Sorry for everyone’s pain out there.
I have been struggling with diagnosis with doctors thinking I could have EM. My feet and hands turn red and face flushes red also. Feet and hands are red with use (better at night and at rest). I have pain in feet and hands with increases with use, feet especially can be quite painful. I can’t stand too long and notice redness in hands will be less if I raise them up. Redness in feet decreases with use. I can swim ok with no foot pain or redness. Doctors first thought I had raynauds but symptoms are bad both in summer and winter and I’m sensitive to both heat and cold. Doctors tried nifedipine for about 8 weeks but it did not help at all. I’ve had extensive blood work up. The CBC is normal but red blood cells/ hemoglobin are very slightly under the maximum level, and the only other thing that is elevated is MPO (myeloperoxidase) which doctors think is from inflammation. I have been tested for vasculitis, lupus, RA and other autoimmune diseases and nothing is positive. Nerve tests (EMG and small fiber biopsy testing is normal). MRI of back indicates likely normal arthritis but nothing else confirmed. Blood pressure and pulse normal to low. Have heart palpitations about once a week (heart EKG and stress test normal). Doctors think possible autoimmunne cause and are now trying trial low dose MTX (six weeks) and plaquenil (three months). The plaquenil I can tolerate but I’m finding MTX very tough and may go off it.
Have been tested for infections (hep. B and C HIV etc which are negative). Don’t really have flares, every day the same.
Previously healthy 58yo male.
I don’t know how to attach photos but if I can figure out how to do that will post them. Feet looks like EM but maybe not?
Any thoughts are appreciated.
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Seenie from ModSupport
I find it odd they are giving you MTX without a diagnosis. Plaquenil is less harmful at least. It took me years before the blood work showed anything. My ANA is now always positive though but I think they changed the range. Sadly, I think they are missing a big chunk of information related to autoimmune diseases. One day they will have a test for the other 50% who go undiagnosed, I hope.
My hands turn really red when they are not elevated. My feet kill me unless they are elevated, but at night the burning pain overtakes everything, so being off my feet is better but the damage is done by then and I can’t relieve the burning.
I was not sure I had EM at first because my feet were not as red on top of my feet as the pictures I saw on the internet but the blood pooling in my feet was a significant symptom and it took me some time to realize that was actually one of the symptoms. Doctors long ago went into medicine to help people, to discover new medicines etc because it fascinated them, but nowadays they go into medicine because it is a lucrative career so they are not interested in anything but that paycheck. I am 61 and lost everything due to not being able to claim disability because for years they told me it was in my head. Patients know way more than most doctors.
Just like you hayley3 I can’t claim what is called PIP in the UK because I wasn’t diagnosed with rheumatoid arthritis until after retirement age. I applied for it when I was 59 and under investigation, but was turned down. Also when the report came the one that did my assessment lied about what I told him. People said I should have appealed, but my pride wouldn’t let me and I wish I had as people say a lot of times you are turned down at first until you appeal.
I can relate, sheltie! I just completed a functional capacity assessment at the Physical Therapy Dept so that I would not be put in position at work of standing in one spot for any length of time and when I read the assessment, I saw that the physical therapist didn’t either listen to me or just made things up, saying that periods of elevation helped me at work when that is not the case…once they are in pain, they stay that way. She also talked about people faking stuff while I was there…so that was her main concern, not helping me. The bad thing is they can’t see our pain, even though I told them I stand on the sides of my feet to reduce the pain, not that it really helps but it’s a coping mechanism.
I should’ve had disability when I was 40 something because the Rheumatologist saw the EM then but he didn’t know what it was either.
Yes I am learning fast that you are best not to be honest. I think they allow for people faking it and whatever you say they knock it down a lot. e.g. He asked could I cook a meal from fresh veg etc. I said I had great difficulty peeling things and lifting heavy pans was very hard. When the report came he said I could cook a meal from fresh. I should have said I couldn’t. What annoys me is other people I know have very little wrong but they are good at acting and so get everything. I do get attendance allowance but the lower rate. The district nurse that comes to dress my ulcers told me off for not making more of how hard things were.
This is where pictures are truly worth a thousand words! My GP seemed to not believe me because I never had hot red swollen feet by the time I actually got to see him. Then bam I had a picture on my cell phone! His response “looks like that might hurt”.
I’m sorry you’re going through so much and I hope you find the answers you are looking for. My own experience with EM has always been characterized by red flushed skin (almost always my feet or one foot) and the redness is always accompanied by intense heat. I dont remember your post saying anything about your skin being hot with the redness. I know there is a lot of variability in how EM manifests and what helps to provide relief varies widely as well. I hope you get an accurate diagnosis (whether it is EM or something else) soon so you can explore treatment options and get some relief.
Thanks much, no in winter at least my feet are cold, summer my feet are
warm, feet and hands get real red though with use and as the day goes
on.Feet not very painful in morning but get painful as day goes on.
Pictures (not sure if I can share) attached.
Ouch-that looks very painful! I hope you are able to find relief.
That’s how my feet look during flares. I find using a large self cooling dog mat helps. During worse flares, a medical use ice pack, large and flat, helps more than anything. Hope u find relief!
Ice won’t help me, feet too cold in winter, but I did use ice in summer.
Be careful with ice, maybe a towel between the ice to protect the skin.
Always a towel!
Perhaps u can use socks and towel. .
Have u tried icy hot, spray or roll on for winter, maybe vicks vaporub
yes thanks maybe I’ll try the vapor rub in the winter.
I think I have blood pooling in feet, no one knows why yet.
Yes I too have blood pooling. Seems to be mostly my toes.Sometimes it looks purple other times blackish, that one bothers me I’m afraid of gangrene. At this time there’s no answer as to why.
Blood pools in my feet too when they are dependent. The color goes from red to blue to gray the longer they are down (when not flaring). The color quickly returns to normal if I raise them up high. I don’t know if this happens to most people with EM in their feet or just a subset of us.
Blood pools in my feet when I walk or I’m on my feet. When I swim my feet
are normal color. My toes turn red and my feet are partly red. I think the
pain is from the blood pooling (it feels like my toes are swollen). I also
have blood pooling in hands but it’s less than feet. Just in the last few
weeks I have also had facial red color when not working out. Doctors have
been unable to answer why the blood pools. I don’t think it’s POTS, at
least not yet, since I don’t have a large change in pulse from recumbent to
standing. Doctors have suggested I might have EM but my feet are cold in
winter months not hot. I can’t figure out a secondary cause of this problem
since nerve tests are good and blood work hasn’t shown a cause yet.