Hi Everyone
I would be very interested in people's stories regarding how they are coping with remaining employed while having EM, and those who have not been able to remain employed.
I am fortunate to have an undertsanding employer and have ceased travel and am working from home pretty much full time, however am a bit concerned about the medium- and long-term future.
Many thanks and best wishes to everyone.
Hi David,
My EM is widespread 24/7 so life let alone work is impossible. My employer was very understanding letting me work from home but im too disabled now- need carer to wash, cook etc..Feel like i pretty much lost my life - my career, my relationship, my friends, even my home (have to move as can not manage stairs anymore). I first fell ill in Oct 2012 with few symptoms- within 4 months i was disabled with it. Symptoms went through my body like wild fire - i had an acute onset/progression to now what is classed 'chronic'. I think this is a great discussion topic David. EM for most of us is progressive - we need to plan - think ahead for all eventualities. EM is disabling so dont forget to access disability sites for advice/support and read up on your 'disability rights' .
Again, i want to send hope to everyone. Nothing touched my EM- i tried every medication going. Had guinea pig trial of lignocaine(lidocaine) infusion which provoked slight response - things eased slightly for about a week.- miracle! I personally think sodium channel blockers might be the way to go - get an angle on this thing. My goal is to be well enough to at least do a few hours work here and there. Keeping ones mind active /work etc. is so damn vital to our wellbeing. EM really is a bummer guys.Ive found making demands on myself or feeling insignificant - useless too upsetting and so stressful. I am learning one day at a time to just let go let God.
God bless everyone
mads x
This subject is of great interest for me. My EM symptoms have progressively gone from annoying, to bad, to really bad and I honestly dread what is to come next.
I am an IT consultant and my business does as well as my health is doing. So if I have a good EM week (very rare anymore), then I am able to get out there and make money fine. If I have what has become a normal week (not good) then I struggle to do as much as I can to keep my clients happy but it's just not enough. Long story short, my business has shrunk the last several years because of EM preventing me from being able to help my clients. My clients have been exceptionally loyal, but how many times can they be expected to tolerate me having to cancel a meeting or leave early because i'm flaring up like a wicker man?
I tried the narcotic route that my doctors recommended and to put it bluntly, that SUCKED! I lost an entire summer of my life, i don't remember a thing about it. I have 5 kids and that just isn't cool. in total i spent 2 years taking morphine, norco, perco, etc... and sure, technically it helped with the pain.. but only because i was asleep most of the time. November of 2011 I decided that I was done with that little experiment and quit everything, spent 2 weeks curled up in the bathtub looking like a heroin addict getting clean. Talk about humbling/humiliating.
I now take aspirin and that's basically it, so there is no relief. I have two doctors at kaiser in roseville, ca and they are great supporters for me, they are willing to try anything we can come up with as a team to help and they contact me all the time checking in with me and talking about new research they stumbled across, etc. And I can honestly say that I love them, great people. BUT, i'm still in a lot of pain. I tried to explain it (for the millionth time) to my wife last night. It's like my hands, feet and face have acid poured on them, and that pain NEVER leaves, its with me when i wake up, its with me when i (try to) sleep. Then during a flare up, its like someone is taking needles made out of white hot lava and poking me all over my hands/feet/face and in a bad flare up arms, legs below the knee, side of the neck and a few spots on my shoulders. If that wasn't enough to drive a person to complete Poe-esque madness, the palms of my hands and the bottoms of my feet are extremely tender to any pressure at all. She is a great gal and understands as much as anyone who's never experienced it can possibly understand. So even tho I feel I have great doctors and I know I have a loving and amazing wife, at 2 am with half of ones body convinced its a 6 foot roman candle, it is impossible to not feel like I am in this alone. I'm so thrilled to have found this very active forum!
Work? Doing the things I WANT to do? What's THAT!? At this point in my journey down the lava road that is my life, my ability to work is so unpredictable and few and far between as to be nearly non-existent. i spend a vast majority of my day either in bed with my feet elevated or on a recliner with said traitorous feet elevated. Most of the time i have to also elevate my hands, typing is very painful, walking/standing is very painful, laying in bed is very painful, basically anything that involves me being awake is very painful.
