Extreme Fatigue

I have had MGUS since 2003
Be glad to discuss this confition

@geegee5a280l Hi.
MGUS is not always cancer.
May I contribute?

Anti-MAG Peripheral Neuropathy: Understanding a Rare Autoimmune Nerve Disorder
https://swaresearch.blogspot.com/2026/06/anti-mag-peripheral-neuropathy.html
and
M Protein, C Protein, Factor V, and APS: Their Roles in Thrombosis and the Newly Identified VITT-Like Disorder
https://swaresearch.blogspot.com/2025/02/m-protein-c-protein-factor-v-and-aps.html

Welcome to Mayo Connect, @geegee5a280l Thanks for joining in the conversation and your willingness to discuss your experience with having MGUS since 2003! That makes you quite a veteran with this blood condition.

Connect has a lively group of members who also have MGUS. Here is a link to the results of a quick search in the forum for those discussions. https://connect.mayoclinic.org/search/

Please feel free to drop into any of those conversations to share what your experience has been. Have you noticed a progression of your disease over those years? Are you currently on any medications?

Hello, elcy. An ET diagnosis hits hard.

And it's really scary to not have energy for the simplest things. ET can leave us totally exhausted.

What's your oncologist's treatment plan?

While we are all different, may I share that for me hydroxyurea (HU) gave me back my strength?

Whether with HU or some other medication, there IS hope!

Please know that you're among friends here! We have all been on the ET roller coaster too.

I was diagnosed with PV in fall of 2015.
been on Hydroxyurea now for a 4+ years, twice daily.
the fatigue has become almost unbearable, sleeping my life away if I am not actively working to keep my insurance & home to sleep in.

Trying to find balance via acupuncture and a better diet...
will gladly accept ideas to combating the fatigue that have worked for others.

I have ET , JAK2 diagnosed this spring. Also on HU once per day. My extreme fatigue hits around two. I take an hour nap plus meditation and then try to be in bed no later then 9:30. I’m wide awake between 4:30-5 each morning which bothers me but can’t seem to be able to kick it.
Have you seen an MPN specialist. I know there are newer drugs that would help with symptoms.
Best of luck in finding answers.

@derekbrehm
Hello friend! I understand the impact that HU can have on a blood cancer patient! People who have not suffered with this , can not comprehend how difficult it is! I would stress to my doctor just how difficult life is ! There are new medicines which are not as hard on our RBC HGB AND FATIGUE!
Explain to your doctor the severity of your fatigue!
Even sleeping constantly does not help feel stronger 😥 the feeling is such that no matter what happens, one cannot do anything to change ! I hope you can get inspired to talk to your doctor or provider !
You should not suffer in silence 🤐 many of us , would encourage you to pull yourself together and insist on help ! Good luck 🍀

Thank you everybody. I was just diagnosed last week. I had a bone marrow biopsy yesterday waiting for those results. My doctor prescribed hydroxurea but before so start it I want to discuss Besremi with him. Next appointment is Friday

@derekbrehm

Me on HU for last four years . Pltlts count 6.5 currently and my age is 65 living in India . For my fatigue this helping me . Morning half hour walk then half hour swim and sitting in sunlight for 20 mnts before walk doing some breathing exercises . Light vegetarian food and have just two meals with last meal before sunset as this circadian cycle helps a lot . When this routine is followed there is no fatigue that day . Feel everyday any exercise , light food and sunlight helps a lot .
Wishing all strength to face whatever comes on the way

I have been on HU for 30+ yrs for ET with dosage currently @ 5k/wk. I have never experienced what I would describe as fatigue but in those early years I was also found to not absorb B-12 (pernicious anemia) so I’ve been giving myself monthly injections of cyanocobalamin. Since B-12 is not included in the standard blood test (at least mine) you may want to ask your doctor about testing for that. Although this may not explain what many of you are experiencing, it can eliminate it. I sincerely hope the fatigue is temporary rather than an ongoing problem.