Re: For once, a medical post - cramps

[Guest guest]

I would assume that poor blood circulation causes

cramps at night that are then relieved by the

circulation caused by walking around. Carolyn Swift

--- Wayne McPherson <whmcpherson@...> wrote:

> My leg cramps are no worse now than they were in my

> younger years.

> (I can guarantee you that I don't have the muscles

> now that I did then!)

> wayne

>

> jb50192@... wrote:

> We have discussed joint pain, but no one

> came up with a cll related reason for it.

>

> Just age.....

>

> Does not make sense to me.

>

> Let me add something to the pot. (And I think

> we've discussed this also, but got nowhere.) I have

> fierce leg cramps at night, and only at night, when

> in bed. Some are so strong it knocks me right out of

> bed, and I have to sort of walk them out.

>

> How many of us experience this?

>

> So far, all have told me that is has nothing to do

> with CLL/SLL, and that I should take quinine.

>

> Somehow I find this hard to accept......

>

> Anyone has anything to add to this? We can

> formulate the question to our two medical advisors.

>

>

>

>

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[Guest guest]

Mine seem to have nothing to do with whatever meds I'm on. The only theory I can come up with is that I used to be a runner before the current anemia. Perhaps my legs want more action. But why always at night, and always in bed? I'll try to do a bit more digging.

[Guest guest]

Ironically, I have just begun to experience joint pain for what appears to be no

apparent reason. I am 55. My arms and legs are affected - I also experience a

sense of weakenss in my extremities. As for the cramping,I have been

experiencin them for app. a year. I take phosphorous just as precautionary.

Our heart, as you know, is a muscle and we need to keep it fed properly. I get

cramping in my stomach area just below my ribcage and sometimes in my legs. I

had gathered some info when they first began. I'll check my files and see if I

still have it tucked away somewhere.

I personally think the cramping is somehow related to cll, but the joint pain -

well- I just don't know. I do know I had finished 8 weeks of rituxan about a

month before it all started. Isthat coincidental? I've recieved rituxan 2

other times in the past but I never got joint pain following it before. Oh,

well, food for thought!!! Anyone else have some thoughts or input on this

subject?

Bonnie

>From: jb50192@...

>Date: Sun Jul 02 17:33:30 CDT 2006

>

>Subject: For once, a medical post - cramps

>

>We have discussed joint pain, but no one came up with a cll related reason for

it. Just age..... Does not make sense to me. Let me add something to the pot.

(And I think we've discussed this also, but got nowhere.) I have fierce leg

cramps at night, and only at night, when in bed. Some are so strong it knocks me

right out of bed, and I have to sort of walk them out. How many of us experience

this? So far, all have told me that is has nothing to do with CLL/SLL, and that

I should take quinine. Somehow I find this hard to accept...... Anyone has

anything to add to this? We can formulate the question to our two medical

advisors. 

Don't tell God how big the storm is-

Tell the storm how BIG God is!

[Guest guest]

I had experienced cramps in the past and long before CLL.

During steroids treatment the cramps were very painful and I even had

to go into the shower if I woke up at night, to have a hot shower to

stop the cramps and pain, it did work.

What seemed to work for me in the end was to eat yogurt before I

went to bed, I joined the ITP forum and there people seemed to have

the problem very often, due to the amount of steroids they take to

help platelets,

I followed some of the experiences from others and did increase the

yogurt intake a lot, before going to bed I would eat a very large pot

of yogurt (425 ml.). For whatever the reason it did work and the

cramps stopped.

I have not had cramps now for over a year, apart from I think once

several months ago, I do continue to eat a lot of yogurt and often I

make a point to have it before bed time.

although I gad cramps in my life before CLL, I think the steroids

actully made them worst and much stronger than I remember before.

I think it is one of the vitamins from the yogurt that helps, but

again experts do not always believe that a vitamin might help, still

worth asking the experts for their opinion.

regards

Chonette

PS

I am posting this on line as I still have not sorted out the problems

with the list and my computer.

>

> We have discussed joint pain, but no one came up with a cll

related reason

> for it.

>

> Just age.....

>

> Does not make sense to me.

>

> Let me add something to the pot. (And I think we've discussed this

also, but

> got nowhere.) I have fierce leg cramps at night, and only at night,

when in

> bed. Some are so strong it knocks me right out of bed, and I have

to sort of

> walk them out.

>

> How many of us experience this?

>

> So far, all have told me that is has nothing to do with CLL/SLL,

and that I

> should take quinine.

