Colleen Young, Connect Director | @colleenyoung | Mar 21, 2023
@cass52, I moved your question related to MGUS and joint pain to the Blood Cancers & Disorders group so that you can easily connect with other members with monoclonal gammopathy of undetermined significance (MGUS), like @gingerw@mommatracy5@pmm@raye@omemee@gina5009@mnmom1 and many others.
Thank you, Colleen. I’ve been busily involved in projects so have not been checking in to our wonderful online support groups lately.
Regarding joint pain, mine is not related to IgM Kappa MGUS, but to wear and tear.
I find my 82 year old knees keep me honest with myself. Both are bone-on-bone and by being careful with diet I mostly keep them from hurting. Oh, if I walk two miles they may complain a little, but they are usually better the following day.
Here’s what I do: eat no sugar and also eat no artificial chemical sweeteners. Subscribe to ConsumerLab.com to find a compendium of research revealing how dangerous these are. Some are known to destroy knee cartilage. If it doesn’t grow in or on the land, then do not eat it!
Also, I’m selective about which natural foods to eat. No nightshades: avoid tomatoes, potatoes, eggplant, or peppers.
DO eat foods high in Anthocyanin: purple and blue foods. In summer I like frozen cherries for desert, year round include 2 cups of blueberries with breakfast. Five years ago when I treated myself to a “healing vacation” at Rochester Mayo Clinic, Osteo Dr. Holly Duck was surprised my knees did not hurt. Instinctively I had selected the right foods. She introduced me to the word Anthocyanin. Today I’m making a soup high in anthocyanins: two kinds of black beans, red onions and red cabbage. Hope these ideas help you!
Wishing you well!
Now an update regarding my declining ferritin. Apparently I’m low in iron, though not anemic. Back to my wonderful hematologist next week. Cheers!
I have found that cortisone injections every three months take care of my bone on bone knee pain. I have been receiving the injections for many years and can not imagine life without them!
Yep. I have MGUS too and I have joint pain in my right knee, elbows and hips. The pain doesn't stay. For now, it's sporadic. I have not gotten any injections for joint pain in those places, but I have had steroid injections in my fingers because of trigger finger. It's so weird, I've had the steroid injections and then surgery in my left thumb, right thumb, left wrist, left index finger and left middle finger. As a matter of fact, in 2 weeks, I'm scheduled for surgery in my right middle finger and my right ring finger. Basically, the joints swell and stiffen up with fluid. Occasionally, I get lower back pain but it goes away within an hour or two. If you ask me, I think the MGUS causes joint and bone pain so you're not alone. Hope your knee gets better and you can stave off knee surgery.
So one of the questions for me is, how much of my aches and pains are simply the result of aging? Neuropathy…well, I do have type 2 Diabetes, well-controlled by medication. Have had one hip replaced and am arthritic. I’m 71 in May. Hard to sort it all out. What dots connect MGUS to symptoms?
So one of the questions for me is, how much of my aches and pains are simply the result of aging? Neuropathy…well, I do have type 2 Diabetes, well-controlled by medication. Have had one hip replaced and am arthritic. I’m 71 in May. Hard to sort it all out. What dots connect MGUS to symptoms?
I am 92 and have both hips and knees replaced, and a shoulder replacement due to a fall. I have Trigeminal Neurologia which apparently is associated with Old Age. They tell me our nerves have a coating and as we age this coating wears off and if the nerve is near a blood vessel it rubs against the blood vessel and thus the pain. All of my other joints seem to be in good shape (no pain). I was not aware of the MGUS diagnosis until I had Lab Tests for the Trigeminal Neuralgia. I probably have had it for some time and just did not know it and probably would be better off if I did not know about it now. It is just one more thing to worry about. I am not diabetic, but weight is a problem for me. I had an Aortic Valve replacement in 2021 and how much that may contribute to all of this I cannot tell you. Each of us are so different. I wish the very best for you and a very long life.
