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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I understand what you are saying and in my case its difficult to determine if its from MGUS or merely old age (75). I also have extremely high inflammatory issues with my Gleich syndrome so I know that contributes. My philosophy is I refuse to let it dictate my life as much as I can as its sounds like thats what you do. There are days that there is little energy to draw from but I feel better pushing myself than not. Good luck sounds like you are handling it great and understand what you are feeling is normal to feel.
@4kleo I'm so sorry to hear that. When I was first diagnosed with MGUS, I had a similar experience. In retrospect, I have to chalk it up too being terrified. I was so anxious. I went to my PCP who did yet another round of blood analysis and checked me for all the usual suspects when one is experiencing lack of energy. I was convinced the Grim Reaper had me in his insidious clutches, but she reassured me that my blood chemistry did not indicate a problem outside of the M paraprotein in my blood. It took time for me to believe her, however. My energy did not come back right away. I attribute this to heightened anxiety and I did have elevated white blood count for about six months after my diagnosis which I attribute to reactivity. That was three years ago and I have to say that my energy level has returned to whatever normal is for my 73 years.
I'm not implying that this is all in your head, You should probably have a discussion with your PCP about this to rule out any physical complications. Some of our members have experienced lack of energy with their MGUS diagnosis. I do have peripheral neuropathy which slows me down considerably as far as walking is concerned.
What does your hem/onc say?
I just came in for a walk from a 1 mile walk. I usually do two or three. I’m exhausted and not able to catch my breath. I came in and started looking up shortness of breath connected with MGUS this is a new development for me in the last couple of months. I was diagnosed in November and since then I have steadily declined in my level of energy. Like you I am busy and active and always on the go and this is slowing me down way too much. I’m wondering if there’s anything I can do to get my energy back ? I eat a good diet ,I drink a lot of water, I take a plethora of supplements. Always have, and I normally walk two or 3 miles each day . Now I’m finding that a mile is about as much as I can do And I miss being outdoors to do it. If Someone has some suggestions, please let me know because this is just not fun.
Consider having your doctors check for other potential ailments. It is handy to keep a food log and document any symptoms that you have. I've had MGUS for 8 years (I'm 70) and asymptomatic so far (kappa is ~300 and kappa/lambda 29). I do have a few autoimmune diseases and newly diagnosed chronic kidney disease that can result in fatigue if I get stressed. My celiac or MGUS associated polyneuropathy hasn't worsened in the last decade. I exercise, get enough sleep, and try to do something fun every day. If you don't have the energy for aerobic workouts, resistance training (weights) can increase muscle mass. Because of celiac and colitis my diet is very restricted, no gluten, legumes, NSAIDs or some other meds.
I have MGUS too - but was told it does not affect me now or anything to really worry about. I had VERY low IGg which DID effect me greatly and now I am on monthly IV - for rest of life (78) and feeling much better. I too have less energy but my RA and muscular atrophy is causing that …. Am I missing something about MGUS??? Best to all!
Ginger, thank you for your response. And for sharing your update that’s very personal and thank you very much. I just tried to do rearranging of a shelf in my closet. It was 15 minutes and I am now resting with that cup of tea. I really hate this slowing down, but I see through your graceful attitude that I can do it too. Thank you so much for being here for me. Best wishes for a happy holiday season for you, Karen.
@4kleo I don't recall if I have welcomed you to Mayo Clinic Connect. If not, here it is!
When we are so used to having seemingly unlimited energy, to have a sense of fatigue can really throw us for a loop. Take some minutes to fix a cuppa tea, sit down and think through how you might be able to approach this now with a different outlook. Perhaps you have been always "doing for others", well, now "do for yourself". It's okay to revamp your schedule. And in the long run, you just might find that the newer, more relaxed version of you is a good thing. Does it take getting used to? Will you question it, or might your family and friends wonder? Oh, my yes!
Continue to eat healthy, get good rest, perhaps change your priorities a bit. MGUS is not a death sentence. And frankly, at 75 we have the right to listen to our bodies and back off a bit! I am 72 now, myself. The post you referred to is 4 years old. Since then, I have been on active treatment for multiple myeloma since August 2021, and on daily peritoneal dialysis since Sept 2022. Is my energy level where I would like to to be? No, but I have forgiven myself for that and learned to be gentle on myself, doing what fits each day. You'll get into the swing of things in a short time, I have no doubt.
It's a learning curve. Be gentle on yourself! Continue to keep in touch with me!
Ginger
Ginger, thank you for your reply. I have just been diagnosed with MGUS in November this year. I have unbelievable fatigue. I am a very active 75 year old Nonnie that is busy every single day with house and yard and grandchildren and church and dance club and book club and supper club it goes on and on. I stay very busy. I just don’t even know how to adjust myself down to this pace. I’m so fatigued all the time I get up feeling OK and then do as much as I can but in two hours, I’m ready to take a rest. That’s not me. I don’t like it. This is really early for me and not much going on. They made this diagnosis and said come in six months to repeat Scan annd blood work. and if your spleen has enlarged more ( that was the only thing they found) They would do a bone marrow biopsy. This leaves me in the dark and concerned and probably worrying about things. I don’t need to be worrying about. I do eat a healthy diet. I have a good BMI and I walk every day a couple of miles and enjoy being outdoors. this is just a slap in the face for a woman who hasn’t even taken a prescription yet.!
@teralinda1 Welcome to Mayo Clinic Connect! I am quite sure you will find many of us nodding our collective heads in agreement and sympathy with your post.
The first thing I would suggest is to check with your primary care doctor, and get some baseline tests done, making sure there is nothing else going on. Then check with your hematologist oncologist to see what they might recommend. Many of us find we need to reconfigure our lives and understand our energy levels might be affected. Checking to see what medications you are on, and possible side effects, may give you some insight also.
Moderate exercise, healthy eating and stress reduction can go a long way to helping us on a day-to-day basis when we are dealing with MGUS. If we have been a very active person, it is disheartening to get older/not feeling as energetic. Sometimes talk therapy is in order. I wish I could do half of what I did 5 years ago!
Ginger
I am chronically fatigued to the point where I cannot function. My vision has been affected, I get wiped out from even a gentle yoga class; my muscles and bones hurt and I’m even more exhausted. I often feel out of breath. I am now very depressed because I was a health and fitness trainer and I can’t do the things I enjoy! Are there any drugs to help with my energy level? This is not living!