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

44 Comments

  1. Viviana

    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….

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  2. Mel

    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 :*

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  3. Anonymous

    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.

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  4. Anonymous

    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???

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  5. POTSgrrl

    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 http://www.potsgrrl.blogpot.comWishing you more \”good days\” than bad ones.-POTS Grrl

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  6. Anonymous

    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????

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  7. Bee EDS

    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

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  8. Hugo

    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.

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  9. Anonymous

    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

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  10. Arinai

    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…

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  11. Anonymous

    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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  12. Anonymous

    I suffer with this to, every night when I get into bed. The doctors here in the UK haven't been of much help. My problem was so bad and extremely painful I searched for a podiatrists, was surprised to find one in my local town! What a god send this man has been. He knew instantly what my problem is, It something to do with the muscles and at night when at rest the muscles and nreves do not know where they need to be!He said basically what the muscles are saying is ' You have hurt me through the day -now it's my turn to hurt you'. It somethig to do with the we walk, my feet rolled out a little. My treatment was: The pod. made a plastercast of my feet, these where then sent to a lab. where carbon fibre in soles where made to the exact shape of my feet. These slip into my shoes, and help to correct the feet, basically to make me walk correctly.These little beautys have given me enormous relief and peaceful nights!Hope this is of help.

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  13. Anonymous

    I have had all of the above, everything you speak about and still have. My heart stopped for too long so got taken to hospital yesterday. Was diagnosed with hypermobility syndrome in my 20s, and been trying to find out for years what's causing it. I went in for food poisoning and was given electrolite, came out 3 days later and all of my joints and pain – problems were not happening for that 1 day after. I have researched into my heart and think it's all, I mean my whole illness is to do with potassium and food – chemical balance- chemicals changing chemicals. Have you all had yours checked or found any connections, please email me on jellibabebeany@hotmail.com, I think I'm on the verge of working it out that could change everything for people. I'm finding some VERY important stuff out about how potassium works!!!!!!

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  14. Noelle

    If you're still looking for answers about possible supplements… Potassium is important, but it doesn't work alone, so to speak. Think of vitamins and minerals as a balance between multiple scales – too much/too little of one causes the other scales to move out of balance.So…Magnesium helps cells to retain potassium. Magnesium is needed for calcium absorption. (As does vitamin D and vitamin K2)When supplementing, I check my blood work and diet and assess what's getting low and try to change my food first. And if that turns up nothing, I Google the drugs I've been on longest and long term deficiencies – sometimes the pill that's really helping one issue is slowly exacerbating another!Anyone who's been sick for a while deserves an honorary degree in research. 😉

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  15. Lolita Davidovich

    My toes splay out just like yours, Danielle! Fortunately it doesn't happen all the time. When it does(sometimes wakes me up) I walk it out. Sometimes I massage the area of the foot next to the toes and this helps. I also push/ massage on the front part of my ankle because I notice that the tendon is very taught. The main thing is I notice it happens more often when I eat sugar. I have a sweet tooth and if I eat a candy bar, etc. I can almost always count on having an episode. You may already be doing this, but pay attention to what you are eating and if it happens more often when you eat a specific type of food, cut it out of your diet and see what happens. Best of luck to all!

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  16. Lolita Davidovich

    My toes look just like yours, Danielle. Fortunately it doesn't happen all the time. When it does, I walk it out. Sometimes I massage the area of the foot next to the toes and this helps. I also push/massage on the front part of my ankle because I notice that the tendon is very taught. The main thing I notice is it happens often when I eat refined sugar. I have a sweet tooth and if I eat a candy bar, etc. I can almost always count on having an episode. You may already be doing this, but pay attention to what you are eating and if it happens more often when you eat a specific type of food, cut it out of your diet and see what happens. Best of luck to all!

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  17. Anonymous

    This is going to sound crazy, but CHOCOLATE MILK!! I got spasms just like this, not just in my feet but all over my body. I mean I'd wake up in the middle of the night with my entire abdomen in a charlie horse, or my neck, or my thigh…anywhere really. Then a very athletic friend told me that chocolate milk is the new recovery drink of choice for athletes — better than gatoratde. Electrolytes, calcium, simple sugar…something about the combination. Anyway, I tried it after exercise and it has changed my life. My Dr. had told me to drink 8oz of tonic before bed, which I'd been doing but which didn't always work. Quinilone (derived from quinine, the base of tonic) used to be prescribed for nighttime leg cramps but was taken off the market. A glass of tonic is safe, whereas the pill form isn't. SO could try that as well, but I found it hard to drink drink a big glass of tonic every night. Anyway, you could try it, but I recommend chocolate milk. Give it a try — what do you have to lose? Hope you feel better.