To try to avoid the OMG WTF I'M GOING TO SCREAM kind of pain I use squirt bottles of water, never wear shoes, only sandles, take frequent cold bathes/showers, I absolutely have to have at least one fan blowing on me at all times, I also bought these things at costco called "cooling" towels, they work pretty decent to help keep me cool. That's about all i've learned so far and its far from enough. What i've noticed about myself is that even tho those things don't do nearly enough to aid in reducing the pain, they are actions that i can take to help me feel like i'm fighting this thing and that strengthens me a little bit emotionally. I also meditate, I pray (A LOT!!!), I am very lucky to be able to talk with my wife about anything i'm feeling and I know God is there.
Financially, I suck, my wife still makes good money so we get by, but we could be making much more and thus having more opportunities to do the things we'd like to do and more easily afford things that might prove helpful to me. I have no idea what to do this year and moving forward for work. Last year was horrendous, the year before as well. I'm virtually bringing home nothing and I am just not the type of person that would ever be ok with that, it weighs on me too hard that my wife has to bare the brunt of the financial needs of the family. I'm desperate for some advice on things that can implemented that work and are non-narcotic.
Thanks so much for reading this, I wasn't intending on writing a book here!! =]
Thank you for sharing dkel9307, i read these stories and am motivated by everyones strength.. even tho i know that this condition is just impossible. One of my dr's just sent me a TENS machine, so as soon as i can figure that puppy out i'm going to try electroshock therapy! =] here's hoping for brain damage! or super powers.. i'm cool either way =]
When my EM suddenly showed up (completely randomly, like it always seems to), I had no idea how to reconcile working in a laboratory environment and wearing shoes. Some days I'd sit at my desk with my shoes off underneath, and only put them on when I had to run an experiment or check readouts. This was with a pair of shoes that breathed, even - when I got a different job at a large design company, I had to wear nice business shoes - talk about stuffy and lack of air flow. It was incredibly difficult, especially in the summer. I thought it would never end. Then it spread to my hands, which became the worst part of my life. Every night it felt like fiery laser beams shooting out of my hands. Luckily I was between jobs.
Over the course of 2 years, the issue of my feet has slowly gone to the backburner (no pun intended). It settled down, and I am able to wear shoes without a second thought, even in 95 degree heat. My hands are still a challenge, but they've gotten better than they were, making doing design work a little less difficult. Luckily for me, I have never missed a day of work due to a flareup - it's never so bad that I'm rendered completely incapacitated. Things can get better, you just have to buck up and deal with it, and always remember that somebody else out there has got it worse than you.
WAUW YOU ARE LUCKY...Me I have been SICK HOME for the last 10 YEARS and SO BORED I wish that I could go back to work...And I am VERY LONELY ALSO NOW
I WAS WORKING IN A HOTEL AT THE RECEPTION STANDING THE ENTIRE DAY WITH NICE SHOES ALSO...It was a TOTAL NIGHTMARE AT THE END
I use a TENs machine for pain related to my Fibro but haven't used it for EM. I am interested to know howe you get on. I found that with my back/neck pain I could use it on a strong setting and get relief, its a bit like replacing one pain with another at first but the TENS pain was definitely a better option. I used to have it on ALL waking moments and now can just use it as and when pain gets unbearable. I am still managing to work full time but my employers have been great about adapting the working day to suit some of my needs. Got new colleagues starting Tuesday so worried about if they'll be as accomodating.!
Jeramie Gatchell said:
Thank you for sharing dkel9307, i read these stories and am motivated by everyones strength.. even tho i know that this condition is just impossible. One of my dr's just sent me a TENS machine, so as soon as i can figure that puppy out i'm going to try electroshock therapy! =] here's hoping for brain damage! or super powers.. i'm cool either way =]
Luckily I work at home with children. I can't wear shoes except for when singing on the contest stage with my chorus. They have holes on the sides of them that no one can see. Otherwise I wear flip flops or sandals (even in the winter). My own grown children know it MUST be cold if Mom is wearing SOCKS!
I have found that doing yoga and eating properly for me has gotten my EM under control. I still have to stay out of the heat of course and it helps being in charge of your environment.
