I got the idea, but still, talk to your teachers and your classmates, they might be very understanding and could help make you more comfortable. I know for me, it's hard to concentrate when my feet and hands hurt a lot. I wish you luck in school, very inspiring for me as I passed on a chance to start college in october because I didn't think I could do the work with my feet and hands hurting so much. Whenever I'm feeling like I can't go another day this site really helps. hlhlain94 said:
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
I totally agree. Keep a log of foods that do cause a reaction, which could be immediate or several hours later. My log helped a lot since there didn't seem to be any rhyme or reason to what foods I reacted to by getting warm all over (making EM easily triggered by something else) or by immediately triggering the EM. Even some organic produce can set me off, not just spicy foods and additives. Besides alcohol and spicy foods, I'm most triggered by chocolate (especially cocoa butter, more than the cocoa powder), peanut and orange. Any onion at all in a food is likely to trigger me, even if the food doesn't taste "hot". But we're all different. When I dare to cheat and eat pizza (mushroom or cheese only), it's in the dead of winter on a cold day and at an early lunchtime, when I'm not as sensitive as evening. You can manipulate/plan best when you know your triggers.
An Occational Therapist can’t help with the pain but the can provide you with things to help you deal better with it for example-
The gave me a disabled shower, a shower chair and shower stool all fitted. Talks of a stair lift, they put railings outside my front steps as well.
Most OT's aren't trained in pain managemnent. Get a referal from your doctor for a pain clinic in your area or look into natural or herbal products or other therapies like acupuncture etc. OT's can do anything that will help you live your life independently. That can be anything from making sure you have the right equipment to get around and use the facilities in your home, your car, or at work. They can help you go fishing if you want and you can't use a normal rod and reel. Basically they help you "occupy" your time, from the day to day and beyond.
Do you know how many triple mag you were taking per day? If it was only 250 mg per day it probably wouldn't do anything at that low a dose. But if it made you worse at 250 mg you obviously did the right thing by stopping.
oh cool someone that is my age with em!!! welcome to the site, there is tons of good information here, i hope it helps you as much as it has helped me.
nice guy danny: be VERYYYYY careful with potassium supplementation, i do not know how that could possibly interact with sympathetic nervous system sodium channels, but it is a very dangerous supplement if you have too much. be VERY careful
it is so hard to go to college with em, i totally understand!! whenever i leave to get cold again, usually outside in a cold corner, everyone always is like "what in the world is he doing every twenty minutes". i also carry a icepack around, not a frozen one, but just a cold one to keep my freezing during class. I have to tell every other person all day long that "i have a nerve disorder" and they usually will leave me alone, its so annoying sometimes!! lol
i also had a occupational therapist like someone previously mentioned, and i can agree with lauren, they could not do much at all for my situation!! they can pay for gas and tuition for school though. besides that, they cannot help me out that much at all :(
As I live in Alabama also, could you tell me who it is you see that is familiar with this disease and I cannot find anyone as of yet that even knows what it is. I have experience the severe burning and pain in my feet since Mar 2010 and seen various doctors that cannot give me a clue as to what my problems is. One did tell me he believed it was the strangest thing he ever seen but believe it was nerve pain of some sort. One told me there was absolutely nothing wrong with my feet, i.e Tendons, ligaments, muscles, bones and stated it was most likely a neurological issue and used a pinched nerve, tumor, and MS as examples. One told me I need to continue dealing with my Spine and Pain Mngt doctor but didnt elaborate. I took that to mean he thought it was coming from my back, or maybe he was telling me the Pain Mngt doctor could relieve the pain. I am not sure as he did not elborate and many doctors leave so fast you don't have time to ask questions. The nuerologist had me do various things but no elaborate test and told me I did not have Neuropothy of the feet and was gone. So here I sit at almost two years with the worse burning sensation and pain in my feet with no idea what it is. Cymbalta and Methadone relieve the symptoms but I would really like to know what it is as pain is a symptom that something is wrong with your body....you can answer my question or give advise directly to me at ■■■■■■■■■■■■■■ as long as the group has no issue with it....Thank you....
I'm in college and I'm 20. I had my first flare up out of the blue over 4th of July week this past summer. It took a while but the meds that finally worked for me was a combination of Cymbalta and Lyrica. Mine's in my feet too and I have had the same symptoms as you pretty much, just not in my hands. Mine also have a deep hurting pain when standing or walking for too long which sucks because I was running every day up until July and it hurts too much now. I also did some acupuncture along with physical therapy and those seemed to help me a lot too. I hope you find relief soon! I know how hard it is.