My husband is getting severe bouts of Cramp, any ideas on what he can do or take would be gratefully received. Thank you in advance.
CRAMP: My husband is getting severe bouts of... - CLL Support
CRAMP
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opal11uk
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NewdawnAdministrator
I suffer terribly with cramp and appreciate how excruciating they can be. Apart from a magnesium supplement, I’m finding a daily electrolyte drink can help. There’s many on the market but I use a sugar free, berry one which are basically an effervescent tablet you dilute in lots of water. I’m only mentioning the brand because they’ve helped me but there may be more effective ones. They’re called High 5 Zero and I purchased them at a reputable health food shop. Palatable to drink.
Obviously discuss with his doctor first because electrolyte drinks can contain sodium and potassium which is contraindicated with more severe blood pressure problems.
Best wishes,
Newdawn
I started getting leg cramps in bed at night,my haemotologist said I should drink at least 2 litres of water a day,it cured me after a few days
We work in agriculture in the S TX heat so our cramps come from dehydration. Pickle juice clears them up immediately. With that said, if yours is caused by a deficiency in a nutrient, I would definitely get it checked out.
What is Pickle Juice.....Vinegar ?
Do your grocery stores sell cucumber dill pickles in jars? The main ingredient in the liquid is vinegar and salt. Drinking it as pickle juice tastes much better than straight vinegar/salt solution.
Yes, I buy this for myself but he won't eat them lol however he loves pickled onions so will try that!
I had to stop eating tinned plum tomatoes. A 400g tin on two slices buttered toast was guaranteed to have me jumping around the bedroom at 2am trying to stomp the cramp away. (400g is all 5 of your 5 a day.)
AussieNeilPartnerAdministrator
A magnesium supplement works well, as does topical magnesium cream. Ask your pharmacist. I achieved relief within a couple of minutes of application. I regularly had cramps prior to treatment until I started a magnesium supplement, which I couldn't continue taking during treatment. My clinical trial nurse recommended the cream. After treatment, the cramps virtually ceased.
Neil
Thank you Neil x
After being in ICU, my cramps were so severe on occasion that I lost consciousness and cracked my head open. Magnesium supplement worked for me. Prescribed by hospital. A full blood test showed what minerals I was deficient
Wow, not nice......interesting re blood test showing deficiencies, might be a good idea to get this checked. Thank you, I hope you are doing well.
Internal cramps, muscular cramps? Are you now experiencing the summer solstice, has he over exerted himself? Electrolytes and hydration would be my go to...🙂
Thank you
I dissolve potassium, sodium, and magnesium powders in sparkling water and drink it all day long. Google "snake juice" recipes for electrolyte supplementation.
Are you by any chance taking a statin? They are known to cause muscle cramps. My husband used to get really bad ones but was able to stop statin and they are much less frequent. I buy a magnesium spray from Amazon that seems to help a lot. Also pickle juice is known also to help with cramping. I buy him something called liquid iv that is added to water or to powerade to increase electrolytes.
Thank you. No, he is not on Statins but I have to admit that his fluid in take is poor so need to increase that. I already bought Magnesium supplements, 2 different makes, but he says that they are not working, have ordered the topical Magnesium which should come today. My next step is the doctor and a blood test to see what he is deficient of. He is 84, still plays competitive table tennis, very keen gardener but it has to be said they he gets tired now quite quickly which, in my opinion, is understandable for his age and for his CLL although his readings are good and now only checked every 12 months.
It is years ago now, but I had severe cramps in the period of watch and wait and the period leading up to treatment and in the early stages of treatment. I took Magnesium, and still do, to manage it, and was also prescribed a medication called Lumirelax to take during a severe cramp. It says 500 mg of méthocarbamol on the packet.
In addition I had learned something at an Ayurvedic medical centre where I spent a total of 5 months when I was still in watch and wait. They would use a rough salt and vigorously massage the cramping muscles with the salt. Inexplicably to me, it did work to relieve or even end the cramping. Once I was back home I would therefore have a jar of salt next to my bed , and if woken up by severe cramps would immediately start massaging with salt.
