What’s wrong with me?: I am 74 and have... - British Lung Foun...

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What’s wrong with me?

Jeanrita
Jeanrita
24 Replies

I am 74 and have severe COPD and this is gradually getting worse. On a good day I can only walk a few yards but I resist using my scooter as much as possible.

Over recent years I have experienced flu like symptoms from time to time but they are now happening more often. I describe these episodes as if someone has turned off my energy tap leaving my body and brain totallly depleted. Keeping my eyes open is a real challenge as all I want to do is sleep. And I do. A lot.

My respiratory nurse does not think it is COPD related so I have requested a complete blood count from my GP. Easier said than done but I now have an appointment next week.

I wonder if it is M.E. or anaemia but this dreadful feeling of being totally wiped out is stopping me from doing anything.

Has anyone else experienced something similar? Spending what life I have in bed is not a great prospect,

JJ. Zzzzzzzzzzzzzzzzzzzzzzzz!

24 Replies
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peege

Hi there, I don't have copd but after a few years of the usual lung problems I be came extremely tired most of the time. IE a weekend doing something fun would take a week of rest to recover from. When I finally took this to the GP & I explained he immediately diagnosed CFS, chronic fatigue syndrome, no cure but you can manage it. I had expected low thyroid, a vitamin deficiency or anemia & a pill would fix it. When I looked up CFS I refused to believe it & carried on. Two years later after several stays in France helping with a 10 month old and pending wedding, I was still on the sofa after two months so finally twigged the doc was right.

There are several things the fatigue can be so I would get your GP to check every avenue. Good luck. P

ps the only way I survive a good quality of life is by pacing myself, saying no to invitations, eating and sleeping well........by the way, what's wrong with using your scooter if you have it? X

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Jeanrita
Jeanrita
in reply to peege

Thank you for your reply and this is what I meant by M.E.

If I have a good day and go out, it takes a day or two to recover. Everything I do I have to pace myself otherwise I’m exhausted.

I still hope it might be thyroid related, I only have half a thyroid, or anaemia but I totally identify with what you say. Thank you for taking the trouble to reply it is very much appreciated.

JJ

2 likes
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peege
peege
in reply to Jeanrita

Wow. Half a thyroid, I hope you have lots of checks for that. There are always vitamin deficiencies to get checked too as well as blood count for anemia. Wishing you all the best. P

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Jeanrita
Jeanrita
in reply to peege

Checks for thyroid? Only if I ask but they always come back as “normal”!

As for my scooter, under the advice of Use it or lose it, I feel I must walk as much as possible although I enjoy going out more in my scooter as I can breathe.

It also saves my husband putting it in and out of the car and he has his own health problems, recently diagnosed with cancer.

My philosophy is that you are lucky to reach 70, so many don’t but then you must expect your body to start to wear out and cause problems. However, this is becoming so disabling I need to know what it is. If it is CFS then I know I have to accept that.

Thank you very much for your response.

JJ

2 likes
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peege
peege
in reply to Jeanrita

I'm so sorry about your husband's recent diagnosis JJ, wishing him well too. P x

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cofdrop-UK

I hope you get some answers and start to feel better soon. I too get very fatigued, in fact I just fell asleep for a while after just going out locally.

Cx

1 like
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Jeanrita
Jeanrita
in reply to cofdrop-UK

Thanks.

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Hidden
Hidden

Hi Jeanrita

Don’t anticipate the worst, could be a flare-up or a virus or a chest infection. Ask for an earlier GP emergency appointment..so you get it sorted quickly. If more breathless than usual call emergency or go to A&E.

Drink a lot of fluids in the meantime xx

Fran

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Jeanrita
Jeanrita
in reply to Hidden

Hello,

I had a mild exacerbation a week or so ago and I am currently down to 10mgs of steroid daily. I am permanently on 5mgs as on no steroids my symptoms are much worse . However, it isn’t my poor breathing which is troubling me it is this total exhaustion. I woke at 6.30 fell asleep sitting up before 7.30 and have had 2 periods of sleep since then, both just propped up on a pillow. My eyes are wanting to shut again now despite tennis being on the TV, My favourite sport. Hope I’m awake when Rafa plays.

