I've been having days of pain. A better word might be aches: arms, lower legs, and as funny as it sounds, my fingers. It feels like the cramps in my arms and legs.
Also, just this year, I have become sensitive to cold air from the air conditioning. Normal?
Are there any other "smolderers" experiencing pain? Thanks.
Forums
Re: Is there pain with smoldering multiple meyloma?
I usually just read posts and try to learn all that I can. That being said, I rembered how worried I was shortly after being diagnosed with SMM and experiencing pain in my ribs. I am lucky, I see A Multiple Myeloma specialist wo ordered tests/scans and it turned out to be nothing Myeloma related. What I have read on this site over and over again is the importance of seeing a specialist.
If you haven't already, please tell the doctor about any pain you have. If you don't already consult or see a specialist, please consider that too.
Hope you Smolder for a very long time
If you haven't already, please tell the doctor about any pain you have. If you don't already consult or see a specialist, please consider that too.
Hope you Smolder for a very long time
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Smittie - Age at diagnosis: 54
Re: Is there pain with smoldering multiple meyloma?
Hi,
I also have smoldering multiple myeloma and I have pain in my arms and in my fingers. I had an X-ray a year ago (when it started) but there was nothing wrong in my arms or fingers.
But the pain still exists. Some days are worse than the others. And it seems to be getting worse over time little by little.
I also have smoldering multiple myeloma and I have pain in my arms and in my fingers. I had an X-ray a year ago (when it started) but there was nothing wrong in my arms or fingers.
But the pain still exists. Some days are worse than the others. And it seems to be getting worse over time little by little.
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MissF
Re: Is there pain with smoldering multiple meyloma?
MissF, are you seeing a myeloma specialist?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Is there pain with smoldering multiple meyloma?
I'm seeing hematology three times per year. I don't think we even have here in my country a myeloma specialist.
In my case, I have no CRAB symptoms, but my bone marrow has 10% "plasma cells" when you should only have <5%. For some reason, my bone marrow had quite a lot of some kind of fibrosis (we do not know what is that or what is causing that), so it was very hard to get any samples from my bone marrow. They were not able to get any aspirates but they did get some biopsy of the bone marrow. Hopefully next time (hopefully not any time soon!) they are more prepared for these kind of problems. It was a terrible experience ....
In my case, I have no CRAB symptoms, but my bone marrow has 10% "plasma cells" when you should only have <5%. For some reason, my bone marrow had quite a lot of some kind of fibrosis (we do not know what is that or what is causing that), so it was very hard to get any samples from my bone marrow. They were not able to get any aspirates but they did get some biopsy of the bone marrow. Hopefully next time (hopefully not any time soon!) they are more prepared for these kind of problems. It was a terrible experience ....
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MissF
Re: Is there pain with smoldering multiple meyloma?
Miss F, what country are you in?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Is there pain with smoldering multiple meyloma?
Hello,
I have been smoldering since 2013 and I was diagnosed due to chronic illness and chronic pain. The pain, as it turns out, was peripheral neuropathy caused by my multiple myeloma. In multiple myeloma perhipheral neuropathy is mainly secondary to the cancer and is drug induced but neuropathy can also be a primary symptom caused by antibodies to myelin associated glycoprotein.
This happens most often with patients that have immunologic abnormalities as a result of their myeloma and I'm not sure why but possibly because the neuropathy is an antibody response to the myeloma.
There are almost never lytic lesions in the distal extremities, especially fingers. My pain was all distal and confirmed with neurological testing.
Thanks
J
I have been smoldering since 2013 and I was diagnosed due to chronic illness and chronic pain. The pain, as it turns out, was peripheral neuropathy caused by my multiple myeloma. In multiple myeloma perhipheral neuropathy is mainly secondary to the cancer and is drug induced but neuropathy can also be a primary symptom caused by antibodies to myelin associated glycoprotein.
This happens most often with patients that have immunologic abnormalities as a result of their myeloma and I'm not sure why but possibly because the neuropathy is an antibody response to the myeloma.
There are almost never lytic lesions in the distal extremities, especially fingers. My pain was all distal and confirmed with neurological testing.
Thanks
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Is there pain with smoldering multiple meyloma?
