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CLL Support Association
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Leg and arm cramps

I haven't had any real symptoms like fevers or sweating, but I am having problems with cramps every once in a while in my legs and arms, especially at night. This has been going on for the last couple of years and I wonder if it is linked to my CLL? I was diagnosed a year ago in July and am waiting on a second opinion to start treatment on either chemo for 6 rounds or ibrutinib. I went through the CLL society's free 2nd opinion link. mAny thoughts on either would be helpful I think. Thanks and God bless.

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I've had nighttime cramping in my arms and legs (also bone and joint pain), as have several people in my CLL support group meetings, but in our case it's considered a side effect of ibrutinib. If you're not in treatment, I'm not sure it is related to CLL - but everyone's situation and symptoms are different so what do I know? I tried everything but the only thing that helped me relieve it is CBD oil, recommended by both my oncologist and my clinical trial doctor. When pain flares up at night, a few drops under the tongue help me get right back to sleep. I suggest you talk to your doctor about it.

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Check out the Related Posts, which are to the right or below this post, depending on your device. Lots of us suffer from cramps :( .

Or check these search results: healthunlocked.com/search/p...

(You may have to do a refresh)

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Hi dbrees,

As Aussie Neil has said, there are lots of us with this problem and lots of postings already. His post will be vital reading for you.

For me, after decades of searching, I have three things which help a lot:

1) Magnesium tablets daily

2) About 5 minutes of leg exercises immediately before bed (stretches, knee bends, standing on tip-toes -... anything to get the lactic acid moving)

3) Avoid dehydration at all times. If you drink alcohol match with lots of water before bed.

I am confident these tips will help you enormously.

Good luck!

Nick

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Hi dbrees I had very painful leg and hand cramps before I started Ibrutinib. I take a magnesium pill every day. However, the very best thing I’ve found is a magnesium spray. I put it on my legs before bed. If I forget and wake up with a cramp I just rub in the spray and it goes right away. You can get this at most pharmacies or healt food stores.

Good luck.

Pam

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I have had severe leg cramps while on chemotherapy. I suspect it is a ph imbalance due to the Nexium I take for heartburn while on Ibrutinib. I had the same problem with other chemotherapy drugs years ago. A marathon runner suggested a few sips of dill pickle juice! I never toss out left over dill pickle juice, it has been my miracle cure for painful cramps. I take a shot before bed if I've been outside on a hot day working on the yard. There have been times I kept it on the nightstand, the cramps are so painful I can't walk.

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Try Magnesium glycinate 400 mg. 2 times a day.

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i had a really strange cause of leg cramps before my second treatment, my CLL expert doctor tested me for all the HHV viruses and discovered I had a very high level of HHV-6. It is a childhood disease called Roseola that most of the population gets before age 2, but it then goes dormant and remains in your body for your lifetime. Only one antiviral is thought to be effective. There are other HHV like EBV and CMV that can reactivate due to our compromised immune system. An infectious disease doctor may be the best source for advice.

Len

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Hi dbrees

I have muscle cramps in the calves of my legs at night. this happens when I stretch my toes down during stretching my body. If I am awake enough I quickly raise my whole foot up and it stops the cramps. If the calf goes into full on cramp, getting out of bed and standing on my foot, forcing it down will relief the cramp, but my calf may hurt for couple of days.

My wife used to ride long distance bike rides and had to stop because of the lag cramps. She tried a lot of different things to stop cramps. Her Rx suggested Mag Glycinate, 100 mg, but it made her sleepy. Her doctor and mine recommended Magnesium Oxide, 400 mg. The 400 mg magnesium oxide gave me diarrhea. The 400 mg pills did stop my leg cramps, so went to 250 mg magnesium oxide pills which helps some on leg cramps, but does not give me diarrhea.

My wife had used the magnesium spray which works great if applied during leg cramp, but not good as pre-treatment to stop cramps from happening. I just bought a bottle of MO' Maggie magnesium lotion and have used it one night and it worked. I will keep all posted on how it works out. In spite of the drenching night sweats and leg cramps, if this is the worse thing that ever happens to me, I have it made.

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You just described exactly what happens to me Big_Dee. When I awake I daren’t suddenly stretch my legs and it can be quite a task trying to pull my feet back up! 😱

Newdawn

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Amen. I might try the lotion. Thanks.

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Dbrees,

I am in a similar situation to you in many ways.

Personally I am leaning towards FCR but that is not my advice to everyone as we have learnt every patient is different.

That being said, I have comments on the other two issues you mention.

As far as the cramps are concerned, I dug around in advice I found here and elsewhere. Based on my findings I decided to start on a 200mg Magnesium Bisglycinate daily supplement and have done this for the last week or so.

This was not the maximum dosage I read about but more than the minimum. I cannot say this has cured the leg cramps completely but has worked very well, I will stick with this regime and have no intention of increasing the dosage just yet.

Regarding the CLL Society second opinion program. It seems I have had about the same amount of problems with doctors and insurance as I have with CLL itself.

I was at a crossroads earlier this year (February) and applied to the second opinion program. My experience was first class. I only wish I could work with an equally competent doctor first hand.

After the initial acceptance I was as careful to provide as much information as possible including blood results, FISH test results (including my questions), mutational status and CT Scan results.

The online doctor consultation ended up more that the allotted 30 minutes and I received a well presented report of our conversation some time later. So my advice is, go for it if you have any doubts.

Regards,

John

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Thanks so much for the wisdom. I am anxious to see how mine goes. I do on the other hand like my Dr. at KU med. in Ks. City. Dr. Val is what she goes by, but is not listed as a specialist, so that influenced me to get the second opinion. Glad to hear the positive feedback on that. Good luck. I believe God is guiding me through this and if treatment is necessary, I believe I won't have any symptoms. Thanks again.

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