[Ian]

Re: Experiencing extreme fatigue - how common is it?

by Ian on Sat Jan 06, 2018 4:39 am

Hi Pat,

As far as I can tell, fatigue is unfortunately quite common among people with multiple myeloma. I'm not a biologist, but my guess is that the fatigue is due to a number of factors. Multiple myeloma itself can cause anemia, which can cause immense fatigue, and many myeloma treatments either directly cause fatigue, or indirectly cause it by, for example, disrupting sleep patterns. I also think the stress associated with having the disease puts a lot of strain on the body, causing fatigue.

I think you'll have to experiment with different approaches to solving the problem until you hit on one that works. The one thing I would really recommend, though, is not to ignore your body. If it says it's tired, listen to it, and get some rest so your body (and mind) can heal.

There are a lot of threads here in the forum about dealing with fatigue and also with sleep disruption. Here's a link to the discussions related to fatigue. Here's a link to discussions related to insomnia and sleep.

Both of these links are from this really helpful post pinned to the top of the "[url]Treatments & Side Effects[/url]" section of the forum. There are links in the post that will take you to threads about specific treatments and side effects. including threads with posts people made during their stem cell transplants.

One question: Your latest post says that you are getting weekly infusions of pamidronate (Aredia). Is that really true? Or did you mean to say Velcade?

Cheers!

[michaelgreer]

Re: Experiencing extreme fatigue - how common is it?

by michaelgreer on Sat Jan 06, 2018 10:28 pm

I’ve had just the opposite experience. My increasing fatigue and inability to run was what led to blood tests and the diagnosis of multiple myeloma. I was anemic, my hemoglobin was around 8, and decreased to 7, and I had to get a unit of blood during my whirlwind testing and diagnosis. The next week I started Velcade and dexamethasone. Tuesday and Friday injections and 20 mg of dex on injection day and next day for 2 weeks, then one week off. Revlimid started on second 21-day cycle.

I started feeling better after the first couple of weeks, but found initially I was still buzzing at night after my injections, so might wake and not get back to sleep. I also was peeing every 1-2 hours due to prostate issues. Initially I’d just nap during the day if I was tired. After a couple of cycles, my hemoglobin was rising, and my fatigue was diminishing. I then got a prescription for Flomax (tamsulosin), which decreased the nightly ritual.

Now after a couple months of treatment, my hemoglobin was 14.2 and my anemia is gone. I’ve been able to get back to walking, and working on my projects around the house. I don’t have the strength or endurance I had a year and a half ago before my body started falling apart, but I feel better and feel confident that i’ll be able to complete another half-marathon by the end of summer (I had to sign up for it last summer in a flurry of optimism). I have low blood pressure and pulse rate, so just finished 30 day Holter monitor and will see if my rhythm cardiologist is going to recommend a pacemaker. Also taking blood thinner and several other medications, so not sure how the interplay between them all works out. All I know is I feel so much better now than I did on October 25, 2017.

[Foundry738]

Re: Experiencing extreme fatigue - how common is it?

by Foundry738 on Sun Jan 07, 2018 6:54 pm

To all,

Let me contribute some comprehensive perspectives on fatigue reduction from the multiple sclerosis world that are contained in the paper referenced below. My wife has had multiple sclerosis-related fatigue for 40 years, but has effectively used the strategies plus low-dose, extended-release Ritalin (methylphenidate) to maintain a reasonable life style.

While some of the fatigue sources mentioned in the paper are likely to be unique to multiple sclerosis, the review of possible medications it contains is useful when fatigue remains a problem after obvious causes such as active multiple myeloma, medication side effects, anemia and sleep disturbances, including sleep apnea, have been addressed as much as possible. In particular, depression can be a significant contributor to fatigue, yet some oncologists may under-diagnose it and might need some nudging to accept it as a possibly treatable condition.

SDC

Reference:

"Fatigue in Multiple Sclerosis: Mechanisms, Evaluation, and Treatment," Sleep, Aug 2018 (full text of article)

Abstract:

Among patients with multiple sclerosis (MS), fatigue is the most commonly reported symptom, and one of the most debilitating. Despite its high prevalence and significant impact, fatigue is still poorly understood and often under-emphasized because of its complexity and subjective nature. In recent years, an abundance of literature from specialists in sleep medicine, neurology, psychiatry, psychology, physical medicine and rehabilitation, and radiology have shed light on the potential causes, impact, and treatment of MS-related fatigue. Though such a diversity of contributions clearly has advantages, few recent articles have attempted to synthesize this literature, and existing overviews have focused primarily on potential causes of fatigue rather than clinical evaluation or treatment. The aims of this review are to examine, in particular for sleep specialists, the most commonly proposed primary and secondary mechanisms of fatigue in MS, tools for assessment of fatigue in this setting, and available treatment approaches to a most common and challenging problem.