Smoldering Multiple Myeloma and symptoms

@maddogstormy Welcome to Mayo Clinic Connect! I see you have been a member for a couple of years, and this is your first post.

Perhaps your hematologist oncologist will be better able to answer your concerns about the dull aching. If you have additional health concerns, they might be all toppling on top of each other. Not to mention the anxiety of hearing you progressed from MGUS to smoldering myeloma! Take time now to write out a list of questions for that appointment. I also suggest to journal out the symptoms you are experiencing. Time of day, activities you are doing, degree of discomfort, details about the aching that will be beneficial to you and your medical team. You might find a pattern.

Will you let me know what your team says after your appointment next week, please?
Ginger

SMM is also what I have. Caught it with routine blood work. Not sure how long I had MGUS. I go to Mayo on Tuesday for blood work. It’s always a stressful time for me. Nervous. Every 6 months. I’ve had SMM for about a year. The abnormalities I have are stable. I have no bone pain. Just numbness in fingers and feet. I tire more easily. I’m 67. But I am very active. I know MM your immune system is compromised and you can be sicker. But over all SMM should not have physical symptoms. Maybe it’s something else. When’s the last CT scan or MRI? PET scan. The gold standard are of course BM complete with cytology FISH PC diff. SMM is a difficult prognosis. Cause any and everything makes you suspect the worse. Been there. Done that. SMM may never amount to anything. But the worrying is a constant. No way around it. Just stay vigilante. Notice the unusual stay on top of it. You will be fine

I have been SMM for 8 months
I have upper back & right hip pain off & on.
I was still smoldering as of March 28th.
I go for a PET scan July 15th
I suggest a MRI or PET scan if bone pain persist or worsens

I'm sorry you're experiencing some new symptoms. I am also very curious about bone pain. It's been difficult to find a really good description of what it feels like. I have pain in one ofmy thighs. In the front .That's rather indescribable. It's not in the muscle or tissue because if I massage it roughly I can't feel the pain. I've had great difficulty trying to describe it to my doctors. What does yours feel like?

Thanks Ginger. I appreciate the thinking and will make sure to keep an accurate log of the symptoms and I will let you know what we find next week.

Thank you Matty.
Sorry to hear you are having some similar questions. It’s kind of weird. I have had a sore neck and shoulder for a year now. Like I slept wrong. 3 courses of PT to help with no real change. Weekly massage work primarily focused on the Vegas nerve. Some relief but not lasting. It’s now difficult to turn to look over my shoulder. X-rays negative. MRI spine negative. MRI bone marrow scan negative. CT scan negative. It’s continuing to get worse and now I have this sensation of a constant humming ache almost everywhere. Like when your immune system kick starts with a twinge. Almost like I had walked 12 miles but I have not been able to work out for four months due to fatigue. Sometimes I try to walk to work and have to take a car service just a block from home. I am just hoping I am not active and can still qualify for a clinical trial starting in August at Dana Farber. I am blessed with good care all round. A wonderful family and 2 children and I am also concerned and working to prepare for the worst case and to prepare for the best case. Both are challenging.

Diagnosed MM Jan '25-. Started treatment Feb. Pre diagnosis... anemic!! mild dizzy spells & exhausted!! No bone pain- some have lower back pain etc.

I just was diagnosed with SMM on Wednesday after my BMB showing 20-30% plasma cells neoplasms, kappa lambda ratio < .1 and an abnormal number of plasma cells for my age of 60. I was originally diagnosed in June 2023 with MGUS after having a DVT and discovering i have genetic leiden factor V. In January 2025 me abnormal protein band 1 and my IgG Lambda had increased 25% in 12 months. My hematologist oncologist is being proactive and i am now scheduled for a full body CT PET scan August 1.

I have numbness in my right thumb and two fingers and sore low back and left outer hip 24/7. I have heard promising results from others who have undergone treatment. Until they tell me I have something to worry about, I am going to keep my journal and live every day to the fullest!

Hi Donna
Thank you for sharing this part of your story. I am also having a follow up PET scan in August. My full body bone marrow scan in April was negative thankfully. I was wondering if you have heard anything about new tracers they are using to capture any emerging neoplasms that are in the marrow or bone tissue. The research seems to be changing radically monthly. I am feeling more prepared for my upcoming quarterly appointment and labs. I do appreciate your thought about valuing every moment to the fullest. Thanks. Brian

My hip & back feels like it's in my actual bones
I've always had back problems but not the hip