Gina5009
I started with joint pain back in 2019. I would come home from work and once I sat down, I didn't want to get up again. It was like my whole body (especially my ankles) just froze up. They would be fine again after I got moving a bit, but froze again every time I stopped or sat down. My GP doctor diagnosed it as PMR, even though the symptoms didn't match and put me on steroids. I felt great and could move again, but I gained a lot of weight. After being on them for about a year and a half, I wanted to get off of them. The GP sent me to a rheumatologist who put me on hydroxychloroquine to help me off the steroids. Unfortunately, the hydroxychloroquine was messing with my breathing to the point that I had to see the pulmonologist at a major medical center. (My breathing is fine now.) At least the rheumatologist did the blood work which diagnosed my MGUS. But after my experience with the hydroxychloroquine, I went off of the meds and quit that rheumatologist. My pain is now returned, but a bit different. It is mostly knees, shoulders, elbows, hands, and wrists, sometimes the top of my forearm, but it is intermittent and of varying degrees. Some days I want to cry and others I barely notice it. At my last check-up, I asked my hematologist if the MGUS could be part of what is causing the pain. His reply was that he did not think the MGUS was at a stage where it would cause the pain. Recently, I was told by an Osteo-PA and a physical therapist that I have a lot of "knots" in my ligaments in my forearms. I can feel them under my skin and they do hurt. I have two upcoming appointments regarding trying to get rid of the pain. One is with a weight-loss physician to help get off the weight from the steroids and move to a more natural diet. The other is a new rheumatologist who is supposed to be more "investigative" than my original to find the true cause of the pain. Btw - I have always been slightly anemic. It seems to be my norm, but I do require iron infusions from time to time. So to answer your original question - yes, there are others of us out here. We just try to keep going and do the best we can from day to day.
I started with joint pain back in 2019. I would come home from work and once I sat down, I didn't want to get up again. It was like my whole body (especially my ankles) just froze up. They would be fine again after I got moving a bit, but froze again every time I stopped or sat down. My GP doctor diagnosed it as PMR, even though the symptoms didn't match and put me on steroids. I felt great and could move again, but I gained a lot of weight. After being on them for about a year and a half, I wanted to get off of them. The GP sent me to a rheumatologist who put me on hydroxychloroquine to help me off the steroids. Unfortunately, the hydroxychloroquine was messing with my breathing to the point that I had to see the pulmonologist at a major medical center. (My breathing is fine now.) At least the rheumatologist did the blood work which diagnosed my MGUS. But after my experience with the hydroxychloroquine, I went off of the meds and quit that rheumatologist. My pain is now returned, but a bit different. It is mostly knees, shoulders, elbows, hands, and wrists, sometimes the top of my forearm, but it is intermittent and of varying degrees. Some days I want to cry and others I barely notice it. At my last check-up, I asked my hematologist if the MGUS could be part of what is causing the pain. His reply was that he did not think the MGUS was at a stage where it would cause the pain. Recently, I was told by an Osteo-PA and a physical therapist that I have a lot of "knots" in my ligaments in my forearms. I can feel them under my skin and they do hurt. I have two upcoming appointments regarding trying to get rid of the pain. One is with a weight-loss physician to help get off the weight from the steroids and move to a more natural diet. The other is a new rheumatologist who is supposed to be more "investigative" than my original to find the true cause of the pain. Btw - I have always been slightly anemic. It seems to be my norm, but I do require iron infusions from time to time. So to answer your original question - yes, there are others of us out here. We just try to keep going and do the best we can from day to day.
Have you had eny luck gettng the weight off? I gained 10 lbs the first month I was on Pregabolin, and have not been able to get it off. They reduced my dosage, but that did not happen. I think I am just not active enoujg. If you have found any secrets I would love to hear.
Gina5009
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Are you taking a statin? Statins cause joint and muscle pain. You can take COQ10 which works wonders to relieve the pain - at least for me it does.
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1 Reaction@cass52, I moved your question related to MGUS and joint pain to the Blood Cancers & Disorders group so that you can easily connect with other members with monoclonal gammopathy of undetermined significance (MGUS), like @gingerw @mommatracy5 @pmm @raye @omemee @gina5009 @mnmom1 and many others.
While we wait to others to join the discussion, you may be interested in these related discussions:
- I'd like to connect with other MGUS people: https://connect.mayoclinic.org/discussion/mgus-diagnosis-1/
- Anyone have MGUS and being treated for osteoporosis?: https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/
Cass, you mentioned elsewhere that you have autoimmune conditions as well. May they be contributing to the joint pain?
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1 ReactionThank you, Colleen. I’ve been busily involved in projects so have not been checking in to our wonderful online support groups lately.
Regarding joint pain, mine is not related to IgM Kappa MGUS, but to wear and tear.
I find my 82 year old knees keep me honest with myself. Both are bone-on-bone and by being careful with diet I mostly keep them from hurting. Oh, if I walk two miles they may complain a little, but they are usually better the following day.
Here’s what I do: eat no sugar and also eat no artificial chemical sweeteners. Subscribe to ConsumerLab.com to find a compendium of research revealing how dangerous these are. Some are known to destroy knee cartilage. If it doesn’t grow in or on the land, then do not eat it!
Also, I’m selective about which natural foods to eat. No nightshades: avoid tomatoes, potatoes, eggplant, or peppers.
