Always run down with MGUS

Posted by dazlin @dazlin, Feb 13 7:13pm

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.

Hello @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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@JustinMcClanahan

Hello @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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@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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@JustinMcClanahan , yes a day off helps, it's just always whenever I do the things I mentioned I get run down. Almost borderline sick (cold sores) little sore throat. I do come around with a day or so off…meaning I still do my errands, housework, and cooking. Just no big chores, or days out, driving hours.
@gingerw , thanks so much for your reply!
I was surprised you said exactly what I feel about wondering if the energy will hold up. Very concerning to me on holidays since I have everything here. It's best case scenario for my parents and 3 daughters with theirs. I dont mind one bit doing things, like you, I'm up early and eager to start…I just don't understand ther severity of fatigue, and body aches, even my voice gets weak…dont even want to talk. I always push through enough to get what I intended done, but then, that's it. Body pain gets unbearable, until I quit. I also cook dinners early, by 1-2 pm.
I basically eay healthy, lots of greens, fish, chicken. Take multi and C, calcium at night. I walk about 2 miles, sometimes more with errands, but never on a day I take on a big chore.
Ginger, did your drs ever explain your fatigue, other than the kidney issues…is this a normal occurrence with MGUS??

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@dazlin

@JustinMcClanahan , yes a day off helps, it's just always whenever I do the things I mentioned I get run down. Almost borderline sick (cold sores) little sore throat. I do come around with a day or so off…meaning I still do my errands, housework, and cooking. Just no big chores, or days out, driving hours.
@gingerw , thanks so much for your reply!
I was surprised you said exactly what I feel about wondering if the energy will hold up. Very concerning to me on holidays since I have everything here. It's best case scenario for my parents and 3 daughters with theirs. I dont mind one bit doing things, like you, I'm up early and eager to start…I just don't understand ther severity of fatigue, and body aches, even my voice gets weak…dont even want to talk. I always push through enough to get what I intended done, but then, that's it. Body pain gets unbearable, until I quit. I also cook dinners early, by 1-2 pm.
I basically eay healthy, lots of greens, fish, chicken. Take multi and C, calcium at night. I walk about 2 miles, sometimes more with errands, but never on a day I take on a big chore.
Ginger, did your drs ever explain your fatigue, other than the kidney issues…is this a normal occurrence with MGUS??

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@dazlin My MGUS advanced into smoldering multiple myeloma officially in Nov 2019, so I am on a quarterly regimen of bloodwork and specialists appointments now. In fact, I go in on 2/25. It is my understanding and belief that the situation has its ups-and-downs, kinda like a rollercoaster ride. The way we take care of ourselves, and learn how to creatively use our energy allotment each day, is the key. The eating healthy and being watchful, like you said, is important. What was hard for me was to acknowledge that I simply did not have the total energy I once had. So, I had to scale back. That was hard. When do you go back to your doctors, next? Write down your questions and listen to what they say. Each person is different, and it might be the right time for your children to start helping you on all those holidays!
Ginger

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@gingerw

@dazlin My MGUS advanced into smoldering multiple myeloma officially in Nov 2019, so I am on a quarterly regimen of bloodwork and specialists appointments now. In fact, I go in on 2/25. It is my understanding and belief that the situation has its ups-and-downs, kinda like a rollercoaster ride. The way we take care of ourselves, and learn how to creatively use our energy allotment each day, is the key. The eating healthy and being watchful, like you said, is important. What was hard for me was to acknowledge that I simply did not have the total energy I once had. So, I had to scale back. That was hard. When do you go back to your doctors, next? Write down your questions and listen to what they say. Each person is different, and it might be the right time for your children to start helping you on all those holidays!
Ginger

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@gingerw , I agree, I feel very disappointed about lack of energy…especially when ambition is high and I so enjoy everything I do. Feels very weird the throbbing achiness and fatigue that suddenly hits. I know I have to plan accordingly. I go back to dr April 28th. The dr oversees my case, adamantly insisted I repeat bloodwork every 4 months. Last time, I saw an assistant and he booked me for 6 months. I have discussed my symptoms, but I feel there's not much to help since my labs are stable. I haven't bothered lately. Anyway, it helps to know this may be related. I sincerely hope you beat this, and get well… sorry to hear your in smoldering…will they treat in anyway, or just watch? thanks for sharing!!

