Hi everyone
Perhaps I am wrong, but I got the impression that many of us haven't had EM for very long?
(<5 years?)
So I was wondering how long people have had this for and perhaps if something else came along (eg: MPN) then how long did you have EM prior?
thanks in advance!
I have had this to a very mild degree for about 10 years but never knew it. It was so mild I just thought that is strange but just went on with my life because other than my hands turning a little red and or purple it didn't last long or hurt really. I mentioned it to my doctors because it was strange but they didn't know what to think of it and they weren't concerned so I let it go.
It came on like a crazy train in late 2010 so about 4 years now since it is so awful you can't ignore any more. They still don't know why . possibly secondary to an autoimmune disease. It does seem like most people we see here are rather new to having it. I hope it is because people do get better and they no longer participate on the site. I know some people here have had it for their lifetimes but are new to the site or new to knowing what it is after a lifetime of it!
Take care,
Alina
Em started for me about 11 years ago. At one point it was really strong. Then I had about years of it coming and going but had enough good times in between that I was handling it quite well. Roughly, 3+ years ago it really picked up on intensity and by last Christmas I was miserable with it. Eventually I found this forum at the end of April. I was in a very depressed and anxious state. Just realizing I am not alone has helped me to accept the fact I've got it, but also reinvigorated me in my efforts to find a med that will help. I'm still dealing with a lot of anxiety (anxiety is a POTS symptom)and get depressed at trying to deal with this thing but I am getting some insight into EM and how I can help myself by reading posts from other members of this group. There are days when I don't feel so overwhelmed.
blue
I am so happy blue that being here has helped you! It has helped me too more than I can say. I was going to write more but My fingers are so numb now I just can't feel them well enough to type!!! Sounds strange but I must put my computer away so I can suck on them a while. It is the only thing I have found to get some blood back in them!
Take care,
Alian
I’ve only recently self diagnosed myself with EM as my doctor washed her hands of me and I’ve yet to find a new one.
Bur I’ve had the symptoms for possibly 4-7 years, getting progressively worse until I realized that this wasn’t normal amd started investigating.
As I’m still in the progress of getting a medical diagnosis then as far as I’m aware I don’t have anything else/ haven’t found the underlying cause yet.
Edit: typos from typing on my phone
I know what you mean Ellesharra about not realizing it wasn't normal in it's mildest state. I used to get swollen hands when walking briskly but it wasn't particularly painful and this was the first time I had really done a regular exercise program. I thought that is just what happens when you exercise. Slowly over the next ten years I started getting what I thought to be spontaneous swelling with mild pain in my hands. It never lasted more than a few minutes and wasn't too painful so it was easy to ignore and not think too much of. About 4 years ago in came on with a vengeance and it couldn't be chalked up to normal any more. Since It came on strong I have had varying degrees of it from completely incapacitated unable to walk at all 24/7 without severe pain to able to sit in a restaurant without consequences and everywhere in between. Symptoms tend to change for me in cycles lasting a few months at a time.
Since it came on hard 4 years ago it has yet to go back to the mildest form like it was for the 10 or so years preceding the full on EM. I wonder if people look back in their life if they too will notice it was present ever so mildly long before they knew they had a problem.
Take care,
Alina
Who knows - I always had a sunburn on my chest spring/summer - it itched and burned but the skin never peeled (like it should have if it was really burned). Was that EM? In 2012 my feet started itching late evenings and then I had this strange feeling, as if I had put a heating pad on my back. EM? I believe so, because in the summer of 2013 my hand showed the red, burning symptoms and abut 6 months later my feet followed. (self diagnosed and confirmed by a dermatologist). And that's where I am 24/7 hand and feet pain, some of it seems to be nerve pain, like having been scraped with sandpaper.- My chest still shows signs of sunburn even so it's not exposed to the sun, my throat , my ears and my eyelids turn red without pain and my whole body has a feeling of being too warm inside.
Hi
I have had ME for 30 years and I have recently found out I have POTS and EDS. The EM didn't start until 7 years ago and the nerve pain spread up my body from my toes up to my head. I didn't have any nerve symptoms like this until then.