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  18. Anonymous

    I was diagnosed at 33 after seeing many doctors with no answers, many complaints. but as I age its getting rougher. arthritis in the joints that sublux and many pelvis & low back (SI joint) complaints. I have the arch cramps that distort my toes. Thumbs painful and burn the tendons etc. Too much to list; I see a Chiropractor, Awesome massage therapist & rheumatologist. No one can help me. It is I who must be educated, know my body and its limits. I was an athlete for many years before I was aware of my condition and now I am taking care of those areas that are symptomatic from my youth. reach is your best tool and don't be afraid to ask questions and give information. My massage therapist is very good at releases in facia and connective tissue, I get cupping, hot rocks and bamboo sticks used, magnets, but haven't tried acupuncture though I might at some point, I now deal with hip dysplasia, offset knees & hips and my back seems to move in/out of place often and I can hear it crunch when I bend. So now Ill try some other supplements. Its never ending- Prov 27:17

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  19. Anonymous

    Hi: I'm a PD patient that suffer the cramps regularly. One of my trick is to stand on my walker and raise the leg and shakeout strongly to release the muscles then I step on to a golf ball with the affected foot and roll on the ball with it, like massages, Works for me.

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  20. Dee Luquette-Famularo

    The photos of your feet look exactly like mine when this happens! What works for me is to stand on the very front tip of my foot, leaning as far over the toes as possible, and holding the stretch until the pain and spasm pass. Sometimes it recurs, but after doing this each time, the pain and spasm are much milder. I can now tell when it is about to happen, and immediately do this maneuver, and it has even prevented it from becoming a full-blown spasm. Sometimes I get the spasms several days during a week, but then it might not happen again for months; weird!Regarding the chocolate milk – Anonymous might really be onto something; my nightly routine has included a glass of chocolate milk for about the past three years, and although it didn't originate as a remedy for the spasms, I cannot think of even one time I had them while sleeping, since beginning that regimen. (I use it to prevent my stomach from hurting from my night meds.)

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  21. Carolyn Arthurs

    These spasms happen to me and have for years. I used to never drink water. Now that's really all I drink regularly. I notice that if i go a day without drinking enough water, my spasms return. My tennis coach said these spasms can come from dehydration.

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  22. Anonymous

    Very odd. I have been experiencing a foot cramp that looks exactly like the last image. It has been going on for two months without a break and the doctors are very confused. I do not have eds but am very flexible with a significant scoliosis curve. Let me know if you get any answers. Keep blogging. Good luck!

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  23. mrs raymond

    I have had the toe thing on and off for the past 7 years but I feel it's getting worse. I read earlier in one of these posts that refined sugar may be the problem and I LOVE sweets. I'm truly going to try and cut way down drink more water and see what happens. We gotta start taking better care of ourselves as we get older.

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  24. dadittm

    This is a relatively new problem for me, over the last number of years, I've had the occasional toe curling you've shown in the picture as well as spaying of the toes. This lasts upwards of maybe 40 minutes at the most. Last night was a new one. I woke with a pain in my left ankle, to where the tendon was so taunt, it was pulling my ankle sideways. This lasted for a good 10 minutes. I'm only just exploring what this problem is, and what options are out there to counter the issue. I've been walking in my shower shoes recently when taking my dog for a walk because of the convenience, I've been on the road with appointments that have had me driving and traveling more than usual. Also, my diet has leaned towards take outs and deliveries as opposed to cooking my meals. I normally would have a more balanced diet and walk in my shoes, as well as taking multi-vitamins daily. I'm hoping that getting back to this routine will reduce these problems. Any feedback is appreciated.

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  25. Madhu

    Hi I have been suffering from severe cramps in my toes however taking a pinch or two of table salt gives instant relief please try this because this remedy cannot harm in any Way, however the cramps keep coming sometimes at work also in the middle of the night so I keep a salt cellar near my bed side. I hope this works for all of you.

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  26. Anonymous

    Hi I have been suffering from severe cramps in my toes however taking a pinch or two of table salt gives instant relief please try this because this remedy cannot harm in any Way, however the cramps keep coming sometimes at work also in the middle of the night so I keep a salt cellar near my bed side. I hope this works for all of you.

    Like

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