tiredness

[Guest guest]

Liz,

Thanks for the information about fatigue. I have most of the same information since I have researched bronchiectasis extensively since my diagnosis October 2000. Every time I would go to see my primary care physician (internal medicine specialist) and allergist, all they would do is ask me what antibiotic I could take. I should have said, "I can take any antibiotic, but that does not help." What is the cause? They just treat the symptoms. Then they said after I had sinus surgery that that would take care of the problem. Not true, sometimes sinusitis and bronchiectasis are present together. I should have been more assertive. I asked my primary care doctor to please refer me to a pulmonary doctor (my breast cancer surgeon's brother). All he would say is, "No, not yet." The reason might have been that my insurance would not pay for it, and I could not see the pulmonary doctor without his referral. I worked for the state health department in my state and had the best insurance available. Unfortunately, it required a referral for a specialist. Finally after two bouts of pneumonia within six months, my primary care doctor ordered a CT scan, and the diagnosis was bronchiectasis. When I was in the hospital in July, my pulmonary doctor said, "I think you have had this for a long time." I agreed and said that I could not get a referral to see him sooner.

You are right about feeling tired. That same primary doctor said, "Oh, there are a lot of things that cause fatigue." I am very tired right now and think I will take a nap even though it is late in the afternoon. Also, we are expecting a cold front to come in early in the morning, and that makes my asthma worse.

Thanks again for your information. If we could just get this message across to our doctors and family, it would be helpful.

Best Wishes for Better Health,

Norma in Austin, Texas

[Guest guest]

Hi Liz,

This is a great article, thankyou! I totally agree with the statement "three o'clock in the afternoon can feel like eleven o'clock at night".

I always hit the wall around that time each day and need my siesta (lol)!!

Take care and keep well.

Love Bunny

[Guest guest]

Dear Liz - I haven't posted an email for a while but I still follow everyone's paths. I just wanted to thank you for the article - it was very good and helped me a great deal as I am always tired and sometimes blamed myself, my outlook because everyone else my age doesn't get tired. I secretly always knew it was the Bronc. but convincing outsiders is another question. These days I am only able to work parttime and at the end of my 3 days I'm absolutely exhausted.

Thanks again for your trouble.

Madeleine

Tiredness

Dear friends,

I was so encouraged when I read about bronchiectasis / tiredness, in the Spring 1999 edition of the British Lung Foundation Breathe Easy Magazine. Here is the article for all to read. Love Liz

Living with Bronchiectasis

By Kate

Breathe Easy Magazine (British Lung Foundation) Spring 1999

Speak to anybody with a chronic pulmonary condition and you will often be told that the ignorance of those around him or her makes the pain worse. Because they often look well, even when very ill, their conditions can be misunderstood.

For people with bronchiectasis, this is made worse by the fact that, according to Professor Cole, Professor of Respiratory Medicine at London's Royal Brompton Hospital, their condition is misunderstood by many in the medical profession.

Bronchiectasis occurs when the bronchi, the tubes that carry air to the lungs, are damaged and can no longer clear themselves of mucus. This mucus can spill over to adjacent tubes that, in turn, become more prone to infection by bacteria, causing inflammation. Bronchiectasis can stem from existing generic conditions like cystic fibrosis and primary cilary dyskinesia, tubes which become damaged while healing or obstructed by inhaled foreign bodies, inhaled stomach acid and antibody deficiency following an illness. For many patients, however, the cause is never found.

The most common and obvious symptom is a persistent cough that produces phlegm. Others include shortness of breath, a runny nose and chronic sinusitis. Blood may be coughed up, but this is less common, as is joint and chest pain.

Bronchiectasis is most common in women in their early forties. It can only be properly diagnosed with a painless CT (computerised tomography) scan, followed by a blood test to try to ascertain the underlying course. If no cause can be found and it is localised to a single area, then surgery may provide a cure.

Treating the causes

Treatment can take a variety of forms. The underlying cause must be treated first, if it can be identified. According to Professor Cole, more effort should be spent finding the underlying cause in order to provide better treatment and stop the condition worsening. For most patients, treatment includes nasal drops and sprays for nose or sinus infection, antibiotics, and anti-asthma treatment.

One of the main problem areas for patients is the emphasis many doctors place on the cough. While the cough and accompanying phlegm can be distressing and embarrassing, the main problem is the fatigue that accompanies the illness. This has the most impact on patients' lives, according to Professor Cole. "For bronchiectasis patients, three o'clock in the afternoon can feel like eleven o'clock at night".