Then I also considered that it was important to work consistently on keeping the muscles in my legs supple and not rigid, and would do some simple daily stretching exercises of the calves, feet and legs. I would need to do this carefully since the exercise could also set off cramping, but I do think it is important to persevere and do gentle stretches so that the legs are less tight.
I hope you find a way of managing your cramps. It can be so excruciatingly painful and incapacitating, but luckily in my experience it can also suddenly disappear again.
Thank you, I think those who have kindly given their own incidences of cramp shows that it points to deficiencies so am going to get him in for a blood test to see if anything specific can be identified.
I think it is always good to have a blood test to see what deficiencies show up, but I think we have to be aware that we are special cases due to the treatments we are receiving. Standard measures of what are sufficient or insufficient levels of vitamins, minerals etc may not be good enough for us. I have never thought I had a magnesium deficiency as compared to what is 'normal' but I do know that having a higher level of magnesium in my blood does make a difference to the severity of the cramps I may get. Sometimes we may need to go for an 'optimum' level rather than just a 'sufficient' level. It would be good to bear that in mind when you have your discussions with health professionals.
Agree, however apart from Rampril he takes nothing at all, I think he is darn lucky to be drug free at 84 years of age I wish I was, my stock answer is, I don't drink I just do drugs, which didnt go down too well with the American customs officers in the States lol, they didnt see any humour in the statement whatsoever lol
I have had very painful lower leg shin and foot nighttime cramps, so bad I've also blacked out. Blood tests revealed I was deficient in folic acid. I now take supplement daily which keeps it under control. I find if I miss a day it returns. I also keep a handheld massage machine by the bed to help relieve cramps when they occur. My husband suffers with calve and finger cramps for which he takes prescribed quinine.
Could simply be he's become lactose intolerant. Try cutting out all foods with it in for a couple of weeks to see if there's an improvement. I suffered for 7 years with it until I discovered I was dairy intolerant.
That's very interesting, thank you x
I used to get that when I was on Ibrutinib. Mainly in bed and in the mornings. Didn’t really find anything to help.
Have really bad cramps from time to time. I take magnesium daily and it helps a little. The cramps are in legs back of thighs calves and shin . Very disabling and horrific pain. If I stretch in morning on wakening it can be bad. Another thing that brings it on is if I do heavy lifting. A mixture of magnesium selenium potassium is the only way to deal with these. Also keep warm I find to be important. Regards.
There are several types of magnesium supplements. Does anyone have any thoughts in which ones work best?
Drink plenty of water! I was suffering from painful cramps in my hands and calf muscles and sorted the problem by drinking more water.
When I was on Ibrutinib I suffered lots of severe cramping. I drank lots of water, took magnesium pills but when one of the cramps started I applied a magnesium topical spray oil and within minutes the cramps disappeared.
are his magnesium levels ok? If I am low in mg.i often get leg cramps..so sometimes I soak both feet in epsom salts and warm water
Hello, IS your husband receiving any treatment currently?, or is he on a "wait & watch"?
As for immediate results, what is your husband's current weight? Rule of thumb is to consume the amount water/fluids , in ounces, that is equivalent to 67% of your body weight.
For example, if your husband weighs 175lbs, 67% is 117 which represents the number of ounces. Water, Gatorade, PowerAde, Pedialyte, or anything that is an electrolyte supplement is good. We all should be drinking more water ! Good luck and let me know how things work out. Cheers
Thank you for your reply. He is on W/W and has been now for about 6 years, checkup yearly as seems to be more or less in remission. His weight is 11 stone 4lbs, height 5'7", he eats like a horse lol, just loves his food but I think thats a good thing given his age and overall fitness. Good to hear about the products that contain what he needs as supplements so will get some and yes, you are quite right, he does not drink enough fluids so I will be working on that.
Hello, so you husband weights about 158 lbs.. Good that he eats ! Good weight for 5'7". How old is he ? As for remission, W&W is not a form or state of remission. It is merely a holding pattern. 30 years ago we would have been on an immediate course of treatment. Today it has been proven that treatment is not need immediately, as long as other blood levels remain consistent and that the good cells are not "crowded". It used to bother me that my WBC was higher than normal, and continued to climb, but in spite of high elevation of white blood cells, my life still seems to go along as "normal". Does he have other symptoms: Fatigue, Night Sweats ? Cheers !
