Who diagnosed you and what meds are actually working for you?

You do sound a bit on the extreme side (maybe just a wee bit. LOL). Are you taking any drugs that help?
I have noticed most of my cramping doesn’t happen until I put my feet up at night. I don’t understand the correlation but it is mainly at night when I put my feet up. I still think it has something to do with the suppliments or an imbalance of chemicals. I read that can be one thing that causes the cramping in feet (an imbalance of electrolytes). I think mine has something to do with the magnesium and/or the COQ-10 I take, so I’ve cut way back on them trying to figure it out OR at least they make the cramps worse. Muscle relaxers help with the cramps but then all I want to do is sleep.
Lately I’ve been struggling at night because even though I’m keeping my bedroom cold (around 60 degrees) to keep my feet cold,any part of my feet touching the bed still get too hot and hurt. So I have a cooling pillow I put under my calves and my feet hang over, (with a fan blowing on them of course) and that makes a difference but it can get uncomfortable sleeping on my back all night because I also have Anylosing Spondylitis.
I really want to come back in my next life with no diseases or conditions.

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Frankly, it seems like everyone’s EM is a little different. Cross you and jswilcox2, rearrange a little, and you’ve got me.

But you can get disability for EM. Only if you can afford a disability attourney, get one. If not, be sure to work with a local non-profits like ADRC. Because I got oodles of help from local non-profits, I just received the letter that I meet the medical qualifications for disability. Waiting on the non-medical judgement, but my calculation suggests that I more than qualify for SSDI (not for SSI, though). So, yay me!

Also, this website has good application advice: http://www.disabilitysecrets.com/topics/social-security-disability

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Isn’t it a common effect that the EM symptoms get suddenly way worse when we first lie down in bed? I spend most of the day in a lift chair with my feet waving in the air. I vary the angle so I may be more or less reclined with my feet more or less elevated. Yet, even if my feet are calm and cool, as soon as I lie down they flare. Which is why I sleep with an ice pack at my feet.

Gabapentin saved my life as it greatly reduces connective tissue pain as well as temperting foot heat/prickles. I take 600 mg just before bed.

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Hi jswilcox

I’ve been playing around with vitamin supplements only, right now
Dropping vitamins all day long til bed time

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I know the the fish oil supplements has worked for the cramps , I think?! Still trying it out

Also for the electric shocks /pins needles pain …drinking organic pulp orange juice has worked a lot
in a matter of 15min it disappears
Small glasses

I’ve tried the lyrica, gab, cymbalta, mexetine etc. etc etc none did anything for me …lol totally my luck :astonished:

And the hydrocodene wasn’t doing anything either for pain

I had some luck with the burning heating up with Tylenol, but I was taking too much in one day (3,000mg) and that freaked me out

Hi elenawi

Yes my cramps come on a lot at night and when I lay down in a bed in the ball of the foot and toes

There’s actually less pain standing up, but I can’t stand up all day long …

Also , i completely can’t lay down in any bed anymore
I actually had to make a little box thing to elevate my feet and legs to even get to sleep at night, sleeping with my legs elevated all night long, lessens the pain

I can’t even roll over on my side and curl up anymore , now that causes pain too

Crazyness

Thanks for that disability info ! Very helpful

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I’ve slept on a hospital bed for the last 7 years (with a lift bar to keep sheets, blankets off my feet and lower legs). Being able to raise my legs or back during the night helps aliviate preassure points.

But I feel so lucky to be one of those that gabapentin works for. Two years ago, I had so much nerve pain in feet plus fiery inflamation in every joint, that like you, I could only sleep flat on my back, feet elevated on a towel role so my heels didn’t touch anything. But you can’t sleep in one position for more than a few hours.

Before that I slept “half back” - proping one side of my back to lift it slightly so my weight was more towards the other side - shifting back and forth as need be. But eventually my foot pain escalated to where I could only do the one position. Then I started on gabapentin. It brought my joint pain way down and quieted my feet a lot. Now I can sleep paritally on one side then shift to partially on the other side. Of course, I have to wake fully up to shift to the other side plus move all my props.

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I fuond tylenol pretty effective, too - but at high doses that seemed dangerous to do every day. I also take Hydroxychloroquine, but that’s for inflamation not EM per se. And it can cause vision problems in an older individual like me. But it takes out most of the joint pain that gab left behind.

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Hi elenawi again

Wow yes I’m Verrry similar to your symptoms. Interesting to me!

May I ask you, I read on your profile you been dealing with this for awhile?

When did the EM become serious for you?
I see you have done some traveling with the EM ?

Do you have any physical therapy that comes to your home?
I had a PT come but it’s too painful to walk for the Therapist somedays

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Well anyways thanks once again for any information

They also asked me the other day if I wanted a hospital bed … hey it might be more comfortable :+1::blush:

Do you have a speech-to-text function on your phone or computer? That way you don’t have to touch as many things.

