I’m wondering if we all have something in common that we haven’t yet realised? A trigger point? A history of something in common? Why us? Something has caused EM! But what? I have a feeling if we dig deep enough we may well find a common cause. Is there some way of doing an anonymous survey of our pasts, possible triggers? I’m not certain but I think perhaps a cause could be a psychological one. Not in our minds but a stressor common to us all. Some common thing that has tricked our minds into a change of neurological functioning. When I first joined this group I wanted support. Now I want a cure and a reason for it happening to us. There just simply has to be a reason.
I have thought the same thing several times. I think it would be very enlightening if we were to find a commonality, even in the broadest sense. It could shed light on something that, perhaps, the doctors have not considered.
Hmm, i guessed so, too... what I do realise is that, if I feel stressed or sad, the pain is worse... I have always reacted to psychological stress with physical symptoms, but maybe this is a common problem?
And there is one other thing, i keep asking myself if it may be part of EM: I often have visible, purple veins on my hands and arms... maybe I can upload a picture...
100-P_20150330_175019.jpg (432 KB)
I am not entirely sure if the visibilty of these “lesser” veins would impact. I have always had highly visible veins, but I believe that is mainly due to my fair skin. (Sometimes it seems almost transparent.). Your hand looks like it is cold in the image.
I think the most likely things, going back to the thread subject, that may be common could be:
- Major psychologically traumatic events/periods in our lives
- Medication/toxin exposure
- Illnesses or injuries
- Lifestyle
Numbers 1 & 2 are what I feel may be more likely categories, but then they do seem the broadest categories as well. If an anonymous survey were to be conducted, I feel that the best way to categorize would be to ask about the broad view, and then narrow it from there. For example, asking to indicate whether or not a traumatic event or period occured in life, then to indicate the type of trauma. It could be extremely personal. For example, and I don’t really mind saying this, I was sexually molested by my stepfather for years at a very young age. This led to my being taken into state custody, hospitalized, and put to psychological and medicinal treatments.
We may also find that we need to do a little digging, as well. When you consider the possibility that environmental toxins may be a possible contributor to the problem, it would mean looking into the history of the places that you lived. Finding records of water quality/treatments for that area. It may be a combination of a few things, but that all have the end result that is EM. If I am not being as clear as I would like, I apologize. My main point is that finding a commonality may or may not be a quick and painless process. It would take time, dedication, and resources. I would not mind doing the research on the environmental part, so long as people wouldn’t mind giving the location information (and possibly how long they were there for, as prolonged exposure may be key). I will see what kind of survey I can come up with and post it soon on this thread.
I would be interested what the moderators think about this, being new to the group it may be something that has previously been brought up. Like Wolfblood I also have always had physical symptoms related to emotions, which as you say is probably the same for most people, EM or not. Before I got any symptoms of EM I was diagnosed with PTSD and have suffered from anxiety for the last 18 years.on the physical side 10 years ago I was living in India and had a major allergic episode which landed me in hospital and for several years continued to break out in huge hives even after moving back to NZ. Was told I had an antigen/antibody syndrome??? Can’t find anything about this. Also as a child I used to get terrible peeling feet with deep cracks around my toes making it almost impossible to walk. This happened every summer but it stopped as a teenager. I don’t recall it ever being diagnosed.my childhood was pretty traumatic. And have always been highly strung and very emotional. Whether or not any of these things could be tied in to getting EM as an adult is hard to know.
I lived in Bremen, Germany my whole live... the only places I did go on holiday are the Swiss, when I was 9 and Kroatia, when I was 1 year old... And I was a mobbing-victim... but I never took any psychological treatment. I do have a rather bad immune system, tough... but that may be because I was born 1 Month and one day earlier, than I should have... could this also be a Thing we have in common? Or were most of you born in time or later?
It’s a really lovely idea that if we filled in a questionnaire one possible common cause would jump out at us. TEA have done member research and it is an interesting read if you have not seen it.
What we all have in common is probably just the symptoms of one or more hot red extremity.
Some facts: Mads please correct me if/where I am wrong! />
People with early-onset EM usually develop it before they are 25, some of them under one year of age. Many of these have the mutated gene SCN9A and most will have inherited the condition.
EM can be secondary to medical conditions such as neurological diseases (e.g. multiple sclerosis, peripheral neuropathy), autoimmune diseases (e.g. lupus, diabetes mellitus), or one of the myeloproliferative disorders.
Many cases are reported to have started shortly after surgery. Some people developed it following antibiotics or believe it was caused by exposure to toxins or by extreme stress.
