Be sure to check out the negetives to Prednasone on the internet before you take it. I took 80 mg for 7 weeks. Then took 10 weeks to ween myself off of it. But there is a chance it really will help. There is a chance your EM will go into remission with prednasone. And for the chance, I thought it was worth it to me.
Okay, I'm not sure how I feel about that, but I guess I will weigh out the pros and cons. @NiceGuyDanny, my feet have been aching all day. They hurt some when I'm not standing, but when I do stand, I feel like I have bruises on the bottom of my feet. Like a deep ache. It sucks, and I don't know if it's related either but very troublesome when I'm trying to walk to class!
Yeah I can imagine. The only thing I can suggest is foot stretches. Look them up online or ask a podiatrist. I don't know if you do this already but I'd ask your teachers if its okay to put your feet up during class.
I usually sit in the front row if not I have my feet stuck in the book holder of the desk in front of me. Sorry if you don’t know what I’m talking about. I’m not sure what the metal compartment underneath the desk is called. It helps some because my feet aren’t directly on the floor. Also, I find that if I sit with my feet on the floor my whole leg feels like it is in a major cramp when I stand up. This pain is usually very extreme and is in my calves mainly. Not sure what that is
@hlhlain94 I too had the same pain when I first came down with EM. The pain was always there, but so bad when walking or standing that it would exhaust me. The most comfortable position was sitting lengthwise on the couch with my feet propped on and hanging off of pillows, so that no pressure at all was on my feet. It got better very slowly as I stayed off of them as much as possible, began taking two baby aspirins twice a dy, and stopped wearing shoes (except for Croc sandals, which have very soft soles). Now, the pain comes and goes as flares instead of being constant, and they burn more than ache. The burning turns them red, makes them hot, and has even caused them to blister.
hlhlain94 said:
Okay, I’m not sure how I feel about that, but I guess I will weigh out the pros and cons. @NiceGuyDanny, my feet have been aching all day. They hurt some when I’m not standing, but when I do stand, I feel like I have bruises on the bottom of my feet. Like a deep ache. It sucks, and I don’t know if it’s related either but very troublesome when I’m trying to walk to class!
Yeah, if I'm not in class or walking to class, I sit with my legs propped up on my bed. Usually on a big pillow. Do any of you suffer from numbness? My legs and arms go numb so quickly and very often.
I'm sorry you are having to wait so long to see the doctor. I understand why you'd want to find some relief sooner than that!
I had to keep a log to figure out my food triggers and, by doing that, discovered several. Sometimes a food just makes me more susceptible to a bad spell hours later if I get hot or I'm on my feet much. Other foods cause an almost immediate reaction.
I'm also one of those people whose blood pressure tends toward low, and blood pools in my feet if I stand for long, so I do better when I increase salt intake. The blood pooling doesn't always trigger my EM, but does feel very uncomfortable and can make me feel icky all over (orthostatic intolerance), but of course the worst is when it does all that AND triggers the EM.
Magnesium supplements also help my EM a great deal. I've been taking it for my EM for many years and when I twice, accidentally, was taking a lower dosage the EM became horribly bad again until I realized the mistake. I need at least 400 mg/day, divided into 2 doses and I take calcium with D3 too so that the balance of those with Mg doesn't get out of whack. You can check with your GP to make sure it's safe for you to take the dosage that you plan to try. You would probably want to start with a low dose and wait a week to increase it. If you get diahrrea you need to back down the dose a bit. I avoid the supplements that are all Mg Oxide because they always cause me diahrrea but I'm fine with the other forms, like Citrate.
Good luck to you with finding some releif. Persistance will help you in the end.
Thank you for the advice. I wonder if my blood pressure is low. Do you get shakey when you stand too long? My bbody starts to shake all over if I have been standing like 20 minutes.
