Toe Nightmare

[MorelikeDonkey]

Hello all. I’ve been having constant toe cramping, twitching, and spasms for the past few months. Constant. My doctors keep trying to pawn me off. Labs were normal. Has anyone experienced anything like this? I’m taking Gabapentin and Magnesium.

[Mabsy]

Sorry to hear about the spasms. I get them too but they can be in any part of my body. I’m going to be interested by other’s replies, so, thanks for posting.

Stay safe, stay well.

Regards,

Mabsy

[gillianTS]

You could try magnesium crystals in warm water and soak your feet every day to see if this helps, I also take magnesium citrate 200mg every night before bed and this helps greatly with my cramping, especially in my toes and legs.

Another thing I have tried is voltoral gel/ibuprofen gel on my big toes and other joints.

Have you been checked for gout, this was the first thing my GP suspected but this is not the case.

[cyberbarn]

What sort of doctors have you seen? Have you seen a podiatrist?

[stiff19]

Hi I get flares of this , the toe cramps so painful with toe splaying outwards. Foot cramps too especially if kneeling down and I can get twitch’s or spasms anywhere on body. My toes also do not bend , none in right foot and only 3 slightly in other foot.Sorry you have this too and unfortunately I am undiagnosed with multiple other symptoms so unable to shed light but you are not alone 🙏

[Pamela1509debbie in reply to stiff19]

Hi, I have this too, does it come and go in yours or is it there all the time. Sometimes my toes are so painful in my right foot and I can't bend any of them at all then suddenly they'll move again a few days later and I can move them ok in my left even though it's uncomfortable. I thought I was actually imagining this until I read your post.

[stiff19 in reply to Pamela1509debbie]

No I have moments when it disappears not days though just moments 🤷‍♀️ You couldn’t imagine it my feet get swollen rigid Discoloured and stand out veins and painful 😖🤷‍♀️

[Coolenuf]

I had the same problem . My toes would be pulling straight up and I had no control of them . I had cramps so bad in my legs you could see the muscle work it’s way down my leg . Labs normal . I tried magnesium foam, pills , potassium , vitD. It always seemed to be worse towards bedtime . Once it was so bad my son and husband had to help carry me to the bathtub ( only the warm water would help it go away ) so I would be in there hours some nights . I went to a endocrinologist - showed her the video of my cramping - she said it sounded like I needed vit b . She saw my b levels looked good but she said if I had a absorption problem in the intestines or something it wouldn’t always show up in blood test. She told me to take 1,000 mg of B12 sublingual . It did not have to be expensive . Just the cheap kind at the pharmacy would do. There are liquid drops to put under your tounge . It worked so good that by day 4 of taking them they were 90% better . Doctors still say no that would have been from low magnesium. No it was not . I am sure it is the B12 sublingual . The vitamin just comes out in your urine if you take to much of it . The cramps came right back after 3 days of not taking them . I know this may not help everyone but for me it was a lifesaver . It’s worth a try !

[delli]

I have much the same experience, I get the cramps rotating in my hamstrings, claves and feet .. I now take vit B complex daily and I also take 8000iu of vit D3 in capsules form and it has more or less stopped the cramps. I also drink plenty of water. Like Coolenuf, I find when I stop taking them for a few days it does come back. More than worth a try, could be an easy fix!

[Zakana69]

I have....here we go...diagnoses of hEDS, fibromyalgia, chronic anaemia due to fibroids, Hypothyroidism due to complete thyroid removal, hypoparathyroidism, gout and osteoarthritis of both hands...doesn’t sound too bad if you say it fast! Anyway, I get fingers and toes cramping regularly, but less since I was prescribed calcium and vit d supplements, my toes splay out stiff when I am in bed at night and my fingers seem to lock when using them. I also take magnesium and vit b12 supplements as well as high dose iron. What I have found is that since being prescribed high dose iron tablets for anaemia, my restless legs have stopped and rarely return, only happens if I do not take my iron tablets. Hope this helps someone!

[marieflynn]

I have constant spasms. Have had for years. Great difficulty walking because of tremors in my legs. The cramp is aweful at times but magnesium does help. Do not have a diagnosis because of my age. However lots of symptoms of hE.D.S. although not the dislocations apart from fingers and jaw.