DO eat foods high in Anthocyanin: purple and blue foods. In summer I like frozen cherries for desert, year round include 2 cups of blueberries with breakfast. Five years ago when I treated myself to a “healing vacation” at Rochester Mayo Clinic, Osteo Dr. Holly Duck was surprised my knees did not hurt. Instinctively I had selected the right foods. She introduced me to the word Anthocyanin. Today I’m making a soup high in anthocyanins: two kinds of black beans, red onions and red cabbage. Hope these ideas help you!
Wishing you well!
Now an update regarding my declining ferritin. Apparently I’m low in iron, though not anemic. Back to my wonderful hematologist next week. Cheers!
-
Like -
Helpful -
Hug
5 ReactionsI have found that cortisone injections every three months take care of my bone on bone knee pain. I have been receiving the injections for many years and can not imagine life without them!
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Like -
Helpful -
Hug
2 ReactionsYep. I have MGUS too and I have joint pain in my right knee, elbows and hips. The pain doesn't stay. For now, it's sporadic. I have not gotten any injections for joint pain in those places, but I have had steroid injections in my fingers because of trigger finger. It's so weird, I've had the steroid injections and then surgery in my left thumb, right thumb, left wrist, left index finger and left middle finger. As a matter of fact, in 2 weeks, I'm scheduled for surgery in my right middle finger and my right ring finger. Basically, the joints swell and stiffen up with fluid. Occasionally, I get lower back pain but it goes away within an hour or two. If you ask me, I think the MGUS causes joint and bone pain so you're not alone. Hope your knee gets better and you can stave off knee surgery.
So one of the questions for me is, how much of my aches and pains are simply the result of aging? Neuropathy…well, I do have type 2 Diabetes, well-controlled by medication. Have had one hip replaced and am arthritic. I’m 71 in May. Hard to sort it all out. What dots connect MGUS to symptoms?
I am 92 and have both hips and knees replaced, and a shoulder replacement due to a fall. I have Trigeminal Neurologia which apparently is associated with Old Age. They tell me our nerves have a coating and as we age this coating wears off and if the nerve is near a blood vessel it rubs against the blood vessel and thus the pain. All of my other joints seem to be in good shape (no pain). I was not aware of the MGUS diagnosis until I had Lab Tests for the Trigeminal Neuralgia. I probably have had it for some time and just did not know it and probably would be better off if I did not know about it now. It is just one more thing to worry about. I am not diabetic, but weight is a problem for me. I had an Aortic Valve replacement in 2021 and how much that may contribute to all of this I cannot tell you. Each of us are so different. I wish the very best for you and a very long life.
Gina5009
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4 ReactionsI wish you the same. Sometimes we must make the best of our fragile selves. Or maybe we are tougher than we think.
Thank you, Gina
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1 ReactionI started with joint pain back in 2019. I would come home from work and once I sat down, I didn't want to get up again. It was like my whole body (especially my ankles) just froze up. They would be fine again after I got moving a bit, but froze again every time I stopped or sat down. My GP doctor diagnosed it as PMR, even though the symptoms didn't match and put me on steroids. I felt great and could move again, but I gained a lot of weight. After being on them for about a year and a half, I wanted to get off of them. The GP sent me to a rheumatologist who put me on hydroxychloroquine to help me off the steroids. Unfortunately, the hydroxychloroquine was messing with my breathing to the point that I had to see the pulmonologist at a major medical center. (My breathing is fine now.) At least the rheumatologist did the blood work which diagnosed my MGUS. But after my experience with the hydroxychloroquine, I went off of the meds and quit that rheumatologist. My pain is now returned, but a bit different. It is mostly knees, shoulders, elbows, hands, and wrists, sometimes the top of my forearm, but it is intermittent and of varying degrees. Some days I want to cry and others I barely notice it. At my last check-up, I asked my hematologist if the MGUS could be part of what is causing the pain. His reply was that he did not think the MGUS was at a stage where it would cause the pain. Recently, I was told by an Osteo-PA and a physical therapist that I have a lot of "knots" in my ligaments in my forearms. I can feel them under my skin and they do hurt. I have two upcoming appointments regarding trying to get rid of the pain. One is with a weight-loss physician to help get off the weight from the steroids and move to a more natural diet. The other is a new rheumatologist who is supposed to be more "investigative" than my original to find the true cause of the pain. Btw - I have always been slightly anemic. It seems to be my norm, but I do require iron infusions from time to time. So to answer your original question - yes, there are others of us out here. We just try to keep going and do the best we can from day to day.
Have you had eny luck gettng the weight off? I gained 10 lbs the first month I was on Pregabolin, and have not been able to get it off. They reduced my dosage, but that did not happen. I think I am just not active enoujg. If you have found any secrets I would love to hear.
Gina5009