Extreme fatigue, raspy voice
Posted , 8 users are following.
Hi all,
I was diagnosed with mild COPD a while back and I felt fine until this last month. Every day I am so tired, I could sleep all day. My pulse ox is 96-97. Breathing is a bit labored, but it is not too bad. I have read posts about fatigue, I guess it is inevitable. I am now very concerned about day to day life. It takes me about 90 min in the AM before I feel I can go out or do anything strenuous. I also have a raspy voice all the time.
Could anyone offer any comments or advice? If there is any, I guess I can't face it. I live alone so am in a bad position.
Thank you and so grateful for this group.
What helps? Anything? I dragged myself to the gym the other day, and do about 30 min on treadmill but did not feel better. I also feel like I am getting de conditioned.
1 like, 55 replies
james80978 maryterese
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maryterese james80978
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maryterese james80978
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aitarg35939 maryterese
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Several things can really affect the vocal cords & induce raspy voice. Since the cords are muscles, any med with a listed side effect of impact on muscles can affect the vocal cords. Both lipitor/statins & the inhaler mentioned by someone else which starts with "sp" [monitor removes brand names if used too many times] make my voice super rough & raspy. I refuse to use either for that reason (plus much worse effects from statins).
Coughing a lot also makes our voices raspy, as can gastral reflux, especially all the reflux that happens during sleep. More of that happens if we sleep on our side or stomach. As to coughing, learning to cough semi-silently helps delay total raspiness. If no one has taught this to you, it requires some of that mindfulness acqired from meditation suggested by someone else to pay complete attention when coughing til you've learned the technique:
Don't engage your v. cords with your cough. A cough is an exhalation & exhalations do not require vocal cords unless we intend to speak, sing. etc. But most of us learn to attach some sound to our dry coughs simply because when we open our mouth to exhale we're most often opening our mouths to make a sound, even if only a sigh or grunt. We begin learning this from birth (unless our caregiver was a mouthbreather). You're going to unlearn that. Eventually you may learn to do a lot of closed-mouth coughing.
If you're bringing up mucus, there may be sound from the passage of the mucus and i don't think we can change that, but you can still cut out added v. cord sound effects. If like me you also have Sjogren's, over time it becomes much harder to get that junk up. It now takes a lot of work for me to get it up and i sound like an old fashioned coffee percolator from the mucus moving around. I do most of the forceful work of forcing it up with closed mouth couging, else by now I'd have no voice left at all. I can no longer narrate Talking Books for Blind & Physically Handicapped nor can i do professional narration and voiceovers due to the unpredictable degrees of raspineas in my voice ... well, that & not being able to get as much air out of my lungs & all the frickin' coughing.
As to being exhausted, sleep issues are often a huge part of this. Many of us COPDs also have sleep apnea. If you haven't been checked, ask your doc. Many of us do a lot of sleep coughing and that also degrades the quality of our sleep. Anything that degrades the sleep quality increases exhaustion, and sometimes it's just a new dog next door that barks at each leaf that moves on a bush in its yard.
Many of us sleep with our head & chest raised a bit, either via some pillows or electric beds or blocks of wood under the legs of the head of our bed. If things are really bad with either breathing or heartburn*, I sleep in my recliner.
*I've almost eliminated this with diet and the PRN use of bitters, can't take the zillions of drugs invented to ease gastric results of american habit of vast overeating.
As to other suggestions about exercise, I concur. My ex has refused all my efforts to get out and walk more than 80' for at least 10 years. pulmonologists in my part of states, city of.million+, all take a fatalist aporoach about exercise and don't encourage us COPDs even to do inhouse walking. Even refused my suggestion that ex should be sent for rehab after a week in hospital due to resp. flareups. Stupid! It is true that if we don't use our bodies, our muscles deteriorate by the hour. So any exercise is good. I say kudos to you that you got yourself onto treadmill. Keep it up!
(You don't want to end up like my ex, who's now been sitting in front of the tv while sucking on oxygen 24/7 for 4+ yrs. I encourage him to stand up behind his recliner sofa (total American chubs we are!), hang onto sofa and walk in place for even 30 seconds x 3/day. If he did that until he could go 45 secs, 60 secs, etc., it would make him feel a hair less depressed, improve his rapidly deteriorating balance and perhaps he could work his way up to several minutes x 4/day. He forgets that walking, then marching, in place was the core of my recovery after 2 wks. in hosp, abdominal surg. followed by infection. He should recall as he actually bought me rubies &diamonds for surviving!)
So please don't follow the American fatalist attitude to COPDs exercising. Yes you'll become slower over the course of time. But if you can fix that seemingly sudden onset of exhaustion - that's what i got from your description - everything will be some degree of better.
Lastly on exhaustion: if you don't have apnea or other physiological sleep impairment, it's possible you're experiencing grief over your diagnosis. That's normal. Talking to other sufferers, especially those who emphasize helping ourselves, can help. In-person is wonderful, but online can help also. I know the latter can help because that was the only thing that was around to help me heal emotionally after I was attacked by a loose fight-trained pitbull in a vastly pro-pit part of the U.S. Non-sufferers often can only tolerate hearing just so much of our woes, which is why support groups exist. If the grief gets too deep or too prolonged, it can become depression. But i have great faith that just by reading our entries and positive suggestions, you'll feel just a little more hope today than yesterday. As with grief from death of a loved one or divorce or losing a job, the future life will be different ... but it will still be life. And one day somewhere in that future you'll find yourself here in one of your better days, sharing positive suggestions with someone else, or just supporting someone else emotionally on their bad day.