PS. I enjoy your posts.

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Hidden
Hidden
in reply to Jeanrita

Thank you Jeanrita

Yes I know how you feel so I am on daily steroids..well if you already had a mild exacerbation maybe the 10mg steroids didn’t do it..just a prompt check-up my dear Jeanrita..sometimes exhaustion is a sign of something brewing..well I don’t wish it on you of course and I am not a doctor but making you wait another week like that seems a bit much really!

Ahhhh you are a Rafa fan!! Well I am a Fed fan and utterly disappointed 😞 😃

Still I should switch it on shouldn’t I!! I’m laying on the bed with one eye on tv and the other one on a ghastly icelandic detective novel!! We are so good at multitasking! Truth is I have just had an almond Magnum defying all the rules and I feel wonderful 😃

Have a good afternoon Jeanrita xx

Fran

1 like
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Jeanrita
Jeanrita
in reply to Hidden

You made me raid the fridge for a magnum too!😋

I was on 30 mgs of steroid for a week then stepped down to 10 so I don’t think it is that. This has been ongoing for a long time but definitely getting worse.

As for getting a check up, I have no confidence in GP’s these days but luckily have had excellent care from the consultant and COPD nurse at the hospital. In fact it was the nurse who told me to get a complete blood count to see what is going on. Ha, ha, easier said then done.

Ring, ring, ring ring, ring ring......... .............

‘ good morning, I am coming in next week for a general check up in accordance with the letter you sent me and I would like to request a full blood count ‘

“You will get a blood test but your doctor must order a complete test and you will need to speak to him.

‘Fine, can you put me on the ring back list please’

“No, no spaces left today !”

‘ you’re joking’

“No”

‘Can I see a dr today?’

‘Nothing available I’m afraid’

Me, steam coming out of my ears ‘so I have to wait until next week?’

“Yes”

‘But the hospital has asked me to get this done and it seemed a good idea to get it done at my booked in appointment’

“ one moment”.............. conflab with someone.

“ ok, I will put a note on your file is there anything else I can help you with?”

🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬

And people wonder why we are all so dissatisfied with this new regime. Several gp practices have been closed locally and my practice now has 18000 patients and 13 doctors.

Have a good weekend, I hope you saw the marathon tennis yesterday, amazing. What skill and stamina. Should have been the final.

JJ

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Hidden
Hidden
in reply to Jeanrita

Morning Jean sounds like a conversation I’ve had before with what I call a pitbull receptionist 😂

Good for you to be insistent!!

Tell you a tip, surgeries hate when you go to A&E, it lowers their points, bonuses, whatever..

so I used to say courteously would you rather I called the on call or go to the walking centre...oh I’ve just found a spot for you at 11.15..

Take care xx

Fran

2 likes
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Dragonmum
Dragonmum
in reply to Hidden

Exactly what I had to do Fran - amazing how they can suddenly find a slot !!

1 like
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Yatzy
Yatzy
in reply to Jeanrita

I’m enjoying your dialogue repeats with GP surgery requests! Ha! So true! Fran’s advice usually works too....!

And yes, the match, both parts, fabulous....you did mean Rafa and Jock?? Missed the other marathon.

Enjoy the final today, and hope you’re feeling less tired soon.....could be post-viral, though the blood checks are still necessary. If I come off higher dose of steroids too quickly, I get awful fatigue...could sleep for England, but it passes. I have to remember to taper very slowly - and getting different GPS to prescribe so I can is another discussion time!! Wish they’d write it in my notes or something.

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Jeanrita
Jeanrita
in reply to Yatzy

The only consolation about being ill is that I can watch as much tennis as I want. And I do.

The other semi final was totally different, not the exciting play of Novak & Rafa but a base line slog and awesome serving.

How they remained standing I don’t know.

