Guess I am joining this discussion late, but want to share my experience in case it may be helpful to someone.
I was diagnosed in April this year with myeloma. For about a year prior to diagnosis, I began to have severe cramps of the inner thigh of my right leg. Consulted my PCP, but to no avail. These cramps only happened about four times in a year's time.
After diagnosis and then treatment began with Velcade, Revlimid and dex (and Zometa infusions), I began to have occasional hand cramps, once or twice in feet. Today, had more hand cramps, and also in my side at the waist.
I have tried tonic water and do believe it has helped (today being the exception, since beginning the tonic water a couple of months ago). I am on maintenance Revlimid now, no dexamethasone or Velcade. Will still be getting Zometa every month or so.
Hoping the cramps will decrease or go away. Not much fun! I have so few other side effects, however, that I should not complain.
Forums
Re: Muscle cramps
Cramps are no fun! And it's so exhausting being woken regularly during the night and having to run around to ease out the cramped muscles when you'd rather be asleep. Plunging yourself into a warm bath and scoffing bananas in the middle of the night isn't really conductive to a good night's rest either!
I've been on Revlimid / dex for ages now and I've observed that the cramps regularly come back on the 4th day after the dex. Also, occasionally the drugs cause diarrhoea, and a diarrhoea attack during the day can often result in cramps that night.
I thought cramps in the calves were bad, but then they started in the inner thighs and, wow, was that an experience! This experience focused me on nagging my doctor and reading everything I could to find out about the root cause of the cramps and how to it could be most effectively addressed. The most likely cause of the cramps seems to be an electrolyte imbalance. The reason the cramps occur in the middle of the night is complex renal-electrolyte balance process that is triggered by your internal circadium rhythm clock and kicks in while you are sound asleep.
My personal experience is that getting my magnesium levels right has a dramatic effect, virtually eliminating the cramps. As I had it explained to me, a magnesium deficiency doesn't necessarily show up in blood tests because the body channels the required magnesium into the blood first, and into your electrolytes as a lesser priority. So your electrolytes can be really out of kilter and it just doesn't show in your blood tests. My blood tests regularly showed my magnesium was within the normal range, though at the lower end of this range. But you could also get cramps if your potassium or sodium is low.
The combination of magnesium supplements and doing gentle exercise before bedtime has been the most effective thing that I've found so far. Tonic water helped a bit, but developed the commonly associated side effect of Tinnitus (ringing in the ears), and I found it was less effective than the magnesium supplements.
The other thing that I've found helps is taking a short gentle spin on my exercise bike just before going to bed, - some people talk about massages before bed helping and I guess my short exercise break is somewhat similar, but it's something I can do by myself without having to bother someone else to help me with.
If I get cramps in my hands or feet during the day, it's an indicator that I'm likely to get bad night cramps that night. So on these days and also on day 4 & 5 after taking dexamethasone, I increase my magnesium supplements and I spin the peddles for 5-10 minutes and make sure I make the last spins are very gentle - you don't want to exercise violently just before bed - you don't want to wake yourself up or load your muscles with lactic acid which can also cause cramps, so take it GENTLY!
Talk to your doc about getting your electrolytes back into balance if you are experiencing cramps. And, if you try magnesium or other supplements, then talk to your doctor about the right levels of supplements for you. It is possible to have too much of a good thing, so a bit of medical help will ensure you don't overdo it.
Hoping this helps you enjoy some nice restful nights without cramps.
I've been on Revlimid / dex for ages now and I've observed that the cramps regularly come back on the 4th day after the dex. Also, occasionally the drugs cause diarrhoea, and a diarrhoea attack during the day can often result in cramps that night.
I thought cramps in the calves were bad, but then they started in the inner thighs and, wow, was that an experience! This experience focused me on nagging my doctor and reading everything I could to find out about the root cause of the cramps and how to it could be most effectively addressed. The most likely cause of the cramps seems to be an electrolyte imbalance. The reason the cramps occur in the middle of the night is complex renal-electrolyte balance process that is triggered by your internal circadium rhythm clock and kicks in while you are sound asleep.
