Hi there,
I went to the doctor because I had an overall feeling of being unwell. My body aches, in the bones. I was told I was anemic, I said no way, they sent me to a hematologist who found I have smoldering multiple myeloma.
I'm between 20 and 25% saturation (I think that's how you say it). So I was told I really shouldn't have any symptoms yet. I have had all the xrays and mri's with no bone impact shown.
My body hurts from my head to my feet, when it rains and there is a change in the barometric pressure it's worse than on sunny days. Am I crazy? Does anyone else with smoldering multiple myeloma feel like this? What do you do?
I'm active, work a lot, wear a pedometer and walk at least three miles a day. Any input you may have would be greatly appreciated. Thank you!
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10 posts
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Long4Tahoe - Name: PennyP
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2013
- Age at diagnosis: 51
Re: Smoldering myeloma - do you feel as bad as I do?
I have a 60% involvement now. I am considered high risk smoldering. Going into an NK clinical trial in Jan. at UAMS. I have little to complain about really. RBC count low so is my energy level. Sometimes I have bone pain that will move somewhere else about the time I have had enough. Then it will continue until I'm over it and the pain packs up and moves elsewhere. Hope this helps.
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tinaoooo
Re: Smoldering myeloma - do you feel as bad as I do?
I have a lot of pain, I am sick a lot, chronic low grade fevers. I have been to they mayo clinic, seen rheumatoid Dr., Neurologist. I do have neuropathy which is more than likely from the protein but I really have nothing going on except the smoldering myeloma.
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: Smoldering myeloma - do you feel as bad as I do?
Hello Dishevelled,
Just now reading your post and I have to say that I feel a lot like you do. So much so that I can't exercise if it involves any high impact. I used to bike, run, rebound and now my routine is limited to light stretching (some yoga poses that really help my back) and walking about 2 miles. If I go any further, the pain and overall feeling of illness returns.
Sometimes, I feel as though I'm allergic to exercise because it is a definite trigger to the pain, swollen glands, and headaches that I get too often.
I do have immunoparesis, which is low immunoglobulins in unaffected myeloma globulin. I am IgG myeloma and my IgA and IgM are both low - in the red, so it is likely that I pick up viral infections or have a chronic bacterial infection that festers when I exercise or overexert myself. I can only speculate, but I do know that I have had many tests and the only thing found wrong is smoldering myeloma, so I assume feeling sick and having bone and joint pain is related.
Amyloid presents this way, but my fat pad aspirate was negative. You have to have a single origin of pain to biopsy other locations, and my pain is random.
Good luck ... I hope you feel better
jbh
Just now reading your post and I have to say that I feel a lot like you do. So much so that I can't exercise if it involves any high impact. I used to bike, run, rebound and now my routine is limited to light stretching (some yoga poses that really help my back) and walking about 2 miles. If I go any further, the pain and overall feeling of illness returns.
Sometimes, I feel as though I'm allergic to exercise because it is a definite trigger to the pain, swollen glands, and headaches that I get too often.
I do have immunoparesis, which is low immunoglobulins in unaffected myeloma globulin. I am IgG myeloma and my IgA and IgM are both low - in the red, so it is likely that I pick up viral infections or have a chronic bacterial infection that festers when I exercise or overexert myself. I can only speculate, but I do know that I have had many tests and the only thing found wrong is smoldering myeloma, so I assume feeling sick and having bone and joint pain is related.
Amyloid presents this way, but my fat pad aspirate was negative. You have to have a single origin of pain to biopsy other locations, and my pain is random.
Good luck ... I hope you feel better
jbh
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jbh
Re: Smoldering myeloma - do you feel as bad as I do?
Hello there!
I'm very sorry to hear of your pain. I can certainly commiserate, as we share the same symptoms.
I was diagnosed in February 2014 when I complained of pain and numbness in my hands, wrists and arms. Have been through the battery of tests, and have been told to be grateful that I am just smoldering with no bone or protein involvement. T
he pain that started this ball rolling is getting worse, and I can't get any answers. I am visiting a naturopath and a rheumatologist this month. I will let you know if they come up with anything.
If you get any leads on what could be causing this chronic pain, please share them. I wake up at 3 a.m. almost every night with severe pain in my feet, ankles, knees, hips, hands, arms and elbows. If it is not myeloma, what the heck is it, and why are we all getting it?
Keep up the walking and the yoga. If it doesn't heal your body, it will surely comfort your mind.
I'm very sorry to hear of your pain. I can certainly commiserate, as we share the same symptoms.
I was diagnosed in February 2014 when I complained of pain and numbness in my hands, wrists and arms. Have been through the battery of tests, and have been told to be grateful that I am just smoldering with no bone or protein involvement. T
he pain that started this ball rolling is getting worse, and I can't get any answers. I am visiting a naturopath and a rheumatologist this month. I will let you know if they come up with anything.
