Hi everyone, firstly, I just wanted to say thank you all for the warm welcome :)
I will start of by saying I have not been diagnosed as having EM and have not brought it up with my Rheumatilogist as I have only just had my first appointment with him two days ago (and EM is - as I've read extremely uncommon). I am going to have a range of blood / urine tests today to hopefully rule-in or out autoimmune or some kind of connective tissue disorder. I will get the results in 3 weeks at my next appointment with Rhuem.
I requested to join this forum as I feel I can strongly relate to the major 'hallmarks' of EM (which I came across mentioned on an autoimmune support group - and did further reading).
I really don't know all that much about EM, so I thought I would post a description of my experience of symptoms with some photos I have taken, to see if it resembles this condition at all. Considering how uncommon EM is, I tend to have doubts that this could be what is going on, but would appreciate others opinion (of course I know anything said here does not count as a medical opinion, but would be thankful for feedback non-the-less) :)
My Rheumatologist said (during our initial appointment), that the Reynauds in my hands is fairly marked, as well as having quite pronounced 'livedo riticularis' on my arms and legs
The red, hot, and tender areas seen in photos below occurs when: - I am near a heater (including a building with central heating - when I exercise - or am out walking around / active for too long - if I am in the sun too long - if I am stressed or anxious - if I feel overheated ( I experience huge trouble with body temp. regulation) and am wearing a t-shirt or sweater that covers my shoulders and back of neck, I will end up with very tender, sore, red patches on shoulders and upper arms.
I generally get the flushing on both shoulders and both hands, although my right hand tends to always b a little redder, or a little colder and discoloured My hands seem to always have a slightly mottled colour appearance now...which isn't the most attractive...
Lastly (i'm not sure if this is related or not), I had very swollen, puffy finger tips a few weeks ago which lasted for a few days. They were very hot and red, and felt either quite sore or very firm (especially on the fleshy parts of finger tips).
I have one or two short videos I took with my phone camera - they show the flushing/redness more clearly; however they are probably to large to upload to this post. I have them on an online photo storage album, however I know some forums prefer users not to share links to photo-storage websites or other sites outside of the forum - so I haven't included a link to those files. Does anyone know what the EM forums' policy is on providing a link to a photo or video? I've chosen not to post any links yet as I don't want to accidentally break forum guidelines).
You seem to have some mottling on your arms -- very visible on your arms. I don't get mottling but I think others do. Your red patch on your upper arms looks similar to redness I get. I can get that sort of redness - on my arms and legs mostly. My face and neck tend to look a lot redder at these times. The soles of my feet go a deep dusky red and so do the palms of my hands. Today I'm red and hot, not yet burning but the soles of my feet are a bit blue-ish especially around the heel area.
I have noted that taking photos of how red I am can be sort of 'bleached' out a bit when I use my mobile phone. I have to take it against a white background to get the contrast and even then in the pictures on my phone makes my skin looks paler than it is. I'm going to have to buy a proper camera so I can take pictures to show the doc because once I get into an airconditoned building the redness and burning seems to calm down quite a bit. By the time I've waited my turn for an appointment I just look a bit flushed and the burning is much less intense.
The triggers you've mentioned are common. And I can really relate to sore red patches. I often have to strip down -- clothes will just hurt to wear them.
Apparently a rheumatologist is a very good doc to see for EM so hopefully he will be able to help you.
I'm sure a lot more people will come along with support and suggestions.
Whilst photos seem consistent with livido and you are reactive to known triggers (heat, exertion, fatigue, stress) ,we are unable to give you actual medical opinions or diagnosis in terms of whether you have EM. I apologise for not being well enough to type today so would ask that you look at my profile to compare symptoms and read the 'information for new members' post pinned to top of discussion forum. The 'new members information' has a very comprehensive video from Mayo clinic on symptomology and diagnosis , plus lots of good descriptive research. Being polarised ends of spectrum, Raynauds frequently co exists with EM so what you describe is fairly common . Puffiness or edema, also frequently exists. When did your symptoms start? I have attached some additional stuff on lividos/autoimmune disorders/differential diagnoses for you.Please do get back to me with any questions.
We have a small EM aware Dr directory if you would like us to further you some names in your area.
