12hr shift in socks and shoes feet burning


I could barely make 8 hours so went down to 5 hours…I am barely making it financially because of my feet. I think anyone who has this disease should be able to get disability. But I had a hard time getting a note from the doctor just to prevent me from being made to stand in one spot for extended periods at work. But 12 hours…ouch!

I recognize those feet. They look just like mine and the struggle is real. I am sorry you’re in pain. I also think there is a need for disability assistance, but I think this is rare enough that doctors don’t even fully understand it so there is little evidence to support a claim of disability.

I am so sorry. I feel your pain. I can barely get 10 minutes out of my feet anymore. My doctors have just recently put me off work indefinitely and I am receiving income protection. If ever you need to talk, I’m happy to listen. I had audiology testing yesterday and discovered my EM has now damaged my Vestibular Nerve. There isn’t a part of my body that doesn’t hurt.

I cant believe its so hard to get disability when people are suffering. I have secen people’s pics and posts on here that are even way worse off than me and yet they still can’t get any help it’s crazy to me. Ya I have worked 12 hr shifts 3 days a week for 14 years but this started over a year ago and has only gotten worse since it all began. I have to take my socks off threw the day to try to cool them down but then I have to get them right back on and it just starts again ugh…

I understand about the rare because doctors look at me like I’m crazy and I cant seem to find anyone that will listen. I am going to see my neurologist today and I will talk to him and show him all of my pictures so fingers crossed he has heard of EM and will really listen to me. I had an EMG Monday because of nerve pain so guess I will also see what that shows had one last year and it came back fine and yet I still had nerve pain so who knows.

So did your EM start all of a sudden and then gradually become worse? My onset seem to come on sudden and then has just been worse. I’m just curious to see how many of us out there started out and are now even worse or just staying the same. I can’t hardly handle what is going on now so getting worse is a terrible fear right now. Plus seem to be my hands the worse then started with my feet and not being able to stand socks and shoes to effecting my face ears chest upper arms now and some time thighs. I already have been on the highest does of Gabapentin I can get because I have been on it for 8 years due to a neck injury along with the last 2 years on nortriptaline and I have heard people say they have started those and some have helped but they are defiantly touching my flares.

Mine started about 5 years ago as tingling in my feet and shin splints. I was teaching ballet and discovered I could no longer jump without my lower legs cramping and burning. My balance became impaired and they thought I had MS. Once that was excluded and the neurologist started looking for other causes by September 2016 I was walking with crutches due to the pain in my feet and it had progressed to my hands, arms, lower back and right side of my face and ear. My diagnoses came in January this year (2017) since then I started having attacks of vertigo. I was put off work in August due to severe fatigue and after having a sleep study done discovered that my body is woken every 2 minutes from the pain. I had a spinal cord stimulator in September 2017 which has done nothing for my existing pain, but caused new pain in my thighs (which is on par with the pain in my feet). Cuurently I am on Sifrol for restless legs, iron tablets, B12, magnesium, oxycodone, palexia and topomax (which I was on previously for bipolar). I have tried Lyrica and Endep previously but Lyrica made me crazy and I didn’t get much benefit from Endep except a 30kg weightgain. So yes, mine started out of no where and continues to get progressively worse. If I go out for the day now, I have to use a wheelchair just so I can still enjoy myself. I’m saving to get a motorised wheelchair as my hands hurt too much with the manual wheelchair.
There has to be a point where our bodies will stop attacking themselves and causing me so much pain surely. How much can one person live with?!

Omg that’s so awful, I’m so sorry that it’s become so debilitating that sounds absolutely horrible. I feel bad for even complaining because compared to how bad your suffering Im not even comparable. So went to my neuro dr today got my EMG results he says they all were normal and that no pinched nerve in my shoulder or elbow or wrist. MRI did show I have a new bulging disk between c3 and c4 I already have 5,6, and 7 fused ugh. So I say hey do you think my nerve pain in the arm and hand could be caused by this disease EM I said have you heard of this he says yes but what can you do for it there is nothing. I was so upset like I showed him all of my pictures he says I dnt know that’s not my area you need a rheumatologist I said I saw him he said or vascular I said I saw him to I said no one will help me everyone just wants to send me to a different person I was pretty much in tears so I’m having nerve pain but nothing shows off makes no sense to me and the neuro guy says not his area it’s like whos area is it I have scene like 5 doctors in the last 6 months and no one says anything except the vascular says raynauds but when I told the neuro he looked at me like even that was crazy. Basically neuro says keep going to the pain clinic and see me in 3 months. I just want someone to hear me and help me figure it out idk seems like you just wanna give up on dr.