If you get any leads on what could be causing this chronic pain, please share them. I wake up at 3 a.m. almost every night with severe pain in my feet, ankles, knees, hips, hands, arms and elbows. If it is not myeloma, what the heck is it, and why are we all getting it?
Keep up the walking and the yoga. If it doesn't heal your body, it will surely comfort your mind.
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Smoldering myeloma - do you feel as bad as I do?
My journey also started with numbness in my hands while I sleep. I use wrist guards every night, which really helps. The specialists have all shrugged their shoulders and think it could possibly be from the circulating immunoglobins. I developed shoulder pain, too, but none of the doctors I have seen think it's myeloma related (hmm ...) I have also noticed more aches and pains, less stamina to do my gardening, and so on, but when I talk to my peers and hear them gripe, I really think a lot of it is normal aging and we are just super-sensitive -- always afraid it's related to the disease. I find the best relief is NOT thinking about it. 
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Smoldering myeloma - do you feel as bad as I do?
Hi Garden Girl! Sorry to hear of your pain (great tip on the wrist guards ... they work wonders). No consolation knowing someone else hurts too. Here is a new one for you ... interstitial cystitis. Ever have this? Trying to determine if it is related to SMM. Never knew a bladder could feel this crappy. Stay in touch, and keep your chin up. Ldahle
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Smoldering myeloma - do you feel as bad as I do?
I am coming out of a remission again, but it is coming out very slowly so my doctor says if we hadn't already had the full-blown disease to prove it, I would be called smoldering. The fact the doctors were ignoring my back pain for so long gave me compressions fractures in my back so that caused a lot of pain. If your bones are not keeping up with the demand for new bone cells, your bones may be considerably weaker.
I also feel rotten at this point in my life. My blood tests may show it isn't hurting anything, but either the disease or the meds I am taking makes me feel just as you described. I went to several doctors, both great oncologists and holistic docs and this is what I would try if I were you.
I also feel rotten at this point in my life. My blood tests may show it isn't hurting anything, but either the disease or the meds I am taking makes me feel just as you described. I went to several doctors, both great oncologists and holistic docs and this is what I would try if I were you.
- Ask your doctor about giving you some IV bone building treatments. There are now studies that indicate that a small percentage of people respond by trouble with their jawbones, but that group is very small. To keep the pain at bay, it would be worth it to try it. A little goes a long way.
- Have your vitamin D level checked. Take more of it if you can. It worked wonderfully on my bone pain.
- I was given a low dose aspirin and I kept taking it. Good for your heart anyway.
- You might need to consider pain medication and realize, if none of this helps all that much, that you might have chronic pain and need it. I didn't want to have pain medication. I was always healthy and figured you ought to fix the problem and then you didn't need the medication. A doctor finally got through to me that exercising and movement was needed to make myself better and I couldn't do any of that when I had so much pain. The statement the doctors gave me when dealing with these meds is: If you take enough to take away all pain, you are taking too much. If you take so little you still have trouble functioning, you are not taking enough. I ended up using a patch, which was lovely because I didn't have to remember to take it and put it in my mouth. Your oncologist will know a lot of this, but go to a pain doctor that knows even more since he deals with it everyday. The combination of the two doctors has helped me tremendously.
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ripper69
Re: Smoldering myeloma - do you feel as bad as I do?
I have no pain or discomfort due to my smoldering diagnosis. Maybe your myeloma was picked up by accident (as mine was)? The body pain could be caused by something completely unrelated to the myeloma.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Smoldering myeloma - do you feel as bad as I do?
Hi Penny,
I've been reading this forum long enough to know that both MGUS and SMM patients sometimes experience pain in spite of these being "asymptomatic" stages.
However, if you are feeling bone pain "all over", I agree that it may be worth your while to get evaluated by a doc such as rheumatologist to rule out any autoimmune diseases or other conditions that may cause whole-body pain.
I also agree with JBH, that it may be worthwhile making sure that you don't have amyloidosis. Amyloidosis can can share many of the same markers for multiple myeloma (serum M-spike, monoclonal protein in the bone marrow, etc). However, it can easily be missed by a doctor unless he/she is a multiple myeloma specialist and knows to look for it and orders the correct tests to rule it out.
I've been reading this forum long enough to know that both MGUS and SMM patients sometimes experience pain in spite of these being "asymptomatic" stages.
However, if you are feeling bone pain "all over", I agree that it may be worth your while to get evaluated by a doc such as rheumatologist to rule out any autoimmune diseases or other conditions that may cause whole-body pain.
I also agree with JBH, that it may be worthwhile making sure that you don't have amyloidosis. Amyloidosis can can share many of the same markers for multiple myeloma (serum M-spike, monoclonal protein in the bone marrow, etc). However, it can easily be missed by a doctor unless he/she is a multiple myeloma specialist and knows to look for it and orders the correct tests to rule it out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
10 posts
• Page 1 of 1