Always run down with MGUS

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 🙂🙌🏻

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?

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!

@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

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.!