I recently switched from gabapentin to Lyrica. I can tell a difference but I don’t think mine has gotten worse. I buy good shoes and sit as often as possible. I also went into my doctors visit with medical articles and photos of my feet and hands. I wish you luck!

It does get very frustrating and don’t ever think that your pain isn’t as bad as anyone elses. The pain is real and you have to deal with it, so never stop fighting. All of my EM tests have come back normal. My genetic testing all came back normal, but that doesn’t make my pain any less real. I am lucky to have my GP (General Practitioner) who fights to get me answers. Here in Queensland, Australia there is limited resources for EM. I have to do a lot of the research myself, like it sounds you do to. I only see the neuro once a year and am about to go back to the pain specialist to see about getting an epidural blocker to see if that will help the pain.

Ya I had a pain block once for a headache I got after a spinal steroid epidural it last over 2 weeks straight and when I got the block it was amazing the pain was gone so I hope that this will give you some relief as well. Arizona is pretty big you would think that there would be more people out here that new about EM but when I try to look up dr that treat the disease I have not had much luck. Its so crazy to me that with all the pain the test still say normal it’s like well I dnt care what your test say I’m telling you how my body feels whether your test says normal or not it’s definitely not normal to be going threw this. I also have been reading online and on this group trying to research info on this I would just like for a dr to just say hey your not crazy it’s not in your head you to have EM and lets try to figure out how to control your flares. So your GP is the one who diagnosed your EM? I figured the neuro would be the one to understand and yet that was not the case for me today. I really hope the block helps give you some relief you will have to let me know how it goes.

Sorry I droped off the radar. We are having renovations done at home.

My Neuro diagnosed it, but my GP was the one that kept pushing for someone to take notice. I’m just sick of seeing doctors. My GP has got me trying Gabapentin now, hopefully this one works

Well renovations sound good and bad lol. I’m sure it will be great once you get past the mess that comes during the process we have done some to our house as well. Well I have been on Gabapentin for years for nerve pain caused from cervical spine problems. For it me it does not help with the flares but for you I hope that this will help you to find some relief. Hope all goes well with your house. I’m going to try to talk with my PCP Monday and go see this derm guy that another member here recommended hopefully he will beable to help

Idk how any of you can wear shoes & socks at all. Sandals or flip flops at best and they still come of the second I’m inside. Luckily I can run around barefoot at work 95% of the time.

That’s terrible sorry for all the pain your having to go threw. Did your EM start early age or later in life? Was it sudden and then became worse over time? Just trying to get a feel for what may lie ahead mine seemed to start almost sudden and then over the last year just get worse.

I’m so sorry to hear what you are going through. I only have EM in my toes and it already feels like my life is ending. I hope you find a good doctor that will at least helps you control the pain and symptoms. Hugs

Mommaof4nuts, I was just reading your post and sympathise with you for being send to all those drs without any result. My internist I saw said to me there is basically nothing that can be done or that can be taken to help for EM, I am already on the best meds there is to his knowledge. I suggest that I can see a Dermatologist and a Rheumatologist but he didn’t sound as if he thought it would be of any help. So I decide to stick to what I already take and take life day to day. Taking Lyrica 75mg 2 x per day, Magnesium, Alpha Lipoic acid twice a day, cardio aspirin 100mg once a day and Amitriptyline 10 mg once a day. I am taking it now for 7 months and am much better. Rarely any flares, feet much less sensitive and able to sleep with my feet under the covers for most of the night if not all night, I can take fairly long walks on the beach, barefoot or otherwise with flip-flops anywhere we go. Still not able to wear shoes, next step is to try that. I really feel for everyone who is send from dr to dr without any positive results. While reading through all the post seem most people prefer to fight the battle against or with EM on their own and trail and error from advice received from other people with the same problems.

Ya the struggle bus is real when it comes to finding a doc to listen that’s for sure. However i would maybe push to see a rheum doc only to make sure there is no autoimmune disease because sometimes with what i have read people could have an autoimmune disease and that to could contribute to the EM. I had this done almost 2 years ago and while everything then looked ok i have to get rechecked because autoimmune is in my family history and could start at anytime. I have learned so much just from joining this site and reading a lot of other peoples stories on the internet so i agree advice from other sufferers is better than most anything a doc can tell us lol. I may have to switch to Lyrica soon but were trying a few other things first. I have been on gabapentin for so long just dnt think it’s gonna do anything for my EM because so far it hasn’t, but i take it for nerve pain i have from my neck injury so they dnt wanna switch everything to fast and throw my system out of wack lol. I hope you continue to feel better, socks and shoes is a nightmare everyday i have to work but i have no choice but to struggle threw i would go barfoot everywhere if i could hahaha.

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