>

> Somehow I find this hard to accept......

>

> Anyone has anything to add to this? We can formulate the question

to our two

> medical advisors.

>

>

>

[Guest guest]

Stiffness and pains in my joints and peripheral muscles (thighs, upper arms)

started 6 months before my CLL dx and I was diagnosed with polymyalgia

rheumatica. I did some PubMed search but couldn't find any established

connection between polymyalgia and CLL - which of course doesn't mean there

isn't any. For one thing, both involve the immune system (polymyalgia is an

auto-immune disease).

On the other hand, I hardly ever have muscle cramps.

Andy Gach

75, dx 12/05, unmutated, w & w.

For once, a medical post - cramps

>

>We have discussed joint pain, but no one came up with a cll related reason

>for it. Just age..... Does not make sense to me. Let me add something to

>the pot. (And I think we've discussed this also, but got nowhere.) I have

>fierce leg cramps at night, and only at night, when in bed. Some are so

>strong it knocks me right out of bed, and I have to sort of walk them out.

>How many of us experience this? So far, all have told me that is has

>nothing to do with CLL/SLL, and that I should take quinine. Somehow I find

>this hard to accept...... Anyone has anything to add to this? We can

>formulate the question to our two medical advisors.

Don't tell God how big the storm is-

Tell the storm how BIG God is!

[Guest guest]

I am of W & W and have had no problems with leg cramps or joint pain. I am 61. I'm thinking these problems may be related to the treatments you have had. ArleneJim and Bonnie <bonniegoodhart@...> wrote: Ironically, I have just begun to experience joint pain for what appears to be no apparent reason. I am 55. My arms and legs are affected - I also experience a sense of weakenss in my extremities. As for the cramping,I have been experiencin them for app. a year. I take phosphorous just as precautionary.

Our heart, as you know, is a muscle and we need to keep it fed properly. I get cramping in my stomach area just below my ribcage and sometimes in my legs. I had gathered some info when they first began. I'll check my files and see if I still have it tucked away somewhere.I personally think the cramping is somehow related to cll, but the joint pain - well- I just don't know. I do know I had finished 8 weeks of rituxan about a month before it all started. Isthat coincidental? I've recieved rituxan 2 other times in the past but I never got joint pain following it before. Oh, well, food for thought!!! Anyone else have some thoughts or input on this subject?Bonnie>From: jb50192aol>Date: Sun Jul 02 17:33:30 CDT 2006> >Subject: For once, a medical post - cramps> >We have

discussed joint pain, but no one came up with a cll related reason for it. Just age..... Does not make sense to me. Let me add something to the pot. (And I think we've discussed this also, but got nowhere.) I have fierce leg cramps at night, and only at night, when in bed. Some are so strong it knocks me right out of bed, and I have to sort of walk them out. How many of us experience this? So far, all have told me that is has nothing to do with CLL/SLL, and that I should take quinine. Somehow I find this hard to accept...... Anyone has anything to add to this? We can formulate the question to our two medical advisors. Don't tell God how big the storm is-Tell the storm how BIG God is!

[Guest guest]

try drinking alot of h2ojb50192@... wrote: Mine seem to have nothing to do with whatever meds I'm on. The only theory I can come up with is that I used to be a runner before the current anemia. Perhaps my legs want more action. But why always at night, and always in bed? I'll try to do a bit more digging.

Music Unlimited - Access over 1 million songs.

Try it free.

[Guest guest]

Chonette's letter about yoghurt helping her with leg

crams reminded me that I did once hear about a

connection between leg cramps and calcium. Carolyn Swift

__________________________________________________

[Guest guest]

I responded to this entry a few days ago. I believe I said I took phosporous

for it. If I did, please let me stand corrected. It is potassium. My husband

played serious baseball and use to get incredible leg cramps. He suffers from

them to this day. Two sports doctors told him to take potassium which is vital

to the health of your heart also. If you are cramping from deficiency, your

heart, as a muscle, can also be effected.

Bonnie

Don't tell God how big the storm is-

Tell the storm how BIG God is!

[Guest guest]

Very interesting; half the folks in my yoga class will appreciate this!

>From: Jim and Bonnie <bonniegoodhart@...>

>Reply-

>

>Subject: Re: Re: For once, a medical post - cramps

>Date: Tue, 04 Jul 2006 06:16:04 -0500 (CDT)

>

>I responded to this entry a few days ago. I believe I said I took

>phosporous for it. If I did, please let me stand corrected. It is

>potassium. My husband played serious baseball and use to get incredible

>leg cramps. He suffers from them to this day. Two sports doctors told him

>to take potassium which is vital to the health of your heart also. If you

>are cramping from deficiency, your heart, as a muscle, can also be

>effected.