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@dazlin

@gingerw , I agree, I feel very disappointed about lack of energy…especially when ambition is high and I so enjoy everything I do. Feels very weird the throbbing achiness and fatigue that suddenly hits. I know I have to plan accordingly. I go back to dr April 28th. The dr oversees my case, adamantly insisted I repeat bloodwork every 4 months. Last time, I saw an assistant and he booked me for 6 months. I have discussed my symptoms, but I feel there's not much to help since my labs are stable. I haven't bothered lately. Anyway, it helps to know this may be related. I sincerely hope you beat this, and get well… sorry to hear your in smoldering…will they treat in anyway, or just watch? thanks for sharing!!

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@gingerw …also, I was wondering if you had a bone marrow biopsy…only if you don't mind sharing??

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Hi Dazln,
My MGUS was discovered in 2012. To date my M protein has remained low, but my light chain ratio and kappa free quant chains have slowly increased. I am slightly below the threshold for needing a bone marrow biopsy. My problems with fatigue, general malaise, frequent sore throats, chills, etc. began about the same time and have gotten much worse over the years. I 've had to reduce my hours at work to half time and I only go out when I have to. Very frustrating! My physician has not associated my symptoms with the MGUS. She diagnosed me with Myalgic Encephalopathy instead. But, after reading your question and the responses, I may bring it up to her.
Susan

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@susangs

Hi Dazln,
My MGUS was discovered in 2012. To date my M protein has remained low, but my light chain ratio and kappa free quant chains have slowly increased. I am slightly below the threshold for needing a bone marrow biopsy. My problems with fatigue, general malaise, frequent sore throats, chills, etc. began about the same time and have gotten much worse over the years. I 've had to reduce my hours at work to half time and I only go out when I have to. Very frustrating! My physician has not associated my symptoms with the MGUS. She diagnosed me with Myalgic Encephalopathy instead. But, after reading your question and the responses, I may bring it up to her.
Susan

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@susangs, I had to look that one up…think its classified as a chronic fatigue, but pretty severe. Alot of possible causes…viral, immune disorders, and more. Seems some drs dismiss alot of our symptoms being related to MGUS. In my case, as I shared ,my fighter cells are very low, leaving me very susceptible to infection…that the drs did say is from the abnormal cells crowding it out. IMO, maybe that's why I get so tired, feeling run down…I really don't know. I would think your dr ruled that out for you, since she said you have this chronic fatigue…but doesn't hurt to ask if all your healthy white cells are within normal range. Not anemic either, right? It is verrrrry frustrating, and more so when we suddenly experience symptoms that baffles drs. I also get SEVERE RASHES,( maddening)started 6 years ago, and night sweats which are getting worse. Last skin biopsies state similar to Grovers disease. They dont know what triggers it, but I have to be careful about sweating, and topicals, etc.
As for night sweats, last oncologist I saw, said, as long as I'm not soaking through the sheets, hes not too concerned.
What can I say…my guess is, if the numbers on bloodwork aren't out of range, the drs dont connect the dots. Maybe if enough patients share similar symptoms, they'll start recording it. Sometimes I feel like I don't know why I bother to go anymore. If things get bad enough to show on bloodwork, then that's when I may get help…IDK..Shrugg.

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@dazlin

@susangs, I had to look that one up…think its classified as a chronic fatigue, but pretty severe. Alot of possible causes…viral, immune disorders, and more. Seems some drs dismiss alot of our symptoms being related to MGUS. In my case, as I shared ,my fighter cells are very low, leaving me very susceptible to infection…that the drs did say is from the abnormal cells crowding it out. IMO, maybe that's why I get so tired, feeling run down…I really don't know. I would think your dr ruled that out for you, since she said you have this chronic fatigue…but doesn't hurt to ask if all your healthy white cells are within normal range. Not anemic either, right? It is verrrrry frustrating, and more so when we suddenly experience symptoms that baffles drs. I also get SEVERE RASHES,( maddening)started 6 years ago, and night sweats which are getting worse. Last skin biopsies state similar to Grovers disease. They dont know what triggers it, but I have to be careful about sweating, and topicals, etc.
As for night sweats, last oncologist I saw, said, as long as I'm not soaking through the sheets, hes not too concerned.
What can I say…my guess is, if the numbers on bloodwork aren't out of range, the drs dont connect the dots. Maybe if enough patients share similar symptoms, they'll start recording it. Sometimes I feel like I don't know why I bother to go anymore. If things get bad enough to show on bloodwork, then that's when I may get help…IDK..Shrugg.