My EM started when I was pregnant, it was excruciating then but the heat has significantly subsided but I get flares all day now. My employer allows me to wear Birkenstocks, thankfully I work in California at company that installs Solar Energy so it is too crazy. I also keep a yoga ball under my desk to elevate. My nights tend to be worse that my days, but even leaving the building for lunch with co-workers can cause an hour long flare after we get back. Its not ideal but our building stays pretty well air-conditioned and I think the distraction of work helps. People can see on my face when I am having a bad day.
I have been unable to work for nearly 2 years now, due to the EM and my spondyloarthritis. The extreme pain and flare-ups in my feet make it impossible for me to continue in my previous job as a labor and delivery nurse. Unfortunately, I cannot sit very long either because our the severe passion in my back and hip joints. So, I alternate sitting, standing, but mostly reclining with my feet elevated. I was just granted disability by the judge, but am really hoping and praying for a cure (or at least a good enough treatment) so I can return to the profession I love. Or at least some decent career I can make a living with.
I was fortunate to meet a certified detoxification specialist trained by Dr. Robert Morse, ND. After our consultation and iridology assessment he provided, I began the herbal protocols and started an all raw vegan diet with high fruits. This included green energy drinks (juiced at home) and smoothies, salads at night.It’s only been 3 mos or so and I’ve seen tremendous results already. I’m going to keep on this path. Our bodies our highly acidic. it’s all about alkalizing your body through the right foods, detoxifying toxins out and regenerating new, healthy cells. This is working! Here is a link to Robert Morse’s book ~ be sure to read the book description: http://www.amazon.com/The-Detox-Miracle-Sourcebook-Regeneration/dp/… Here is a link to his videos: http://www.rawfigs.com/. This is also a very good read: http://www.drmorsesherbalhealthclub.com/GreatLymphaticSystem.pdf. For those of you with an open mind, I hope you research and embrace it. Well wishes to everyone!
Dang, I had this huge post but it seemed to disappear. Hope I didn’t send it to one of you individually on accident! Sorry… : )
But basically I said that just seeing the new topic made me ball my eyes out since I had been literally on the sofa with my legs up over my head for the entire holiday weekend to calm some of the swelling from my EM (nicknamed Ethel).
And here I have only been at work for 90 minutes now (with legs on top of copy paper boxes and ice packs on top of my ankles) and Ethel is already attacking me wholeheartedly. I know that when I get home this afternoon the swelling will be terrible, and the burning fire pain just one more massive thing pushing me down. I am still working full time, but just barely.
I had been on disability this last year, for about 3+ months, but did not get much rest honestly, since I was admitted to the hospital numerous times due to pain. I am no stranger to procedures and treatments, but have been too scared to take opioids for the exact reasons that someone else posted here. They just seem like they would make me disappear.
My banking form has spent $ to make a spare office temp controlled just for me, it it’s not enough. The office can only bring temps to the low 60’s and I need it much cooler. I haven’t been at my old desk for months now, since we have an open floor plan, and I was literally freezing out my co workers. We call the spare office ‘the meat locker’, go figure.
But I have to thank all of you for sharing about what your EM does in your lives, since it has helped me come to a decision this morning that I need to set things in motion to go back on disability again. This is too hard, too painful, and insane for me to try to work at the level I did before Ethel invaded. Time to go home, lie down with my eggs over my head, and rotate my ice packs. Blerrrrrrg… : (
Thanks guys,
Pesto
I know...I have wanted to post before but got discouraged cuz when I clicked on "Reply to Discussion" it just disappeared. So I gave up for a while but the next time I saw the "Add Reply" box which I hadn't seen before. Then it woeked!
I have researched detoxification too. Especially about Mercury. I agree it has something related to EM.