I also was taken Calcium blocker for my BP and learned last year from the Mayo clinic that a person with EM should not be on any Calcium blockers.
hlhlain94 said:
Thanks everyone! I think I'm lucky. I have some nights where my feet burn but I suffer throughout the day. My mom just mentioned the bananas as well so I'll be trying that. My main problem is walking and standing in a shower because my feet really feel on fire and the skin really itches and tingles but if I elevate them it will disappear after some time. I have Raynauds too so a fan usually causes pain too. I have been on calcium blockers but they dropped my blood pressure. another problem has just come up. Does anyone else have achey feet all day? My feet hurt today, like a deep hurt. I'm not sure why or if it is related.
Yes! I do get shaky if I stand too long.Mine is diagnosed as Orthostatic Intolerance, but some with EM have POTS and it's all Dysautonomia. Mayo Clinic says there is Dysautonomia with EM, so it's probably all related for me.There are other associated disorders in my case too. I do better if I pace or stroll but standing in line is a real problem since I have to stand still then and the blood pools in the feet.
hlhlain94 said:
Thank you for the advice. I wonder if my blood pressure is low. Do you get shakey when you stand too long? My bbody starts to shake all over if I have been standing like 20 minutes.
My POTS makes it very difficult for me to stand. If I have to stand in line, I rock side to side, and probably look like I have to go to the bathroom. It’s very uncomfortable, my feet and legs hurt, I get lightheaded, and my vision goes tunnel. My heart races so fast that I get out of breath trying to carry on a conversation. It’s exhausting.
I’m sure everyone thinks I have to go to the bathroom too! I try to make my weight equally distributed when standing but after several minutes I can’t I’m aching too bad. If I’m standing, I have to move! I never thought the shaking was weird, but my legs shake so fast sometimes almost like a seizure.
@Hlhlain94 The gold standard for diagnosing POTS is a tilt table test, but sometimes it’s severe enough to diagnose simply by laying flat for ten minutes, checking your heart rate, then standing perfectly still for ten minutes and checking your heart rate again. (This is harder then it sounds and I can only stand still for 5 minutes.) A heart rate increase upon standing of 30 BPM or more, or a standing HR of 120 or more, is the diagnostic criteria for POTS. My neurologist asked me to periodically test my HR this way to track how well the meds are helping. For me, my HR increase fluctuates. It jumps about 60 BPM if I do the test 1st thing in the morning, and I no longer test then because I pass out.
I'm worse when I first get out of bed in the morning too. I think that's the one time of day that I have tachycardia, but it doesn't last long. Feels like my heart races for just a couple minutes.
do any of you have an occupational therapist?
I don’t have one.
I did have… Not much use 
I've thought about seeing one due to there being so many issues with my feet these days, and larger joints, so that it's hard to do some things. But I don't think OT (or PT) would help the EM itself. Birkenstocks do help my problem with standing. The support they give prevents some collapse of the arch that causes some of my burning sensations, although that problem just triggers my EM rather than being the cause. Accupunture can help some with EM, and really helped my hands a lot with the first treatment. It was electroaccupuncture.
But most important for me is the Magnesium, Zantac twice per day, Zyrtec twice per day, generic gastrocrom (Rx) before meals and to avoid trigger foods (I have many). I have a tiny battery powered folding fan that, is extremely quiet, that I carry in a tote bag for conferences and meetings. Not sure I'd mentioned that. I ordered it online.
Regarding the earlier comment about Calcium Channel blockers, the truth is that they are bad for some with EM and they help others with EM. I supposed it depends on whether it's secondary EM and what the underlying disorder is.
You may want to look up Dr. Jay Cohen's medication sense newsletters online. One is about treating EM naturally.
diet is very important with EM! Keep a log of what you eat and how you feel after! I think everyone might be a little different but I stay away from a lot of protein and carbs because they raise my body temperature. Other things that make me sweat and raise my temperature are vinegar, salt, and spicey food. I've found if I keep my overall body temperature low, not just my hands and feet, I feel a lot better.
Kentuckian - I tried triple mag supplements and they either didn't help or made it worse(hard to tell these days). I think I'll try potassium supplements next.