Like many of those who have posted, I find that I feel much better when I exercise.
I had sessions of PT several times, and those were very helpful. When I was just recovering from multiple vertebrae fractures, my exercise was limited to swimming in a therapy pool and, after my SCT, I was able to begin walking, and I still walk about a mile a day.
I would love to return to hiking, because I used to love it. However, even though I have been on Zometa for almost two years, my recent bone scan indicated that I am still at high risk for fracture, especially in my hips (I had seven kyphoplasties, so most of my vulnerable vertebrae are already treated). The "high risk" factor makes me afraid of the uneven terrain in the woods.
Any thoughts?
Forums
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Want to start exercising, but am fearful
My situation sounds quite different than many who have posted. I was age 39 at diagnosis. While I wasn't the poster child for healthy living, I was in decent shape, even riding a 150 mile, 2 day bicycle tour 6 months prior to diagnosis.
A few months prior to my diagnosis, I began breaking ribs on a regular basis. It could happen from coughing, from pulling luggage through an airport, or from reaching across the seat of my car to retrieve an umbrella. I think I broke ribs 5 or 6 times before a blood test finally indicated myeloma. My bone scan at diagnosis showed that nearly every bone from my neck to my elbows and down to my knees showed osteoporosis.
As a result of my condition, I was prohibited from riding my bicycle any longer. Then I fractured several vertebrae and wound up unable to walk for a couple weeks. I lost so much muscle mass that I could do little more than make it from the bed to the bathroom without assistance.
I finally got into a water physical therapy system at a hospital near my house. I regained strength just in time for my stem cell transplant (SCT)! The SCT wasn't too bad on me (but not that successful, either), but I did get more sedentary.
I am finally getting back to exercising. Since I still can't run or ride a bicycle, I made the investment and bought a recumbent tricycle. It was worth it, as I have a blast getting to be outside exercising. I am really starting to feel like my old self again!
If I were to give advice to someone, I would say to do what you can and try to stretch yourself a little at a time. I had to do that to go from my bed to a walker to using a back brace to walking freely, and I am doing it again now with getting back on a cycle - even if it has three wheels!
A few months prior to my diagnosis, I began breaking ribs on a regular basis. It could happen from coughing, from pulling luggage through an airport, or from reaching across the seat of my car to retrieve an umbrella. I think I broke ribs 5 or 6 times before a blood test finally indicated myeloma. My bone scan at diagnosis showed that nearly every bone from my neck to my elbows and down to my knees showed osteoporosis.
As a result of my condition, I was prohibited from riding my bicycle any longer. Then I fractured several vertebrae and wound up unable to walk for a couple weeks. I lost so much muscle mass that I could do little more than make it from the bed to the bathroom without assistance.
I finally got into a water physical therapy system at a hospital near my house. I regained strength just in time for my stem cell transplant (SCT)! The SCT wasn't too bad on me (but not that successful, either), but I did get more sedentary.
I am finally getting back to exercising. Since I still can't run or ride a bicycle, I made the investment and bought a recumbent tricycle. It was worth it, as I have a blast getting to be outside exercising. I am really starting to feel like my old self again!
If I were to give advice to someone, I would say to do what you can and try to stretch yourself a little at a time. I had to do that to go from my bed to a walker to using a back brace to walking freely, and I am doing it again now with getting back on a cycle - even if it has three wheels!
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jglopic - Name: Jay Lopiccolo
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2013
- Age at diagnosis: 38
Re: Want to start exercising, but am fearful
I guess that only you and your physician can find out what to, and what not to, do.
But I had a consultation with my myeloma specialist yesterday, covering the next months of therapy, transplantation etc.
I got the diagnosis in June and was due to start treatment on August 8th. During the approximately 8 weeks prior to the first day of treatment, my m-component dropped without any known reason:
6 June: 22.7 g/L (2.27 g/dL)
10 July: 12.5
6 August: 8.5
(and then after 3 weeks of treatment: 26 August: 3.0).