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I hear you. It's difficult to be in the sick, but not sick enough to be taken seriously
category.

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@dazlin

@gingerw , I agree, I feel very disappointed about lack of energy…especially when ambition is high and I so enjoy everything I do. Feels very weird the throbbing achiness and fatigue that suddenly hits. I know I have to plan accordingly. I go back to dr April 28th. The dr oversees my case, adamantly insisted I repeat bloodwork every 4 months. Last time, I saw an assistant and he booked me for 6 months. I have discussed my symptoms, but I feel there's not much to help since my labs are stable. I haven't bothered lately. Anyway, it helps to know this may be related. I sincerely hope you beat this, and get well… sorry to hear your in smoldering…will they treat in anyway, or just watch? thanks for sharing!!

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@dazlin For now, we are just doing lab work every 3 months. Because I have kidney disease and the function is about 33% the doctor does not want to start any chemotherapy protocol at this point. The reason for this is that if you start the protocol too early eventually it becomes non effective when you really need it to work on the multiple myeloma. I'm okay with that waiting and watching. If your doctor wants lab work every 4 months then insist on every four months, don't let somebody try to talk you into six months. That's what happened to me. My oncologist said "everything was stable so let's try for 6 months". When I went back she was so disappointed because that was when everything had taken a turn for the worse. And I knew something was wrong, but she said "no we'll just wait for the next labs".

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@dazlin

@gingerw …also, I was wondering if you had a bone marrow biopsy…only if you don't mind sharing??

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@dazlin Yes, I have had two bone marrow biopsies. One was in October 2017, one in October 2019 by two different doctors. In the 1st one they diagnosed the MGUS, but the fine print said it was considered low level of Non-Hodgkin's lymphoma, which the doctor said was MGUS. I had the 2nd done by a Mayo Clinic trained oncologist here in my new state. I also had a kidney biopsy done because we had to make sure my kidneys were not being affected by the multiple myeloma at this point. I had no issues with bone marrow biopsies, no complications at all. If you have questions on that I know there is another discussion that talked about bone marrow biopsies, and I can look it up tomorrow when I'm on my big computer.

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@gingerw

@dazlin Yes, I have had two bone marrow biopsies. One was in October 2017, one in October 2019 by two different doctors. In the 1st one they diagnosed the MGUS, but the fine print said it was considered low level of Non-Hodgkin's lymphoma, which the doctor said was MGUS. I had the 2nd done by a Mayo Clinic trained oncologist here in my new state. I also had a kidney biopsy done because we had to make sure my kidneys were not being affected by the multiple myeloma at this point. I had no issues with bone marrow biopsies, no complications at all. If you have questions on that I know there is another discussion that talked about bone marrow biopsies, and I can look it up tomorrow when I'm on my big computer.

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@gingerw , good your in Mayo Clinic. I am too, here in Florida. I'm very pleased with the care, and I really like my oncologist. Seems they assign a nurse, or P.A to discuss labs with me, so I don't always see my dr. I could always ask to see him afterwards. Last time, everything was well explained, so I glad to leave and didn't ask to see him. My next visit in April again will be with another P.A…I really don't like it, but I'll most likely ask to see my Dr to let him know how I'm feeling.
I've had a bone marrow biopsy done in June, so no questions about that, I gave some details in my original post here, but thank you.
I did pretty ok…not a very pleasant experience, but bearable. Only thing, I probably wasn't completely healed when I decided to give my 70 lb Lab a bath…I lifted him into the tub, and that night I was in pain that lasted for 2 more weeks. My fault.
Keep me posted on next visit to dr…I hope for best for you!

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