I forgot to mention I've been working the entire time (2.5 yrs now since 'diagnosed'). Work 40+ hours some weeks. I have tried every alternative treatment known to man it seems. It wasn't until I changed to the all raw high fruit diet, juicing with the herbal protocols specific to my health issues (this is key) the past three months that I have seen dramatic changes. My body is healing itself....regenerating new cells, getting rid of the old garbage. Our bodies are highly acidic to be "on fire" like this....My EM had spread to my knees, hands, arms, up my legs. Plus, I have RSD in my left foot to make things more complicated. No more knee or arm flares. Hands just a tiny bit. My legs look sooo much better. My feet flare minimally (maybe once a week) and when they do, no swelling like they used to.I was able to get off the 2,800mg a day of gabapentin. I'm able to take warm/hot baths with my feet in! I sleep with my feet under heavy covers now. I'm looking forward to the future and the positive changes to come! Anyone can do this is they have the desire and will power. Check out some of the links I provided above if you have any interest. Many blessings to you all!!
Research Dr. Robert Morse, ND and the lymphatic system. It's not just about detoxing from one thing. It is a process of alkalinization, detoxification, and cellular regeneration. Your lymphatic system plays a very important role in this. Best wishes to you!
karenatl said:
I know...I have wanted to post before but got discouraged cuz when I clicked on "Reply to Discussion" it just disappeared. So I gave up for a while but the next time I saw the "Add Reply" box which I hadn't seen before. Then it woeked!
I have researched detoxification too. Especially about Mercury. I agree it has something related to EM.
Oh, Ok, I see! I used to have lymphatic drainage massage but haven't lately. Maybe I should consider it again.
Hi, did the lymphatic massages used to work for you? if they did then I think give it another go, I think sometimes any small relief is worth giving things a go.!
karenatl said:
Oh, Ok, I see! I used to have lymphatic drainage massage but haven't lately. Maybe I should consider it again.
Yes, My insurance changed and we didn't have any for a while but now I can try it again.
Hi Everyone,
I’ve been mostly reading because my life has been a bit chaotic. I have had EM since I was ten and so far the only thing that has kind of helped is nerontin. My psychiatrist actually prescribed it for its dual effect on mood and pain. My orthopedist knows a little about EM, but doesn’t make it a priority in dealing with me because I also have spinal stenosis, arthritis, and a knee with a blown ACL. Still, the heat of a flare up in my feet ties with the stenosis in obstructing my life. By the end of the day, I. an neither stand straight or walk without great difficulty.
Okay. Surviving the job: I almost always take cabs home from work. I’m a teacher in NYC
I spend the day on my feet. With good classes, I try as muc.as I can to sit when I work with kids and use monitors for some footwork, but I often don’t sit for hours. I have had to make huge sacrifices in my lifr outside work. Most of my money goes to cabs to and from work. Movies, theater, even meeting friends just doesnt happen much. At this very moment, I am running my AC pretty high to keep the feet cool (and the rest of me - but the rest could stand a few degrees higher. Fortunately, the cats like it). So the electric bill is not low. I don’t watch TV, don’t have cable, have medium speed internet. I cannot afford to dress up too much for the job and stick to beige cotton slacks and a retinue of about seven large cotton shirts. I only wear sneakers - New Balance 993. They are too heavy and hot, but the cushioning is imperative. Thankfully, sneakers are worn by most teachers these days, even with suits. We are all being pushed to insanity with politics and overcrowding, so we can’t stand on ceremony - literally. I would love to wear sandals but fear what the students and parents might say about my feet. I have accepted also that I can get no relief at work - the culture offers no privacy and if someone saw me with socks off, I could be in serious jeopardy.
For now, I am still going at it, but it is almost not cost effective versus retiring on disability. I spend an enormous amount of money also on making copies at my own expense so I dont stand for hours at the copy machine and so that I can go home and get relief rather than spend more time in the building. As it is, I stay late working with kids. At least then, I sit.
I have taken one sabbatical for six months, to work with other gealth issues and may take another. I am entitled to one more paid sabbatical (60 percent pay.) I have already researched what would be necessary for me to retire on disability. I would make about half my salary, but given so much goes to the job, I don’t know if it is that bad. I can do absolutely nothing else if I work. My summers are spent resting and desperately trying to calm this generally inflamed body. I did start to swim this summer a bit at the YMCA, but that requires recovery, too.
So I am balancing on a thread. Ihave the cit’s because I love them and their love pushes me to keep on at all.