After years of research, I knew what I had, but like so many others, it feels good to be validated. The sad thing is knowing this will never get better. It’s been 6years since I got sick with something and developed many unusual symptoms. I have been through several types of meds but finally settled on Lyrica and a compound cream. I still suffer with pain all day every day. But I still work full time. How many people are still working after diagnosis?
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Yes it’s good to know what it is. Don’t give up hope of there being a cure one day. Think back years ago there wasn’t a cure for things that there is now.
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My concern it the ability to keep working. I’m not old enough to retire and the pain is very limiting. Also, the medications have a tendency to make me question decisions I make at work.
I just wonder how many people still work after diagnosis and if erythromelalgia is a progressive problem when it is acquired as mine is.
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Hi Farmgirl,
I was diagnosed in June of 2014 but my feet have been burning since July 2013. I still work full time and I actually find that I like working because I can distract myself from the pain because my mind has to be on other issues and I have people around me. I hate my weekends because after I do chores- laundry and shopping all that I can do is to sit in my house with the fan on my feet and watch TV or play games on the iPad or try to read. The days are endless and lonely. I don’t give up though and we never know if something will happen to make the EM stop. I had an eating disorder that went out of control for three times in my life but my doctor is convinced that this last time - from 2008- 2013 destroyed the nerves in my feet ( my feet were blue first) and that’s what caused my EM. I didn’t know it was EM at first. Everyone thought that I would be fine if I was able to restore my weight and health and I worked hard to do it but I have to admit I was angry when I learned that the pain was EM and not just from being run down even though my doc is convinced that the ED caused the EM by damaging the nerves.
I have tried gabapentin and nortriptyline and effexor and tramadol and the amitriptyline/ketamine compound cream developed by the Mayo but nothing has helped. I am about to try medical marajuana because my doc wants me to - not the kind you smoke but a tincture. They use it in NY to control epilepsy and Parkinson’s disease and for neuropathy. But I still believe in miracles. I have more faith in that than in medicine these days.
I hope that this helps you in some way. So yes I still work and I think it is good for me despite the pain because I still feel like I belong and I am doing what I used to before the EM so in that way I am still the same person.
Jordy
Thanks for your response. The good days at work are awesome and I can sometimes pretend there’s nothing wrong with me, but the bad days make me think seriously about retirement. I am fairly sure I can hang in here for awhile and I know there are many on this site that are severely limited so I am very thankful I can still work. I just wondered about the prognosis. Does this get worse and should I begin preparing for a time when I won’t be able to work?
I am glad you’re able to work and that it provides help for you in your journey with this odd painful diagnosis.
Hi Farmgirl,
It doesn’t always get worse. Much depends on whether they find the cause and if they do treat that. I went for years being told it was neuropathic pain, despite having tests and them showing very little damage. In the end they found out I had rheumatoid vasculitis. I am now on treatment for that and my EM, whilst not completely gone, is much better than it was.
There’s no know cause for me just yet. Still looking though…
And can I just say Hallelujah for fall temperatures. I’m not much on the winter cold because I can’t seem to warm myself very well but I’m liking this fall stuff!!!
I have never liked hot weather even when I was young, but now it’s even more important that it’s not too hot.
Oh Farmgirl, you break my heart. What doseage of Lyrica are you taking. I have primary EM which is in the dna and inherited. After much experimentation I’m now on Lyrica 150 mg 2X a day. I was terrified of it after reading the side effects. The only side effects I’ve had is it has cured 30 years of migraines. Hah! The bad side effect has been fog brain. It’s annoying but I’ll gladly take that over extreme pain. I’ve said in other posts, that the real turning point came after taking CBD oil. After taking it for about 6 weeks, I was aghast to realize I’m almost a normal person. I still get flares but I can get them under control. The burning has spread, which is normal, but the pain hasn’t been excruciating. I have been blessed that this horrendous disease didn’t present itself until after I retired. I absolutely am appalled that you are suffering all day and still have to work. I’m so sorry. When I just couldn’t stand the pain anymore, I got a lidocaine IV. ( infusion) They did cool me down some and I took Mexilitine to extend the effects of the lidocaine I initially took 150MG 2X a day but as it makes my fingers tremble, if I’m having lunch out, I just forgo the morning doseage.