PM me if you want to talk more in private or daily, but okay if you don't want to. Am sending you all sorts of positive energy.
jude65855 aitarg35939
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I'm really interested to know what negative effects you experienced with the inhaler which led you to stop using it, because I've had only positive results for the 3 years I've been on it.
aitarg35939 jude65855
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I am however extra sensitive to meds both Rx and OTC. Learned long ago not to read side effects b4 taking new Rx so doc couldn't accuse me of bringing on the reaction myself. I would never have mentioned that if Maryterese weren't both recently on Sp. and experiencing new raspiness. I was so raspy on that stuff that people couldn't understand me on the phone, and my legs ached so much that i finally read the listed side effects and they mentioned both throat and muscle problems. I also had gut-effects which were also listed.
So for me the statins and that particular inhaler are equivalent: one threatened my mind and the other threatened my life via muscular side effects. Same thing.
Very glad Jyde that you brought up the thrush. I had it in the '90s. No one had ever told me to rinse my mouth after using the old azmacort.
jude65855 aitarg35939
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I do read up on negative effects before I have prescriptions made up, except in the case of statins which were prescribed along with beta blockers immediately after a heart attack: I was so grateful (and still am) for my life being saved I took everything I was given until I checked out the manufacturers' websites and discovered the cause of the exhaustion, depression, muscle & nerve pain, muscle weakness and loss ofl ibidy. Incidentally, regarding the latter, the vast majority of drug websites call this "erectile disfunction" as if it were a male only issue and believe me, it's not.
The info sheet which comes with the cortisone inhaler is very clear about the danger of thrush and it was also mentioned to me by my gp and the practice nurse.
I'm sorry you had such bad effects from spiriva but I still think it's a bit extreme to compare them to statins in terms of threatening life or mind.
aitarg35939 maryterese
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I wrote a longer reply which is stuck in moderation, too many periods from using phone as computer & periods for emphasis (and maybe from using a common substitute word for a vulgar word for sex, a word long considered the worst swear word in USA.).
In short:
1. Anything that degrades our sleep causes exhaustion. This might be grief over your diagnosis, and we don't want that to become depression which can really degrade our sleep. As with grief from divorce, loved one's death, losing a job, one way forward comes to many when we can accept that though future life will be different, we're still alive.
It could also be sleep apnea. Constant exhaustion in states often gets us tested for sleep disturbances and then to a psychologist to check for depression if no physiological sleep disturbance found.
It could also be caused by rude neighbors who allow new dog to bark all night. Living alone in rough neighborhood in gun-knife-all violence-prone Texas,of late I've found a new reason to be glad for deafness in this one
2. pulmonologists in my million+ city have a fatalist approach to COPDs exercising. I couldn't get them to send my ex to rehab after occasional COPD-caused hosoital stays. So stupid and short-sighted since the longer he lives, the more money they make. Reject this attitude and exercise. On any day you can't get to treadmill/can't face it, try to do one or more 5-10 min. walks inside your house. If sitting a lot, keep 1lb ir 15 oz cans or weights by your chair and do some curls several times.
Any exercise is good, for your body, grief ir depression and for long-run.
3. There's some american COPD website with the same fatalist approach. My ex only visits that one. I've refused to look at it because it seems to be a complete downer and i don't need that because facing COPD daily plus all my other health and injury issues is difficult enough.
4. Talking to others helps which is why there are support groups, in person and online. My preference is for the positive groups over the totally negative, but i know one person who thrives on the 100% negative groups. My ex doesn't but that's what he's got.
5. I have great faith that you'll find & fix your cause of exhaustion, that perhaps in the future on one of your good days you'll be on this site and you'll find yourself commiserating with or giving positive suggestions to someone else.
Sending you prayers and wishes for a hopeful and less exhausted way forward.
maryterese aitarg35939
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I do take an inhaler and also have reflux. I think it is from the inhaler. Afraid to stop it, pulmo will discourage it. I may have to my voice is so bad. I am so sorry that you can't do narration anymore. Also about your husband, that is a shame.
I do think I am grieving over my diagnosis. I have not been tested for sleep apnea. My parents both died recently so that has contributed to my sleep issues and exhaustion..
The comments about the barking dog made me laugh. So sorry about the pit bull attack! Awful.
I fortunately am not coughing a lot. Yet, anyway.
You are right, no one wants to hear us talking about woes. In the UK there does not seem to be as much stigma. I have only told two people. The stigma
maryterese
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So I will soldier on. You are most helpful.
maryterese
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I now get hiccups a few times a day. I read that it is related! I read also that Vit D with magnesium helps this. Will try.