My personal experience is that getting my magnesium levels right has a dramatic effect, virtually eliminating the cramps. As I had it explained to me, a magnesium deficiency doesn't necessarily show up in blood tests because the body channels the required magnesium into the blood first, and into your electrolytes as a lesser priority. So your electrolytes can be really out of kilter and it just doesn't show in your blood tests. My blood tests regularly showed my magnesium was within the normal range, though at the lower end of this range. But you could also get cramps if your potassium or sodium is low.
The combination of magnesium supplements and doing gentle exercise before bedtime has been the most effective thing that I've found so far. Tonic water helped a bit, but developed the commonly associated side effect of Tinnitus (ringing in the ears), and I found it was less effective than the magnesium supplements.
The other thing that I've found helps is taking a short gentle spin on my exercise bike just before going to bed, - some people talk about massages before bed helping and I guess my short exercise break is somewhat similar, but it's something I can do by myself without having to bother someone else to help me with.
If I get cramps in my hands or feet during the day, it's an indicator that I'm likely to get bad night cramps that night. So on these days and also on day 4 & 5 after taking dexamethasone, I increase my magnesium supplements and I spin the peddles for 5-10 minutes and make sure I make the last spins are very gentle - you don't want to exercise violently just before bed - you don't want to wake yourself up or load your muscles with lactic acid which can also cause cramps, so take it GENTLY!
Talk to your doc about getting your electrolytes back into balance if you are experiencing cramps. And, if you try magnesium or other supplements, then talk to your doctor about the right levels of supplements for you. It is possible to have too much of a good thing, so a bit of medical help will ensure you don't overdo it.
Hoping this helps you enjoy some nice restful nights without cramps.
-
JCS
Re: Muscle cramps
I'm new, but I'll throw this in about muscle cramps since my management has not been mentioned.
I had muscle cramps for a couple decades. When I took cholesterol treatment a few years ago, I got all-over aching as a statin drug side effect. This led to trying Coenzyme Q10 (ubiquinone - a name with hubris, I think), which is a sort of folk remedy for statin muscle aches.
Although this did not make me able to tolerate the cholesterol drug, it stopped my calf and foot cramps completely. Every time I go off it, the cramps come back. I'd rather not pay for it, naturally.
So here's my news: I was hospitalized last week for Cytoxan mobilization to start me on the way to a stem cell transplant on October 7 after 6 months of CyBorD. They did not have CoQ10 available in the hospital, so I was without it for 2 doses. Ouch ouch ouch. It took 3 days of taking the med again before the leg cramps settled down.
I am a retired physician, and I can tell you there is very little positive evidence for use of ubiquinone for anything. It is a substance of interest, but studies have been small. Dietary sources are mostly meats, fish, and soy.
I had muscle cramps for a couple decades. When I took cholesterol treatment a few years ago, I got all-over aching as a statin drug side effect. This led to trying Coenzyme Q10 (ubiquinone - a name with hubris, I think), which is a sort of folk remedy for statin muscle aches.
Although this did not make me able to tolerate the cholesterol drug, it stopped my calf and foot cramps completely. Every time I go off it, the cramps come back. I'd rather not pay for it, naturally.
So here's my news: I was hospitalized last week for Cytoxan mobilization to start me on the way to a stem cell transplant on October 7 after 6 months of CyBorD. They did not have CoQ10 available in the hospital, so I was without it for 2 doses. Ouch ouch ouch. It took 3 days of taking the med again before the leg cramps settled down.
I am a retired physician, and I can tell you there is very little positive evidence for use of ubiquinone for anything. It is a substance of interest, but studies have been small. Dietary sources are mostly meats, fish, and soy.
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Jan in NJ - Name: Jan Gable
- Who do you know with myeloma?: self
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 68
Re: Muscle cramps
Jan,
Thanks for sharing that. Welcome to the forum, and best of luck in your final preparations for the upcoming stem cell transplant.
Thanks for sharing that. Welcome to the forum, and best of luck in your final preparations for the upcoming stem cell transplant.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Muscle cramps
My oncologist told me to try an old time remedy: Eat a dill pickle. Cramps gone almost immediately.
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Richard Beach
Re: Muscle cramps
Thanks Richard.
I sincerely appreciate your sharing this remedy.
I have been suffering from calf cramps to the extent I stopped driving my fun cars with manual transmission in heavy traffic and across the Bay Bridge here in the Bay Area. A couple of times I was planning on pulling off the car lanes at the toll plaza! And this was a few years before the recent discovery and before this 3-week induction therapy.
