Always run down with MGUS

Posted by dazlin @dazlin, Feb 13, 2020

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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@mguspixi25

That’s really lovely of you Patty ❤️🙂
Here, the staff - especially in emergency departments - have very little sense of urgency or patients as the priority, they spend much time socialising, on their phones, snacking on sandwiches and food that is supposed to be for patients who haven’t eaten for hours (sometimes you lay there for a whole day with no actual investigation..they’re wearing you down till you leave and go to another facility) and spend a lot of time telling you your delusional and symptoms you’re reporting aren’t there - being a squeaky wheel (especially in ER) has had me talking down the security staff and big male nurses wielding needles filled with sedatives who are threatening to put me in an involuntary psych hold for continuing to insist I have something wrong when I don’t (even though they never investigated symptoms). That was when I had a bad fall and damaged my knee replacement - I’m still awaiting surgery (I fell in January) for the repair - can’t weight bear on my leg for all these months (and it’s hurting). I escaped that hospital when I told them I needed a wheelchair to go toilet - I rolled outside with the sheet wrapped around my head and shoulders like a scarf, down the street, got a cab home, and after a couple of weeks I managed to get to a private surgeon who said it should’ve been operated on immediately. So, asking for a social worker in that instance was laughed at, because once they have it in for you, they do what they can to harm you. It’s very dangerous taking chances in some public hospitals here. Other times I’ve been withheld pain meds after orthopaedic surgery by nurses in the middle of the night, until I’m screaming in pain, then held down and strapped to the bed because the same nurse said I refused to take medication which resulted in a psychotic break (totally untrue). Again, in the public system. That same nurse refused to help me with a kinked catheter and I ended up laying in a puddle around my stitches for god only knows how many hours during the night. This was all at a major teaching hospital. There are major power imbalances here; major threatening behaviours from staff who are aggressive when patients don’t conform to what they want.. there are signs everywhere that threaten patients with non compliance they will be removed/denied treatment/charged. The staff take these policies to the nth degree - patients are clearly afraid a lot of the time. So I think there’s little concern from these institutions regarding actual patient welfare - hence why we never get to see a social worker. I’ve been thinking to reach out to former patients and catalogue experiences…at the moment, there’s an actual governmental enquiry into the traumatic experiences had by people in health services…that’s how bad it is.
Submissions are being taken, and passed on to the inquiry; stories from people, and the families of those who didn’t make it (those who had families).
I’ve written a submission, and have offered to appear anonymously in front of the inquiry panel (I’m afraid of bias against me if I identify myself and need to go back to a public hospital), but I want the govt to know what a festering pool of corruption that is what is called the health system.
We do our best to laugh it off, sure; but beneath the not quite comfortable grin is fear and trauma, unfortunately.
My degree is occupational therapy, and I always tried to do my best in a corrupt system - seeing many things that made me not able to sleep at night in the short time I was exposed to the system and the staff as a worker (I just never went back). I wish squeaking was a safe endeavour, and I appreciate the prima facie approach but it’s not safe to assume that that kind of approach will work amongst such corruption and dare I say abusive institutional environments. However, I do squeak from a distance, as a systemic advocate, from the safety of behind my computer screen 🙂🙌🏻

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Good grief that’s horrendous. Yes by all means do document your experience. How awful.
Reminds me of the book One Flew Over the Cuckoo’s Nest.
I guess I’ll have to step back from that recommendation… Just be safe!
Patty

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Same
Same
Same

Ridiculous fatigue.
Cannot even keep up with the mundane anymore.
Pain problems.
Recovery days look like 12-18 hours of continual sleep for me.
It’s unimaginable.
And it’s invisible unless you live with me.
But it is very very REAL.
I run fevers, lose my voice, go through stretches of nightsweats (no rhyme or reason-autoimmune disorder “flares” ?
I really don’t know.
BUT there is no doubt that I am run down and by body reacts strongly to all exertion and that once was “normal” is no longer even possible.
I love the “GOOD” days!
They are, however, unpredictable.
My body is no longer reliable enough for me to take on employment.
(I did not experience the onset of fatigue while employed, so it was not “measured” in that sort of official manner related to sick leave. I was a homemaker, educating our three children at home, and growing as much of our food supply as possible from gardens to animal husbandry. Dx with MGUS at 42 was a weird surprise and for me it has had consequences but doctors do not make those connections.)

I have lost my lifestyle and the meaningful work that I loved as well as many relationships and the richness of community life. I have become isolated in my rural setting as driving distances became a greater challenge with the fatigue and pain and unexplained neuropathies.
Frustrating to say the least.
I walk the tightrope of
tension between hope and contentment each day.)

Bless you!
I wish you all MORE “good days.”

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