Any ideas?
xo
dani
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Thursday, December 2, 2010
Left Foot, Right Foot, Feet Feet Feet!
Does anyone get foot twitching and spasms?
For years I have been getting these awful foot spasms that are completely disabling, and I have no idea what to do about them. Sometimes they occur in my arch, sometimes in my toes, and sometimes both; everything balls up all at once and the worst stabbing and shooting pain immediately deadens me wherever I am. I have even sat down in the store and started crying they hurt so bad. The weird thing, the spasms are so intense that my foot becomes entirely contorted, my toes splay out in all directions and hyperextend backward, and the pain and spasms can last around an hour, if not on and off all day. If I immediately wrap my foot in a heating pad and take a pain killer, it makes it easier to get through, but sometimes that doesn't even help.
The leg and foot cramping I get from Restless Leg Syndrome is not the same thing. It doesn't feel the same and this doesn't happen just during the last part of the day like the RLS does.
I have read about deficiencies that can cause spasms and "charlie horses," but I take supplements for calcium, vitamin D and magnesium. My potassium levels range between normal and just a little low, so I continue to eat bananas and drink coconut water. I am not sure if these spasms are caused from EDS or a deficiency, but the doctors don't have any suggestions.
Any ideas?
xo
dani
Any ideas?
xo
dani
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14 comments:
I get them, too, but I can massage them out. I think that our feet work too hard!
Well potassium causes that but im sure your potassium is ok. I do get them on my arch but it goes away pretty fast. Another friend of mine gets it in the hands and he was told that it was Raynauds but I dont think so either. The doctor just doesnt know. I think the whole EDS brings the worst secondary problems and I just have learned to deal with them because doctor never now :/ I hope you feel better....
I have also spasms in my toes and it is horrible. Sometimes it helps when I put my feet in very warm water, anyway it helps for little time.
Viv- low potassium or high potassium? Is it possible to over-do it?
Danielle, have you tried a muscle relaxer(if you have any prescribed)?
Does this only happen when you're walking? Has your Dr. given you compression stockings(for POTS)? The ones he gave me at first I couldn't put on and was too afraid they were going to put something out of alignment(I've had stress fractures in the small bones in my feet), but they made me some custom compression "garments"(these ones were more like hose 'cause the "stockings" wouldn't stay up), with the aid of the silver ring splints I can get these on. They seem to help with creeping leg spasms that would happen as the blood pooled down to my feet. I can walk around for a bit longer when I wear them without as much pain and they take longer before they swell up.
It kinda reminds me of the spasms I had in my hand that first landed me basically disabled at work because typing was part of my job. They gave me edema gloves back then that seemed to help the pain back then. I tried to put those on recently and with a dislocated/subluxed whatever you call it joint in the middle knuckle of the index finger, it hurt like heck.
It's so hard when a doctor isn't available when these things happen, and the emergency room just looks at you like why are you here again? They say warmth relaxes muscles but warmth on my legs or feet just makes them swell up with POTS. Massaging my feet makes my hands hurt.. All I can say is show the Dr. these pics next time you visit and hope their guess is as good as...
Take care :*
Danielle, your photo and description describes EXACTLY what happens to my feet, my mom's feet and my brother's feet. No doctor has yet been able to explain the why they cramp and get stuck or what to do when it happens.
We all just push the toes back physically with our hands, and then they wander out again and you push them back in place through teary eyes and the burning toe/foot pain. It's so freaky when it happens, and your mind can't move your toes back. It really shocks any non EDS bystanders.
Sometimes, I stand up and force them back down to the floor - I heard that was good for charley horses in the calves - I just keep at it until they are back in. Usually for me, it's when I'm resting on the couch, but the painful wandering toes have happened to me while walking and wearing shoes too.
If you ever find out the why and what to do when it happens, let us know. It's just so good to know we're not the only ones this (or the other EDS problems)happens to.
My family doesn't fall neatly into one category (never had any DNA test done to properly type us) but for now they are leaning back towards hypermobility type. But my brother, whose EDS has really affected his health with dislocations, has also had the collapsed lung, and a surging / racing heartbeat going to around 200bpm from rest, without warning, which was finally diagnosed as Wolff Parkinson White (WPW) Syndrome in addition to his EDS. There's a tell-tale delta wave that appeared on his EKG that was just accidentally noticed after years of being under the care of a top-notch cardiologist and despite ER visits when the heartbeat surged. His blood pressure, like ours, is usually quite low.
