Hello,
A long time MGUSer, I started to get sick more frequently in 2011, mostly ears and sinus infections, and eventually I had a BMB [bone marrow biopsy] that moved me to the smoldering myeloma category for plasma cell dyscrasias in 2013. I am still sick too often but even worse than being sick with recurring bacterial infections is being affected by post exertional malaise. I can't exercise at all without having flu like symptoms the next day and sometimes for 2 or more days.
I read an article recently that suggested the possibility of immunoparesis being a catalyst to active disease instead of a symptom of active disease, and so I'm curious to know if perhaps there is a different underlying cause for the deficiency and if PEM is telling.
PEM is most often associated with chronic fatigue syndrome but it can also be caused by immune deficiency. However, I suspect there are several smolderers that have immunoparesis and I was wondering if PEM is a shared symptom?
Best
J
Forums
5 posts
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Does anyone else suffer from "post exertional malaise"?
I was just diagnosed MGUS this spring. I get the final results of my BMB this Friday, but I strongly suspect it will confirm the MGUS diagnosis.
I was also diagnosed with fibromyalgia years ago. Initially, I just had flu-like symptoms often, body aches and fatigue. Despite this, I was still able to take long walks and remain fairly active with a busy full-time job and several outside activities including weekly groups.
In the past 2-3 years something has changed. Just "overdoing it" in a day can set me back. And I have found that even a short walk or normal moderate exercise / activity can send me to bed for a day or two. I can do a 5 minute walk, not a one hour walk. I tried helping with a leaf raking fund raiser for the school last fall. I worked for about 1 1/2 hours and honestly, the fallout was awful. I was in pain and in bed for several days afterwards. I think I even had a very low grade fever.
Like you, I also frequently get ill with mild / moderate illness: sinus infection, flu, bronchitis, ear infection, etc. I say mild because so far I've not had to be hospitalized.
There is nothing in my lab work up that can clearly explain this. I do have a slightly decreased IgM.
I wish there were a way to ameliorate these symptoms. I have no clear disease, but I am frequently disabled from even basic activities.
I was also diagnosed with fibromyalgia years ago. Initially, I just had flu-like symptoms often, body aches and fatigue. Despite this, I was still able to take long walks and remain fairly active with a busy full-time job and several outside activities including weekly groups.
In the past 2-3 years something has changed. Just "overdoing it" in a day can set me back. And I have found that even a short walk or normal moderate exercise / activity can send me to bed for a day or two. I can do a 5 minute walk, not a one hour walk. I tried helping with a leaf raking fund raiser for the school last fall. I worked for about 1 1/2 hours and honestly, the fallout was awful. I was in pain and in bed for several days afterwards. I think I even had a very low grade fever.
Like you, I also frequently get ill with mild / moderate illness: sinus infection, flu, bronchitis, ear infection, etc. I say mild because so far I've not had to be hospitalized.
There is nothing in my lab work up that can clearly explain this. I do have a slightly decreased IgM.
I wish there were a way to ameliorate these symptoms. I have no clear disease, but I am frequently disabled from even basic activities.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Does anyone else suffer from "post exertional malaise"?
Toni,
Your symptoms sound just like mine! Thank you so much for your response. I wish you the best of luck with your BMB results.
Also, worth mentioning, I had low / normal IgM throughout my 8 years of having MGUS and, in 2012, both IgM and IgA were low normal. This year, they are both in the red. I digress, I'm telling you this because with MGUS, I was still sick often but I wasn't officially immunodeficient.
Which always brings me back to ..."asymptomatic disease" ... Really?
Best
J
Your symptoms sound just like mine! Thank you so much for your response. I wish you the best of luck with your BMB results.
Also, worth mentioning, I had low / normal IgM throughout my 8 years of having MGUS and, in 2012, both IgM and IgA were low normal. This year, they are both in the red. I digress, I'm telling you this because with MGUS, I was still sick often but I wasn't officially immunodeficient.
Which always brings me back to ..."asymptomatic disease" ... Really?
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Does anyone else suffer from "post exertional malaise"?
Hey, J
You're not alone. I am just newly diagnosed in June with IgG kappa MGUS. I have everything you have, so it's not in you're head. I live in Sweden where we are a leading country who studies MGUS and, being just barely 40 when diagnosed, the specialists here don't really know how to treat me. Go figure.
I know this is a systematic disease and that the medical profession needs to wake up and take our symptoms seriously. I have chronic pain in my arms and legs since February. I have all the signs of peripheral neuropathy, but my hematologist says no way, since my M protein is too low to even consider it an option, and when asked if she has ever had a patient as young as me, she said no, so how the heck can you be so sure!!
My GP has sent in three requests for me to see neurology, but they keep denying the request because they don't have any literature on nerve issues related to MGUS. I am only 1 of 950,000 people at my age to be diagnosed in Sweden each year. With a population of of only 9 million, it looks like it's going to be a tough and long fight for me.
Hang in there. Perhaps we shall get answers, hopefully soon!
You're not alone. I am just newly diagnosed in June with IgG kappa MGUS. I have everything you have, so it's not in you're head. I live in Sweden where we are a leading country who studies MGUS and, being just barely 40 when diagnosed, the specialists here don't really know how to treat me. Go figure.
I know this is a systematic disease and that the medical profession needs to wake up and take our symptoms seriously. I have chronic pain in my arms and legs since February. I have all the signs of peripheral neuropathy, but my hematologist says no way, since my M protein is too low to even consider it an option, and when asked if she has ever had a patient as young as me, she said no, so how the heck can you be so sure!!
My GP has sent in three requests for me to see neurology, but they keep denying the request because they don't have any literature on nerve issues related to MGUS. I am only 1 of 950,000 people at my age to be diagnosed in Sweden each year. With a population of of only 9 million, it looks like it's going to be a tough and long fight for me.
Hang in there. Perhaps we shall get answers, hopefully soon!
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volvo0721
Re: Does anyone else suffer from "post exertional malaise"?
Hi friends,
I just received my BMB results and they are unremarkable
The pathologist did state that the sample indicated only 2% plasma cells, but there were "groupings" of cells that put the total in the 5-10% category. I have no idea what that means, but I'm happy we confirmed MGUS.
That said, they want me to follow up in 3 months again because of my frequent illnesses. (I had intestinal illness for a week then later I had fever and chills for 3-4 days just in the past month).
Interestingly, they found I have low iron reserves in the bone, although my labs do not indicate anemia.
So this is what I plan on doing: I'm going to increase my vitamin D supplementation from 1,000 to 2,000 since it is still low, and; I am going to start taking iron supplements.
I truly hope that these two additions help get a spring back in my step.
Wishing both of you well and perhaps we can all find something we can address so as to be rid of this horrid post exertional malaise.
I just received my BMB results and they are unremarkable
The pathologist did state that the sample indicated only 2% plasma cells, but there were "groupings" of cells that put the total in the 5-10% category. I have no idea what that means, but I'm happy we confirmed MGUS.
That said, they want me to follow up in 3 months again because of my frequent illnesses. (I had intestinal illness for a week then later I had fever and chills for 3-4 days just in the past month).
Interestingly, they found I have low iron reserves in the bone, although my labs do not indicate anemia.
So this is what I plan on doing: I'm going to increase my vitamin D supplementation from 1,000 to 2,000 since it is still low, and; I am going to start taking iron supplements.
I truly hope that these two additions help get a spring back in my step.
Wishing both of you well and perhaps we can all find something we can address so as to be rid of this horrid post exertional malaise.
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
5 posts
• Page 1 of 1