Does anyone here with EM use a wheelchair and or collect disability. Lately my EM seems to be getting worse (as I get older). I'm only 31 now so I can't even imagine what it's going to be like in a few years. Just trying to see what I may have ahead of me...
Hi there
Yes I do collect disability from work at the moment been off for a year
And in that year it has got worse . Started off in one foot just burning then the other hands next then the nerve pain started but there where a couple of times that I went for about 3 days without flares I could not figure out why . The last year at work I felt like I could coupe
Shortly after that I stopped . I would have to use a wheel chair if we want to go far
Have not done it yet don’t want to give in . It’s is also in my body face and ears have to keep the house cool poor husband is freezing . If you can find a drug that will help you can get a bit better get trying hope you have a good doc
Good luck
I’m not on disability. Just diagnosed three months ago and have recently started using a wheelchair when walking any distance is too painful. My EM seems to be progressing. But it’s complicated by trauma-induced, pressure-sensitive neuropathy in the front of my feet, which makes walking doubly difficult. Beth L.
Not on disability and not in wheelchair for me. But it is difficult at work, I am often without shoes. I'm a professor.
I’ve had EM for almost 16 years. Each year it progressed. Last year I was awarded disability which is my full retirement. I would be retiring in 2 years anyway which I think helped my cause. But, this summer I got a power wheelchair. I don’t need it in my home but if I want to go anywhere I need it. I can no longer walk. I’m sure I could have used it sooner but I didn’t want to. It got to where I could no longer go to my office and work. Fortunately, my employer has let me work part-time from home. I never dreamed that it would ever come to this. I used to be very active so it has been very hard to change my life. I’m a little hopeful right now because my primary doctor is willing to work with me. I’m downloading all the information from Dr Cohen on his website called MedicationSense.com. He has it himself and gives a number of things to try out. My dermatologist didn’t feel comfortable prescribing some of the things he lists but my primary said he would try to help. I am seeing him this week. All I can say is just keep trying everything out there that’s available to try to control it. I don’t want to sound like it’s all bad news but I’m just telling you what happened to me! Best of luck to you!
I'd say my mom is about as disabled as an EM person would come to being that way. She walks less than 25 feet a day on average. She has a wheelchair and her feet are elevated when we push her in it. She has a soft rug to step on before getting in the car. She was already getting SSI when she developed this and my dad was retired. Does a housewife every retire? Well she did. She went from being able to ride a bike and go out and do normal things to be disabled within 6 weeks with a massive flare that basically just kept getting worse and worse.
She had a mild form of burning feet back in 1995 or so, but that was resolved when she came off a drug that is often given for mental health reasons. It was Xanax. And she developed the fast onset of burning foot syndrome basically within a month to six weeks of taking Risperdal. This drug destroyed her life, and basically destroyed our small family life as well. If she was working in any capacity with the public now it would have to be on the phone. But the drugs and her pain is so bad she ends up talking about how bad her day was, and even normal conversations on the phone are very difficult. She has an Iphone which has terrible phone capability as a voice phone. Due to the drugs and at times drowsiness from them, her speech can be slurred or she may be talking as she is almost falling asleep. It makes it challenging for her to even have a phone conversation. Much of this is due to the heavy medication she is on. If she feels better and is well rested she might be better on the phone and more normal. Also without pain she may get very excited and want to do something, but this is normally if her feet are practically frozen from cold water treatment and that allows her to work for a very short time on her trip to the bedroom or to the bathroom bedside commode. She basically has normal activity in her upper body, but pain and environmental chilling keep her sitting in a chair, practically 24 hours a day, when she is not in bed. So she is about as disabled as one could get. But she hasn't approached a doctor who will give her a prescription to a handicapped sticker for her car, that lasts for more than 90 days. Amazingly although she cannot drive a car and hasn't drove in over 14 years. She hasn't gotten a doctor to give her a permanent handicap sticker. Now it's not a thing that is a high priority, so we haven't gone doctor shopping for a handicap sticker. As my dad or I go out and drive the car and mom can't really go in anywhere to shop or socialize unless it's for a medical appointment, which is rare. . . we don't need a sticker.
Mom will at times go out to see a doctor, but that is rare, doctors and nurses come to the house for her. She is pretty much home bound. We hope to have some treatment that may work, like Mexiletine or perhaps a new nerve kind of nerve block that will restore some functioning and some normalcy.
If you are able to get out and do something consider yourself lucky. If you have a worse case version of this disease, I hope you are surrounded by a lot of helpful supportive people, because in those cases you will need them.
Even though we are stuck here and as things get worse, my ability to live as a caregiver are curtailed more and more, we still count our blessings. We still can do things at home to entertain ourselves. My father and I get out a little bit. We have problems scheduling time to figure out when we can get mom out, the pain costs are to high for her. Well I'll end it now because this is turning into a long diary like entry.
