Fatigue & Smoldering Myeloma
Hi All,
I am new to the forum, happy to be here.
I have been Smoldering since 2023 and have been experiencing extreme fatigue.
Wondering if anyone else is experiencing this. I have low rbc, hemoglobin, and hemocrit (spell??)
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I have IgG-secreting Lymphoplasmacytic Lymphoma for which my Zanubrutinib (Brukinsa) was paused this past January 30, 2026 with an eye to indirectly evaluated its effectiveness. I still am experiencing profound fatigue as well as remain anemic (with low rbc, hemoglobin, and hematoctit levels).
Yes. I’m SMM and experience extreme fatigue at times. My WBCs are low, mild neutropenia, and my Rbcs are slightly low as well as big (cell size). I received two units iron for a ferritin of 22 which helped me feel better but didn’t solve it. My myeloma specialists said many of her SMM patients are fatigued. It’s real. And real frustrating.
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1 ReactionI have SMM but also PMR, so I don't know if my fatigue is from SMM, PMR, Rx or because I'm 73...probably a combination of all.
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2 ReactionsI have high risk IgA kappa SMM, normal RBC but low WBC for many years. My BMB is 28% plasma cells (normal a few percent). I'm 72 (MGUS 10 years ago), but before the SMM kicked in two years ago I was biking up mountain passes; now I can do moderate exercise, but my fatigue and loss of endurance limits me. Part of the fatigue is my kappa proteins (+1000 mg/dL); the sticky deranged protein fragments are hard on kidneys. It is complicated by stage 3a chronic kidney disease (norovirus) 3 years ago. Fatigue is my only symptom and I manage it by getting enough sleep (and naps), destressing, escaping into books and activities, and exercise. Having a good support network is important (and avoiding ghosts and toxic people). I can't do endurance exercise now, but weight lifting is good and seems to help my fatigue. My numbers are close to stage 1 MM, but no CRAB yet so no treatment (hoping for clinical trial with bi- or tri-specific antibodies). Weights and exercise also help PMR (training is important).
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2 Reactions@molly1218 Welcome to Mayo Clinic Connect. Many times when our bodies are going through a new health situation, it is a period of adjustment. And many of us who are dealing with SMM, may have other health concerns going on, too. The combination can lead to overwhelming symptoms we weren't prepared for!
Have you spoken to your medical team, and get their input for how you can handle this fatigue? I know for me, it was a trial-and-error thing, understanding how to change/modify my daily activities, diet plan, etc. And a big thing was to acknowledge when the fatigue was real, and be gentle on myself. Don't push yourself even when you want to!
Ginger
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4 ReactionsHave you changed any vitamins or supplements recently? My ophthalmologist put me on AREDS2 eye vitamins and eventually all the zinc in those started to accumulate and multiplied my fatigue considerably. Switching to a zinc free formulation cut my fatigue back to a much more manageable level. If you haven't taken any supplements it might be worth asking your PCP to check zinc and iron. And ask them if there are vitamins or other minerals that might contribute to fatigue you can check. Don't just focus on excesses because deficiencies can add to fatigue too. Fatigue is one of those things people who haven't really experienced it don't understand. They think you're saying you're tired. Sometimes you mean you were on the couch for five hours because you literally couldn't move.