leg/foot cramps? anyone else have them

[revisionDS]

hi everyone,

Anyone have any ideas about cramps, I get shin and foot cramps very often, never calf cramps. I never get them during the am. About 95% are between 4pm and 9pm, occassionally in the middle of the night. There is never a single cramp, always 2+ at the same time. I have been trying to resolve this for 2+ years, but have not been able to. Have told my PCP and he brushes it off. I have ruled out the following as my blood work is fine. anyone have any suggestions?

calcium
magnesium
sodium
potassium
chloride
cholesterol
Vit D
VitB12, 6, 1,
Selenium
dehydration

I am not on hp medication, don't have diabetes, no liver disease.

 

[hilary1617]

My first thought is a deficiency in magnesium or other mineral/vitamin, though I see you ruled that out. My next thought is physical strain. I'd look at both footwear and activity as possible causes. More supportive shoes might be in order.

 

[southernlady]

MY first thought for the legs is RLS. http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm

 

[newanatomy]

I get them, too. Toes curl up under my feet. Pinching pain down the side of my chin into my ankle. Not every day just a few times a week and like you, not at night. I have added some potassium citrate, doesn't seem to help with the cramps but, I also take it to keep kidney stones at bay. I wonder if it is a dehydration thing? I drink a ton. . . ugh.

 

[revisionDS]

@hilary1617 it is not activity, epecially since it has been going on for years, or footwear (as I have gone to a podiatrist)

@southernlady these are actual cramps you can feel and see, the feet turn, shins tighten, toes bend etc and you don't want to move as then you get cramps elsewhere in your legs. I have gotten 4+ cramps at once, incapacitating me. While they never last long, they are extremly painful, the same as when you get calf cramps. These you can actually see you muslces squeezing etc. Toes pointed straight down, ankles turned inwards, etc

@newanatomy that is exactly it!!!! few times a week, when they come and so many at the same time it is difficult to bear the pain, and it has been going on for so long. Just like any other cramp you have to move a certain way to help, but sometimes that brings on another cramp. I have been taking potassium citrate for years now, I take 20meq 3xs a day with food, for the same reason you do. I dont think it is dehydration. I have 24 hour urines done, and they are always more than 2500mL (about 90 ounces) I would really like to figure this out, damm puzzling. It makes sense that is it a vit/min deficiency but I have not been able to pinpoint it. I have an appt in May with my PCP, if you find anything out please let me know.

thanks all

 

[Barb1]

Me to but mainly in the feet and ankle area. I have to get up and walk them out although it is painful it does get them to stop. I go for my yearly check-up Monday and will then have labs done. It is on my list of things to talk to the doctor about. I hate the ones that make my ankle turn inward at a strange angle. I used to love stretching in the morning after waking up. I found that will bring on one in my calves.

 

[revisionDS]

@Barb1 yes, and sometimes I hate to move at all, because depending on how I move I get more, but I still have to move to stop them, yes those that turn your ankles like that, with the shins and the toe area all involved at the same time. I have actually let out a yell a few times. Let me know if you dr give you any info. this has been going on for so long, with no answers for me. (I also have ringing in my left ear, about the same time, not sure if it is related or not) thanks

 

[Sandy]

Oh man! I get these and they are the most maddening thing. I've been chasing down the cause for a few years now and so far I haven't come up with it yet. In my case it's definitely not dehydration, nor electrolytes. Various doctors have checked those repeatedly. It's not related to activity. My neurologist and my spine doctor thought it might be related to nerve compression in my lumbar spine but having decompression surgery didn't stop them, and if it was nerves in my spine there would be more consistency in their occurrence.

The closest guess *I* come to is a connection to my ferritin levels, which comes along with what @southernlady links to regarding restless leg syndrome. When my ferritin starts dropping I start getting subtle twitches in my legs. Nothing big. Just little twitches here and there. After these twitches have been going on for a couple of weeks I start getting those odd muscle cramps. Which, by the way, feel very different to me than the dehydration/electrolyte cramps. These twitches associated with anemia are not typical symptoms described in RLS articles but my hematologist has confirmed that they are connected.

All that said, I still don't really have an idea what causes these. Common causes have been ruled out, but no definite cause has been ruled in. The connection *I* am making between ferritin levels and these cramps is just my current working theory.

 

[ginger]

I find if my labs are on, then it's borderline dehydration on days when I do not drink as much. I still sleep with water next to me at night, drink usually at least 8 ounces at nightime throughout the night. If I sleep sound and no drinking, then I really get them bad.

 

[revisionDS]

@Sandy that sounds a little different than the ones I get, they are cramps, not twitches at all. My ferritin is nice an high as I get infusion, last month it was 200+, so I can rule that out.
@ginger intersting how you noticed on days with less water you get cramps....

well I guess this is still unknown

 

[Sandy]

@Sandy that sounds a little different than the ones I get, they are cramps, not twitches at all. My ferritin is nice an high as I get infusion, last month it was 200+, so I can rule that out.
@ginger intersting how you noticed on days with less water you get cramps....

well I guess this is still unknown

No, I get the cramps. It's just that I get twitches for a couple weeks before the cramping starts. The twitches seem to be sort of a precursor. Or maybe it's just coincidental.

There are a couple of things I've observed over the years that happen to DSers for which I have yet to see an identifiable cause. One is these cramps. People on the message boards always point to hydration and electrolytes as the problem but many of us have these cramps but don't have dehydration or electrolyte imbalances.

The other one is the red bruises that appear on our arms when we gently bump something or rub up against something. The message board response is usually that Vitamin K is the problem. In my case, and a few others I am aware of, there is no indication in lab work that Vit K is deficient.

I can't wait to learn how to correct both of these.

 

[revisionDS]

@Sandy oh I see, very interesting, so your twitches are of things to come. I guess I have never seen anyone post these cramps, so it is interesting that others have this? Not sure if it is DS related but I am 5 yrs PO and they started a little over 2 years ago. I am the only DSer for my PCP so of course he has no clue. NO dehydration or electrolyte issues. I don't have any red bruises, but very interesting.

I can't wait to learn also, the cramps sometimes are so incredibly painful, my kids have also noticed the timeframe.

 

[Sandy]

@Sandy oh I see, very interesting, so your twitches are of things to come. I guess I have never seen anyone post these cramps, so it is interesting that others have this? Not sure if it is DS related but I am 5 yrs PO and they started a little over 2 years ago. I am the only DSer for my PCP so of course he has no clue. NO dehydration or electrolyte issues. I don't have any red bruises, but very interesting.

I can't wait to learn also, the cramps sometimes are so incredibly painful, my kids have also noticed the timeframe.

Interesting about the time frame. I'm 8 years out and mine started around 4 years post-op. It would be interesting to see if anybody else can place a time frame.

 

[newanatomy]

I am 14 months out and have been having them for about 6 months.

 

[revisionDS]

very interesting, I think it is a micro deficiency of some sort, not sure if it will be discovered in my lifetime