Pinkcadillac, hello, I am a newly diagnosed EM sufferer. I know that this is an older post from you but I wanted to see how you have been doing. I am also VERY worried about what the Future may hold for me. The responses posted to you are awfully bleak and scared the heck out of me. I know that everyone’s EM is different, so we can’t assume that the course of our EM will be like anyone else’s. I have to tell you though, it’s so frightening, being newly diagnosed, what others have progressed to. I am 52, a mother of three, and Grandmother to a 6 year old who lives with us. My Husband and I are responsible for all of her care (that’s a long story). My life has been turned completely upside down by this disease/disorder. I am very depressed, to the point of crying daily and also suffering with daily nausea and dizziness (has anyone else experienced these things?). I don’t know what to do. I am going to see my Pain Doctor in a couple of weeks, as I have found out that he supposedly also sees patients with EM. Not expecting much, but I hope I’m wrong. Anyway, I just wondered how you are doing and to let you know that I too, am terrified of how my EM may progress. I hope that you are doing well…
Oh, one more thing, if any of you have a good understanding of how S.S. Disability works for people with EM, or in General, I have been turned down (over the phone) for Disability apparently because if my Husbands income. We have 5 people in the House living on that one income!! I would love to hear from anyone who understands the S.S. System. The money is greatly needed.
Thanks! I am so grateful that I found this Support Group! It’s great to be able to get REAL answers from the only people who can truly understand EM! Wishing you all the best.
Hi withpaincomesstrength, I have been on disability for a year & a half. I worked all my adult life & I’m 63. Have you worked outside the home & paid into social security for at least 10 years? If so, then you can file for social security disability. Your monthly payment then depends on an average of how much you earned. If you did work at least 10 yrs then I’ll tell you what I did to get disability. If you didn’t work then all you have available to you is SSI which is social security for the aged, blind, & disabled…and that is determined by income coming into the family. Social security disability…working at least 10 yrs…does not depend on income unless you’re wealthy & then they don’t allow because you don’t need it. So after your reply I’ll know if I can give you any other advice. Hope you’re feeling better!
Hi
Yes I am on disability have not worked for 2 years which I find very sad loved my work .not in a wheelchair yet but can see it coming I hope not . I have EM for only 4 years but what I found that sometimes things would be better and then other times worse . Get a great doc that will help you try meds to find the right one . You do hear some great stories about people finding relief hang on to that as I do take care
Hello, I know this is an overwhelming time for you, but you can gain some relief. This will require you to be assertive with your doctor. You will have to educate them. I have found some relief using variations of drugs. Unfortunately this is not a one size fits all solution. You will have to try various meds and doses. Keep a daily diary of how you are doing and wright down any patterns that you see cause flares. For me I keep the house to around 68 degrees F or lower. This helps a lot with flares . I have three fans that blow on my feet at night. The fans are at the end of my bed and face in different directions. This helps me to sleep. If you do this make sure to keep your feet hydrated, coconut oil, sweet almond oil, or other oils keep them from drying out or getting wind burn. Morning times are the best for me, so I try to get some exercise in the mornings. Sleep and exercise are important, although sometimes difficult to achieve, do to pain. Do not allow hopeless thoughts to recycle in your mind. With effort and experimentation you will get some relief. Im working on building some devices that will help with sleep, walking, and driving in the car. For meet is all about avoiding flares. When I have finished these devices I will share them with others. Be at peace.
Withpaincomesstrength said:
Pinkcadillac, hello, I am a newly diagnosed EM sufferer. I know that this is an older post from you but I wanted to see how you have been doing. I am also VERY worried about what the Future may hold for me. The responses posted to you are awfully bleak and scared the heck out of me. I know that everyone's EM is different, so we can't assume that the course of our EM will be like anyone else's. I have to tell you though, it's so frightening, being newly diagnosed, what others have progressed to. I am 52, a mother of three, and Grandmother to a 6 year old who lives with us. My Husband and I are responsible for all of her care (that's a long story). My life has been turned completely upside down by this disease/disorder. I am very depressed, to the point of crying daily and also suffering with daily nausea and dizziness (has anyone else experienced these things?). I don't know what to do. I am going to see my Pain Doctor in a couple of weeks, as I have found out that he supposedly also sees patients with EM. Not expecting much, but I hope I'm wrong. Anyway, I just wondered how you are doing and to let you know that I too, am terrified of how my EM may progress. I hope that you are doing well......
Oh, one more thing, if any of you have a good understanding of how S.S. Disability works for people with EM, or in General, I have been turned down (over the phone) for Disability apparently because if my Husbands income. We have 5 people in the House living on that one income!! I would love to hear from anyone who understands the S.S. System. The money is greatly needed.
Thanks! I am so grateful that I found this Support Group! It's great to be able to get REAL answers from the only people who can truly understand EM! Wishing you all the best.
I also got disability quickly (on first application without needing to appeal) I figured because I wasn’t too many years from retirement by then.
GHi elenawi,
I’m pretty sure that I received because I was also close to retirement. I suffered many years while I was working. Thankfully, I mostly had understanding employers plus doctors notes about why I had to wear sandals. Then it progressively got worse so then I had to file for disability. I’m in a wheelchair now whenever I go outside my home.
Also, I have breast cancer now but fortunately it was
caught early and I don’t have to get chemotherapy which the doctors thought would make the EM worse. I will need radiation. I hope you are able to keep cool right now! Can I ask you another question? What do you do for your feet at night while you are sleeping to keep them cool?
I have a large construction over the bottom of my bed to hold blankets/sheets off my feet. I use to CryoMax ice packs wrapped in a towel at my feet. these also cool the air in the space around my feet.