>

>Bonnie

>

>Don't tell God how big the storm is-

>Tell the storm how BIG God is!

>

>

>

>

>

[Guest guest]

I can commiserate about the joint pain. It was one of my earliest symptoms.

Regarding rituxan as the possible source...it's interesting because it has

just been approved as a treatment for rheumatoid arthritis. Evidently,

b-cell depletion in these people contributes to the inflammatory response in

the joints.

I'm also wondering whether there's some bone effect -- ? anyone? as the

slate is cleared (so to speak) in the marrow and it starts to regenerate, is

there some possibility of pain? I know that joints and bones are different,

but still...I haven't done any research and I barely can formulate the

sentence asking the question! But it's a thread of an idea...

<html><div><BLOCKQUOTE dir=ltr style= " MARGIN-RIGHT: 0px " >

<P align=center><FONT face= " Verdana, Geneva, Arial, Sans-serif "

color=#33ccff><EM><STRONG>Marietta Brill <BR></STRONG>cell: 718-938-8712

<BR></EM></FONT></P></BLOCKQUOTE></div></html>

----Original Message Follows----

From: Arlene Diederich <arlenediederich@...>

Reply-

Subject: Re: For once, a medical post - cramps

Date: Mon, 3 Jul 2006 10:16:40 -0700 (PDT)

I am of W & W and have had no problems with leg cramps or joint pain. I am

61. I'm thinking these problems may be related to the treatments you have

had.

Arlene

Jim and Bonnie <bonniegoodhart@...> wrote:

Ironically, I have just begun to experience joint pain for what

appears to be no apparent reason. I am 55. My arms and legs are affected - I

also experience a sense of weakenss in my extremities. As for the cramping,I

have been experiencin them for app. a year. I take phosphorous just as

precautionary. Our heart, as you know, is a muscle and we need to keep it

fed properly. I get cramping in my stomach area just below my ribcage and

sometimes in my legs. I had gathered some info when they first began. I'll

check my files and see if I still have it tucked away somewhere.

I personally think the cramping is somehow related to cll, but the joint

pain - well- I just don't know. I do know I had finished 8 weeks of rituxan

about a month before it all started. Isthat coincidental? I've recieved

rituxan 2 other times in the past but I never got joint pain following it

before. Oh, well, food for thought!!! Anyone else have some thoughts or

input on this subject?

Bonnie

>From: jb50192@...

>Date: Sun Jul 02 17:33:30 CDT 2006

>

>Subject: For once, a medical post - cramps

>

>We have discussed joint pain, but no one came up with a cll related reason

for it. Just age..... Does not make sense to me. Let me add something to the

pot. (And I think we've discussed this also, but got nowhere.) I have fierce

leg cramps at night, and only at night, when in bed. Some are so strong it

knocks me right out of bed, and I have to sort of walk them out. How many of

us experience this? So far, all have told me that is has nothing to do with

CLL/SLL, and that I should take quinine. Somehow I find this hard to

accept...... Anyone has anything to add to this? We can formulate the

question to our two medical advisors.

Don't tell God how big the storm is-

Tell the storm how BIG God is!

[Guest guest]

I have absolutely no evidence to support this, but my fMDs recommended me drinking lots of H20 during chemo (rituxan/fludarabine) -- my sense was that they wanted my kidneys as free as possible to do their filtering thing, so I didn't want to preoccupy them with anything that would cause them to work harder. So I quit coffee, which is a diuretic. That also went for vitamins, which I think often put the kidneys through extra paces. I applied the same thinking to my liver, keepign away from fatty foods and alcohol. The MDs told me to drink tons of H20, and it became a habit. I figured if they were saying that, it was a good idea to help my kidneys along. I didn't want anything accumulating. I had a headache for a few days, but I quit before chemo so it wasn't additive.

Good luck with your chemo! I wish you all the best.

Marietta

Marietta Brill cell: 718-938-8712

From: "Jeanne Halpern" <jeannehalpern@...>Reply- To: Subject: Re: Re: For once, a medical post - crampsDate: Fri, 21 Jul 2006 15:34:33 +0000

Anyone have accurate info on whether it matters if a patient drinks coffee/espresso during chemo for CLL? We've read both sides and would like to see some real evidence if straight coffee, not decaf, OK or not. Thanks, Jeanne