No one seems to know much about these sort of conditions so meeting others with EM helps no end. Mine was just labelled 'neuropathy and ME' so no one bothered to look at the origin/cause etc and I've been on Nortriptyline and Gabapentin since.
Mine came on about 3.5 yrs ago - winter of 2010/2011. I self-diagnosed in 2011 but didn't get a doctor's diagnosis until February of this year. As of that most recent doctor visit, I still had no clear underlying cause; my plan is to repeat the panel of tests yearly if I can afford it.
I've had EM that interferes with my life for 35+ years. Did not get a dr diagnosis until 5 years ago. Have lost all of my toenails, and haven't worn anything but sandals for over 20. I own some clog sheepskin slippers with heavy sole for when it snows occasionally, so I can slip them off when the burning is too intense. Good luck everyone.
My mom’s is very recent just for 4 months but is very intense, most days and nights, some days are worse than others without any apparent triggers, just now she is going to urgent care she says is a 10( in a scale of 1-10) she is on lyrica but is not helping. Prior to it she got purpura back in January and after that EM developed.
Hi Alina,
I had no idea that the swollen hands and sausage fingers when I walked briskly for exercise years ago , pre EM (or so I thought) were actual signs of EM a long, long time before heat and pain showed up. My hands used to itch sometimes. And there was always one particular large spot on one of my upper legs that itched like crazy while out walking. Your post bought it back to me.
Blue
Alina Delp said:
I know what you mean Ellesharra about not realizing it wasn't normal in it's mildest state. I used to get swollen hands when walking briskly but it wasn't particularly painful and this was the first time I had really done a regular exercise program. I thought that is just what happens when you exercise. Slowly over the next ten years I started getting what I thought to be spontaneous swelling with mild pain in my hands. It never lasted more than a few minutes and wasn't too painful so it was easy to ignore and not think too much of. About 4 years ago in came on with a vengeance and it couldn't be chalked up to normal any more. Since It came on strong I have had varying degrees of it from completely incapacitated unable to walk at all 24/7 without severe pain to able to sit in a restaurant without consequences and everywhere in between. Symptoms tend to change for me in cycles lasting a few months at a time.
Since it came on hard 4 years ago it has yet to go back to the mildest form like it was for the 10 or so years preceding the full on EM. I wonder if people look back in their life if they too will notice it was present ever so mildly long before they knew they had a problem.
Take care,
Alina
Hi domina, i know that feeling of skin being sandpapered and always feeling too hot inside (unless my body does the switch to bone chilled cold) all too well. It kept me awake all night. I'm so glad the birds are up now. Exhausted, but at least the lonely painful anxious night has passed.
Blue
Domina said:
Who knows - I always had a sunburn on my chest spring/summer - it itched and burned but the skin never peeled (like it should have if it was really burned). Was that EM? In 2012 my feet started itching late evenings and then I had this strange feeling, as if I had put a heating pad on my back. EM? I believe so, because in the summer of 2013 my hand showed the red, burning symptoms and abut 6 months later my feet followed. (self diagnosed and confirmed by a dermatologist). And that's where I am 24/7 hand and feet pain, some of it seems to be nerve pain, like having been scraped with sandpaper.- My chest still shows signs of sunburn even so it's not exposed to the sun, my throat , my ears and my eyelids turn red without pain and my whole body has a feeling of being too warm inside.
Well blue…I can’t say for sure if it’s part of it because now I have asked other healthy people and they say they don’t have that happen but it seems logical to me it may be related. I didn’t have the itching though I do now but interesting that exercise caused it for you back then.
Hi blue, sorry that you suffer the same pain and hope you have a better night - during the day my feet are usually cold, but the *sandpaper-pain* is still there. Today is one of my worst - always the same - New Moon and Full Moon get me every time - the only reason for my flares to get worse for a day/night. Others are laughing when I make that claim about the moon, but I know that is what happens.
