Muscle Spasms: Does anyone suffer from muscle... - CLL Support

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Muscle Spasms

Jimargie profile image
24 Replies

Does anyone suffer from muscle spasms? And if so how do you handle them.

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Jimargie profile image
Jimargie
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24 Replies
t2aa profile image
t2aa

I do you get muscle spasms sometimes, however when I do get them it is almost always because of lack of hydration. Drinking more fluids always seems to help. My potassium levels are fine, but sometimes that’s what causes them. Have you had your potassium levels checked?

Jimargie profile image
Jimargie in reply tot2aa

Yes my magnesium and potassium levels are fine. I went off of Ibrutinib for a week and the spasms subsided considerably. Went back on and they are back. So I know that it is a side effect of yhe drug.

JeannineMarie profile image
JeannineMarie

I get muscle spasm's in my legs and feet. What I call Charlie horses. I take magnesium nightly and they have reduced greatly. I tried everything to get them under control increase fluid, stretches, calcium, potassium, pickle juice etc. The magnesium is the only thing that worked for me. Those cramps would go for hours. So glad to be rid of them.

Jimargie profile image
Jimargie in reply toJeannineMarie

How much do you take?

JeannineMarie profile image
JeannineMarie in reply toJimargie

Jimargie I take 250 mg every night about 30 min to an hour before bed. It truly helped me. I would be up 4 to 6 hours a night. Now I get muscle cramps occasionally like once a month.

Fofzero profile image
Fofzero

I get cramps in my calves while sleeping, the pain wakes me up, putting weight on the leg helps, stretches before going to bed helps, but lately they seem to be getting worse. Not sure what solutions there are for this.

Smakwater profile image
Smakwater

Jmargie,

Are you on any medication?

Ever since I started venetoclax, I have been experiencing intense muscle cramps in my calves especially at night. My doctors have not offered any cause, and I have no clinical indications.

From what I can read in credible publications, it is possible to influence depleting magnesium and potassium when using certain drugs especially where hydration increases are necessary. Low levels of magnesium and potassium can stimulate improper nerve response aggravating muscles.

I too am looking for some feedback that shows consistency, as I have found trial and error experiments to be counter productive in most attempts.

JM

Jimargie profile image
Jimargie in reply toSmakwater

I am on Ibrutinib. I went off it for a week and spasms subsided. So I know it is a side effecr of the drug. Magnesium and potassium levels are good.

Smakwater profile image
Smakwater in reply toJimargie

My levels show good as well.

It is interesting though to read that some claim even with basic lab tests being in range, they use a magnesium supplement with some level of relief.

Jimargie profile image
Jimargie in reply toSmakwater

I tried the supplement but it didn't help . Maybe I wasn't taking enough.

Smakwater profile image
Smakwater in reply toJimargie

Don't know,

Supplements are not necessarily going to metabolize in a way that aids ones condition. There are many magnesium choices, or your spasms may be unrelated.

Hope you get it right.

Zach7 profile image
Zach7 in reply toSmakwater

I use magnesium every night which help my cramps a lot. Once in a blue moon I may get cramps. I aalso have IVIG INFUSIONS every 3 weeks at Peter Mac Cancer hospital,Melbourne.Good luck

Smakwater profile image
Smakwater in reply toZach7

I have known several others to have relief from cramps by using magnesium.

I started some yesterday. Trace Mineral drops liquid form. 250mg magnesium, 650mg Chloride, 5mg sodium, 3mg potassium, 40mg sulfate, 1.5mg lithium, 1mg boron per 10 drop serving.

I'll post follow up in a few weeks.

JM

210savannah profile image
210savannah

Yes! I get them in my feet and legs almost every night. I wake up and have to get out of bed to walk them off. I am on Ibrutinib and have noticed that since starting it in February the cramps are almost a nightly ordeal.

Jimargie profile image
Jimargie in reply to210savannah

Same here! It is definitely a side effect of the drug.

studebaker profile image
studebaker

Yes, I did have nightly spasms until I started to take Magnesium in the evening.

They are mostly gone except on rare occasions and they are minimal.

Good luck on Ibrutinib.

Dana

Jimargie profile image
Jimargie in reply tostudebaker

How much do you take and when.

cllady01 profile image
cllady01Former Volunteer in reply toJimargie

Jimargie, try eating (if you are not allergic) a handful or two of mixed nuts as a mid afternoon snack. I have found this to be sufficient to stop my leg/toe spasms. I hope it helps you. (I have not been treated.)

healthline.com/health/food-...

There is also the possibility of blood circulation to your limbs being low

If you are drinking the amount of water as suggested should be sufficient to aleviate any hydration problem

studebaker profile image
studebaker in reply toJimargie

I take 500mg at night time

Trish67 profile image
Trish67

Yes I get them too, in my feet, legal and hands. Quinine sulfate works for me. My consultant prescribes it with all my other meds. I take one 300 mg tablet at night.

Newdawn profile image
NewdawnAdministrator in reply toTrish67

Trish, you obviously need to be guided by your Consultant over the use of quinine sulfate for cramps but be very watchful about side effects and particularly your platelet levels as it can cause thrombocytopenia. Interestingly, the FDA in the States now prohibits the use of quinine for leg cramps and says its use should only be for malaria.

I have horrendous cramp and did before treatment but I’d be very reluctant to take quinine quite apart from the fact that it causes and exacerbates tinnitus.

This is the Govt. guidance on its use here;

gov.uk/drug-safety-update/q...

My GP was actually unaware of it and I know some doctors still prescribe it.

Newdawn

Trish67 profile image
Trish67 in reply toNewdawn

Thanks for that, Newdawn. I've read the link and I shall certainly raise the issue next time I'm at Leeds. I can't imagine that my consultant doesn't know of it but who knows?

Newdawn profile image
NewdawnAdministrator in reply toTrish67

I’m sure it’s a sound clinical decision in your case Trish but it always amazes me that they consider the risk too high in the States.

My platelets are already dropping on treatment so I wouldn’t want to impact any further. However, I totally understand the misery of cramps! 😖

Newdawn

country76 profile image
country76

I drank a bottle of electrolyte water followed by a bottle of regular water. Before treatment. Also I put pressure on the knot and massage it. Warm compresses work sometimes too, also gently walk it off. They don't last long anymore.

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