I did not check if the magnesium was helpful. I am taking it again as of just last night. However, I am going to keep a bottle of dill pickles in the cup holder from now on! I can take an antacid soon after the driving is done. And a little acid reflux is nothing compared to a potential accident.
Thanks again.
K_Shash
I sincerely appreciate your sharing this remedy.
I have been suffering from calf cramps to the extent I stopped driving my fun cars with manual transmission in heavy traffic and across the Bay Bridge here in the Bay Area. A couple of times I was planning on pulling off the car lanes at the toll plaza! And this was a few years before the recent discovery and before this 3-week induction therapy.
I did not check if the magnesium was helpful. I am taking it again as of just last night. However, I am going to keep a bottle of dill pickles in the cup holder from now on! I can take an antacid soon after the driving is done. And a little acid reflux is nothing compared to a potential accident.
Thanks again.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Muscle cramps
Soap works!
I had to work for over an hour on my sprinkler boxes, trying to find the valve that needed to be shut off manually. With my luck, it was just about the last one of the dozen suspects. Some could be shut off with the screw adjustment, and the others with the 'very hard to turn handle'. Even with good tools, I had to be on my hands and knees and bending and twisting the wrenches in a very awkward position.
I started getting pretty severe cramps soon after I got the right valve turned off. Rather than wait for just a soap bar in the vicinity to help me, I rubbed the Ivory soap on my toes, feet, and on the back of my hands. It sure helped me within 10 minutes of that soap film application, and I have been able to even type this post!
K_Shash
I had to work for over an hour on my sprinkler boxes, trying to find the valve that needed to be shut off manually. With my luck, it was just about the last one of the dozen suspects. Some could be shut off with the screw adjustment, and the others with the 'very hard to turn handle'. Even with good tools, I had to be on my hands and knees and bending and twisting the wrenches in a very awkward position.
I started getting pretty severe cramps soon after I got the right valve turned off. Rather than wait for just a soap bar in the vicinity to help me, I rubbed the Ivory soap on my toes, feet, and on the back of my hands. It sure helped me within 10 minutes of that soap film application, and I have been able to even type this post!
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Muscle cramps
So my husband has had multiple myeloma for about 12 years. He is currently taking dex every 2 months. He suffers horribly from cramping. He was always waking up in the middle of the night in agony. What has stopped all of his cramping issues is this:
http://saltstick.com/products/sscaps/cfeatures.htm
He takes 4 pills a day. 2 in the morning and 2 at night. Before this he was drinking tons of Gatorade but he finds these pills work so much better.
http://saltstick.com/products/sscaps/cfeatures.htm
He takes 4 pills a day. 2 in the morning and 2 at night. Before this he was drinking tons of Gatorade but he finds these pills work so much better.
Re: Muscle cramps
It is not just the hand cramps. There's much more to it. With all the other stuff we deal with, I was looking for an uncomplicated fix. This works. I bought two sets of women's white gloves, thin enough to provide some air flow. They cost about two dollars! Applied a pain cream like IcyHot, Deep Heating, or Bengay to the hands, and then put the gloves on. The symptoms quickly feel different. Sometimes it takes an hour or so, but it goes away!
I was in pharma sales and this treatment was for something else. Who cares? As long as it works, and I don't have to do the one more thing in an already wildly complex life.
Best wishes, prayers for all.
I was in pharma sales and this treatment was for something else. Who cares? As long as it works, and I don't have to do the one more thing in an already wildly complex life.
Best wishes, prayers for all.
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Jerry Stang
Re: Muscle cramps
My grandpa has multiple myeloma, and he just recently started cramping up. I heated up water in a water bottle for him to hold and it seems to be working. He says it's relieving his muscles pretty quickly.
Another thing were gonna try are sports drinks like Gatorade or Powerade because they give you the missing electrolytes that might be causing your cramps.
Something else that might help is wearing socks which will get your blood flowing whereas a blood clot might be causing your cramps.
Cider vinegar also has a lot of benefits that would help.
Another thing were gonna try are sports drinks like Gatorade or Powerade because they give you the missing electrolytes that might be causing your cramps.
Something else that might help is wearing socks which will get your blood flowing whereas a blood clot might be causing your cramps.
Cider vinegar also has a lot of benefits that would help.
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Sage
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