Always run down with MGUS
Not really sure if its related, but I get super wiped out after a couple hours of chores, or just shopping, my entire body aches badly. I have so much drive, and love getting everything done, love cleaning, cooking, gardening, and simply enjoying everything in order and organized. Seems lately, more so than the last 2 years since I was diagnosed with MGUS, once I get tired doing whatever, I'll come down with cold sores by next day, usually in my nose, sometimes on my lips. I now have meds for it. Then I'm wiped out for a few days. I dont let it stop me, but I'll admit I'm uncomfortable doing my usual. Drs continue to monitor my labs, and nothing really has progressed. I'm not anemic, and most bloodwork is within normal range. My IGM'S are very low, said to be crowded out by the abnormal cells. The IGM'S are the main white blood cells to fight infection, so I'm at risk, but I never get sick, or run fever, thank God. Just ALWAYS run down. I'm disappointed, and I always feel like even a trip to see my new baby grandson about an hour and 20 minutes drive, will leave me very tired, and run down next day. I actually plan to keep my outings short. I had a bone marrow biopsy done last june...cells are 4% IGG KAPPA...no treatment at this level. Does anyone here experience anything similar to me, with MGUS, and if so, does anything help? I think I'm starting to feel bit disheartened because I'm so active and enjoy doing alot, but my body quits, how sad.
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@4kleo I'm so sorry to hear that. When I was first diagnosed with MGUS, I had a similar experience. In retrospect, I have to chalk it up too being terrified. I was so anxious. I went to my PCP who did yet another round of blood analysis and checked me for all the usual suspects when one is experiencing lack of energy. I was convinced the Grim Reaper had me in his insidious clutches, but she reassured me that my blood chemistry did not indicate a problem outside of the M paraprotein in my blood. It took time for me to believe her, however. My energy did not come back right away. I attribute this to heightened anxiety and I did have elevated white blood count for about six months after my diagnosis which I attribute to reactivity. That was three years ago and I have to say that my energy level has returned to whatever normal is for my 73 years.
I'm not implying that this is all in your head, You should probably have a discussion with your PCP about this to rule out any physical complications. Some of our members have experienced lack of energy with their MGUS diagnosis. I do have peripheral neuropathy which slows me down considerably as far as walking is concerned.
What does your hem/onc say?
I understand what you are saying and in my case its difficult to determine if its from MGUS or merely old age (75). I also have extremely high inflammatory issues with my Gleich syndrome so I know that contributes. My philosophy is I refuse to let it dictate my life as much as I can as its sounds like thats what you do. There are days that there is little energy to draw from but I feel better pushing myself than not. Good luck sounds like you are handling it great and understand what you are feeling is normal to feel.
I have to seriously guard my energy expenditure. Along with recently being diagnosed with MGUS, I’ve also been diagnosed with anemia and iron deficiency (as well as Vit D deficiency). Once I knew that I blasted myself with iron and Vit D. Symptoms of anemia include tiredness and shortness of breath. My symptoms have reduced although not resolved. In the meantime, I am awaiting an appointment with a myeloma specialist who also sees MGUS patients. You may want to have the total iron panel checked (ferritin, TIBC, etc) and Vit D level. I think when the bone marrow isn’t working sufficiently there’s a cascade of insufficiencies and many lab values need to be looked. Good luck.
I have more energy since following the plant based diet with tumeric from Sloan Kettering for MGUS
That is very interesting. I follow a plant based diet but have been leery of tumetic. This is because I take zocor and celebrex- two drugs under investigation (repurposing) to prevent progression.
I am 82 and have lots of energy. I walk four miles a day and swim for an hour. I also work part time.
Feeling tired is kind of a general comment that can mean different things. Age related. Mental capacity. Emotional or moods. Depression is a big one. Then there’s physical things like anemia low iron illness or disease progression. When I wear out it’s not gradual. It’s immediate. I am tired now. This second. This does not happen every day or even weekly. I try and think back to a reason or cause. But I think it could be MGUS or SMM. It’s a symptom of the disease with no clear understanding of how. Blood work is stable. Could the M proteins be causing this or my elevated IgA? Could my age be a factor. I am 67. Being tired is not being lazy. My wife gets that confused. I am tired for a reason I just wish I knew what it was.
I have been diagnosed with smoldering Myeloma. I have the same experience, I feel sometimes feel so tired that I can not think straight. I have been told, smoldering myeloma have no symptoms. All my labs are good. Any one with the same experience?
I hear you about fatigue, but I push myself. I attribute the fatigue to my age (almost 75) and that I could stand to lose about 25 lbs. But whatever I do to rationalize it; the fatigue is there. I find that I'm usually in bed by 8:30-9:00 but I'm up at 5:30 every morning without an alarm set. I've always been very active and try to continue to do that, but there are days when I have to rest because the bottom drops out after an hour or so of activity.
@rosoto Welcome to Mayo Clinic Connect. Often, we experience varying levels of fatigue that seem to be connected to whatever else we may have going on, or our recent diet, or even weather changes/activity level changes. There are so many factors that can play a part, from my own experience. It's really hard to narrow it down to a particular cause of tiredness or fatigue.
I would not be willing to be real quick at pointing out an MGUS or smoldering myeloma as chief cause for fatigue. That is my own personal opinion. As an example, for myself, in addition to living with multiple myeloma, I am an end-stage kidney disease patient on daily dialysis. Does the myeloma sometimes promote fatigue? Yes, indeed! Does my daily dialysis lend itself towards fatigue at times? Again, yes. And as I continue to push myself to do as much as I can, there are days I push too hard, and pay the price.
What we can do as patients, is be mindful of our diets, choosing to eat healthy, minimize our stress as much as possible, get moderate exercise, and follow our medical team's guidelines for our unique health situation.
Ginger
I still experience severe fatigue...it comes on suddenly and sometimes lasts for a few months, then all of a sudden I'm good again...can't figure. But I told my primary again because I get all achey and my glands in my neck hurt. She tested me for auto immune disorders and nothing showed up. My oncologist at mayo replied to a message I sent asking him if he would look further...he replied I'm a low risk for myeloma to ask my primary. I give up, been years of feeling this way...im able to stay active but on those days I'll cut it short. I posted on another thread here this oncologist dr has not re-scheduled me for anymore appts....i asked twice if I no longer need testing for mgus...they have not replied.
My care team there has not responded ...my bloodwork otherwise is all good, and last few tests for mgus only picked up a trace...so im not going to bother asking again. I just wanted some update whether I'm a patient any longer...after all the testing I went through , over the years, including a bone marrow biopsy...but hey, I'm not complaining...seems some how I've improved.
Those of us that experience that severe fatigue, I sympathize with you...no one can understand what it feels like to drag yourself and feel beyond fatigued.