In recent testing of 200+ EM sufferers carried out by Xenon 5-7% of people tested had the mutated gene SCN9A and most will have inherited the condition. Xenon are now searching for another gene which may be responsible for familial EM.
Ideopathic EM develops spontaneously without any associated underlying disease so perhaps there could be research for a common causal factor there.
Just as there are many triggers there are many different symptoms in different parts of the body. Some people have only head flares or foot flares while others have the whole shebang. We have members who developed it during pregnancy and others for whom pregnancy brought remission.
Not surprisingly we also have very different reactions to medications. The same medication which made me ill and did nothing for my EM is used successfully to bring relief to other EMers etc. etc.
Just my opinion but I see EM as an umbrella diagnosis, lots of different conditions with similar symptoms.
PS. I was born two weeks late as was my daughter with EM.
It is only natural to want to find a common trigger for this as I wanted to as well at first. As Nel pointed out there are so many different causes and people respond differently to treatments it’s may be impossible to figure it out.
I know major trauma or stress is often what seems to bring this on or make it worse but this alone can’t be the cause because everyone would have EM.Every one has experienced this in their life. Unfortunately no one can escape this thing called life. I think stress plays a role at times in letting what is all ready there run rampant. Your body fights of disease everyday. When you have a stress event whether it be a physical or emotional trauma your body gets too busy dealing with that and can no longer fight off what is trying to take over in your body be it a common cold or EM.
EM is hereditary in some and is more of a symptom in others such as those with blood disorders , autoimmune or neurological disorders just to name a few .
I wish we could find the culprit. I just don’t know that it’s going to be possible. For everything we find in common there will be many many other people subjected to the same thing such as stress, environmental factors or medications that don’t have EM that in the end it will still be inconclusive.
I hate to be a bubble burster.
If you still want to give it a go I will tell you about myself.
I was born in Oklahoma but traveled all over the US until settling in Tacoma Washington for the last 20 or so years.
I have had major emotional Trauma as a child but as an adult have been and continue to be very low stress. My EM became horrible after having a Hysterectomy but it was present in a much more mild state for 10 to 15 years before then. for several months before my surgery o started having other medical symptoms such as an unexplained blood clot and joint pains just to name a few. I wasn’t taking any meds prior to EM other than Tylenol and ibuprofen.
I was very active and physically fit Eating healthy foods sprinkling in a bit of junk food .
That’s about it I think.
Thanks Nel and Alina for your comments and info. I can see now how complex the causes can be. Being so new to this EM I realise my knowledge on the subject is very small and somewhat naive. You both as well as Mads are so knowledgeable on the subject, I’m really impressed. The three of you should write a book. What exactly is idiopathic EM? Despite working in the medical industry I admit I have trouble understanding some of the terminology relating to EM. Interestingly at work yesterday we received a referral for a patient to sort out his vascular issues but when we read the referral my boss and I immediately noticed he had many symptoms of EM. Considering my boss used to be a rheumatology intern, prior to me being diagnosed with this, he had never heard of it before.
Hello again Heidi.
We only have what knowledge we have from our own experience mixed with all of yours. I had little knowledge about it until I joined this sight. I just assumed all EM was like my own until I joined on here. Unfortunately most of the knowledge stops with what happens and the why is left unanswered.
Idiopathic is just another word for unknown cause. Genetic is genetic , some cases are known to have specific causes ie as result if autoimmune , med reaction , blood disorder then there is everyone else… idiopathic.
with a diagnosis of idiopathic EM this just means an underlying condition has not been found. It’s quite common to have that underlying condition diagnose later even years later in some cases in other cases the cause is never known.
I Sure hope your new patient doesn’t have EM but if they do it sounds like they came to the right place. At least you are familiar with it there and it might not take so long to get a diagnosis.
Thank you for starting this post. It’s from people like you getting the conversations started so we can all learn from each other.
Not naive! We all went through the same stages. It took two years to diagnosis and meanwhile my GP insisted it was due to stress, I thought it had something to do with adrenalin rushes I had been having or toxic chemicals because I had just decorated our living room and the Chinese herbalist I went to in desperation said it was because I took NSAID pills for arthritis It is natural when you get something like this to be desperate to know where on earth it came from. I felt if I knew the source we could put the source right and the EM would go away with it. Little did I know. Once diagnosed the neurologist and dermatologist between them tested for everything which could cause ‘flushing’ and all came back negative even though in my case aspirin helped and that can mean a blood disorder. Along the way I learnt a lot and it is good that we question and learn from each other:)
Idiopathic just means cause unknown!