I’m going to start of by saying that my life has never been such a rollercoaster until it hit 2017. I had so much passion, dreams, aspirations on what my future would be like and they’d be no persuading me otherwise. Cooking, baking, painting, hanging with friends (in all weathers), waking up early and going out wherever, having a window open to feel the breeze, dressing nicely in fashionable clothes no matter what the weather, having my hair up in a nice braid to feel the wind on my cheeks, this all changed at a flick of a switch. Now ..? Now its painting at the best of times, when the energy and drives there, cooking ..? Only if the heats bearable, baking ..? Only when the family fancy a brownie, hanging with friends ..? Well that’s a thing of the past, having a window open ..? Not unless I want to risk getting a Raynauds flare, having my hair in a braid ..? My ears would get way too chilly, so hair down all the time. I first started realising that I had EM this summer; it hit me, out of nowhere, however, the Raynauds ..? I’ve always been a cold person, I’ve always had that grey dead look to my face. It wasn’t till I got chilblains in December 2016 that my Doctor then explained to me that this is chilblains and you may have possible Raynauds (Later confirmed by a few blood tests and routine checks). The extreme discomfort of not wearing gloves or slippers on a normal day, or standing longer then 5 minutes was anything other then bearable. My feet would go bright red and other times extremely white whenever I felt like I was standing on fire or walking on ice, my hands would start to mottle red and white, it was weird, it was like as if my Raynauds had completely altered itself to react to heat the same way it does to the cold.
This picture presented is of my feet at one of their worst points (right picture), the worst being when veins start to surface (not very sightly), with the picture below being the morning after the flare up, and still remnants remained from the day before. It was scary, I felt physically sick. Why was my body acting so strange, at this point I had no idea what it was and thought that my body was already considered abnormal, so this must be another trait of that. It wasn’t till I mentioned this with pictures to the Raynauds group on Facebook that they helped me out with the name, and symptoms. This was it, this was Erythromelalgia …
Fast forward to October now, and I had a normal Raynauds checkup appointment with my Rheumatologist, I showed her a few photos of what my body was going through, that she then diagnosed me with Erythromelalgia. She personally stated that she has only ever (in her whole career) treated three people with EM, and 2 with EM and Raynauds (me being one). This shook me, how can I have both ..? So my body now reacts to heat and the cold increasingly more then ‘normals’.
After a while it started taking a toll on my body, I could no longer carry on work, I told the manager and my colleagues this, they stated how they understand, but I don’t think anyone will ever understand unless they’re put in this position and walking in my shoes.
I think it also hit close to home when having to tell my mum what was said at the Hospital, diagnosed with Erythromelalgia, finding a positive ANA for hn-RNP, but also low blood pressure (making it harder to be prescribed medicine). It was the ANA that caught my families eye, what was that ..? What did this mean ..? Not even the Doctor knew. She started saying how she can link this to the thyroid due to me having many symptoms of this, however, she said she really was not sure, could it turn into lupus, scleroderma, arthritis ..? Who knows, and quite frankly, I hope it never does form into anything. I asked what this meant for me, do I have secondary Raynauds or what ..? She then went on to say how having EM can be classed as secondary, however I’m in-between a rock and a hard place as the positive ANA has shown, but I can’t start treatment for what it is as its not positive enough …
Overall though it hasn’t affected my whole body so far (touch wood), its mainly in my feet as well as my Raynauds, only rarely do my hands become affected and show this (By becoming red, white or blue). Ill give you an example, having a Erythromelalgia flare up is like walking on freshly laid hot tarmac, it burns, and its not a burn you can easily relieve, you have to fight through it, whether you’re at home, out and about, or even walking. The discomfort cannot be put into words. Its not just the heat, it’s the side effects as well, like feeling as though your skin is ripping and stretching, the itching, feeling like you are riddled with insects and the only way to alleviate this is to itch it until the skin is broken.
I felt alone, my parents didn’t understand, I don’t class myself as having any friends as I just cant keep up, I wake up tired .. I have no energy to do most things that used to be a piece of pie when I was only a year younger, nothing was normal, its as if my whole life had been turned upside down in a matter of time.
A minute, an hour, a day or even two, there is no knowing how long a flare will last, and there’s minimal relief, I will just have to ‘put up with it’ until its gone or I just have to sit, rest up my feet, not walk until have found them to stop swelling, I cant dip it into cold water as then my Raynauds will flare and risk getting chilblains. Then if I was to get a Raynauds flare afterwards, I’d have to wrap myself up warm in blankets, under a duvet, socks, slippers, gloves, hat and a scarf for extra measures. For my EM to flare I can be anything over 20*C and anything under that for my Raynauds to flare, I am still in need of finding that happy temperature when my body is stable, however, it doesn’t need to be any certain season to have separate flares, it can still be winter an I’ll be having an EM flare, as well as summer and having a Raynauds flare. The mental damage it leaves you is astonishing, people could easily think, well you’re hot, you’ll get over it, its like you have a mini summer all inside your body, no, just no. The stress, the anxiety and overall the depression that floods over you is immense, I can’t tell you how depressed you get when you think about all that you have, how you have it for the rest of your life, will I ever get used to it ..?