If you can’t find an informed, progressive doctor, you can find out if you have primary Em thru a 23andme dna test. They don’t tell you about EM but the raw data is there and you can dig into it. SCN9A anomalies. Good luck.
It absolutely infuriates me the I’m in prescribed opioids but a plant that could ease my pain is illegal. 
I do Lyrica 150 3x day. And if the pain gets too bad I think I have an option to medically retire however I will bring home considerably more $ in my retirement if I can just work a few more years.
I tried the CBD but it had a sweetener in it that I couldn’t digest(it caused horrible stomach pain). I may try another kind.
I also take Tramadol for pain relief if it gets too bad in the evenings.
I’m hoping it will spontaneously disappear in the same way it appeared but I’m not holding my breath. 
I may check into the 23 and me (out of curiosity) but they did do the paraneoplastic panel just in case because I don’t have any reason for my SFN or EM.
Hi FarmGirl,
I hope you’re feeling cooler than the last time we corresponded. I was wondering if you’ve tried Mexilitine yet? I take 150mg 2X a day. There’s been some research on it you can Google. P
After reading the side effects, I think they may not have recommended it for me because of the side effects and some of my other medications.
Thanks for thinking of me though! I don’t think my EM hurts me nearly as bad as some but I have other pain that is much worse. The small fiber neuropathy I have is non length dependent and I also have a kind of cramp fasiculation syndrome that is very painful. I’m not sure how they’re all related but seeing as
how they all showed up around the same time, I can help but think that they are_emphasized text_
Farmgirl,
I have only been going threw this for the last 2 years like many I have seen many doctors and one always sends me to another and on and on. I haven’t got the EM diagnosis yet I’m still on my journey to find the one that will know of EM and be willing to help me. I have been on gabapentin for over 8 years now I take 1200mg 3 time a day for nerve pain in my arm and hand that was caused my blown disc from lifting a patient at work. I have since had cervical fusion 3 years ago and have wondered if this could be a factor with my EM. I still work but it’s very difficult at times 12 hour shifts in shoes and socks causes my feet to burn up and swell to the point I have to take them off multiple times during my shift. I also wonder how much worse this will become since the start it went from hands being the worse to now my face ears chest upper arms and feet. I feel for you I hope that the new meds your on give you some relief. I’m afraid like you that one day I may not even be able to work and I’m only 39 not even close to retirement so what happens then its stressful and frustrating. I’m interested in the dna thing so you just get on this site and pay to have it checked and no doctor needed pretty interested in that. well hope you stay cool for now its nice out but I live in Arizona so the summers are a nightmare I dnt even wanna walk outside it gets so hot.
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Love your positivity, I thrive on energy and you just gave me th ebiggest burst, thank you xx
After joining this group a few days ago, it’s so good to know I am not alone, we are all so similar in some way or another. I feel lucky I found my latest doctor who helped me as before that all the googling in the world didn’t bring me to this group.
I have worked the whole time, with soooooooo much time off, my boss (in my current job) has been amazing & I am very grateful for that. I’ve been going through this since 2010 and at that time my boss didn’t give a #hit. It was awful. I’m new to this group and thank you for sharing your storey, I was only diagnosed 4 weeks ago, it have been suffering 8 years. We are always the same person, we just need to adapt and we have each other in this space. X
So glad I helped you. That’s why we are here to help each other. Unfortunately I have another problem now which has meant I haven’t spent much time on here recently, but I will get through it.
Julia
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AshLou,
So glad you found this group as well, I to was very greatful to find others who could understand what Im going threw. Before being diagnosed I felt like I was going crazy and even though my family was trying to understand they still dnt get it like others with the same situation. Not only do we suffer physically but it also effects us mentally people who have never had a chronic illness will never understand how hard it can be and before this group I felt depressed and closed off and well I love to talk with others it helps to just know im not alone so im so glad you have joined and im here anytime you just wanna chat lol.
stay cool
E