I'm in the same boat. Severe osteoarthritis, 15 percent myeloma in bone marrow. I have extensive pain in joints and hips. Doctors say your arthritis is severe. They say there is no link to myeloma and arthritis. I don't buy it for a second. If you read all the symptoms that we are all sharing, it seems like the disease is the culprit.
I don't understand why doctors ignore this common symptom we all share. I have oncologist that refuse to treat me with pain meds while I have excruciating pain. They tell me the only way they would manage my pain is if I had full bone lesions. It's insane.
Your diet plays a big role in your pain levels. And drink a lot of water.
Forums
Re: Have MGUS, but experiencing lots of pain
Hi All! Patricia writing, from Oklahoma- 
I've been reading voraciously here on the Beacon for six weeks now, that would be since the first day that I heard "myeloma."
I was in for a kidney evaluation (I had some roller coaster numbers on bloodwork with the GP's office) and in subsequent blood work the nephrologist told me that my tests were positive for myeloma. So here I was reading up, trying to figure out what that was!
I had my appointment with the hematologist/oncologist one week ago today and the bone marrow biopsy (BMB) on Thursday of last week. My oncologist swooped in at that appointment and told us that I could also have leukemia!!!
Needless to say, one week ago today, I think my head exploded a little. So right now I'm just waiting on results of the BMB. What we do know is that I have the monoclonal gammopathy. The M-spike was small though, so I'm still hopeful.
Pain. Oh my Lord, I've been living with pain for two years now. Started off with colds and flus that I just couldn't seem to quit getting! Then a positive ANA but a borderline 1:80 pattern, so they were hesitant to give the name tag of lupus to it. They can, but it's all resting on the outward symptoms since the ratio didn't go above the 1:80. So, lupus/fibro, diabetes, peripheral neuropathy and now MGUS and maybe it's gone to myeloma or... or... or... leukemia??
And yet now I am beginning to see (through this wonderful site!!!) that some of these pain symptoms may actually have been related to the MGUS all along. And I'm wondering why isn't it being treated as something to be treated? Rather than something that is flicked off the shoulder? I don't get it.
Likewise, I am wondering about the M-spike level not being treated either. The whole "watch and wait" thing.
I've noticed that for people in treatment for active myeloma treatment continues on ideally until that M-protein reaches 0.0. So why in heavens name don't they treat anyone with an M-spike that isn't 0.0? Shouldn't that be the goal for everyone?
It seems to me that waiting until someone actually has active cancer when you know that it is beginning is kind of ludicrous and cruel really. That is like watching someone who has the beginnings of the plague and telling them you're not going to give them the medicine til they are definitely dying. It's preposterous to be holding the cure in your hand and refusing to give it, don't you think? I don't know. I guess its just another thing I don't understand.
Personally, I would rather take the chemo now with my little M-spike of 0.2 and try to get it to 0.0 if it meant that I might have a longer time here to watch my granddaughters grow up, rather than sitting here and hoping that it doesn't spike higher later. Thoughts??
Doesn't it seem that if we have MGUS and pain that something could and should be done?
I've been reading voraciously here on the Beacon for six weeks now, that would be since the first day that I heard "myeloma."
I was in for a kidney evaluation (I had some roller coaster numbers on bloodwork with the GP's office) and in subsequent blood work the nephrologist told me that my tests were positive for myeloma. So here I was reading up, trying to figure out what that was!
I had my appointment with the hematologist/oncologist one week ago today and the bone marrow biopsy (BMB) on Thursday of last week. My oncologist swooped in at that appointment and told us that I could also have leukemia!!!
Needless to say, one week ago today, I think my head exploded a little. So right now I'm just waiting on results of the BMB. What we do know is that I have the monoclonal gammopathy. The M-spike was small though, so I'm still hopeful. Pain. Oh my Lord, I've been living with pain for two years now. Started off with colds and flus that I just couldn't seem to quit getting! Then a positive ANA but a borderline 1:80 pattern, so they were hesitant to give the name tag of lupus to it. They can, but it's all resting on the outward symptoms since the ratio didn't go above the 1:80. So, lupus/fibro, diabetes, peripheral neuropathy and now MGUS and maybe it's gone to myeloma or... or... or... leukemia??