My EM began in 2000 without warning or any prior symptoms. Of course no doctors knew what it was and I went from one specialist to another without any hint that this was a bona fide condition! Only through my own research on the internet, searching under 'burning feet' did I finally find the accurate and precise description of what I was experiencing!! I had had gestational diabetes with my pregnancy in 1994-1995, and about 5 years ago was diagnosed with type 2 diabetes. So of course doctors are now attibuting my foot pain to diabetic nerve damage, and of course none of them understand EM, even though I have provided them with print-outs of the condition. I have given up finding a doctor who is familiar with EM and who could actually diagnose my symptoms. But my symptoms are being controlled by medications I am taking for the burning and extreme pain I have in my scalp too! One doctor, a neurologist who specializes in headaches, has been willing to treat those symptoms, even though they are not actual headaches, but rather extreme nerve sensitivity in the scalp. The side bonus of those drugs is that they take the worst of the unbearable pain away from my feet too. Still, I cannot walk or even stand for long before the pain in my feet becomes triggered, along with the searing/burning sensations too.
TCP, I'm on Gabapentin too, and Doxepin (similar to your Nortriptyline), even without a specific diagnosis of EM. Thank goodness these drugs help us!!! Reading from other sufferers, apparently sometimes these drugs don't work for everyone. I am grateful that it takes away the worst of the pain, even though I suspect I'll never be pain free.
TCP36 said:
Hi
I have had ME for 30 years and I have recently found out I have POTS and EDS. The EM didn't start until 7 years ago and the nerve pain spread up my body from my toes up to my head. I didn't have any nerve symptoms like this until then.
No one seems to know much about these sort of conditions so meeting others with EM helps no end. Mine was just labelled 'neuropathy and ME' so no one bothered to look at the origin/cause etc and I've been on Nortriptyline and Gabapentin since.
I have such 'ah-ha' moments reading others' comments. Your comments about 'sandpaper pain' is so EXACTLY the way I've described my symptoms to other people who are clueless about EM. Thanks everyone for all your input. It truly does help to share our thoughts/feelings/pain/frustration with others.
Domina said:
Hi blue, sorry that you suffer the same pain and hope you have a better night - during the day my feet are usually cold, but the *sandpaper-pain* is still there. Today is one of my worst - always the same - New Moon and Full Moon get me every time - the only reason for my flares to get worse for a day/night. Others are laughing when I make that claim about the moon, but I know that is what happens.
Hi blue,
I was diagnosed with EM last September after bad symptoms for maybe a year. However, knowing more about the symptoms I now realize I was experiencing some quite a bit earlier. Fore instance I noticed my feet burning after walking briskly in 2005 or 6. Before that my feet were usually very cold and I would have to wear socks to bed. But then at some point I remember starting out in bed with socks on my feet, and then sometime in the night waking up to rip them off because my feet were on fire. It would take a long time for them to cool off.
In 1998 I was diagnosed with peripheral neuropathy, but we were living near Naval Station Naples in Italy, where my husband was stationed for 3 years. The military had limited medical facilities for determining what was going on with me while living there, so it wasn't until we returned Stateside in 1997 that the search began in earnest. I can actually remember having foot pain from 1979. It just grew worse over time and of course would grow more or less uncomfortable depending on my weight fluctuation. The doctor who diagnosed my EM at Mayo Clinic told me mine was probably due to my longstanding "acquaintance" with peripheral neuropathy.
It was during the summer of 2012 that I became aware of my hands and face behaving oddly, i.e. growing very red and hot even when it wasn't that warm. But I do remember one incident earlier on that rather scared me. I was sitting on our couch reading with my back to the late winter sun shining in through a window on the back of my head, and gradually became aware that my face was blowing up! I got up and looked in a mirror and it looked like I was suffering an allergic reaction to the sun!! It was swollen, puffy and bright red. Fortunately I haven't had that experience since, but I haven't put myself in the sun like that again, either. :-/
At this point I am thankful to be helped by gabapentin and zonisamide. Sorry for being so long winded!
I have had symptoms since 12 yo. I am 37. My genetic test was negative . I was not diagnosed until 35!