He is 84, the only meds he takes are for high blood pressure. No night sweats, yes does get tired after playing his competitive table tennis and this takes place in the evening finishing around 10.30 pm so natural really, avid gardener, digs/mows etc., so pretty active, hates sitting watching tv and everything is either ridiculous or boring hehehe, being much younger he aggravates me lol but them after 63 years of married bliss what can you expect......
He sounds like he is very active for 84 and certainly YOUNG at heart ! As for his condition, as I mentioned, it is my understanding that CLL is never really in remission, it is treated, however, by today's advancements and knowledge, you can continue to live a normal life without treatment, until it is necessary. Every day that goes by without the need is a plus, and this is because each and every day there is better treatments and new discoveries on how to treat, and potentially even cure CLL. Seeing your husband has high blood pressure, he is probably on medication for this. Remaining well hydrated by drinking water may help keep his blood pressure under control along with other health concerns. Chronic dehydration can also be a cause of high blood pressure by making the body hold onto sodium, increasing blood volume and thus blood pressure. I am not a healthcare provider but have studied much these things. DRINK WATER.. as for electrolytes, try to watch those with higher sodium, or just stop cooking or using salt, so he can drink those hydrating drinks without causing added sodium in his body. Make sense ? BTW, I too have CLL, along with a small 4% of MCL (mantle cell leukemia).. i was diagnosed in May 2018 .. Still on wait and watch. Have a follow-up this coming Friday.
Actually my husband after his last treatment almost 3 years ago has no evidence of disease and his oncologist said it may never return. He is 85 and he agreed with me that if a physician did not know his history based on his blood work and lack of lymphadenopathy CLL would not be detected. So I would consider that remission the same as I am after my own cancer diagnosis 2 years ago that was “cured” with surgery which still needs 6 month follow-ups.
Yes, sorry if I was misleading.. CLL is in a state of remission after treatment. I was commenting on Opal referencing that her husband has had no treatment, is on W&W, and is in remission. My comment was that Wait & Watch is not remission. Fortunately, of all cancers, CLL can remain as is, on a schedule of W&W, and our lives continue normally, until treatment is needed. In some cases, you never need or receive treatment.
Thank you, ive been giving this a lot of thought, he has Divaticulitis and is frequently going to the toilet so that, plus frequent urination will cause fluid loss and in turn dehydration soooooo think this is possibly the problem. He hates doctors/surgeries/hospitals etc, etc, and I mean hate lol but I think this has to be addressed if he wants to rid himself of cramp so an appointment will be made for blood tests. Thank you for your informed comments, all very much appreciated and those too of members on this Forum, to whom I send my very best wishes. I personally don't have CLL however I am a heart patient and visit another Forum on here for my problems lol and I find most members of both most helpful and supportive and we all need that in our lives. Good luck on Friday x
I hope your husband finds the topical application works, because I suspect that a low magnesium serum level won't show in a blood test. So I agree with Provence in this regard that it's about achieving an optimum level to prevent cramping, rather than one that is within the reference range.
As you have seen from all the replies you've received on cramps with CLL, it's a commonly experienced problem, with little mention of blood test confirmed inadequacy. So I think that it's an unexplained side effect of having CLL. Some specialists doubt that this correlation/causation is real, but I definitely found cramping worsened prior to treatment unless I took magnesium and I no longer needed to take it within a few months of starting treatment. Also, I had no reports of low magnesium while I was having magnesium and other biochemicals monitored for TLS during my clinical trial, but I still had cramping. A topical application of magnesium chloride hexahydrate 300mg/g was recommended. Rubbing about a teaspoon of 'Active Magnesium Cream' onto the affected muscle was all it took to relieve the cramping.
Neil
We now have the cream and also some effervescent tablets and the regime has started with more fluids as he really does not drink enough, fingers crossed.
