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Re: Muscle cramps
Sage. I've found that drinking tonic water does wonders for muscle cramps. It was recommended by my nurse and others and it does work.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Muscle cramps
Thanks for all this info.
I've been on Revlimid since 2014, with a break after my stem cell transplant, and get bad calf cramps at night now and then. I will have them for several days in a row, then none, then they come back. All my levels are normal range.
I tried Gatorade, but it has too much sugar, even in the G2 version (I'm trying to keep sugar intake down as I've gained 50 pounds since diagnosis). Stretching and hard rubbing usually relieves the cramp, but it tends to come back in an hour or so. I am now getting some hand cramps as well, maybe due to Kyprolis (?) (just started third cycle). Have not tried vinegar as it causes GI distress. Will try mustard, soap, tonic water.
I've been on Revlimid since 2014, with a break after my stem cell transplant, and get bad calf cramps at night now and then. I will have them for several days in a row, then none, then they come back. All my levels are normal range.
I tried Gatorade, but it has too much sugar, even in the G2 version (I'm trying to keep sugar intake down as I've gained 50 pounds since diagnosis). Stretching and hard rubbing usually relieves the cramp, but it tends to come back in an hour or so. I am now getting some hand cramps as well, maybe due to Kyprolis (?) (just started third cycle). Have not tried vinegar as it causes GI distress. Will try mustard, soap, tonic water.
Re: Muscle cramps
Random, sorry to hear about your muscle cramps. They can be devastating. I second the advice others offer about tonic water. It worked better for me than anything else I tried. (the vodka and lime I mixed with it weren't bad either)
Charlie (grouchy German)
Charlie (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Muscle cramps
Gary,
Years ago, I found that a terrible headache, cramps, and sleeplessness were caused by a need for potassium, even though blood tests showed normal amounts.
When these symptoms occurred, I would take one potassium gluconate tablet (595 mg) daily for five days, then three a week for several weeks.
If potassium is the problem, you will see results in just a few days.
Worth a try ...
Years ago, I found that a terrible headache, cramps, and sleeplessness were caused by a need for potassium, even though blood tests showed normal amounts.
When these symptoms occurred, I would take one potassium gluconate tablet (595 mg) daily for five days, then three a week for several weeks.
If potassium is the problem, you will see results in just a few days.
Worth a try ...
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Muscle cramps
I found that cramps, restless leg syndrome (RLS), and “muscle weirdness” in general, especially in the legs and feet, can be attributed to dexamethasone withdrawal symptoms when the drug wears off in about 72 hours after taking a dosage. The longer you have been taking dex, it seems the more pronounced the “muscle weirdness” effect when the dex wears off, like tension in the leg calves that won’t go away.
After taking 16-20 mg of dex every week as part of my treatment over the last 3+ years, I find, I occasionally need to take at least one 4 mg dex pill on a morning several days after my normal dex dosage so I can head off muscle pains at night (it takes 5-6 hours for the dex to enter the muscle tissue).
If you have “muscle weirdness” and seem overly tired, weak or fatigued, especially after taking a hot bath, you may be experiencing dexamethasone withdrawal symptoms (a.k.a. dex crash).
BoB_D
After taking 16-20 mg of dex every week as part of my treatment over the last 3+ years, I find, I occasionally need to take at least one 4 mg dex pill on a morning several days after my normal dex dosage so I can head off muscle pains at night (it takes 5-6 hours for the dex to enter the muscle tissue).
If you have “muscle weirdness” and seem overly tired, weak or fatigued, especially after taking a hot bath, you may be experiencing dexamethasone withdrawal symptoms (a.k.a. dex crash).
BoB_D
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Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: Muscle cramps
Cycle 1 of my husband's Revlimid, Velcade, and dexamethasone (RVD) treatment is almost complete. He suffers horribly from cramps in his hands. Nothing seems to help. Also his right arm / hand shakes (tremors) greatly. He's taking 80 mg of dexamethasone per week (20 on Velcade days, 20 the day following, and two times per week). He's taking supplements of magnesium and potassium as well as drinking apple cider vinegar. Intake of fluids is great. Is there anything else we can try?
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: Muscle cramps
Hi Sherbert,
I did this treatment as part of my induction last summer. I had some minor cramping in my hands but rather minimal side effects. That said, the side effects did build towards the end of each treatment cycle, and my doctor modified the dosage of Velcade as needed. We didn't reduce the dosage of the dexamethasone but did reduce the Revlimid from 25 mg to 20 mg. I was on a 14/7 cycle (14 days of RVD, 7 day break).
You might try tonic water as a means to reduce the cramping in addition to the magnesium and other supplements. Make sure to let your doctor know as well in case they can alter the dosage levels to provide some relief.
Good luck, it does get better.
I did this treatment as part of my induction last summer. I had some minor cramping in my hands but rather minimal side effects. That said, the side effects did build towards the end of each treatment cycle, and my doctor modified the dosage of Velcade as needed. We didn't reduce the dosage of the dexamethasone but did reduce the Revlimid from 25 mg to 20 mg. I was on a 14/7 cycle (14 days of RVD, 7 day break).
You might try tonic water as a means to reduce the cramping in addition to the magnesium and other supplements. Make sure to let your doctor know as well in case they can alter the dosage levels to provide some relief.