To answer your question, I was officially diagnosed by an excellent podiatrist named Dr. Kelly Stagg in northern Utah. This is after asking every doctor and specialist I came across for 7 or 8 years if they had heard of EM. It was the only thing that fit my awful symptoms. No one had heard of it and one of them was frankly a big jerk about it and acted like I was a total moron to think I could possibly have a rare disease. I never thought to go to a podiatrist because I was so sick overall. But when I did, I had an answer at last. And then my GP, Dr. Grace O’Brien, learned all about it and was able to diagnose a few of her other patients.

I have just bought and recieved my 23 and me test on Amazon prime day. It was half off, so $100 instead of $200.

I had a pharmacogenetic test a few years ago which tested for genetic polymorphisms in areas that make enzymes that break down medications. But it doesn’t test for other genetic problems or EM. I got in during a time period where they were not charging very much for that test so they could get more business.

My results make a lot of sense. Among others, my CYP2D6 gene is messed up, and that one little SNP (called a snip, or spot on the genetic code) is supposed to create enzymes for 25% of all medications. And I do mean ALL medications. So I don’t make nearly enough enzymes and I react to things with prejudice. And if I take opiate painkillers it is really compounded, as though I took a huge dose or something stronger. And other meds react that way too. I have a lot of dystonic reactions. One nearly killed me. But they are all scary and painful.

My sister reacts to meds like I do, but she does not have EM. I don’t think my EM is primary but you never know.

Surprisingly, I have had a lot of dramatic systemic relief lately from a low oxalate diet, which can cause burning feet. It hasn’t cured my EM but the rest of me is doing a whole lot better. It might be giving my EM some relief, but I am not sure yet. I will start a new thread abput it if this keeps going. (Btw, if anyone tries that diet - PLEASE start very gradually. The doctor neglected to mention that when he put me on it and uggghhh.) For now, it is still early. But amazing.

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Please, please go see Dr Robert Simon in Kalamazoo MI. I live in California but he has been my treating physician for 5 years. He is very familiar with EM and is the most empathetic, smartest, kindest doctor you will ever meet!!! Please see him. Tell him Robyn Davini sent you because he is so familiar with my case. He was able to get me into Mayo Clinic in 6 weeks for Dr Davis (em specialist) where the average wait time for patients is 10 months.
Let me know what happens!!!

Well I wish I would have had this info sooner but the Neurologist I’m going to see is a specialist in EM as well at Univ. of Indiana (and he is even in Network for my insurance which is not the case for most of my doctors). Although Kalamazoo is much closer than Indianapolis. Now that my appointment is only a few weeks away though, I definitely want to follow through with this Neurologist. However, if for some reason I get no where with him, I will definitely look up Dr. Simon.

Try a dermatologist. They are taught about Em in school. Bring photos of a flare.

That’s what my mom does… Biofreeze, elevation and cool water… No other medication has helped yet

it was actually a pain clinic doctor who diagnosed me…what works for me though not perfect is Aspirin and Lamotrogene…lamotrogene is an anti seizure medication and its an “off label use” to treat EM. The aspirin really helps though as well. I had some medical tests the other day and had to stop the aspirin for 2 days and I am still getting back on track with it 2 days later. Aspirin is an anti inflammatory and a blood thinner so it seems to help on both counts.

Although no medications helped me, a low oxalate diet has actually helped me dramatically. It involves avoiding foods that are high in Oxalates. But if you try it, start very gradually. The yahoo group called “Try Low Oxalates” has great information.

I can stand and walk and wear shoes for hours now. My feet can even feel cold now. There isn’t a blowtorch to my feet every night. It went from horrible burn pain to a mild first degree burn, or even no burn. And I have energy like I had forgotten existed.

It’s a difficult transition, I am still adjusting. Swinging back and forth between amazing and sick, trying to detox slowly from this stuff in fruits, vegetables, and nuts that I didn’t even know existed.

It’s not a pill, but ultimately so much better than any pill I ever tried. I don’t know if this diet would help anyone else, but I wonder how many others are burning alive day after day and can hardly move because they eat spinach and almonds?

Good luck, may everyone find something that helps them. A little or a lot.

Very interesting, I get really bad kidney stones. I get two different types one from uric acid and the other from calcium oxalate. I used to have the list of what to avoid and I followed it for a few years and took allopurinol for the uric acid. I have stones in my kidneys all the time and have had 16 surgeries for my stones. But I have so much scar tissue on my ureters that I don’t have as bad of pain when I pass a stone. But if avoiding calcium oxalate helps EM then I should get back to that diet. I am on coumadin because I have had quite a few episodes of DVT and PE’s so I don’t eat much dark green veggies because of vitamin k messes with my coumadin and screws up my INR.

What side effects (if any) have you had with the Mexiletine?

The only side effect I’ve had is heartburn when taking the pill on an empty (or near empty) stomach. Thus, I take it with a meal. Basically, I must “bury” the pill; begin a meal, take the pill halfway, then finish the meal. I also take it with milk for added protection.