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Always run down with MGUS
Not really sure if its related, but I get super wiped out after a couple hours of chores, or just shopping, my entire body aches badly. I have so much drive, and love getting everything done, love cleaning, cooking, gardening, and simply enjoying everything in order and organized. Seems lately, more so than the last 2 years since I was diagnosed with MGUS, once I get tired doing whatever, I'll come down with cold sores by next day, usually in my nose, sometimes on my lips. I now have meds for it. Then I'm wiped out for a few days. I dont let it stop me, but I'll admit I'm uncomfortable doing my usual. Drs continue to monitor my labs, and nothing really has progressed. I'm not anemic, and most bloodwork is within normal range. My IGM'S are very low, said to be crowded out by the abnormal cells. The IGM'S are the main white blood cells to fight infection, so I'm at risk, but I never get sick, or run fever, thank God. Just ALWAYS run down. I'm disappointed, and I always feel like even a trip to see my new baby grandson about an hour and 20 minutes drive, will leave me very tired, and run down next day. I actually plan to keep my outings short. I had a bone marrow biopsy done last june...cells are 4% IGG KAPPA...no treatment at this level. Does anyone here experience anything similar to me, with MGUS, and if so, does anything help? I think I'm starting to feel bit disheartened because I'm so active and enjoy doing alot, but my body quits, how sad.
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@JustinMcClanahan Thank you for tagging me in to this conversation, Justin.
I was diagnosed with MGUS in Nov 2017, and have had issues with fatigue since 2015 or so. Like you, @dazlin there are days when I feel full of energy. Up and at 'em early, accomplish things on my list, then collapse in early afternoon, unable to even think about fixing an evening meal. It is always in the back of my mind when planning something, if the energy will be there when I ask for it. Sometimes I push on through it, knowing I will be pretty tired the next day, sometimes not getting good rest at night. I try to plan "down time" to recharge my batteries, even during the day. There are a couple of things that I would suggest. First, a complete set of bloodwork done, to make sure there are no other things going on. Have a open and honest talk with your oncologist about your fatigue. [I have a comorbitidty of kidney disease] Take stock of your diet and lifestyle. Eat as healthily as you can, eliminate those foods which may be harmful to you. Take a multi-vitamin and/or supplements as you and your dr see fit. Finally, honor yourself, and do not beat yourself up for having to slow down.
Ginger
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3 ReactionsHello @dazlin. I'd like to invite @gingerw, @gmajudy, @stuckonu, @susangs, and @canderson12 (from this conversation, https://connect.mayoclinic.org/discussion/mgus-2d464e/) to this conversation to talk specifically about their experience, if they have any, with feeling fatigued with their diagnosis of MGUS. While it is good that you are still in a status that does not need treatment, it certainly sounds frustrating that you are experiencing increased levels of fatigue that are preventing you from doing things you enjoy. When you are feeling run down, does taking a day to recoup typically help, or does it just get you back to a still fatigued state? Any activity in particular drain you, or is it just being active in general?
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