One thing I would stress is take plenty of photos, keep a pain/symptom diary to take with you, log of your blood pressure/pulse and try to induce a flare during a consultation( hand/foot under hot tap for example ;) ). Unfortunately with EM seeing is believing. Many differential diagnoses are given which does nothing to ease EM's rarity.
Photos and videos can all be uploaded on your profile page for members to view.
I am sorry to say your pictures and the way you describe your symptoms are all too familiar. I don't know how to post a link to my photos but if you click on my name and go to my page you will find an option to view my photos. You will find every thing you mentioned ...Levido reticularis, Raynaud's, Burning redness, swelling, and blue skin. These happen all over my body like yourself. My Doctor couldn't believe his eyes yesterday as my feet were blue/ black while my arms and face were burning and red. He said my feet looked as if they were the feet of a corpse. He gave me his stool to put my feet up and within a minute or two they returned to normal. I was told by my doctor the collection of symptoms is called a Neuro Vascular instability. This isn't a disease but more of a name for the collection of having the Symptoms from EM to Raynaud's Levido . Those being opposite ends of the spectrum. Not every one with EM has all of these although Raynaud's seems to be somewhat common with EM.
That said it doesn't mean you have the same thing just that it is possible and worth looking into further with your doctor.
I know you said you don't think it could happen to you because it is so rare but rare things still have to happen to some people so please don't discount the possibility and keep looking into it.
I hope you get some answers at your next appointment. Please keep us updated to how it goes.
Hi Mads, thank you so much for your reply; I of course understand that anything said here does not come close to a medical opinion or diagnosis (I thought I wrote something in my original post explaining this was not what I was looking for...but I cant seem to find where I wrote that - I may have forgot to put that in! ) My main reason for this post was really to ask advice (from those living with erythromelalgia), as to whether they can relate to my photos and experiences - and whether I should continue to include erythromelalgia as a possibility.
To answer your questions; Over the past few years I have been struggling with increasing fatigue and exhaustion (however I have always been quick to tire). Around mid 2012 I started to get even more new symptoms than before; since September 2013 - even more new symptoms, all increasingly getting worse. I've had the mottling (what I now know as 'Livedo Reticularis) since childhood, as well as sensitivity to cold and hot temperatures. I have always bruised very, and skin has always been very sensitive (I have had sensory processing issues - mainly hypersensitivity - effecting touch, taste, sight sound, smell (but poor vestibular and proprioceptive skills) - and thought until a few years ago that my intolerance for heat and cold was because i seemed to be very sensitive to things.
I just wanted to thank you Mads for writing a fairly in depth response even though you were feeling unwell - I really appreciate that :)
I started to take more photos in 2013 of symptoms, and this year have been taking fairly regular photos - I think I have gone a little over board with the amount of photos I take haha :) but it has been handy having them to show my G.P and at my Rheumatology appointment !
I am working my way through the links you attached - they seem very helpful :)
Thanks again Mads :)
mads said:
Dear MiaowMachine,
Whilst photos seem consistent with livido and you are reactive to known triggers (heat, exertion, fatigue, stress) ,we are unable to give you actual medical opinions or diagnosis in terms of whether you have EM. I apologise for not being well enough to type today so would ask that you look at my profile to compare symptoms and read the 'information for new members' post pinned to top of discussion forum. The 'new members information' has a very comprehensive video from Mayo clinic on symptomology and diagnosis , plus lots of good descriptive research. Being polarised ends of spectrum, Raynauds frequently co exists with EM so what you describe is fairly common . Puffiness or edema, also frequently exists. When did your symptoms start? I have attached some additional stuff on lividos/autoimmune disorders/differential diagnoses for you.Please do get back to me with any questions.
We have a small EM aware Dr directory if you would like us to further you some names in your area.
One thing I would stress is take plenty of photos, keep a pain/symptom diary to take with you, log of your blood pressure/pulse and try to induce a flare during a consultation( hand/foot under hot tap for example ;) ). Unfortunately with EM seeing is believing. Many differential diagnoses are given which does nothing to ease EM's rarity.
Photos and videos can all be uploaded on your profile page for members to view.
Thankyou for your comment, I'm sorry that its taken me a while to reply :)
" I have noted that taking photos of how red I am can be sort of 'bleached' out a bit when I use my mobile phone. I have to take it against a white background to get the contrast and even then in the pictures on my phone makes my skin looks paler than it is."