Will I ever find happy medium between hot and cold ..? Will I always have to tell future employees and will they judge me as being ill and therefore not hire me ..? All of this and so much more flickers through my brain at any given second, even will I pass this onto my future children ..? At this present time in life, I have found no way to help manage it, at the moment its just putting up with it, simply taking it all in and dealing with it there and then, no medicine has helped, I doubt it ever will, and even if it did, what damage is it doing to my body in the long run ..? I have learnt one thing though, and that’s what triggers a flare, you ready for this ..? Standing, walking, cooking, showering, stressing, even thinking about something so little and getting anxious about it causes a flare, that’s how easy it is to trigger yourself, its silly, and then on top of that, no medicine is helping me. I went on 5mg of Nifedipine in March for a month, and this didn’t do anything but cause me severe headaches and dizziness (I later found out I needed glasses so don’t think that helped). After the October appointment I was prescribed Losartan, but turned them down once trying them for a month but not working out, although one did, allergy relief tablets (Loratadine), they have stopped the itching completely (however not the itching attached to chilblains unfortunately), although, I do recommend them big time !!
Family .. What I’d do without my family I do not know, they have been such a massive help in dealing with all of this its unreal (and it is just family, no dating for me at the moment), especially as they are also as new to this as I am, they’ve stepped in vastly to help out. Thing is, it’s the little things that you now realize that seriously put a massive smile on your face, like when they turn the heating off, or try to sympathize with what you’re going through and even leaving me alone when they know I just need my space. This is especially important when EM hinders you in doing what you used to love, its even the littlest of things like sitting down watching a movie that your EM can start up, or wearing skinny jeans, a scarf in winter, gloves, something to make you warm to prevent a Raynauds flare that eventually leads to you having an EM flare from being too hot. I now have to plan what I’m going to wear, can’t be too hot, or too cold, dressing has never been so hard, especially as a teenager who wants to dress fashionably, I want to look nice, however this disease mostly prevents that, one minute I’m wearing gloves, the next my hands are sweating and red, then white and freezing. You cant
just get up, spontaneously go out, do a massive job around the house, or anything, it all has to be planned around how you’re feeling on that day, and let me tell you, you wake up and feel like ‘do I have to do today, I just want 5 more minutes in bed.
I was surprised however to find out that you can have an EM and Raynauds flare up at the same time .. yes I know, weird right ..? Especially how one constricts blood flow, and one has too much blood flow, yes, you can have two at the same time and this picture proves it, my four other toes were mildly cold, but not to the point of going white, but my little toe ..? Well you can see for yourself, burning …I cannot explain how much the EM warriors have helped me throughout my EM experience. I would’ve felt so alone, like I was the only one going through this, but gaining so much support, and knowing that what you’re going through, so many others are as well. Since finding them a few months ago, and with a new trend sweeping the media my involvement in the EM community has increased.
Promoting the new #RedHandChallenge. I am now admin for the EM warriors RHC Facebook team and have started up writing my own blog with my experiences through it all and how I am going about dealing with it.
With all that has happened this year, I’m so very thankful for my family and the EM group for helping me reach this point in life feeling as though I am in control and my illness is not. I pray that my future is exactly the same, I’m able to work in a place where I’d like, I gain friends that understand what I go through, that I don’t get the snide ‘Well you don’t look ill’ comments but ultimately hoping the future is bright and filled with more positives then negatives, and if there isn’t, not to dwell so hard on the negatives (as I know that’s easy), for example, just because I have had to quit work in the past due to my EM becoming overpowering, I found strength through blogging.
If I had a message to those who think they may have EM, its to first talk to those who have EM, collect all the knowledge you possibly can on it, retain pictures of yourself going through a flare and how you feel, because more chance then not, you will be teaching the Doctor about EM then the other way round, and for those who already have it, you are not alone, just because its 1:100,000 (I know sounds ridiculous) and sounds much more ridiculous when you realise how many of us are out there, reach out, I’m pretty sure no one would reject and would definitely provide a gentle hand in giving support, I for one would be more then happy to help anyone who is having a rough time dealing with it all, I know, I’ve been there, I still am, but everyday is a new day, new emotions, new experiences, so don’t go into the day looking negatively on it, its what you make of it that counts.
This post is by Shadow’s Edge guest author, Bethany S. who writes the blog Young, Sick, Invisible. Bethany was diagnosed with Raynauds in March 2017, Erythromelalgia in October 2017 as well as low blood pressure a positive ANA and GERD in April 2018.