There is no possible way to conclude anything from one person and one incident and 8 weeks.
But my myeloma specialist knew that I had been reasonably physical active within the 7 weeks before August 6th. He explained that a reasonably active life, and at least 30 minutes of at least fast walking every day, is known to have a real strengthening effect on your own immune system and its ability to fight off myeloma and other types of problems.
He strongly advises against extreme activities and said that marathon and other sports like it take a heavy toll on your body's ability to fight back. No marathon.
From diagnosis to treatment I was in some kind of denial, and I did go on my bicycle a lot, and I even found my windsurf gear for the first time in 7 year. The latter is probably not advisable, but it was fun.
Was it 7 weeks of activity that hit the m-component so hard?
But, I guess that only x-rays and advice from your specialist can really answer the question for the individual person.
Lots of greetings
But I had a consultation with my myeloma specialist yesterday, covering the next months of therapy, transplantation etc.
I got the diagnosis in June and was due to start treatment on August 8th. During the approximately 8 weeks prior to the first day of treatment, my m-component dropped without any known reason:
6 June: 22.7 g/L (2.27 g/dL)
10 July: 12.5
6 August: 8.5
(and then after 3 weeks of treatment: 26 August: 3.0).
There is no possible way to conclude anything from one person and one incident and 8 weeks.
But my myeloma specialist knew that I had been reasonably physical active within the 7 weeks before August 6th. He explained that a reasonably active life, and at least 30 minutes of at least fast walking every day, is known to have a real strengthening effect on your own immune system and its ability to fight off myeloma and other types of problems.
He strongly advises against extreme activities and said that marathon and other sports like it take a heavy toll on your body's ability to fight back. No marathon.
From diagnosis to treatment I was in some kind of denial, and I did go on my bicycle a lot, and I even found my windsurf gear for the first time in 7 year. The latter is probably not advisable, but it was fun.
Was it 7 weeks of activity that hit the m-component so hard?
But, I guess that only x-rays and advice from your specialist can really answer the question for the individual person.
Lots of greetings
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Want to start exercising, but am fearful
Hello Everyone,
Just a little update. As I said, I took my daughter and dogs for a walk. The following day went to the pool for a swim. All good. The following day could hardly walk due to back pain. Not sure if it was the exercise or perhaps I slept weird.
So now it's a few days since making an effort to exercise and my back still hurts. So I am thinking I do indeed need to see a physio, and discuss with my doctor when I see him in two weeks time.
I did have a scan done on my lower back that said I had osteopenia back in mid June. No lesions etc,
So now I sit here wondering if I have damaged my spine from that little exercise I did. Frustrating!
Anyway, thanks to all for your advice and help.
Vicki
Just a little update. As I said, I took my daughter and dogs for a walk. The following day went to the pool for a swim. All good. The following day could hardly walk due to back pain. Not sure if it was the exercise or perhaps I slept weird.
So now it's a few days since making an effort to exercise and my back still hurts. So I am thinking I do indeed need to see a physio, and discuss with my doctor when I see him in two weeks time.
I did have a scan done on my lower back that said I had osteopenia back in mid June. No lesions etc,
So now I sit here wondering if I have damaged my spine from that little exercise I did. Frustrating!
Anyway, thanks to all for your advice and help.
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Want to start exercising, but am fearful
I'm very sorry to hear you are in so much pain and have limited mobility. Have you called your physician? I would think they would need to be notified?
I do not have multiple myeloma, I only have MGUS. But I do have back issues -- degenerative disk and nerve root impingement at various points. Had they noticed any nerve impingement in any of your films? I know multiple myeloma can change quickly in terms of CRAB, especially bones.
I know the feeling of wanting to do more exercise but being limited because of the consequences of "overdoing it". Unfortunately, overdoing it can be very little extra. If they think your body is stable enough for it, perhaps you could get some more physical therapy to do gentle exercises / stretches to keep your body limber.
In the meantime, I would really encourage you to contact your physician about your back. You are very young to have osteopenia, so you obviously have bone involvement.
