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CLL Support Association
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Body Cramps

Hi Everyone...

Have any of you experienced cramping in parts of your body you didn't think would cramp?  Case in point; I started a yoga class and as I twist, turn, and stretch I'm having cramping.  I had it in my waist area, sides of my ribs, and in one of my calves.  MY BF says it muscles I haven't used.  Any comments?  Thanks.   Carole 

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You ae using muscles that have been unused in this way, so thats why..You're twisting and bending, arching and flexing your torso, holding positions and the fascia all over  is following suit..Thats why your'e aching...It's the same as if you were to start running a marathon and not having done it before;  the body will respond.....

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Thanks for the reply.  Going to take it a little easier in the yoga class.

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Since being diagnosed with CLL in 2013, I've experienced regular night cramps in the feet, shins and calves. I'm currently on W&W but recently had a bone marrow biopsy as my WCC had dropped to 2.8. Result is that it's in my marrow. I'm now going to be checked in May when the doctors will decide whether to start me on chemo. A friend of mine has another blood condition and she also suffers from night cramps. - Doctors tell us it's nothing to do with our blood but I'm not convinced !

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Thanks for the reply.  I agree, Walter.  Doctors sometimes are just guessing.

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I think the cramps you describe whilst exercising may be different Carole but it's a hot issue with CLL'ers judging from recent threads on the subject and the number of posts they attracted. See this very useful discussion post which Paula posted;

healthunlocked.com/cllsuppo...

It's certainly a major issue for me at the moment and one I intend to be pushing with my GP and haematologist (along with the usual calcium/vitamin level checks etc.). It's absolutely excruciating at times but inexplicably I didn't suffer with it in hospital which makes me wonder if hydration is implicated.

I've been doing a lot of reading on the subject to try and find answers for myself. I know magnesium helps (but not totally) and dehydration, electrolyte levels may be involved with me but I'm absolutely convinced CLL is implicated. Clearly in Walter's case, it seems to be due to the level of bone marrow infiltration which is known to cause bone pain.

This is an old article but as always Dr. Terry Hamblin was ahead of the game in recognising issues that affect us.

mutated-unmuated.blogspot.c...

Best wishes,

(P.S. It may be that members would prefer to contribute more openly if the post was restricted to the community).

Newdawn 

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Thanks, Newdawn.  I read that a while back.  Thank you for your reply.

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Hi Carole Of late iv'e had cramps in legs . I wouldn't put it down ot CLL though , mostly to age for me.

I'm also on a lot of medication and i don't think that helps me

Hope your yoga classes turn out well in the end.

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Thanks for the reply, Brad.  I also have arthritis in my family.  Age; boo!

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You bet I get cramps in all kinds of places I've never had them before & they do hurt until they pass - usually about 10 seconds.  Sometimes putting on socks, jeans, etc., I get the a cramp on the side of the torso.  I just lean back, groan, and let it pass.  I've always thought they were attributable to the ibrutinib.

Lynn

PS ... I guess I need to eat a banana ... a banana split with Blue Bell ice cream.

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Me too .mostly in my fingers .I like the sound of the ice cream .Only fruit I don't like is banana .Really miss oranges .

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Aren't those fingers cramps something.  I was scraping ice off my windshield one morning & then I could hardly drive 'cuz my fingers kept cramping up.  You can't hurry them.  Just relax & let them subside.

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I had them in my thumbs whilst on the phone the other day .i felt like screeming 😱😱

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I am also on Ibrutinib and have had problems with bad cramping. Yes, the hand cramps are terrible. I also had many leg and foot cramps at night which really interrupted my sleep.  I  was also put on hydrochlorithiazide because of ankle and foot swelling. The longer I am on the ibrutinib though, I notice the swelling is greatly reduced, but the cramps came back.  I  also needed to drink water during the night. I recently stopped the hydrochlorithiazide and now the cramps are much better...I have also been able to walk more and think that also helps.  I find that with Ibrutinib the side effects seem to come and go. Wishing you well. Tomorrow I will have been on the drug for one year. It is a miracle!

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Oranges? We aren't suppose to eat oranges?

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Not if you are on Ibrufinib .You shouldn't eat grapefruit ether .