And yet now I am beginning to see (through this wonderful site!!!
) that some of these pain symptoms may actually have been related to the MGUS all along. And I'm wondering why isn't it being treated as something to be treated? Rather than something that is flicked off the shoulder? I don't get it.Likewise, I am wondering about the M-spike level not being treated either. The whole "watch and wait" thing.
I've noticed that for people in treatment for active myeloma treatment continues on ideally until that M-protein reaches 0.0. So why in heavens name don't they treat anyone with an M-spike that isn't 0.0? Shouldn't that be the goal for everyone?
It seems to me that waiting until someone actually has active cancer when you know that it is beginning is kind of ludicrous and cruel really. That is like watching someone who has the beginnings of the plague and telling them you're not going to give them the medicine til they are definitely dying. It's preposterous to be holding the cure in your hand and refusing to give it, don't you think? I don't know. I guess its just another thing I don't understand.
Personally, I would rather take the chemo now with my little M-spike of 0.2 and try to get it to 0.0 if it meant that I might have a longer time here to watch my granddaughters grow up, rather than sitting here and hoping that it doesn't spike higher later. Thoughts??
Doesn't it seem that if we have MGUS and pain that something could and should be done?
Re: Have MGUS, but experiencing lots of pain
It seems very apparent by the comments on here that MGUS hurts, has symptoms, and is real!
Why are we all going round in circles. This kind of stress can't help.
I get cold urticaria (I come up in a nasty rash in the cold) so they tested my blood and found paraproteins. My free light chains have gone up from 2-3 g/l in a couple of months. The haematologist won't see me again till its over 10 g/l. I have severe pain in my legs and they give way a lot, kidney pain (kidney specialist says there is nothing wrong), positive ANA, low bicarbonate, folic deficient. And a few other things.
The leg pain is the worst of it., I am on morphine patches, but it still hurts. I have had an MRI on my back, nothing wrong. Seen a rheumatologist, again nothing wrong! I would pay to see someone privately, but now my doctor doesn't know who to refer me to. I get an appointment to see someone, wait 3 months to see them, they say there is nothing wrong (after another month of waiting for the verdict), I go back to my doctor and she sends me to the next specialist and the story goes on and on and I get no where, just like all of you
They are now going to do an MRI on my head (she thinks MS, I don't). But she won't do an MRI on my legs or any other tests.
I have read all your comments saying the same things I feel, telling my husband who is also fed up with it all. Obviously they are missing something.
I really don't know what to do or who to turn to.
But I wish you all good luck.
Why are we all going round in circles. This kind of stress can't help.
I get cold urticaria (I come up in a nasty rash in the cold) so they tested my blood and found paraproteins. My free light chains have gone up from 2-3 g/l in a couple of months. The haematologist won't see me again till its over 10 g/l. I have severe pain in my legs and they give way a lot, kidney pain (kidney specialist says there is nothing wrong), positive ANA, low bicarbonate, folic deficient. And a few other things.
The leg pain is the worst of it., I am on morphine patches, but it still hurts. I have had an MRI on my back, nothing wrong. Seen a rheumatologist, again nothing wrong! I would pay to see someone privately, but now my doctor doesn't know who to refer me to. I get an appointment to see someone, wait 3 months to see them, they say there is nothing wrong (after another month of waiting for the verdict), I go back to my doctor and she sends me to the next specialist and the story goes on and on and I get no where, just like all of you
They are now going to do an MRI on my head (she thinks MS, I don't). But she won't do an MRI on my legs or any other tests. I have read all your comments saying the same things I feel, telling my husband who is also fed up with it all. Obviously they are missing something.
I really don't know what to do or who to turn to.But I wish you all good luck.
