufficiently to restore equilibrium.

    I'm asked on assessments how many infections ive had in past year. None. None in previous year either. Simply because I reduce my contact with people as much as possible, and ban anyone with any bugs. Since being bedridden in late Dec 16, until my gp visited a couple of months ago, I had seen only 3 people face to face.

    I've resisted having carers on the grounds that I do not want the risk of infections brought in, especially by people visiting other sick and infectious patients. They can be carrying or starting an infection themselves that shows no symptoms for a few days. But I've had to relent this time, will have 3 a day. I prefer my independence.

    So, I take bets with myself as to which will get me - lungs or hernia, as they seem to be in cimpetition with each other. If they ever combine forces..... I'm not even going to think about that!

    BUT - the point of all this is not to brag / moan / witter about my ailments in relation to yours - it is to say take heart. I'm amazed at how I've accommodated all the changes, the declines, how I can cope with, live with, things that have come along without feeling beaten. The human body and the mind have incredible resources to deal with any situation. We are all naturally survivors and have powerful resources to handle whatever needs handling. Don't despair, don't think about what might happen and how you'll manage. Because you just will. Or maybe I should say your body will.

    All the very best and I do hope this has helped

  • Full of admiration for you offalot . I don`t have all your problems though like you I`m on 4lpm O2 for moving. Keep on coping with the hand you've been dealt the way you do. Good for you ! Sheila x

  • Thanks Sheila for the kind words. But admiration? Thanks, but hardly warranted- and I don't mean to seem to be rejecting your compliment. It's just that I'm amazed at how much it's possible to adapt to circumstances as and when they occur, regardless of how severe and of how impossible they seem. And not dueto my efforts, just to the body conjuring up ways that enable survival. It has kicked in every time. That deserves admiration.

    I wanted to put my situation on display so that others feeling anxious about the future, how they will cope, might learn to trust themselves and their bodies to do whatever is needed when it is needed. You can't plan, far too many variables. Anxiety is so draining debilitating, and does nothing to help you.

    Just take it easy! (I do wish that was simple - how do you 'do' relaxation, when it's really 'not doing' things that stress you, ignoring things on your mind. Life, eh. So complex, so contradictory - so I'll shut up now!

  • Beautifully said....🙏

  • My left ankle swells often, just my left for some reason. I ache all over most of the time and have heart palpitations constantly it feels. I never know what to blame as I’m at an age according to my Doc lol lol I’m only a baby at 58 I tell him. Him being about 12 xx

  • Just wanted to say my right arm swells up due to lymphadema, I'm having radiotherapy at present as I've had breast cancer, I also have copd and emphysema after having a lung removed due to lung cancer... I get lung and leg cramps, but I've found putting a bar of soap under the bottom sheet of the bed helps with leg cramps...keep smiling.

  • Hi Kaz, Reading through all your symptoms, I have them all too, its a battle every day. I am bedridden at the moment due to a bad infection. However, Kaz..i live on my own. I have good support from my Community Matron, do you have this in your area, or do you have a nurse that pops in to see you? I am on the lung transplant list for double lungs.

    The main reason I am getting this (if it's not too late!) Is Pulmonary rehab. I attend any classes I can, even if I can't do much I turn up and try...there is always something you will be able to do. I do exercises at home too. I eat all the right foods, take vitamins. With or without the transplant I am fighting COPD I am not going to allow it to change my attitude....you will know how hard that is.so Kaz please moan get it out, talk about it, that's important. Try to switch your thinking and find ways that will help you do not give in. There is no healing but you can do the best you can with what you have now and exercise will truly help you..it's fighting.

    I am really poorly too Kaz I am 62 so it is a fight. Please just try PR i know you will eventually get used to it and enjoy it, as you will be with others in the same boat. All the best.

  • Oh kazz that’s a lot to deal with. I know that many, including Pete, have many health problems running alongside COPD.

    I hope you get good healthcare and just want to wish you well. It’s good you can come and chat, we care a lot and you’re definitely not moaning.

    Take care xxxxx

  • Hi Kaz, its not easy with a ceaseless illness with many symptoms. I am finding now if I miss my inhalers I have massive muscle pain. Your cramp is possibly COPD as many on here say about this symptom but it could be something else causing it. COPD can effect how your heart works too. Maybe a chat to a BLF nurse as suggested , might help you or give you ideas on how to releive the cramp at least. A prpoblem shared is a problem halved as they say. enjoy your weekend as best you can.

  • I agree 100% with ross-35 Pulmonary Rehab is excellent, there will be some exercises that you will be able to do, it is SO SO IMPORTANT to keep moving as much as you can. I am 75 and end stage, I am virtually housebound and live on my own, but I do some exercise every day, some days I have to really force myself but I do it. I know how hard it is, but it's a case of use it or lose it. Have a word with your doctor or pulmonary nurse about PR it really does help, try to move as much as you can, even if is just walking slowly around the room. Take care and breath easy xxx

  • I also agree. If you don't fight back then it will overwhelm you. I was diagnosed 18 months ago with stage 3 copd (fev1 37%) but obviously I have had it for many years and without knowing have been fighting back all that time. I have had one day off work 14 years ago, for an injury, in the 31 years of being self-employed. Even when feeling under the weather I still went to work. I have always pushed myself without knowing just how hard I have been doing so. Nowadays I have to take time off for medical appointments, but that is all. I had 2 flare ups in the last year that I managed to go to work with.

    At 67 I am still working full-time, with no plans to retire. I firmly believe that keeping active over all those years has enabled me to continue to do so today. I also have narrowing of the arteries of the heart, PAH, Hypertension and Peripheral CVD below the waist. Yet I am still plowing on with work. I regularly walk 5 miles as well.

    I also regularly cause concern amongst the general public, with my puffing and panting like a steam train. Because they do not see people like us out and about normally.

    The regulars at my adopted "local" (a 2.5 mile walk) are accustomed to seeing me fall through their door, unable to speak for a few minutes; which is great, it makes me feel more like a normal person. I also know that I if I needed assistance they would help, the staff are also a very caring bunch too.

    I know all too well the feeling that I have been given a life sentence with hard labour, but I bounce back again, I have no other choice but to keep going. I have a greater fear of losing my independence and mobility than working hard to keep it, despite my illnesses. I also have the support and encouragement of my GP and Consultants, that I am doing the right things and to keep it up.

    As always, in sickness and in health, life is what you make it.

  • I am trying to tell people on here try alternative medicine keep taking your meds but do try acupunchre bet your condition improves greatly as mine has for the better

  • Kazz01,

    Though I'm getting around a bit better than you, it wasn't always like that and especially in the beginning five years ago, I felt like giving th' hell up. However, I remembered a few lessons from my days in the military 55 years ago, the main one being is if I didn't like the place (shape, income level, physical condition, etc.) I had two choices: 1) give up and let whatever it was roll over me, or 2) if I did give up, whatever it was would probably kill me anyway, so the best thing I could do would be to meet it head on and fight against it. That way, if it ended up killing me, I would know I'd battled against it and done my best.

    I'm still struggling...., but as I said, it's gotten much much better; but sometimes I get so damned exasperated I could scream..., and HAVE done just that a few times. I've also alienated a few people...., BUT......, I'm better than I was. To hell with the rest of it !!!

    I'm not gonna salve someone's ego so they won't see/hear my pain sometimes. Damnit!! I've lived long and hard and I get to scream a bit now and then. This ain't no dress rehearsal..., this is a one act play.

  • You have every right to moan and yes there does seem to be a collection off other conditions we suffer has time goes by lung disease is very much underrated by the medics xxxxxxxxxxxxx

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