Many doctors see tiredness as more psychological than physical. The answer lies in 'patient power'. "Patients should pester their GP to be referred to a centre with a specialist in bronchiectasis", says Professor Cole. Here the condition can be closely monitored and patients taught the vital importance of physiotherapy in managing the disease.

Professor Cole says the need for physiotherapy cannot be emphasised enough. However, because it is the patient that must take the initiative, it can be overlooked. Anyone diagnosed with bronchiectasis should not fear, but try and understand it with the help of the British Lung Foundation and their GP, he says. If their GP does not provide information, patients should ask to see someone who can.

----------------------------------------------------------------------------------------------

Additional information:

Leaflet C4 in CHSA Chest Series "What is bronchiectasis?" by Cole

Professor of Respiratory Medicine, Host Defence Unit, National Heart & Lung Institute, was priced 50p in 1998

The Chest Heart & Stroke Association

CHSA house

Whitecross Street

London, EC1Y 8JJ. England.

Telephone:

[Guest guest]

Hi everyone..I can relate to the afternoon tiredness...funny how when it is time to go bed we can be too awake......Bob & Bunny wrote:

Hi Liz,

This is a great article, thankyou! I totally agree with the statement "three o'clock in the afternoon can feel like eleven o'clock at night".

I always hit the wall around that time each day and need my siesta (lol)!!

Take care and keep well.

Love Bunny

[Guest guest]

That is soooooooooo true. My breathing treatments, especially the antibiotic with the Pari Neb, makes me so sleepy. Then by the time I get ready to go to bed, I am wide awake. My computer tells me that it is 1:33 p.m., so I better take a nap. On the job I had before I had to retire, I would go out to my car that was parked in the shade, take my alarm clock and take a nap during my lunch period and then eat my lunch at my desk. That is the only way I could make it through the day. I thought that the fatigue was due to my mitral valve heart condition, but it was the bronchiectasis.

Now I know the reason. I don't feel so unusual when I hear all of this tiredness (fatigue).

Take care all and thanks for all your support.

Norma

[Guest guest]

Barb,

I am planning to return to pulmonary rehabilitation next week. I have not been back since last January when three of us in the group all developed pneumonia. I had been in it a few months before and have always felt much better when I exercise. It seems easier when there are other people with respiratory problems exercising. The respiratory therapists are so helpful and have information about bronchiectasis that my doctor never told me. They said that they have more time to research information regarding pulmonary diseases. I get especially exhausted when I have to do both treatments (regular breathing exercises followed by inhaled antibiotic) the last two weeks of each month. I try not to plan any regular doctor appointments, or go to pulmonary rehabilitation those last two weeks. Of course, I am 69 years old now (since July) and that does not help my situation, but I remember when I had this problem and did not know what made me so tired and was trying to work at one full time job and a part-time job at home.

Exercise gives you more energy even though you don't think you can work it in. Hopefully, you might be able to delegate some of your duties at home to other family members.

My best wishes for your better health,

Norma

[Guest guest]

Karin,

This sounds accurate. Also, some of us with this disease do not have 100% oxygen, and that may also affect our feeding of fatigue.

Norma

[Guest guest]

Karin,

Please excuse the typo. I should have said feeling (not feeding). Perhaps that is because I am too tired right now, and that is a good excuse.

Norma

[Guest guest]

How right you are . Back last fall when I started rehab it was a real chore but I worked up to 3 1/2 hrs a morning and continued until this past July. I saw people who came in on a scooter or wheelchair and left by their own steam eventually. It takes time but we find if we stick with it - it works. Would like to see everyone doing it whether at home or in a program. I truly believe it is our salvation. Nona

[Guest guest]

Norma, that's great to hear that you are returning to pulmonary rehab. I'm sure you will benefit from it and I admire you for making the intense physical effort involved. I hope it will inspire others in this bronchiectasis 'family' to do the same. Those of you who say you are tired would gain a lot from doing rehab. Yes it takes energy that you don't think you have but by being taught how to exercise properly your body will thank you for doing it. Your legs will be stronger to make moving easier and your heart will be stronger to pump the blood into your muscles to help them work the way they should without you becoming tired. At first it will be difficult but hang in there and you will feel so pleased with yourself for having accomplished training your body to be stronger.