Wishing you all the best.
I do not have multiple myeloma, I only have MGUS. But I do have back issues -- degenerative disk and nerve root impingement at various points. Had they noticed any nerve impingement in any of your films? I know multiple myeloma can change quickly in terms of CRAB, especially bones.
I know the feeling of wanting to do more exercise but being limited because of the consequences of "overdoing it". Unfortunately, overdoing it can be very little extra. If they think your body is stable enough for it, perhaps you could get some more physical therapy to do gentle exercises / stretches to keep your body limber.
In the meantime, I would really encourage you to contact your physician about your back. You are very young to have osteopenia, so you obviously have bone involvement.
Wishing you all the best.
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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: Want to start exercising, but am fearful
Just wanted to update.
I realize now that, when I thought I was ready to go ahead and exercise, back when I started this thread, that I physically just wasn't. My head wanted to, in the sense of not letting this disease and the subsequent treatments beat me. In reality, though, I was still very much in recovery mode from all that I had been through – emotionally and physically.
I am, however, happy to report that I am now getting back to some sort of "normality" on a physical aspect. I am swimming at least three times a week and feeling so much better for it. I have more energy and it gives me much needed time to myself to reflect and get my head around things (not necessarily to do with this multiple myeloma).
I for the most part feel pretty good, physically and mentally. Long may it last. Fatigue, whilst it still rears it's ugly head, is not a constant companion like it was just a few months ago.
I guess I just wanted to share with those whom may be interested that recovery times are out of our control. However, don't despair. With a little luck, energy and vitality will return. You just have to accept that it takes time to recover, so don't push it and be realistic.
From the most impatient person in the world.
Vic
I realize now that, when I thought I was ready to go ahead and exercise, back when I started this thread, that I physically just wasn't. My head wanted to, in the sense of not letting this disease and the subsequent treatments beat me. In reality, though, I was still very much in recovery mode from all that I had been through – emotionally and physically.
I am, however, happy to report that I am now getting back to some sort of "normality" on a physical aspect. I am swimming at least three times a week and feeling so much better for it. I have more energy and it gives me much needed time to myself to reflect and get my head around things (not necessarily to do with this multiple myeloma).
I for the most part feel pretty good, physically and mentally. Long may it last. Fatigue, whilst it still rears it's ugly head, is not a constant companion like it was just a few months ago.
I guess I just wanted to share with those whom may be interested that recovery times are out of our control. However, don't despair. With a little luck, energy and vitality will return. You just have to accept that it takes time to recover, so don't push it and be realistic.
From the most impatient person in the world.
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Want to start exercising, but am fearful
Vic,
Thank you for the update, and it's great to hear that you're getting regular exercise and it's making a difference, both physically and emotionally.
Swimming is difficult for many people. I know it is for me. But those who manage to do it seem to benefit not only on a physical level. You often hear that it also has a calming effect, emotionally. I've also read that it can give at least temporary relief from peripheral neuropathy.
I think it's brilliant that you've gotten to where you are with your exercise programme, and I really hope that you are able to stick with it.
Thank you for the update, and it's great to hear that you're getting regular exercise and it's making a difference, both physically and emotionally.
Swimming is difficult for many people. I know it is for me. But those who manage to do it seem to benefit not only on a physical level. You often hear that it also has a calming effect, emotionally. I've also read that it can give at least temporary relief from peripheral neuropathy.
I think it's brilliant that you've gotten to where you are with your exercise programme, and I really hope that you are able to stick with it.
Re: Want to start exercising, but am fearful
Vic,
Your head is in the right place. Good to see you are doing well in your recovery. I am a swimmer, too, and second what both you and Ian have said about swimming. It also helped my neuropathy a lot when I was going through induction therapy.
Your head is in the right place. Good to see you are doing well in your recovery. I am a swimmer, too, and second what both you and Ian have said about swimming. It also helped my neuropathy a lot when I was going through induction therapy.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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