Hi fellow smolderers,
My husband has been found to be smoldering with 30% plasma cells in bone marrow. His first inkling that something was wrong was bad nerve pain in his feet, legs, arms and torso (tingling around his belly). He also had digestive issues -- as if the food would not digest and he became very constipated. The nerves were affected all over his body. His blood pressure dropped drastically, too, which was a real issue and cause lightheadedness. He has no lesions.
Because of his pain, his doctor began treating him with Velcade, dex and Cytoxan. The nerve pain did get better over three weeks of Velcade (one shot per week). Now, he has very little nerve pain but a lot of weakness in the legs. His leg muscles would randomly twitch after this all began last June. It's been rough, considering he is only smoldering.
I have a friend who is smoldering and she has NO pain or problems. So I guess it's different for everyone. I had read that 10-15% of myeloma patients get neuropathy, but it seems to be reversible with treatment. I don't think Velcade was a wise choice since it can cause neuropathy, too. But his insurance denied Revlimid.
Just thought I would share his experience.
My husband has been found to be smoldering with 30% plasma cells in bone marrow. His first inkling that something was wrong was bad nerve pain in his feet, legs, arms and torso (tingling around his belly). He also had digestive issues -- as if the food would not digest and he became very constipated. The nerves were affected all over his body. His blood pressure dropped drastically, too, which was a real issue and cause lightheadedness. He has no lesions.
Because of his pain, his doctor began treating him with Velcade, dex and Cytoxan. The nerve pain did get better over three weeks of Velcade (one shot per week). Now, he has very little nerve pain but a lot of weakness in the legs. His leg muscles would randomly twitch after this all began last June. It's been rough, considering he is only smoldering.
I have a friend who is smoldering and she has NO pain or problems. So I guess it's different for everyone. I had read that 10-15% of myeloma patients get neuropathy, but it seems to be reversible with treatment. I don't think Velcade was a wise choice since it can cause neuropathy, too. But his insurance denied Revlimid.
Just thought I would share his experience.
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Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Is there pain with smoldering multiple meyloma?
I am new here and still waiting to see a specialist. What took my interest on your post is that this year I too have become extremely sensitive to air conditioners. I have had to walk out of supermarkets and big stores because I couldn't stand the cold. Very unlike me, as I used to love the air conditioner. In fact, it was something that sent me to the doctors to find out why I was feeling so cold! Especially in my feet, but on my face and arms as well.
It was a mystery, first time I have seen this mentioned anywhere. Thank you.
It was a mystery, first time I have seen this mentioned anywhere. Thank you.
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Ozziegirl - Name: Ozziegirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 66
Re: Is there pain with smoldering multiple meyloma?
My husband had three treatments with Velcade and four with Cytoxan. His smoldering myeloma symptoms of neuropathy disappeared!! He could feel the carpet again and the cold floor! He was so happy. Cold temperatures seemed to make the nerve pain worse. His fingers and feet were like ice. His arms ached and so did his legs and feet especially.
While I am thrilled that the neuropathy went away, I am disheartened that the Velcade or Cytoxan put him into atrial fibrillation and now we are battling that. He has a tendency towards that anyway, and has already had a heart ablation a while back. His muscles are wasting. His legs and buttocks are nothing. Skin and bones. He is so weak.
It's Christmas Eve and he's in the hospital. Not sure if it is a kidney infection, or what. His heart enzymes are elevated, too. They supposedly tested him for amyloidosis (which his sister had) and the bone marrow smear and Congo red stain were negative. I hope they did it right.
He has a good prognosis they say, yet he's having a terrible time with smoldering myeloma. I am baffled.
While I am thrilled that the neuropathy went away, I am disheartened that the Velcade or Cytoxan put him into atrial fibrillation and now we are battling that. He has a tendency towards that anyway, and has already had a heart ablation a while back. His muscles are wasting. His legs and buttocks are nothing. Skin and bones. He is so weak.
It's Christmas Eve and he's in the hospital. Not sure if it is a kidney infection, or what. His heart enzymes are elevated, too. They supposedly tested him for amyloidosis (which his sister had) and the bone marrow smear and Congo red stain were negative. I hope they did it right.
He has a good prognosis they say, yet he's having a terrible time with smoldering myeloma. I am baffled.
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Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
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