This sounds awful. And it sounds hopeless. I can only hope that I do not belong here, no offense. As much as I complain about my issues, they dont compare to some of yours. My feet are never red. They never get swollen. I don’t lose sleep because of my issues. When I first started symptoms In february of this year both I and the podiatrist chalked it up to my Mortons Neuroma (inflammed nerve between metatarsals). Pain came first in the form of numbness in bottom 3 toes and prickles throughout bottom. Then the soreness causing me to rock my feet to the outside. But this as only come about when standing or walking. For a time I iced 3-4 times a day and used a fan at night depending on how much time that day I was on my feet. Now I no longer ice and no need for the fan yet standing for 2 minutes sucks. Walking is ok and I’ve done a tiny amount of jogging with no bad results. Bare feet on cool grass is awesome. Shoes with socks on anything sucks. Just putting them on starts the prickles, taking them off and they stop.
Hands are another story. Didn’t notice them until 2 months ago when they just started getting warm and sweating for no good reason. But in hindsight I realized the hands began when the feet did but I simple chalked it up to the fact that I was using them more since my Mortons Neuroma kept me off my feet. Looking back I realized the warmth from my Ipad was quite annoying and grabbing onto the steering wheel became problematic.
Lastly, and I have not heard anyone mention this, but where I sit down (the buttocks) also becomes sore and prickly after sitting for a few minutes. So, can’t stand because of the prickles and cant sit because of the prickles. I need a job where I can do everything lying down! Not prostitution. Are these symptoms similar to yours now or at some point in this great adventure called EM?
It is impossible for me or anyone else here to tell you if you have EM or not. I am sorry I wish we could set your mind at ease. This is something that only your doctor will be able to confirm.
As Tizzy stated the sensitivity and pain with heat is a symptom of EM but this may also be a symptom of another condition I just don't know. It is strange to me that standing is bad but walking or even running is better. This doesn't mean it can't still be EM it is just that walking and especially running usually cause most with EM to get worse not better. The question of it also being on your buttocks doesn't help say yay or nay either as EM can happen just about anywhere on your body. Everyone's EM is so different that there is no hard and fast rule to what happens.
I hope it isn't EM. There are still other conditions you and your Doctor may discover. Unfortunately not all EM can be diagnosed by testing. Genetic EM can be found in test results and there are tests that can help diagnose small fiber neuropathy which doesn't mean EM but it is another cause of EM in some patients. I also want to set your mind at ease if you find out you do in fact have EM. It isn't severe in many patients. Some are completely disabled by it while some lead pretty normal lives with some adjustments. They continue to work and go places but maybe they need to bring a fan to cool themselves. There are even some where they only have symptoms periodically and only when very hot or doing a significant amount of exertion. These people you rarely hear from because they aren't here. They are off running around doing what they have always done. If you just go by the posts here it can look scary but most of the posts here are from those that are effected to a greater extent.
VEERLA...There are tests for EM? Please advise. Thanks!!!
Veerla said:
Dear Sky,
Thanks for sharing your story and don’t apologise for hoping it will not be EM. I too, sincerely hope you don’t have it. I don’t have swollen feet or even a lot of redness. I mostly feel burning stabbing pain in my feet and legs. In the beginning my hands and arms did hurt, but then the pain in my feet started to dominate (extremely) and I ‘forgot’ about my hands. Now, after 6 years my hands are getting worse. Again, no redness or swollen limbs. I have the SCN9A gene mutation, got it from my dad (who suspected something was wrong but never got diagnosed until I got sick). The Drs. Took a skin biopsy and counted the small fibres that were still present there. There is an average based on gender and age. I was well below the average and thus got the diagnosis small fibre neuropathy, and the blood works showed a SCN9A mutation which was diagnosed as EM.
So there are tests that can diagnose EM, how far in this process are you? I do hope it isn’t EM, and reading about Em is quite scary. The guessing whether you have it or not sounds like you have a full plate. The post you wrote does indicate that you don’t have a normal average health so it is good that you are going to the hospital. I do wish for you that you will keep hope and a positive attitude, which isn’t always that easy to do. And like Tizzy wrote, there is also life after EM diagnoses. It is an adaptation and will pressure your mental and physical well-being. But just know whatever this is, you are not alone and there are people here who are listening and know what you are experiencing. So feel free to post on the forum, to read and to contact people in private. I only discovered this forum about 6 months ago and it really helped me in so many perspectives. Feel free to contact me to ask whatever you want or to write about stuff you need to get off your chest. It is normal to feel a bit lost when you don’t have some sort of diagnoses, even after you do have a diagnoses you might feel lost. Keep pushing for answers and keep checking in here. Wish you the best in the upcoming weeks and months of uncertainty! Take care,
Veerla
Ps: no one with Em is alike and has the same symptoms or pain. I personally think that nobodies pain is worse than others. Everybody experiences pain in a different way, but nobody is less, or better or worse. Just try to remember that!
Hello, Sky. I'm one of those people Alina referred to, whose EM symptoms come and go so I'm not on this chat board often. So EM does indeed vary, and you may not see a truly "representative sample" in the comments here.
But I did want to chime in on the buttocks pain. That was one of the first symptoms I noticed, and I'm not sure whether it was the beginning of EM or the beginning of sensory-motor peripheral neuropathy. It's a really annoying symptom, especially for someone like you, or me, who has trouble standing a lot. So what can we DO? (I hadn't thought about the alternative career you mention....) Fortunately, that symptom also comes and goes, and I've had relief from sitting on a chilled pad called a Gel 'O Cool Mat.
How lovely to see you . How are you doing? Thanks for that Gel O cool mat tip .. I have wicked pain there. How long does it stay cool before you need to chill? Maybe two might be best. Getting impossible to sit at all.
I'm doing well, Mads, thanks for asking! My feet get bad sometimes, but not to the point of keeping me awake or making it impossible to walk. And the sitting pain has been very mild lately. The cool mat stays cool pretty long, but not for hours, so getting two isn't a bad idea. I just keep mine in the refrigerator. If you get one (or two), I hope it'll work for you.
mads said:
Dear LynnV,
How lovely to see you . How are you doing? Thanks for that Gel O cool mat tip .. I have wicked pain there. How long does it stay cool before you need to chill? Maybe two might be best. Getting impossible to sit at all.
I’m so glad you are having a better time of it lately Lynnv. I how this continues for you if not get even better. It was nice of you to come on and offer your help.
Take care