Anyone else get hiccups?
maryterese
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Sorry for typos.
aitarg35939 maryterese
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maryterese aitarg35939
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jude65855 maryterese
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Of course you are grieving, both over your diagnosis and the two recent deaths close to you: I'm so sorry you're having such a hard time and it doesn't sound as if your doctor is very supportive.
Is the stigma you're experiencing because your COPD is caused by smoking? So was mine, but I haven't experienced any stigma from anyone and have had to learn to stop beating myself up about it because there's no point. I'm Australian by the way, and (I hope) without sounding anti-American, I'm very glad to be living with our heatlh care system and not yours.
I tell LOTS of people about my COPD and mentioning my symptoms has already inspired one person close to me to stop smoking: well two people really, but one of them stopped with e-cigarettes and like most people who do so, was soon smoking ordinary cigarettes again.
I'm quite shocked by the fatalistic approach you're describing when we can all do so much to manage our condition in spite of the fact (frequently stated on this site) that we'll die WITH it but not necessarily OF it.
aitarg35939 jude65855
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Speaking only for myself, i"ve been envious of Canadian-Brit-Aussie healthcare since 1975 when a friend in college in Can. spent weeks in intensive care for resp. infection. Had she been home where family had no insurance, she wouldn' t have been admitted and would've died. I almost bled out in"85, new job no ins., friends insisted on taking me to private hosp. tho i said go to the public one. If hospitals had been further than 3 blocks apart, i would've died in transport b/c of course 1st hosp wouldn"t let friends put me back in their car, had to wait for ambo.
Call me anything you like but give me national healthcareb you can even call it socialized medicine if you'll just give it to me.
As to stigma, the only time I've felt any was with the. 2d pulmo i tried after 1st went to hawaii. He said i was in denial about my smoking, only wrote it on my report to gp, not honest enough to say it to my face. I wasn't in denial, just smart enough to know that i had other contributing factors.
Friends sometimes think I'm talking about some variant of OCD, which i find hilarious.
lill83898 maryterese
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In seeing just now in this message of yours about having 'reflux' ~ It could well be the causation, or at least contributor to your raspy voice.
maryterese lill83898
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Thank you.
maryterese
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jude65855 aitarg35939
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I'm ot having a go at you, but If you were still smoking with COPD I don't think that was a case of stigma if the doctor disapproved and as a long term (nox ex) smoker I'd agree with him that it's the main contributory cause of COPD: what others are relevant in your case?
That's funny about OCD: I find there's a lot of general ignorance about COPD which is amazing considering how many baby boomer long term smokers now have it. It's also amazing that as far as I know there have been no class actions against the tobacco companies as in the case of lung cancer.
maryterese jude65855
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I will write later after my pulmo. I am nervous. Thanks to all.
aitarg35939 jude65855
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I don't expect perfection, just not to have folks die shunting between hospitals. A law had to be passed to stop that; right-wingers/republicans/tea partyers are always trying to change it back. Even before it was changed we had client at our small mortgage company whose 6 wk old infant was rejected at a private hospital tho he wasn't breathing regularly. He died in family car on 4 mile drive to county/public hosp. They had taken baby to latter on the day before & were blown off. It didn't help that they were hispanic and spoke little english. Someone found out & newspaper wrote it up or we would never have known. They paid in cash every month but the wife had quit coming when pregnancy became difficult.
I get irked - furious - abiut this stuff because republicans etc. make such a big deal about faith. I happen to be christian and my understanding is that christ wanted followers to be ever compassionate toward anyone in need. Though they won't admit it they ignore those teachings.
It was Bush 1 who began the demonization of the word liberal in thus country. Only right wingers think here that liberal = radical = democrat = liberal. I am more liberal than most dems but only radical on a few things. I'd be just fine with social democracy. Most Americans don't understand what that is because of 2 things, common ignorance of how other countries function quite well + plus right wing demonization of all things socialist.
It is confusing that the same terms mean opposite things in english-speaking countries! Right wing here equals republicans and leftwing equals democrats. I also don't mean any offense (+ smaller geouos on ea side). Haven't a clue about your politics tho i did when i was younger. Am fed up with all politics and campaigning.
Back to COPD: am not sure if i was smoking when i saw that pulmo but i think not. Think i was in my 1st 4yr cessation which was followed by 4 yrs of much decreased smoking. I never said my smoking wasn't the biggest part, just that mega lung infection at 30 factored in + mom's smoking (in '50s & 60s here we didn't think that harmful after kids were born) + growing up in the country on an oyster shell road with windows open 90% of time (inhaling fine oyster shell dust from passing cars isn't good) + worst of all was our very yummy well water which came from the same mostly sand soil upon which an oil refinery sat 1/2 mile away. 2 of us kids drank that water from conception onward and we both have had major lung problems; the other kids were 6 & 2 (others 13 15 16) when my folks moved out there. These things all count. I was the only child who spent tons of time drinking well water at refinery mgr's house 100' from plant since his were the only little girls for miles around and i aometimes needed a beeak from my brothers.
It's amazing here that more people don't know about COPD, both for baby boomer factor you mentioned and b/c there are so many ads for inhalers on tv from 4 pm onward running right alongside the viagra ads and those for urinary incontinence.