Like your husband and many on this forum, I too have suffered since CLL dx (about 4 years ago, on W&W) from the bolt-out-of-bed very painful nightly typically lower leg n ankles cramps.
Read up a lot on this issue, tried “remedies” from this good forum and from several docs… n found a pair of supplements taken before bed (key timing) has helped a lot to make those cramps a lot less frequent.
The supplement solution I’m taking right before bedtime is:
1. 5 mg of Vitamin B6
2. 235 mg of Magnesium Glycinate. Glycinate I read, is the Magnesium “type” recommended for cramp relief.
The above 1. Supplement I take is from a “Super B Complex (with Vitamin C) pill that my GP doc recommended. The Super B Complex that I buy an inexpensive Target brand, here in US, contains: the B6, a heavy dose of folate, and a mega dose (1,000 mg) of B12, plus some vitamin C. The Bs n folate are all good for also “hopefully” helping one from developing Alzheimer’s, which unfortunately runs in my family (hopefully, a secondary big bennie by taking the Super B Complex pill, that’s why I noted all the above details it contains).
Anyways, 1. n 2. are my suggested “remedy” to battle the night leg cramps. Just one opinion.
Note: Always consult with your doc before taking any new supplements to get their ok. Very important.
Good luck to your husband on finding something that works to relieve his cramp issue. Let us know if he hits a jackpot “remedy”!
Think it seems to be a common thing,I also get them sometimes 3x a night when having a bad time with them,I now stretch my legs out before bed,drink plenty of water through the day,I am on high dose statin also,so point the finger at that,but,I can go for a week or more without any cramps.
Hello opal11uk
My wife has suffered from leg cramps for years. She uses a roll-on magnesium as magnesium supplements cause her to have diarrhea. She also has drunk pickle juice when she did a lot of long-distance bike riding. I have found that when I infrequently have leg cramps, if I stand up and force my foot flat to the floor the cramp stops. Blessings.
I was getting them one after another right before treatment. I was put on potassium and haven't had one since. My husband gets them occasionally and rubs apple cider vinegar on them and they go right away.
Have your doctor check his potassium levels.
Drinking plenty of water is my solution.
Thanks for asking this question, I too have terrible calf cramping especially at night. My legs are always sore the next day. Magnesium citrate has helped in the past, time to reorder 👍
Have you had a blood test to see if you are deficient in any of the essentials, this is the advice from some of the Forum so thats my next move. I have bought Magnesium tablets, hubby has 2 different lots but he thinks a lot of this stuff is 'snake oil' , also just had delivered a topical gel and waiting on delivery of effervescent tablets to put in to water, but again, its getting it down him. The cramp was so bad the other night he woke me up screaming in agony, it was in his lower legs, both, then went to his groin so he is now considering his options so maybe will start to 'do as he's told'!!!!! lol
Have had severe thigh and ankle cramps, also in hands and forearms, any time my water intake falls below 50 ounces minimum daily through carelessness. Am recommended to intake 64 ounces but sometimes get busy don't pay attention. Chug down 16 ounces and it goes away, though I try to rub or exercise it as well.
OK this is interesting.First time I did not link my cramps especially in my toes to CLL.
So are we saying cramps are a regular issue with CLLers?
I have a face to face with my oncologist at 1400 UK time so will ask.
I drink loads of fluids, not all alcohol 😅 😆
Let me know what your oncologist thinks about its connection with CLL please and good luck x
Hi, sorry for delay had a complication with my chemo yesterday.Any way, my oncologist said yes it can be linked to CLL, especially during treatment. Chemo the most common.
Keep hydrated was the advice.
Stay safe
first i would check with the doc to see if you can find the cause (get labs done) but just in general you need to be hydrated, up your sodium (provided you don't have a health issue that would cause you to avoid sodium) add a banana a day to your diet. stretch before bed
My cramps were feet and calfs. omg so painful. I have a sure fire way to have them go away. Alternate Ice and Heat. Ice first for a minute and them go straight to a warm, wet towel that is heated in the microwave. be careful not to make it too hot... then go back to the ice... do 2 or 3 times and cramp is gone. Of course yes the magnesium and electrolytes can help as does Pickle Juice 
Thank you
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