Good luck, it does get better.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Muscle cramps
Hello Sherbert,
I have had a great relief from my cramps by just rubbing a bar of Ivory soap on my cramped muscles. Just recently I discovered that the liquid hand soap works even better and almost immediately. I am on a Revlimid maintenance (without any dexamethasone or other drugs), but I still get these cramps in my fingers if I am working with any knife or screwdriver or even holding a newspaper for a period of time. My hands cramp if I am holding the steering wheel for a period of time during a long drive, too. Also my legs cramp suddenly after a long drive, sometimes a few hours later; both the calves or the arches of my feet cramp with the slightest twist of my toes. I experience these cramps after a warm shower, in particular.
The application of a thin film of liquid soap has been almost an immediate cure, at least in my case. I don't even try to rub it in or massage the cramping muscles. The instant relief is almost miraculous. I hope this works for your husband, too.
I was prescribed only 20 mg of dex, on the day of the Velcade, during my induction treatment. 80 mg per week seems very high. I am not a doctor or associated with the medical profession. However, I think you may want to research the side effects of dexamethasone, particularly for such a high dose, as it relates to the shaking. I recall another post (4+ years ago) where a myeloma patient had reported that he was passing out or collapsing on the dining table after a meal, and his weekly dex had to be reduced from the 40 mg on the day of the Velcade.
I have had a great relief from my cramps by just rubbing a bar of Ivory soap on my cramped muscles. Just recently I discovered that the liquid hand soap works even better and almost immediately. I am on a Revlimid maintenance (without any dexamethasone or other drugs), but I still get these cramps in my fingers if I am working with any knife or screwdriver or even holding a newspaper for a period of time. My hands cramp if I am holding the steering wheel for a period of time during a long drive, too. Also my legs cramp suddenly after a long drive, sometimes a few hours later; both the calves or the arches of my feet cramp with the slightest twist of my toes. I experience these cramps after a warm shower, in particular.
The application of a thin film of liquid soap has been almost an immediate cure, at least in my case. I don't even try to rub it in or massage the cramping muscles. The instant relief is almost miraculous. I hope this works for your husband, too.
I was prescribed only 20 mg of dex, on the day of the Velcade, during my induction treatment. 80 mg per week seems very high. I am not a doctor or associated with the medical profession. However, I think you may want to research the side effects of dexamethasone, particularly for such a high dose, as it relates to the shaking. I recall another post (4+ years ago) where a myeloma patient had reported that he was passing out or collapsing on the dining table after a meal, and his weekly dex had to be reduced from the 40 mg on the day of the Velcade.
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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
I have had severe muscle cramps in legs, hands, thighs, feet and fingers. In fact my fingers gets so bad they lock up.
I have tried Gatorade and other hydrating drinks and they help, however I am pre-diabetic and need to watch my sugar. Gatorade has over 30 grams of sugar. So I started looking for low sugar alternatives. I found this recipe online by researching various rehydration recipes until I came up with my own.
I now make my own rehydration powder mix and it works better than Gatorade and with almost no sugar. This is my recipe for what I have found that works for me. This might not work for everyone and you can change the recipe to fit your needs. It adds magnesium, sodium, and potassium back into your body, that you lose from sweating.
2 Tbs of sugar or Stevia
3/4 Tsp of salt (sodium chloride)
1/4 Tsp Nu Salt (potassium chloride)
1/4 Tsp of Epsom salt (magnesium sulfate)
Unsweetened Kool-Aid for flavor
Mix all above ingredients together by putting in airtight container and shaking vigorously.
You can substitute Stevia for the sugar. Sugar makes a lot of the bulk of the powder so I still use 1 tablespoon of sugar and 1 tablespoon of Stevia. I didn't want to mix this every time I got dehydrated, so I kept the ratios of the salts and sweeteners the same and increased the ratios by 20. This made me enough powder, about 1.5 cups, to last me a long time. I usually mix one heaping teaspoon of the mix for 12 oz of water. Add the Kool-Aid flavor to suit your tastes. If you don't want all the salt in your diet you can use baking soda in place of the table salt, but I find it tastes better with table salt or even pink salt.
I have never had anymore cramps since I started using this two months ago. I hope this helps.
Randy
I have tried Gatorade and other hydrating drinks and they help, however I am pre-diabetic and need to watch my sugar. Gatorade has over 30 grams of sugar. So I started looking for low sugar alternatives. I found this recipe online by researching various rehydration recipes until I came up with my own.
I now make my own rehydration powder mix and it works better than Gatorade and with almost no sugar. This is my recipe for what I have found that works for me. This might not work for everyone and you can change the recipe to fit your needs. It adds magnesium, sodium, and potassium back into your body, that you lose from sweating.
2 Tbs of sugar or Stevia
3/4 Tsp of salt (sodium chloride)
1/4 Tsp Nu Salt (potassium chloride)
1/4 Tsp of Epsom salt (magnesium sulfate)
Unsweetened Kool-Aid for flavor
Mix all above ingredients together by putting in airtight container and shaking vigorously.
You can substitute Stevia for the sugar. Sugar makes a lot of the bulk of the powder so I still use 1 tablespoon of sugar and 1 tablespoon of Stevia. I didn't want to mix this every time I got dehydrated, so I kept the ratios of the salts and sweeteners the same and increased the ratios by 20. This made me enough powder, about 1.5 cups, to last me a long time. I usually mix one heaping teaspoon of the mix for 12 oz of water. Add the Kool-Aid flavor to suit your tastes. If you don't want all the salt in your diet you can use baking soda in place of the table salt, but I find it tastes better with table salt or even pink salt.
I have never had anymore cramps since I started using this two months ago. I hope this helps.
Randy
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reach449 - Name: Randy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: December 2017
- Age at diagnosis: 57
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