Sorry for going off-topic, I could type for pages, swapping symptoms. I just wanted to say thank you so much for being the first non-family member I've encountered who has the weird foot cramp hell too. I'm new to your blog and your story and writing are both very fascinating.
MAN! How amazing it is to find you!My pain is so debilitating,I find it rare to have the stamina to figure out computer things.forgive my incompetence.Yes, YES!!Yes!?!!I have experienced everything you are asking about.Pray that I receive that diagnosis soon...Please.I have the club foot part of eds,when my arches fell in my 30's,I thought it would improve severe pain.Alas,no so what do you know.? My condition continues to deteriorate.Do other people grow torrii or tumors of unknown substance???
I get random stabbing pains in the soles of my feet too, and regardless of what I'm doing when it happens, I just drop to the floor and curl up in a ball grabbing my feet. It feels like a bolt of electricity. I haven't even bothered telling my doctors about it because it's only 1 of 1000 weird symptoms, and certainly not the worst one. The foot pain can be vitamin deficiencies as you noted, but I think mine has something to do with my autonomic neuropathy. Also could be something irritating the nerves between your brain and foot - bad joint in your back, hip, knee, ankle, inflammation, etc. - so there's lots of things that could be causing it. I hope you find relief.
I'm a fellow blogspot POTSie - check out my blog www.potsgrrl.blogpot.com
Wishing you more "good days" than bad ones.
-POTS Grrl
Hi, I have just been diagnosed Ehlers-Danlos Hyper-mobility type, also have Lupus. I get the curling over toes and extremely painful leg cramps, have found Magnesium supplement and staying really well hydrated helps. Do you have trouble controlling your body temp? Mine goes up at night and when ever I exert myself. Found out that I have Impaired Left Ventricular Relaxation and hypertension during exercise stress test with echocardiography. Any experience with this????
Hi, I just put the last note in, I just read through things more carefully, I have one aunt who had Wolff Parkinson White treated by laser and another aunt (Same side of family) who was also treated by laser ablation for accessory pathway in the heart, she also has dislocations and a daughter who has hypermobile hands, slow heart rate at times and temp regulation control issues. This stuff is so much to take in, I'v been trying in earnest to get this diagnosed for past 26 years and have had symptoms from infancy. Sooooo tired of being in pain and feeling really crappy. Hope there is light and hope for more effective treatment???? B
Hi! I've been reading your blog for a while. I'm 37 years old and just realized recently that I've got some hypermobility, along with vascular problems. My son has hypermobility, RLS and reflux at night. My wife has amazing hypermobility, along with back pain, foot pain, headache and all the gastric problems you can imagine. Anyway. We'll try to have a diagnosis soon.
For your muscle spasms, you can try everything people have posted here. You can also try sublingual B12 vitamin, which can help correct any deficit in stored iron (ferritin) associated with muscle spasms. Other than that, well, when I get that one, I microwave a hot/cold cushion and apply it... the spasm goes away after a minute or so. Sometimes it comes back though.
I get bad Charlie Horses in my feet and legs (probably not EDS) My Dr. gave me quinnine and it really helped. Two ways. You can get a prescription or you can drink "tonic" water (mixed with juice because it tastes nasty.) Tonic water has quinnine. It is what the Englishmen drank in India with gin to ward off malaria. Anyway, it does wonders for spasms if used regularly. Nedra
Mine are caused by a herniated disc at the L5 and sacrum. will be getting surgery
Ooh, yes I get really bad stabbing spasms in my arches sometimes. They hurt like the dickens. Unfortunately this makes walking around and up and down stairs at school a pain in the rear end. I always thought I had just pulled a ligament or tendon in my foot, but I could never figure out how since I am only ever walking when it happens. EDS does weird things...
Those pictures are identical to what happens to me..my toes have even broken! I have to knock myself out with Valium A's the pain is unbearable..I've been told it is caused by neuropathy which I have..does anyone else have neuropathy?Dianne
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