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Q: High HDL level (150) Excruciating leg cramps start top of feet - Take Coumadin ( No Answer,   1 Comment )
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Subject: High HDL level (150) Excruciating leg cramps start top of feet - Take Coumadin
Category: Miscellaneous
Asked by: schmooz-ga
List Price: $25.00
Posted: 27 Jan 2004 10:34 PST
Expires: 26 Feb 2004 10:34 PST
Question ID: 300799
My Mom takes Coumadin for an enlarged heart.  For years she has had
leg pains that come from nowhere, starting on the top of her foot and
quickly seizing the muscles on the outer part of her calf, causing her
to shreek in unbelievable pain.  She has a lifetime of extremely high
HDL levels of around 150.  This leg problem has plagued her for many,
many years but not at this level of pain or frequency.  (I also have
high HDL levels and experience this at the level she did when she was
my age - but no heart problems at all)

Doctors seem to know little about this kind of leg cramping and have
been  suggesting Qunine, which sends her levels of Coumadin crazy. 
She has tried added magnesium. . .anything and everything but nothing
helps this.  She blames in on Coumadin and then out of desperation,
quits taking the Coumadin.  This
does the trick for a short time but then the pain comes back again,
repeating itself.  In the meantime, her doctors insist that she just
has to go back onto Coumadin and the pain attack in the muscles of her
upper foot and leg comes on strong and often.

The doctors have no answers and cannot figure out why this is
happening.  Muscle relaxers, the ones she can take while on Coumadin,
just do not do the trick.  She is very scared that the excruciating
pain attacks will bring on the heart attack that she is having to take
the Coumadin to prevent.

I am not asking for a medical diagnosis but would appreciate any help
that can be shared.

Question:  I have heard somewhere that people with ongoing, extremely
high HDL levels may have poblems like I have described above, where
the high HDL level eats away at the muscle and causes the unbelievable
cramping that seems, for a short while, to turn the calf into stone. 
I have looked on the Internet for this but could find nothing.  An
answer would be some helpful references on this or any references that
address leg pains as described above.

Thank you for anything - my mom is quite desperate and there seems to
be no medical solution out there from her various doctors. (I will
thank you to because I seem to be traveling down this same path)

Request for Question Clarification by pinkfreud-ga on 27 Jan 2004 11:31 PST
Hi, Carolyn!

Muscle cramping in the legs can be caused by electrolyte depletion.
Have your mother's physicians ruled this out?

I sometimes have agonizing leg and foot cramps that feel like the
ultimate charley-horse. In my case, I know the cause. I had my colon
removed many years ago, and it is easy for me to become dehydrated.
When that happens, my electrolyte balance goes all wonky, and the
muscles in my legs seize up. People who take diuretics and people who
consume a lot of caffeine sometimes have the same problem.

I'm actively researching your question, and I will let you know
whether or not I can find any connection between HDL, Coumadin, and
leg cramping, but I wanted to ask about the electrolytes first.

~Pink

Request for Question Clarification by pinkfreud-ga on 27 Jan 2004 13:46 PST
This is what I've turned up so far.

Here are several good discussions of leg cramps and muscle cramps:

http://www.parkinson.org/muscramps.htm

http://the.honoluluadvertiser.com/article/2003/Feb/08/il/il02a.html

http://rxinsider.com/monographs/leg_cramps.htm

http://www.doctoramyallen.com/leg-cramps.htm

http://www.aautaekwondo.org/TrainingTips/TTTreatingLegCramps.htm

http://www.mothernature.com/Library/Bookshelf/Books/10/77.cfm

http://www.pennhealth.com/ency/article/003182.htm

I have found no reports linking high HDL to cramps or pain, but among
the possible side-effects of Coumadin is "abrupt and intense pain in
the leg, foot, or toes":

"Abdominal pain; abrupt and intense pain in the leg, foot, or toes;
blood in the urine; bluish mottling of the skin of the legs and hands;
foot ulcers; gangrene; blood hypertension; muscle pain; 'purple toes
syndrome' (see below); rash; or thigh or back pain...

Purple toes syndrome can occur when taking Coumadin, usually 3 to 10
weeks after the start of anticoagulation therapy. Symptoms include
dark purplish or mottled color of the toes that turns white when
pressure is applied and fades when you elevate your legs, pain and
tenderness of the toes, and change in intensity of the color over a
period of time. If any of these symptoms develop, notify your doctor
immediately...