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I thought that ordinary oranges are OK, and the problem is only with  Seville oranges and grapefruit  (and marmalade made with those fruits).   I remember some discussion about this a few months ago, and there seems to be some differences in opinion on it.   Might be worth checking  with your doctors...  shame to miss out on oranges if they are actually OK. 

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Hi Paula 

It was my consultant that said no oranges not even orange juice .

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Imbruvica specifically states Seville oranges which are usually used for marmalade. I was told that only grapefruit and Seville oranges are a problem by my  specialist.

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Strange my consultant said right from the beginning no orange juice either . I shall query it when I go next time .

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From Imbruvica Package insert...they list drug interactions, side effects etc and under Food:

IMBRUVICA with food

Do not take IMBRUVICA with grapefruit or Seville oranges (bitter oranges) – this includes

eating them, drinking the juice or taking a supplement that might contain them. This is because it can

increase the amount of IMBRUVICA in your blood.

I checked numerous drug databases as well. I have access through my University. Drugs.com is free to all : I believe

They indicate only seville oranges and seville orange juice.

drugs.com/monograph/imbruvi...

Perhaps your consultant is being cautious.  Hopefully you will be able to enjoy them again soon!

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No St. John's Wort... there is a long list of drug interactions as well... watch for commonly prescribed antibiotics and blood thinners...

List

reference.medscape.com/drug...

I have never heard of orange juice being contra indicated, just grapefruit, grapefruit and juice and Seville oranges..

HOWEVER, grapefruit juices are used to blend in some citrus drinks, like Orangenia, so read the labels..

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Lynn...thank you for your reply.  That is when I started noticing them while putting on socks.  Just an ouch on the side of my torso (either side) that would pass.  Very annoying having never had them before.  Then, starting my yoga class, the same thing on my side, then in my calf.  However, I will not be deterred.  I've been told in the class to just do what you can do and not push it which I know I was doing.  I'm still on watch & wait; sometimes wonder how much longer till I need something.  Again, thanks.  You nailed it!

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Its touchy subject but we sll respond differently.  Someone said CLL in your marrow will cause their bones to hurt. At one point my marrow was 95% cellular when for my age should have been 30-40% and over 95% of those cells were CLL but I had no pain - now my martow counts are much closer to normal. And  my CBC  is all normal. But I have experienced some ligament damage due to Cipro family antibotics. I have been doing yoga for years with CLL. Procede  with a gentle  caring attidue - don't push to far or move to fast. Enjoy - check your potassium enjoy a banana. Stay hydrated😀

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Think I need to drink a glass of water about an hour before I go to yoga class.  Forgot about the hydration thing.  Thanks for your reply.

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I get arm and leg cramps often. Much more frequently in the last 2 years. I'm on w and w for the past 2 years. 45 years old now. I just move positions and the cramp goes away. I definitely relate it to CLL but I've got no proof. 

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Strange, isn't it, eperl.  The initial twinge of the cramp gets my attention and I move my position instinctively.  I think it may be related.  Thanks for your reply.

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In hindsight, I have wondered when, before being diagnosed, I used an exercise video after not having exercised in a while, and, afterwards, had an incredible amount of body pain and cramps.  This really was beyond what I thought was normal, but I put it down to being out of shape - I still can remember thinking I had never, ever felt that sore before after exercise.  Two months later I was diagnosed with CLL and went into treatment. I am now trying to slowly work my way back into exercise as I know it will help with fatigue and yoga is part of my plan.  I am trying to allow myself to go slowly and listen to my body.  I think with yoga, I sometimes tend to try to get too much into the stretch or position because I think I'll get more out of it - now, I am trying to listen to my body and breath more and move accordingly.  I hope you can find that balance and blend with your yoga practice that calms your body and spirit.

Namaste

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Thanks for your reply, Namaste.  Going to proceed with caution and take the class a little slower.

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I have been doing Yoga for over twenty years but I find now I cannot hold the poses for very long .If I do I really suffer .I also find floor poses give me lots of bruises on my legs so no longer do much floor work ,but a little exercise is better than nothing .

