fatigued

@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.

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?

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!!!