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boredsilly
@boredsilly

Posts: 17
Joined: Dec 06, 2017

fatigued

Posted by @boredsilly, Dec 15, 2017

After 3 stents, cardio inversion, pnemonia, pacemaker, nebulizer, various inhalers, I’m still fatigued-quit the nebulizer for a day as I thought it was not working, I went back to it today, Better than nothing. Any suggestions, as I’m going nuts just sitting around-good thing I have a caring spouse!!!

REPLY

@boredsilly Hi, Bored… You sound like me. I finally realized that my disorders of every organ or tissue in my body at least gave me something to write about, so I have. I cannot walk much now, and every joint now is hit with arthritis or osteomalacia or something similar. I finally realized I had to do something, so to make a long story much shorter, I began to study it. Finally I ran across a few people who had ideas. So I pushed my doc into getting my into some protein tests, especially the Bindings/Mayo SERUM FreeLiteChain(c) Protein Assay, and the 24-hour protein assay, both analyzed by ARUP Laboratories of Salt Lake City. Other top labs, such as Mayo, Quant, Stanford, Sloan Kettering and a few others could do it. Now I am struggling to get into the AlnylamAct.com DNA testing program. Turns out I have a liver that puts out a lot of mis-folded protein, which fouls up everything: heart, kidneys, lungs, cerebellum, thyroid and a bunch of other stuff. So now I only have to try to find doctors who know what to do about it. The key centers are Mayo-MN, Brigham and Women’s, Sloan Kettering, Stanford, Fred Hutchinson, City of Hope and the University of Utah. You can download or read my story (I am up to Amyloidosis Series 15 now) at https://bit.Ly/1w7j4j8 It costs nothing. Just be sure you get a local doctor with some ambition AND who is willing to work with one of these labs, or the whole experience will be wasted.

Hi BoredSilly,
In addition to OldKarl, I’d like to bring @windwalker and @crashnam into this discussion about fatigue, nebulizers, heart and lung conditions.

BoredSilly, can you tell us a bit more about your lung condition?

I’m watching closely also as I believe I may have hit the COPD bump. Diagnose as Gold Stage III COPD and had a flare up the first week in Sept. and never got back to where I was but went down more than I expected. Now SOB with most activity O2 levels fall. No interest in the little things I liked to do due to fatigue.

@bb729, Good morning! Do you have a name? (just more personal than bb729, but you don’t have to use a name if you are not comfortable doing so). COPD is a basket term for lung diseases. Do you know what is going on in your lungs to classify you with COPD? I have bronchiectasis and MAC, as many others do on this site. I know exactly what you mean about losing interests in doing the things we were once interested in doing. Fatigue is a monster that steals our ability to do things we once enjoyed. I always thought that I was so lucky to have hobbies that I love and looked forward to expanding on them in retirement. Little did I know that I would have to retire at the age of 49 due to severe lung disease. That was 10 years ago. I used to enjoy painting and jewelry making. I quit painting, and make very little jewelry anymore. They sound like easy, low energy things to accomplish, but my creative mind is also fatigued. I found other outlets like trading stocks on Scottrade. I have grown a nice bundle! and being active on this support group and helping people in my community. Right now am spearheading help for a relocated family from Puerto Rico. They are a family of 5, three being small children under the age of 7, that came with only the clothes on their backs. I think that knowing that what little energy I do have is being put to good use helps; it actually gives me a little more drive. My housework is sliding. I used to be so fastidious. Now, I do one task at a time, work 20 minutes, sit & rest 20 minutes. Are you trying to stay active and getting some exercise? That really helps.

Liked by Jamie Olson

Dr. wanted me to send him my cpap card-did so, waiting for results!!

Another trip to the ER-diagnosed with pnemonia,3rd time this year. Left Christmas Eve. Still fealing fatigued, dr. said urinary tract infection. Hope she’s right this time.

Hi @boredsilly,
I merged your message about going to ER and “not being bored silly” to your the earlier discussion you started about lung issues and fatigue so that people could follow the thread of discussion more easily. What are you taking to manage the urinary tract infection (UTI)? How are you feeling today?

@colleenyoung

Hi @boredsilly,
I merged your message about going to ER and “not being bored silly” to your the earlier discussion you started about lung issues and fatigue so that people could follow the thread of discussion more easily. What are you taking to manage the urinary tract infection (UTI)? How are you feeling today?

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I don’t know what UTI means. Since returning from the hospital 12/24, i’m taking ipratropium/albuter sol nep, 4 times a day in my nebulizer-does not do much good!!!

UTI….. urinary tract infection

Well, here I am again. Just was hospitalized with pnemonia, 3 rd time this year!!Dr. says fatigue & tired ness caused by urinary tract infection. Another regimen of pills, so far, no results.Have appt. w/heart dr. 1/3/18, probably same old bull. Ready to switch to another provider!!!

@boredsilly Hi, again. As I said before, I suggest you switch to a hematologist, one who is either with Mayo or Sloan Kettering or such, or will arrange to have their labs do the testing, and do a full protein deposit workup, including a Bindings SERUM FreeLiteChain assay, a 24 hour proteinuria collection and assay, and whatever else the Big Clinic doctor, such as Martha Grogan at Mayo MN requests. Unless you have one of the more experienced and equipped labs do the work, you might as well stick yourself with a straight pin, lick off the drop of blood and see how it tastes. It is either have your doctor work with the Big Lab, or go to the Big Lab yourself. It is your choice.

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

@boredsilly

Another trip to the ER-diagnosed with pnemonia,3rd time this year. Left Christmas Eve. Still fealing fatigued, dr. said urinary tract infection. Hope she’s right this time.

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Dr. prescribed amox/k clav 875-125mg & furosemide 20mg, so far no good results

@ppeschke It is hard to say if your would be granted disability. But there are two comments I would make. First, you will never get it unless you ask, with your doctor’s support. And second, if you are denied, ask again with the support of a good attorney. The WH has said they want to kill disability, so go after it now.

@ppeschke

I am so glad to know I’m not the only person who has terrible fatigue issues and had lost interest in any activities. I am only 49 years old and have finally been diagnosed with OLD & UIP. I used to work 2 work 2 jobs and now I cannot make it a full day at my full-time job because of my awful fatigue. My sister is urging me to apply for disability benefits. Does anyone have experience with this. I’m just wondering if I could even be approved. Also, can you work part-time and still be in disability?

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@ppeschke , Hi there, do you have a first name? If you have not applied for disability, I’d advise you to do it today if you have not already done so. You can do it online. Once active, they will instruct you what to do next. The sooner you do, the sooner you will get it. But, you do want to be in the system ASAP. I was approved back in 2007 and had no trouble getting it. Fortunately, the breathing test is pretty cut and dry. You either ARE bad enough to get approved or you are not. Plus, what you have is a progressive disease, meaning it has the propensity to get worse over time. My doctors encouraged me to quit the workforce as to not expose myself to other people’s germs, i.e. colds and flu. My doctors said I would last longer in life if I did not add job stress to my disease. I was fortunate that I had a husband to help with financial cost of living, plus, I was lucky enough to inherit a home owned free and clear which I made into a rental for added income. You are allowed to work part time, but the pay cannot exceed your monthly benefit.

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