Steroids, I feel dreadful if I come off totally, I’ve reduced very slowly by 1 mg a week, yep, that slowly but I get to a point when I start to feel ill.

My consultant advised me to stay on 5 mgs a day which seems to work well so I will. I have no confidence in GPS and I stick with the hospital for my COPD. I ALSO HAVE A BRILLIANT COPD NURSE THERE.

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Dmactds

Well...., I just discovered that in all likelihood I have Polycythemia, which amounts to having an overabundance of red blood cells and creating a high viscosity of blood; which means I have "too much" blood and will probably need to get drained of a bit of it every few weeks. If it ain't one thing it's another.

You might ask for that test also because polycythemia does cause drowsiness and lethargy. Also, I'm 75 and emphysema can effect this blood condition and be affected by poly as well...

Duncan

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Jeanrita
Jeanrita
in reply to Dmactds

Thank you Duncan that’s a new one on me. I hope the draining works for you.

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1redkite

Hi, I am 76 contracted COPD in 2006, but am now rated as "severe" stage.

2 weeks ago (after hospital tests) I was given an ambulatory machine that extracts oxygen from the air. It is portable but have converted it to a "rucksack" as I found that is the least painful way of carrying it. Have used it twice and it does help with my breathing.

Apart from my reliever med, I also am on "Symbicort" and "Incruse Ellipta", which enable me to walk around the house, and go on short walks without the machine.

Might add I also have high blood pressure and borderline Type 2 diabetes, both of which only came to light when having my annual COPD checkup.

My advice (if your doc cannot help) is to seek an appointment with the COPD specialist at you hospital, as they will probably have come across your problems before.Good luck.

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Jeanrita
Jeanrita
in reply to 1redkite

I also have an ambulatory machine but have only used it a few times. I find it heavy to carry and it attracts too much attention but I guess I will have to use it more when I go out.

Great getting old isn’t it! LOL.😏😏😏

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Hacienda

Good Morning Jeanrita, only just come across your comment and the Helpful replies. Bear in Mind the lovely Heat we are having, which I think makes me Nod off earlier than usual. I don't have your Symptoms. I do have severe COPD and recently had Valves inserted as I await Lung Transplant. It was the "Scooter" that Flagged me, I too refuse to use it and Walk as Much as I can(I wear a FitBit for the Count of Steps everyday) even though its a few yards on Oxygen. I remember when I first got it and not being ofey with it , I ran into everyone LOL. Well since my "OP" I got a bit Cocky and decided I was fit enough to Walk on our Family Shopping Day...Bad Idea, I was on My Oxygen in no time. When the Mind is Willing and the Body Struggles, we must Listen to our Bodies. Luckily for me I have a Younger Hubby and he is there every step with me, ... He is Brilliant & patient with me. My Mum in Law who is still working at 73 and has never been ill in her Life is an Inspiration to me, as she too has Pushed me along in Wheel Chair, I do Offer her the same, but lend her my Walking Stick instead.. She too Nods off constantly at home and is in Bed by 8pm. We are all Different and Every day we wake up to This Glorious Weather and say Thank You for the Previous day. Sorry to go on, I do tend to. I do hope your Bloods are OK and your GP can give you a Solution for the Extreme Tiredness. Have a Good Weekend Hun. Lots of Love. Carolina xxxxx

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Jeanrita

Just seen this too, I’m not that familiar with this site- yet.

I have replied to the scooter comment to Peege.

Yes, we must be grateful for this gorgeous weather but I so want to go to the beach and swim but I can’t. Even though I can see it from our apartment. I have always loved the Water.

BTW, I love chatty posts.

JJ

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Nanny49

I experienced this terrible sleepiness too. Thought it was down to the COPD but on further investigation, I was found to have adrenal suppression brought about by the use of steroid inhaler. May be worth getting your adrenalin levels checked. Hope you find some answers soon.

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Jeanrita
Jeanrita
in reply to Nanny49

Thanks for the comments. I will look out for this.

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CLARAmay

Could you have sleep Apena

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