This is definitely an issue! - trying to show the amount of redness in photos ever seems to work out that well ! Your comment about your symptoms such as flushing being really obvious, but by the time you arrive at your doctors appointment they've siginificatly fadded - UGH, again, I couldn't agree more - this happens to me a lot and is so frustrating - that is one of the main reasons I started to take photos of symptoms. Taking photos also helps me to remember as I have really terrible recall/memory. When my phone is getting a bit too full of photos - I transfer them to my computer and put all the photos in a folder - this way I not only have a photo of the symptom - but can look at the details/information of the photo and it will tell me the date, year and the time the photo was taken - so I find that's really useful if I want to figure out when a symptom first started - or compare photos of the same symptom to see if it has stayed the same or has gotten worse.
lastly; " I can really relate to sore red patches. I often have to strip down -- clothes will just hurt to wear them."
This! very much so! I spend a good 2 hours some days just finding something that isn't pajams, that I can wear to go outside. everything is very painful and feel intolerable to wear. its frustrating and ridiculous to spend 1 hour (minimum) up to 2 hours trying to get dressed - not to mention it makes you very very late for everything. I don't wear make up and generally wear fairly casual, non-dressy clothing... so its not fussiness over presentation that takes me so long :P I've only have 3 criteria when getting dressed.
- outfit must (almost always) consist of layers of clothing - so that I can stip off layers or put layers back on throughout the day. (otherwise i'm in real trouble - overheating - sweating, confused, thirsty, dizzy or on the opposite end I will feel freezing cold - start to get sore throat, and my muscles hate me and cramp up after a while because they have been shaking for too long - trying to generate some heat! )
- it has to be comfortable - I have a lot of trouble with certain materials (texture, thickness, tightness etc)
- I have to look reasonably presentable (a.k.a not going into the city in my pajams or a 5 year old pair of track pants and a t-shirt that's so soft its falling apart haha
- last criteria is a bonus really; I like the outfit to be flattering and have some co-ordinate at least a little bit - so no shorts, with socks and sandals and a huge thick baggy jumper on the top half ;)
I also find that my skin (and maybe muscles? I cant really tell) get very very sensitive even without the flushing/reddness episodes; sometimes my e.g. neck and shoulders, lower back, arm, scalp, hand, wrist (and so on) will look a fairly normal colour - but I am very very aware of the area - its bizarre to describe - its somewhere in-between a tenderness/soreness, tingling, and tickish feeling, it can last a few hours to a few days and really is quite painful (not in the sharp, very obvious pain - but more of a persistent, constant irritation/ extreme discomfort. - I find that the red patches / flushing probably happens more easily on days where I have that (whatever it is) happen.
blue said:
Hi Meow,
You seem to have some mottling on your arms -- very visible on your arms. I don't get mottling but I think others do. Your red patch on your upper arms looks similar to redness I get. I can get that sort of redness - on my arms and legs mostly. My face and neck tend to look a lot redder at these times. The soles of my feet go a deep dusky red and so do the palms of my hands. Today I'm red and hot, not yet burning but the soles of my feet are a bit blue-ish especially around the heel area.
I have noted that taking photos of how red I am can be sort of 'bleached' out a bit when I use my mobile phone. I have to take it against a white background to get the contrast and even then in the pictures on my phone makes my skin looks paler than it is. I'm going to have to buy a proper camera so I can take pictures to show the doc because once I get into an airconditoned building the redness and burning seems to calm down quite a bit. By the time I've waited my turn for an appointment I just look a bit flushed and the burning is much less intense.
The triggers you've mentioned are common. And I can really relate to sore red patches. I often have to strip down -- clothes will just hurt to wear them.
Apparently a rheumatologist is a very good doc to see for EM so hopefully he will be able to help you.
I'm sure a lot more people will come along with support and suggestions.
Hi Alina! thanks for your comment - its comforting (although sad) to find someone else who is dealing with very similar symptoms! Oh dear! - 'corpse' feet sound terribly painful - but its great that your doctor knew what to do to help alleviate it ! Neurovascualr instability... hmm I will have to try and find something on that, and look into it further - you said it was a name for the group of symptoms that occur together? (such as lievdo reticularis, raynaids and EM ) - do you know if 'Neurovascular instbility' occurs as a result of something else - such as a connective tissue disease? or does that tend to be genetic? (... i'm not sure if it was you.. but did you mention that you may have a connective tissue disorder?)