Coumadin can interact with a very wide variety of drugs, both
prescription and over-the-counter. Check with your doctor before
taking ANY other medication or vitamin product.

Be extremely cautious, too, about taking any herbal remedies and
supplements. A wide assortment of herbal products ? including St.
John's Wort, coenzyme Q10, bromelains, dan-shen, dong quai, garlic,
and ginkgo biloba ? are known to interact with Coumadin or otherwise
affect coagulation."

http://www.infagra.com/c/coumadin.html

I'm going to keep digging. I'll let you know if I see anything of interest.

Clarification of Question by schmooz-ga on 28 Jan 2004 18:17 PST
Hello Pink!  Glad you grabbed the question!  Amazing - I also had all
my colon removed but 9" in 1997 but my foot cramps (going up into the
leg) started years before this. My mom had an ulcer operation 30 years
ago that took part of her stomach and part of her intestines.  She
also had the same upper-foot cramping that worked up to the leg before
her operation but it has gotten waaaaay worse.  She says it is the
worst pain she has ever experienced in her 83 years of life. . she is
no whiner!.
Mom drinks tons of water and had had her electrolytes checked - they
appear to be just fine.  (Me to).  There are three of us in the family
- all with consistant high HDL levels (137 - 150) - all with these
cramps, starting in the top of the foot. . spreading the distance
between one or more toes and then going up the leg.  I awaken in the
middle of the night, screaming. . out of a deep sleep.  My husband is
on automatic - jumps up and gets a huge pan of hot water which I stick
my foot into while rubbing my leg.  I go through weeks where this does
not happen and then it does happen sometimes, several times in an
evening and for days running.  Then it goes away.  Mine pales when
compared to my Mom.  (By the way, her feet are that mottled red-color
you talked about).  Telling you more than you want to know. . . sorry
:)
I moved today and am just starting to read what you have written.  The
person telling me about the potential high HDL connection to severe
muscle cramping was a doctor but he could not remember where he read
about this.  If you do come across something - toss it this direction.
 If you feel that what you have posted - is pretty much what is out
there on leg/foot cramping - go ahead and take the question.  I
appreciate the fact that you left it open for a while BUT YOU are one
of the best and if you cannot find anything on this in the Internet -
there must not be anything.
Thanx Pink  Carolyn

Request for Question Clarification by pinkfreud-ga on 28 Jan 2004 18:46 PST
Carolyn,

I'm still chewing on this one. I don't want to post an answer that
doesn't really offer any useful information. I guess we can rule out
the Coumadin connection as the cause of the problem, since other
family members who do not take Coumadin have similar cramping.

I'd like to leave the question open for a while. I am still prowling
around in hopes of turning up something promising. In the meantime,
I'm not locking the question, since someone else may very well find
useful info that I have missed (hey, it could happen!)

~Pink
Answer  
There is no answer at this time.

Comments  
Subject: Re: High HDL level (150) Excruciating leg cramps start top of feet - Take Coumadin
From: heybill-ga on 29 Jan 2004 11:13 PST
 
Pain is nuerologically mediated. Looking at the dermatomes of
sensation [areas enervated by specific nerves] the top of the foot and
calf  get messages from and send messages to the spinal cord through
S1 predominately. An anatomy reference shows these. The message goes
to the brain and is interpreted as pain.

That the pain is localized and stable and so long standing is GOOD.
Your Mom may not think so though. Patients are rarely satisfied that
nothing can be found.

It sounds like you mother has "nueropathic " pain More specifically,
it's"lancinating" pain.. like being stabbed by a lance and comes from
those specific nerves. This is the diagnosis when no specific problem
like a pinced nerve can be found.

Nueropathic pain is treated with topical capsaicin, the hot part of
peppers, that depletes a nuero messenger - substance P. It's OTC -
read the instructions; it burns a little when it's first used but that
goes away; you don't touch your face, etc. [We all probably learned
that as a kid.} Also amitriptyline,  the anticonvulsants, and
gabapentin have been shown to help as well or better for some people.

Don't let her quit her coumadin. Studies continue to show that an INR
between 2 and 3 is the best way to anticoagulate.

Bill

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