I hope to hear more of you getting into rehab.

nor236@... wrote:

Barb,I am planning to return to pulmonary rehabilitation next week. I have not been back since last January when three of us in the group all developed pneumonia. I had been in it a few months before and have always felt much better when I exercise. It seems easier when there are other people with respiratory problems exercising. The respiratory therapists are so helpful and have information about bronchiectasis that my doctor never told me. They said that they have more time to research information regarding pulmonary diseases. I get especially exhausted when I have to do both treatments (regular breathing exercises followed by inhaled antibiotic) the last two weeks of each month. I try not to plan any regular doctor appointments, or go to pulmonary

rehabilitation those last two weeks. Of course, I am 69 years old now (since July) and that does not help my situation, but I remember when I had this problem and did not know what made me so tired and was trying to work at one full time job and a part-time job at home.Exercise gives you more energy even though you don't think you can work it in. Hopefully, you might be able to delegate some of your duties at home to other family members.My best wishes for your better health,Norma

[Guest guest]

Karin, that is absolutely true. It underlines the need to be diligent in doing daily therapy to help get rid of the junk that accumulates in the bronchial pouches and causes so many problems for those with bronchiectasis.

It also indicates the need for pulmonary rehabilitation that Norma told us about. It's vital to have a strong body to cope with the problems that bronchiectasis brings.......by doing rehab. and continuing with an exercise programme every day at home you will notice a difference in being able to get through the day with a little energy left over at the end..........not a lot but you will feel better.

Karin wrote:

My Dr has a different > theory for the tiredness. Thanks for sharing the article > I've got one...when the pipes are not functioning properly, breathing can be hard work, and doing hard work all day long makes a body tired. ;)Karin

[Guest guest]

I am starting back next week. I agree with you.

Norma

[Guest guest]

I used to do the alarm

clock-in-the-car nap too, although since my resection last year I haven’t

had to. I work with one year olds

so it’s like an aerobic workout every day. By the time 5:00 rolls around, I’m pretty tired.

I get what feels like runner’s side

ache in my right side (which is the side where most of my problems are) and it’s

definitely not from running. I got

them sometimes when I used to run.

Does anyone else get them from bronch?

Barb

Re:

Tiredness

That is soooooooooo true. My

breathing treatments, especially the antibiotic with the Pari Neb, makes me so

sleepy. Then by the time I get ready to go to bed, I am wide awake.

My computer tells me that it is 1:33 p.m., so I better take a nap. On the

job I had before I had to retire, I would go out to my car that was parked in

the shade, take my alarm clock and take a nap during my lunch period and then

eat my lunch at my desk. That is the only way I could make it through the

day. I thought that the fatigue was due to my mitral valve heart

condition, but it was the bronchiectasis.

Now I know the reason. I don't feel so unusual when I hear all of this

tiredness (fatigue).

Take care all and thanks for all your support.

Norma

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[Guest guest]

, that's how I feel about male ob/gyn doctors.......how can they know what it's like to have periods and be pregnant......they can only read about it in a book!!!!!! I worked with them for years and in spite of what I've just said some of them were wonderful and better than some females.......it still boils down to the fact that they haven't 'been there, done that!!!!!!'

DiCaterino wrote:I stand by the statement that if they don't have it, they can't understand it!

Take care,

Post your free ad now! Yahoo! Canada Personals

[Guest guest]

Hi all,

Just wanted to post a little note saying I hope everyone is doing

well. It is so ironic that the subject of being tired is being

dicussed today because I am having a " bad " day and feel exhausted. I

have to do my nasal irrigation (my friends the psuedomonas have

decided my lungs weren't enough, so some have moved to my sinuses!

LOL)and I have been trying to get motivated to mix the solution and

do the irrigation. Since I am up and reading these posts, I have

decided to just get up and get it over with! Thanks for the

motivation and understanding, I am off to flush out some nasty lil

psuedos!!

Stay well, and your breathing treatments!!!

Lynne

[Guest guest]

> Karin,

>

> Please excuse the typo. I should have said feeling (not

feeding). Perhaps

> that is because I am too tired right now, and that is a good

excuse.

>

> Norma

The scary part is, I didn't even notice the typo.

Karin

[Guest guest]

In addition to bronchiectasis I have mitral valve prolapse, supraventricular tachycardia, cardiac palpitations, paroxysmal atrial fibrillation and atrial tachycardia. I thought the fatigue was due to my heart conditions. Now I know that I have two reasons to feel fatigued. Well, at least I cleaned the house today while my husband sat in the recliner and watched TV while I huffed and puffed. Tomorrow I start back to pulmonary rehabilitation. Does anyone know if housework is considered as exercise? I am 69 years old and have always been a very active person, but I think that we need rest too. I need to have my husband's and my primary care doctor to write a prescription for my needing rest. He told me, but I am going to have him write the prescription so that my husband can see it. I am getting mean in my old age.