I just had a look through your photos - some very striking similarities in the redness/flushing and the way it shows up (on your neck, face, and arms) - but also was surprised to see that your swollen fingers look the same as mine (the same type of puffiness and swelling in all of your fingers) - I find my fingers tend to do this most mornings - I dont know what exactly... but I guess my hands dont like something im doing when lying in bed / asleep. If I have a particularly bad day of flushing, I will also get the same red blood vessle-iness in my eyes - im not really sure why this happens... the firs time few times it happened I thought I must have accidentally poked my eye...and was trying to figure out how i'd managed to it repeatedly...and without realizing it? haha - I haven't figured out what causes it exactly...but it seems to resolve on its own after a day or two so doesn't bother me too much.
I will be sure to keep you and everyone here updated on an developments - hopefully the Rheumatologist can help me figure out what the heck is going on. would be lovely! haha
Thanks for your relpy Alina, I hope are having a good day today and are feeling well - (and that your 'corpse feet' are giving you trouble! ;) )
Alina Delp said:
Hello Meowmachine.
I am sorry to say your pictures and the way you describe your symptoms are all too familiar. I don't know how to post a link to my photos but if you click on my name and go to my page you will find an option to view my photos. You will find every thing you mentioned ...Levido reticularis, Raynaud's, Burning redness, swelling, and blue skin. These happen all over my body like yourself. My Doctor couldn't believe his eyes yesterday as my feet were blue/ black while my arms and face were burning and red. He said my feet looked as if they were the feet of a corpse. He gave me his stool to put my feet up and within a minute or two they returned to normal. I was told by my doctor the collection of symptoms is called a Neuro Vascular instability. This isn't a disease but more of a name for the collection of having the Symptoms from EM to Raynaud's Levido . Those being opposite ends of the spectrum. Not every one with EM has all of these although Raynaud's seems to be somewhat common with EM.
That said it doesn't mean you have the same thing just that it is possible and worth looking into further with your doctor.
I know you said you don't think it could happen to you because it is so rare but rare things still have to happen to some people so please don't discount the possibility and keep looking into it.
I hope you get some answers at your next appointment. Please keep us updated to how it goes.
Thank you for the well wishes Meowmachine. My day has just started and so far it is reasonable if that makes sense. What ever is its not terrible so I will take it!.
Yes…they believe I have a connective tissue disorder but lab work can’t seem to pin it down to any one specific disorder so my diagnosis is non specific connective tissue disorder. My rheumatologist can’t say with any certainty if this is causing my EM though I strongly suspect it is.
As far as the Neuro vascular instability I can’t get a real answer there just like EM they don’t feel comfortable saying this is caused by my connective tissue disorder. Probable because they don’t know much about Neuro vascular disorders and EM to make any definitive claims.
Just out of curiosity because we have so many similar symptoms…Do your hands feel broken when you are sleeping and when waking you move them? This type pain is different than the burning swelling of EM. They also don’t move at first so you have to slowly and painful wiggle them till they start m I Ving again. This only happens when sleeping. Strange right? It’s funny because at my pain clinic appointments they always ask what makes my pain worse and one of my answers is always sleeping!!! I bet they don’t get that every day.
I hope you are having a great day and reasonable as a worse case scenario. …just not a bad one would be nice
Take care,
Alina
I am not always red when I have what I call my burning sandpapered skin feeling. Yesterday, the skin on my legs was feeling like that and no redness. This can happen on my upper back etc. My eyes can also get hot and sore and sometimes the whites will be red, but at other times they are not.
I have to accept the erythromelalgia diagnosis because at times I have 'textbook' symptoms ('textbooks' of the more informed kind) and at other times my symptoms are not 'text book' but will mean painful skin in one way or another. I do have POTS (btw, one symptom is temperature dysregulation) also Chronic Daily Migraine (which is treated, although far from perfectly) and have come to think that perhaps my nerves are now over sensitized to pain. Which makes sense in one way, but then I am flummoxed when doctors/and my dentist tell me I have a high pain tolerance?
Curiouser and curiouser.
I do know that I am spending days on the net trawling for silk clothing that doesn't cost a fortune. It gets hot in summer as it doesn't breathe too well on my skin but is good in winter because it's soft and when I have to go out silk garments under some sorts of normal day wear can help. I was watching a TV series the other day and one of the female actors was wearing a long plain silk slip dress with a velvet coat over it and I thought 'perfect'. Given the actress was in her 20 and I'm in my 50s I highly doubt I could wear that look so well, but truth be told I am pretty much past caring. I will not endure one more second of pain than I have to.
