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Ronald

Worried

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I have to go for a pulmonary function test on Wed 13th and I am really worried. Last time I went was little over 3 years ago and I was at 42% lung capacity.  My doctor told me PF and chest XRay every 3 months.
 

I am really worried about the test, my lungs always hurt afterwards from the forceful breathing and I am worried about the capacity being a lot lower.  I know it is, as when I walk I get short of breath, in addition I just started getting panic attacks 3 weeks ago, so if it's not one thing it's another.  They are really affecting my sleep, I can fall asleep okay but I can not stay asleep, last night was good I got 4 hours, the night before that 2 hours and 2.5 hours bed rest (no sleep).  So averaging 3-4 hours sleep everyday.  Any help would be appreciated.  My doctor knows all of this.

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I just seen on my digital ulcers post I was complaining of sleep problems back on Sept 26, I had no idea they have been with me that long.  Wow. 
 

I guess that is not new but the panic attacks are. Got Xanax for panic.  But they don't like to give you very much.

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Hi Ronald, When I was first diagnosed, the aches, pains and stiffness were so bad, I was taking little exercise and having sleep problems.  When I started to fight back, increase my fitness and force myself to exercise more, my sleep improved considerably.  It was a painful process, but one I am glad I put myself through.

I normally sleep well, so long as I have been for a walk or done some DIY around the house or for one of my kids.  If not, a large glass of red before going to bed usually does the trick ☺️

Increased physical activity may also improve your lung function, though you may, like me need to build up gradually.

A sleep specialist told me that more human interaction also tires the mind and helps you to sleep.  If you are not getting much of this it might be worthwhile trying to spend a bit more time talking to people.

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Hi Ronald,

 

Like you, I've always found that my lungs tend to hurt a bit after a lung function test. Unfortunately, I can't really reassure you about the result of your PFT's, but I would suspect that getting very anxious about them is not going to help you.

 

With a chronic illness such as scleroderma, it's normal to experience depression and anxiety along with illness and so it might be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding your health issues are difficult to deal with.

 

Kind regards,

 

 

 

 

 


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On 11/12/2019 at 4:34 PM, dimarzio said:

Hi Ronald, When I was first diagnosed, the aches, pains and stiffness were so bad, I was taking little exercise and having sleep problems.  When I started to fight back, increase my fitness and force myself to exercise more, my sleep improved considerably.  It was a painful process, but one I am glad I put myself through.

I normally sleep well, so long as I have been for a walk or done some DIY around the house or for one of my kids.  If not, a large glass of red before going to bed usually does the trick ☺️

Increased physical activity may also improve your lung function, though you may, like me need to build up gradually.

A sleep specialist told me that more human interaction also tires the mind and helps you to sleep.  If you are not getting much of this it might be worthwhile trying to spend a bit more time talking to people.

In June/July?part of Aug 2019 I was walking up to 3-4 KMs a day, no problems.  When I got sick I was so weak walking was hard.  After I was better, I developed a bad cough that I picked up in the hospital.  Then I started to see my walking distance diminished substantially. Now I walk around the block thats only .3 KM.  I am winded.  There is something wrong with my lungs. 

 

Went for the test today and one thing that's going to make a capacity reading accurate, is my weight.  Last time I had one done I was 170, now I am 128.  I was 170 because of antidepressants causing me to gain weight.  I have been on them since 2002.  Before that I was always 130-135 pounds. I should have told that to the tech that my actual weight should be 130-135.  I am losing muscle mass now, this weight loss is crazy.

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On 11/12/2019 at 5:41 PM, Joelf said:

Hi Ronald,

 

Like you, I've always found that my lungs tend to hurt a bit after a lung function test. Unfortunately, I can't really reassure you about the result of your PFT's, but I would suspect that getting very anxious about them is not going to help you.

 

With a chronic illness such as scleroderma, it's normal to experience depression and anxiety along with illness and so it might be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding your health issues are difficult to deal with.

 

Kind regards,

 

 

 

 

 

I was diagnosed with major depression, severe anxiety and OCD back in 2002.  I lost interest in computers, not sleeping and felt terrible, life was awful. After being put on Remeron, that drug saved me.  I could sleep 8 hours and I was always hungry.  I gained a pile of weight on that drug, but I didn't care, it made me feel better and doctors all said I need more meat on my bones.  Now the meds don't work anymore and I am seeing a new doctor in Jan 2020 for new meds.  I think my depression may be at work here affecting my sleep.  Just a gut feeling.  I have no lost interest in computers, that's my joy in life. 

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