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vix66 - Name: Vicki
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 48
Re: Have MGUS, but experiencing lots of pain
Hi!
My name is Catharina, I live in the UK but am Dutch.
Very pleased I found this forum.
I was diagnosed with MGUS and peripheral neuropathy last year, spent 10 days in hospital last June in London, lots of tests and scans later, I am none the wiser!
I was also diagnosed with Behcets syndrome many years ago, but the medics think this is unrelated to my other diagnosis.
I have also been troubled with bad pains in legs, arms, sometimes body too. Reminds me of the growing pains I still remember when I was a child.
I'm seeing haematologist every 6 months at the moment.
I will see neurologist next month for check in London, but they don't know why I have got the peripheral neuropathy, so no treatment as the drug, pregabalin (Lyrica), did not suit me.
My name is Catharina, I live in the UK but am Dutch.
Very pleased I found this forum.
I was diagnosed with MGUS and peripheral neuropathy last year, spent 10 days in hospital last June in London, lots of tests and scans later, I am none the wiser!
I was also diagnosed with Behcets syndrome many years ago, but the medics think this is unrelated to my other diagnosis.
I have also been troubled with bad pains in legs, arms, sometimes body too. Reminds me of the growing pains I still remember when I was a child.
I'm seeing haematologist every 6 months at the moment.
I will see neurologist next month for check in London, but they don't know why I have got the peripheral neuropathy, so no treatment as the drug, pregabalin (Lyrica), did not suit me.
Re: Have MGUS, but experiencing lots of pain
In response to Ash and all of the responders to this chain...
I am in the same boat as many of you ... lots of pain, lots of theories, no real reason for any of it.
I have had 1 wrist and 4 foot surgeries for undiagnosed joint destruction that looks like rheumatoid arthritis, yet my blood tests come back negative. I have had severe and often disabling lower back pain near the lumbar / sacral region with no real cause seen on plain film x-ray. There was some stenosis at the L5 / S1 section, but nothing that has been flagged for treatment or concern, even with some sciatic nerve involvement. All I hear is that there are no lesions, so all is good.
I've seen 3 different rheumatologists over the past decade and have had three different theories, from RA to degenerative arthritis to fibromyalgia. My foot surgeon just continues to fix me as my metatarsal joints fall apart and my toes continue to "hammer."
I can see a correlation between my progression of the MGUS and the progression of my other symptoms. Could it be coincidental or related? Not sure. All I know is that I can feel quite "sassy" at times because it is hard to sit still and hurt when there isn't anyone out there that seems to have a name for it. And this is coming from someone with a super high pain tolerance who rarely admits to hurting or ask for pain help. When I tell my husband I am in pain, he knows it is well beyond a 10 on the pain scale!
Susie
I am in the same boat as many of you ... lots of pain, lots of theories, no real reason for any of it.
I have had 1 wrist and 4 foot surgeries for undiagnosed joint destruction that looks like rheumatoid arthritis, yet my blood tests come back negative. I have had severe and often disabling lower back pain near the lumbar / sacral region with no real cause seen on plain film x-ray. There was some stenosis at the L5 / S1 section, but nothing that has been flagged for treatment or concern, even with some sciatic nerve involvement. All I hear is that there are no lesions, so all is good.
I've seen 3 different rheumatologists over the past decade and have had three different theories, from RA to degenerative arthritis to fibromyalgia. My foot surgeon just continues to fix me as my metatarsal joints fall apart and my toes continue to "hammer."
I can see a correlation between my progression of the MGUS and the progression of my other symptoms. Could it be coincidental or related? Not sure. All I know is that I can feel quite "sassy" at times because it is hard to sit still and hurt when there isn't anyone out there that seems to have a name for it. And this is coming from someone with a super high pain tolerance who rarely admits to hurting or ask for pain help. When I tell my husband I am in pain, he knows it is well beyond a 10 on the pain scale!
Susie
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
15 posts
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