Take care all and better breathing to all,

Norma

[Guest guest]

I think I need to send that article to my Lung specialist so that he could see that it is the bronch sometimes I wonder what do they know? Honestly when I went it was the same old same old talking to myself no one listening. And I did say before I read that tiredness article that I was exhausted and fatigued did not even tell me that was part of Bronch. Just proves how valuable this group can be lots of heads is better than one, anyway I walked out and thought "no worries, head up" and keep going just a little bit further and then rest like a queen!!!!

Isn't it funny feeling guilty for resting!!! Oh no not anymore....sending warm fuzzies to everyone to clear there lungs....lol

-- Re: Tiredness

Dear Liz - I haven't posted an email for a while but I still follow everyone's paths. I just wanted to thank you for the article - it was very good and helped me a great deal as I am always tired and sometimes blamed myself, my outlook because everyone else my age doesn't get tired. I secretly always knew it was the Bronc. but convincing outsiders is another question. These days I am only able to work parttime and at the end of my 3 days I'm absolutely exhausted.

Thanks again for your trouble.

Madeleine

Tiredness

Dear friends,

I was so encouraged when I read about bronchiectasis / tiredness, in the Spring 1999 edition of the British Lung Foundation Breathe Easy Magazine. Here is the article for all to read. Love Liz

Living with Bronchiectasis

By Kate

Breathe Easy Magazine (British Lung Foundation) Spring 1999

Speak to anybody with a chronic pulmonary condition and you will often be told that the ignorance of those around him or her makes the pain worse. Because they often look well, even when very ill, their conditions can be misunderstood.

For people with bronchiectasis, this is made worse by the fact that, according to Professor Cole, Professor of Respiratory Medicine at London's Royal Brompton Hospital, their condition is misunderstood by many in the medical profession.

Bronchiectasis occurs when the bronchi, the tubes that carry air to the lungs, are damaged and can no longer clear themselves of mucus. This mucus can spill over to adjacent tubes that, in turn, become more prone to infection by bacteria, causing inflammation. Bronchiectasis can stem from existing generic conditions like cystic fibrosis and primary cilary dyskinesia, tubes which become damaged while healing or obstructed by inhaled foreign bodies, inhaled stomach acid and antibody deficiency following an illness. For many patients, however, the cause is never found.

The most common and obvious symptom is a persistent cough that produces phlegm. Others include shortness of breath, a runny nose and chronic sinusitis. Blood may be coughed up, but this is less common, as is joint and chest pain.

Bronchiectasis is most common in women in their early forties. It can only be properly diagnosed with a painless CT (computerised tomography) scan, followed by a blood test to try to ascertain the underlying course. If no cause can be found and it is localised to a single area, then surgery may provide a cure.

Treating the causes

Treatment can take a variety of forms. The underlying cause must be treated first, if it can be identified. According to Professor Cole, more effort should be spent finding the underlying cause in order to provide better treatment and stop the condition worsening. For most patients, treatment includes nasal drops and sprays for nose or sinus infection, antibiotics, and anti-asthma treatment.

One of the main problem areas for patients is the emphasis many doctors place on the cough. While the cough and accompanying phlegm can be distressing and embarrassing, the main problem is the fatigue that accompanies the illness. This has the most impact on patients' lives, according to Professor Cole. "For bronchiectasis patients, three o'clock in the afternoon can feel like eleven o'clock at night".

Many doctors see tiredness as more psychological than physical. The answer lies in 'patient power'. "Patients should pester their GP to be referred to a centre with a specialist in bronchiectasis", says Professor Cole. Here the condition can be closely monitored and patients taught the vital importance of physiotherapy in managing the disease.

Professor Cole says the need for physiotherapy cannot be emphasised enough. However, because it is the patient that must take the initiative, it can be overlooked. Anyone diagnosed with bronchiectasis should not fear, but try and understand it with the help of the British Lung Foundation and their GP, he says. If their GP does not provide information, patients should ask to see someone who can.

----------------------------------------------------------------------------------------------

Additional information:

Leaflet C4 in CHSA Chest Series "What is bronchiectasis?" by Cole

Professor of Respiratory Medicine, Host Defence Unit, National Heart & Lung Institute, was priced 50p in 1998

The Chest Heart & Stroke Association

CHSA house

Whitecross Street

London, EC1Y 8JJ. England.

Telephone:

[Guest guest]

Bunny,

I actually feel better after I do the cleaning. I am off my two-week antibiotic period so I have more time to rest and exercise. I am considering getting another type of compressor for the Pari LC Plus that I use for the antibiotic that might speed up the time I spend with this treatment.

