Multiple Myeloma: Could fatigue and breathlessness be ME/CFS?

Posted by palepa @palepa, Dec 15, 2024

Has any MM patient been told their fatigue and breathlessness is caused by ME/CFS? If so, how is it being treated

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@palepa, fatigue and breathlessness are debilitating and real. They are also symptoms of a wide-range of conditions. I read elsewhere that your husband has multiple myeloma and is also struggling with long COVID symptoms. Long Covid often mimicks Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Similarly, multiple myeloma and its treatments can cause similar symptoms. I would imagine that it is near impossible to know difinitively which condition is the underlying cause of fatigue. I'm tagging fellow members like @allstaedt57 @heathermcfarland @gingerw @itlooksunny who can share their experiences.

@palepa, is your husband being treatment for multiple myeloma?

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Fatigue and breathlessness were the reasons that I went into my GP in the first place. It was Nov 2022 and I was reading a lot in the news about long-covid and thought that was my problem. Turns out that I was severely anemic (thus the fatigue and breathlessness) which prompted my doctor to get a full blood panel. From there I was diagnosed with Multiple Myeloma.

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@colleenyoung

@palepa, fatigue and breathlessness are debilitating and real. They are also symptoms of a wide-range of conditions. I read elsewhere that your husband has multiple myeloma and is also struggling with long COVID symptoms. Long Covid often mimicks Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Similarly, multiple myeloma and its treatments can cause similar symptoms. I would imagine that it is near impossible to know difinitively which condition is the underlying cause of fatigue. I'm tagging fellow members like @allstaedt57 @heathermcfarland @gingerw @itlooksunny who can share their experiences.

@palepa, is your husband being treatment for multiple myeloma?

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My husband is taking Lenalidomide 15mg daily 3wks on 1 week off & Dexamethadose..1 day per week

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@palepa Well, I deal with multiple health conditions, one of them being multiple myeloma. I go through periods where there is a fatigue factor to my daily routine, but it is not consistent.

It is my opinion that there are certainly contributing factors to my fatigue, not just one thing. Where I may be on my treatment schedule. What healthy [or, not so healthy!] foods I am indulging in. Did I overdo myself the day before? I do have a history of anemia, and that can be caused by the multiple myeloma, or by my kidney condition, and it can create fatigue.

Careful monitoring of your situation is important. Please take the time to rest, but on the same hand try to keep yourself active to the degree you can handle.
Ginger

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@palepa

My husband is taking Lenalidomide 15mg daily 3wks on 1 week off & Dexamethadose..1 day per week

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@palepa Has your husband responded well to the lenalinomide? How long has he been on this regimen? I also do this regimen of lenalinomide + dexamethasone + ixazomib [the last one for three months now].
Ginger

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@heathermcfarland

Fatigue and breathlessness were the reasons that I went into my GP in the first place. It was Nov 2022 and I was reading a lot in the news about long-covid and thought that was my problem. Turns out that I was severely anemic (thus the fatigue and breathlessness) which prompted my doctor to get a full blood panel. From there I was diagnosed with Multiple Myeloma.

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In January, 2022, my husband came down with what we thought was a mild case of Covid. In February & April 2022 hospitalization requiring blood transfusions each time 4 bags. Also dealing with POTS which we attributed to Covid. Initially blood loss thought to be huge ulcer near pylori and another on esophagus. In 2023 went to see hematologist/oncologist re low blood levels, POTS , which we thought was all due to Long Covid which very few in Honolulu seem to acknowledge with anything other than a nod of the head. Doctor ordered tests, scans and MRI…October 2023 MRI showed multiple compressed fractures throughout my husband’s back/ribs but he felt no pain. He refused bone marrow biopsy and blood levels just wouldn’t increase and kidney levels also NG. After 5 months of extreme fatigue and POTS while relaxing and resting at a tropical resort which my husband thought would cure all his ailments he finally acknowledged it was someth8ng more than Long Covid. May 2024 he agreed to bone marrow biopsy and June started treatment. This is end of December and he’s been off of his meds for almost 3weeks and he is extremely breathless (cannot walk 10 feet w/o panting) restless and can’t sleep at night and sleeps on and off all day long. He does use oxygen. He is now convinced he has ME/CFS.,. ..he has a few of the symptoms….

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