Blue
MeowMachine said:
H Blue :)
Thankyou for your comment, I'm sorry that its taken me a while to reply :)
" I have noted that taking photos of how red I am can be sort of 'bleached' out a bit when I use my mobile phone. I have to take it against a white background to get the contrast and even then in the pictures on my phone makes my skin looks paler than it is."
This is definitely an issue! - trying to show the amount of redness in photos ever seems to work out that well ! Your comment about your symptoms such as flushing being really obvious, but by the time you arrive at your doctors appointment they've siginificatly fadded - UGH, again, I couldn't agree more - this happens to me a lot and is so frustrating - that is one of the main reasons I started to take photos of symptoms. Taking photos also helps me to remember as I have really terrible recall/memory. When my phone is getting a bit too full of photos - I transfer them to my computer and put all the photos in a folder - this way I not only have a photo of the symptom - but can look at the details/information of the photo and it will tell me the date, year and the time the photo was taken - so I find that's really useful if I want to figure out when a symptom first started - or compare photos of the same symptom to see if it has stayed the same or has gotten worse.
lastly; " I can really relate to sore red patches. I often have to strip down -- clothes will just hurt to wear them."
This! very much so! I spend a good 2 hours some days just finding something that isn't pajams, that I can wear to go outside. everything is very painful and feel intolerable to wear. its frustrating and ridiculous to spend 1 hour (minimum) up to 2 hours trying to get dressed - not to mention it makes you very very late for everything. I don't wear make up and generally wear fairly casual, non-dressy clothing... so its not fussiness over presentation that takes me so long :P I've only have 3 criteria when getting dressed.
- outfit must (almost always) consist of layers of clothing - so that I can stip off layers or put layers back on throughout the day. (otherwise i'm in real trouble - overheating - sweating, confused, thirsty, dizzy or on the opposite end I will feel freezing cold - start to get sore throat, and my muscles hate me and cramp up after a while because they have been shaking for too long - trying to generate some heat! )
- it has to be comfortable - I have a lot of trouble with certain materials (texture, thickness, tightness etc)
- I have to look reasonably presentable (a.k.a not going into the city in my pajams or a 5 year old pair of track pants and a t-shirt that's so soft its falling apart haha
- last criteria is a bonus really; I like the outfit to be flattering and have some co-ordinate at least a little bit - so no shorts, with socks and sandals and a huge thick baggy jumper on the top half ;)
I also find that my skin (and maybe muscles? I cant really tell) get very very sensitive even without the flushing/reddness episodes; sometimes my e.g. neck and shoulders, lower back, arm, scalp, hand, wrist (and so on) will look a fairly normal colour - but I am very very aware of the area - its bizarre to describe - its somewhere in-between a tenderness/soreness, tingling, and tickish feeling, it can last a few hours to a few days and really is quite painful (not in the sharp, very obvious pain - but more of a persistent, constant irritation/ extreme discomfort. - I find that the red patches / flushing probably happens more easily on days where I have that (whatever it is) happen.
blue said:
Hi Meow,
You seem to have some mottling on your arms -- very visible on your arms. I don't get mottling but I think others do. Your red patch on your upper arms looks similar to redness I get. I can get that sort of redness - on my arms and legs mostly. My face and neck tend to look a lot redder at these times. The soles of my feet go a deep dusky red and so do the palms of my hands. Today I'm red and hot, not yet burning but the soles of my feet are a bit blue-ish especially around the heel area.
I have noted that taking photos of how red I am can be sort of 'bleached' out a bit when I use my mobile phone. I have to take it against a white background to get the contrast and even then in the pictures on my phone makes my skin looks paler than it is. I'm going to have to buy a proper camera so I can take pictures to show the doc because once I get into an airconditoned building the redness and burning seems to calm down quite a bit. By the time I've waited my turn for an appointment I just look a bit flushed and the burning is much less intense.
The triggers you've mentioned are common. And I can really relate to sore red patches. I often have to strip down -- clothes will just hurt to wear them.
Apparently a rheumatologist is a very good doc to see for EM so hopefully he will be able to help you.
I'm sure a lot more people will come along with support and suggestions.