My husband said that he would vacuum the carpets, and I will do the vinyl floors and mop from now on.

Thanks for your concern. I will let you know how the rehab. goes.

Love and Better Breathing, Norma

[Guest guest]

, after I sat down out of breath, he finally said that he would do the vacuuming and I can do the mopping from now on. I just like the house to be cleaner than he does. I told him that I need it to be clean as there are less germs, especially the kitchen and bathrooms. Thanks for your very appropriate comment.

Love, Norma

[Guest guest]

Norma, you aren't getting mean you're getting wiser. If that is what it takes for your husband to understand your needs, go for it.

nor236@... wrote:

In addition to bronchiectasis I have mitral valve prolapse, supraventricular tachycardia, cardiac palpitations, paroxysmal atrial fibrillation and atrial tachycardia. I thought the fatigue was due to my heart conditions. Now I know that I have two reasons to feel fatigued. Well, at least I cleaned the house today while my husband sat in the recliner and watched TV while I huffed and puffed. Tomorrow I start back to pulmonary rehabilitation. Does anyone know if housework is considered as exercise? I am 69 years old and have always been a very active person, but I think that we need rest too. I need to have my husband's and my primary care doctor to write a prescription for my needing rest. He told me, but I am going to have him write the prescription so that my

husband can see it. I am getting mean in my old age.Take care all and better breathing to all, Norma

[Guest guest]

Dear Norma,

I'm sure we can count housework as exercise, as it is darned hard work, even for healthy people. Is there any way you can get some home help, for the heavy stuff, like vacuuming, etc? Maybe your doctor could help with that, as you do have a lot on your plate.

Good luck with your pulmonary rehab, I hope it goes well for you, and try to get some rest in between. When I was doing pulmonary rehab, I would always come home afterwards and crash out for a few hours (lol)!

Take care and keep well.

Love Bunny

-----Original Message-----From: nor236@... Sent: Thursday, 2 October 2003 7:58 AMTo: bronchiectasis Subject: Re: TirednessIn addition to bronchiectasis I have mitral valve prolapse, supraventricular tachycardia, cardiac palpitations, paroxysmal atrial fibrillation and atrial tachycardia. I thought the fatigue was due to my heart conditions. Now I know that I have two reasons to feel fatigued. Well, at least I cleaned the house today while my husband sat in the recliner and watched TV while I huffed and puffed. Tomorrow I start back to pulmonary rehabilitation. Does anyone know if housework is considered as exercise? I am 69 years old and have always been a very active person, but I think that we need rest too. I need to have my husband's and my primary care doctor to write a prescription for my needing rest. He told me, but I am going to have him write the prescription so that my husband can see it. I am getting mean in my old age.Take care all and better breathing to all, Norma

[Guest guest]

Norma,

when I was in rehab the therapist said that housecleaning & gardening etc. were exercise. but one still needs to do the walking and the rest.............nona

[Guest guest]

Norma, sounds like a good deal you've struck with your husband about vacuuming. Maybe you could ask him which day he would prefer to do it rather than tell him which day..........put him in a better mood perhaps?????? just a suggestion!

nor236@... wrote:

Bunny,I actually feel better after I do the cleaning. I am off my two-week antibiotic period so I have more time to rest and exercise. I am considering getting another type of compressor for the Pari LC Plus that I use for the antibiotic that might speed up the time I spend with this treatment.My husband said that he would vacuum the carpets, and I will do the vinyl floors and mop from now on. Thanks for your concern. I will let you know how the rehab. goes.Love and Better Breathing, Norma

[Guest guest]

Norma,

I admire you for determination!!! Yes I agree your husband needs to see that you need his help or at least that rest!!!

-- Re: Tiredness

In addition to bronchiectasis I have mitral valve prolapse, supraventricular tachycardia, cardiac palpitations, paroxysmal atrial fibrillation and atrial tachycardia. I thought the fatigue was due to my heart conditions. Now I know that I have two reasons to feel fatigued. Well, at least I cleaned the house today while my husband sat in the recliner and watched TV while I huffed and puffed. Tomorrow I start back to pulmonary rehabilitation. Does anyone know if housework is considered as exercise? I am 69 years old and have always been a very active person, but I think that we need rest too. I need to have my husband's and my primary care doctor to write a prescription for my needing rest. He told me, but I am going to have him write the prescription so that my husband can see it. I am getting mean in my old age.Take care all and better breathing to all, Norma