🙆🙆🙆

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Absolutely.  I believe in moving my body even if it's to go shopping, haha. Truly, a little exercise IS better than nothing at all.  Thanks for your reply.  Carole

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I participated in Paula's thread but as you mention waist and ribs, I was reminded of side stitches from my competitive running years. We would do stretches before running but these are not held long like yoga, only to 10 seconds and made sure our muscles were warmed first. Maybe try short ( 5-10 seconds) pre yoga stretches of the same muscle groups that you know you will be working on.  In my ballet class we did warm up stretches and the one time I showed up a little late missing the pre- stretch I pulled a muscle. Also in running, dehydration does play a part in exertion cramps.

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Good idea, lexie.  Didn't think, or wasn't told to shake my boody a little before to warm up.  Will do that tomorrow and thanks for your reply.  A glass of water an hour before too.

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Hey Carole.....for awhile, right after diagnosis, I was getting leg cramps at night. Oddly, they have pretty much gone away so who knows the cause? Stress over dealing with the diagnosis? Hard to say but I think yoga will do nothing but good for you so keep it up. Although you might want to take it really easy for awhile until your body gets used to the stretches!

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It's so funny, but I haven't stressed over the diagnosis.  I guess because when I saw my blood work I knew what it was.  It's kinda like whatever will be will be.  However, I do my homework, keep my appointments, and found this site which is amazing!!  I will take it easy tomorrow when I go to class.  I think I wanted to keep up with the big dogs.  Not possible right now.  Thanks for your reply, Ozziebee.

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Cramp seems to be another thing that seems common with CLL, although I found that my cramps improved enormously with taking Vit D supplements.

Louise :) 

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Thank you for the reply,  Louise.  I went to yoga yesterday and did have a glass of water about an hour before and for some reason the class was harder on me.  I had done a lot of running around during the day, so was tired when I got there.  What mg vitamin D do you take?

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The dose needed to bring a vitamin D serum level back to a healthy level tends to vary considerably between individuals.  Hence your best approach to ensure your vitamin D serum level is in the healthy range, is to have a blood test and then be guided by your doctor on what dose (if any) you may need.  That will vary by season and your degree of sun exposure (time outside, altitude, amount of skin exposed to the sun, etc, etc).  If your vitamin D level is particularly low, it may take a few blood tests and some dosage juggling to achieve a healthy level.

Neil

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Hi, I take a 25ug tablet - which I think is a high'ish dose.

Louise :)

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I believe hydration is a balance of staying hydrated for the day, not a glass of water before activity. Perhaps for you try water a few hours before activity so it has time to process. If you do find how to manage cramping be sure to update us!

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I have severe muscle cramps at times in places I didn't think you would ever have in my arms hands strange I blame it on ibrutinib but oncologist says no but one of the side effects is muscle spasms and I have never had them like this .

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low iron has caused cramping for me for the last several years. Ask to have your

ferritin level checked. Also, magnesium is important for muscle relaxation--and it helps with calcium absorption. (I'm no medical expert--just speaking from experience.)

I sometimes bend over and have my liver spasm/ just under my ribcage. Was told

by Onco "it happens."

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I haven't taken iron. I did find out this last week that my red count is going down, so believing being crowded out by the whites. I still feel okay. Thanks for sharing with me. Carole

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Let me add, that as I read through the posts, I realized another factor that I think is part of the cramping (yes in the hands (fingers and thumbs), in the feet and toes) is hydration. Taking iron requires you to drink more water, so it may be both those factors that are helping right now. Drs. just seem to look at you when your say your are having night cramping of feet that wake you and require your getting up.

Another possibility to have checked is amount of salt. Too much is bad, but so is

too low consumption.

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Thanks, clllady01. I think my cramping is just part of doing yoga. I say this because one of my friends at class the other day who has been going for two+ years was cramping in her core area. With the poses that are done, can you help but cramp? Maybe so.

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Sept. 29, 2016. Going back over the responses to my cramping. Since hydrating with more water it seems to have gotten a little better, but I had a core cramp (left side) about a week ago at yoga that stopped me in my tracks. It hurt lasting about (forever) 15 seconds, then was okay.

Still on W&W. Lymphs enlarged in neck and found a new one in right under arm. Also some new ones on right side of neck. Next appointment with Onco. in November. In May my red count was just above low normal. Dr. O'Brien said if still going down at next appt. will start on steroid. This crazy disease. All this time concerned about my white count, then reds problem pops up. Will update at that time.

Happy Fall everyone. And, Christmas is on it's way as evidenced by all the decorations in the stores. A time for joy!

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