Where do I even begin…? December 2016 would be good start. The date where it all began. I remember it all so vividly, it’s like my eyes weren’t really open until December hit and boy was I in for a surprise.
The weather was around 9 degrees and icicles had begun forming under my nostrils. Despite the weather I was getting my life started. I was looking for work, starting driving lessons and ultimately beginning to feel like an adult. It was about the start of December when my feet started acting weird. They looked like they belonged to a corpse. I’d wake up and my toes and fingers would be purple. They would feel like pins and needles or I couldn’t feel them at all. I didn’t have time to piece things together though. I was beginning my adult life. Onwards and upwards my friend. Driving lessons were around the corner, I mean, I was so excited, who wouldn’t be?
A few weeks had passed and it felt like I had been driving for years. Then in mid-December I woke up with distinctly purple toes. I’m not talking a light bruise sort of purple. I’m talking deep purple, like black purple. I brushed it off though, like heck, my body’s weird already. I’ll just add that to my list of oddities. I hopped into the car and hit the clutch … WOWZERS … I can still remember the pain. It was like someone pushing my feet into a pile of needles. Why the hell did I feel like that? I walked myself home and immediately threw my shoes off. On two of my toes, on both feet there was a circle, a perfect circle on the sides, purple, soggy looking and green under the nail, gross right?
I decided to put my life on hold. Not because I wanted to, no, because I HAD to. Two months of not doing anything, having to cancel everything as walking became a chore. I was gutted, no interviews, no driving and generally not doing anything other then laying or hopping around the house. It was time to see the GP. I so dread a GP visit.
After the first GP visit I had I was told it was a benign Neuroma. I was referred to a rheumatologist for an ultrasound of my feet (how exciting!!!). A month had passed (3 months altogether) and whatever it was on my feet was still there, so another GP appointment was in store for me. Deep joy…
Hospital time. I had been referred to a rheumatology department by my GP, for what I thought was just cadaver looking toes. It turned out to be chilblains, which then turned out to be Raynauds. Raynauds? What in the world is that? Sounds like a fancy French dish to me.
“Raynauds is a condition of the circulatory system in which blood vessels in the fingers and/or toes spasm in response to changes in temperature, which causes them to turn white, blue, purple and red as the supply of oxygen is diminished. Raynauds may occur alone or be part of another condition.”
Now that’s what scared me “may be a part of another condition”.
Oh man, it’s hot … 30 degrees and sweat is dripping off of every orifice I have (TMI I know). I have now been officially diagnosed with Raynauds for a while so it had become a part of me; I was trying to figure out ways of dealing with it and trying to cope. Luckily summer wasn’t much of a problem for the cold. What was a problem though was the heat. My feet looked like raw chipolata sausages, bright red and so sore, not sore as in a cut sore, sore as in I’ve only been standing for 5 minutes but it feels like I’ve been standing in the heat barefoot on hot sand for an hour. The heat was affecting me more then usual and this was when I took to finding support on Facebook groups. Everybody had started mentioning something called Erythromelalgia to me. Now what in the world is that? Sounds hectic and man were they right about it.
Another hospital appointment folks, how fun. I showed my rheumy all my photos I had compiled of my tomato toes and sausage hands during the summer hoping, but dreading something would come of it.
Ah, Erythromelalgia. They were right.
“Erythromelalgia (EM) is a rare condition that primarily affects the feet and less commonly the hands. It is characterised by intense burning pain of affected extremities. Severe redness and increased skin temperature.”
This wasn’t all I had found out. I also have low blood pressure and a positive ANA. A positive ANA (Antinuclear Antibody) means there is an antibody within my body fighting everything, my blood, organs, the lot. The ANA will usually show you what secondary Raynauds you may have, whether that is Lupus, Scleroderma or a rarer condition. They have no clue what it may evolve into or if it will evolve into anything else at all.
Who’s ready for some more weirdness?
This really nasty stuff starts happen to my fingers. That’s not only the best way to describe it, but really the only way I can describe it. In a nutshell all 10 of my fingers:
- Form crusty calluses around and under my finger nail
- Have brown, red and purple spots around and under the fingernails
- The whole finger becomes incredibly sore, the smallest of things that come into contact with my fingers makes me flinch with pain
- The whole finger, from knuckle to nail, itches like crazy
It came totally out of the blue, on all fingers and has continued on and off since December 2017. After a trip to the GP, she ruled out a fungal infection and referred me to see a dermatologist. The dermatology appointment was fantastic. She looked at all the photos I had taken and asked for me to send them to her, not only to be put in my file, but to be used for research. I received a letter from the appointment a few weeks later stating I have another appointment in November for a scratch test (to see if its an allergic reaction). However the doctor believes it to be Subungual Hyperkeratosis and/or Pompholyx.
Snow. Snow everywhere. Thick socks, a hat, gloves, winter boots, winter coat and jumpers. Yet my toes would not take to the warmth. Then came the EM. Once I tried to warm myself up the EM would flare up. Ergh, when will this ever end?
It was a few weeks into March when I woke up at 4 in the morning feeling like I was going to puke, that uneasy feeling in my stomach and the light-headedness. Nothing came out, but that feeling never left. I went into work feeling like I was going to vomit everywhere. It makes you feel on edge, like what if I did puke everywhere? How embarrassing. The only thing that stopped this feeling? Eating. I decided to visit my nearest pharmacy. They informed me that it sounded like acid reflux, but if this problem persists longer than a week then a GP visit should happen. It was time for yet another GP appointment. Turns out that it is in fact GERD.
“Gastroesophageal reflux disease, or GERD, is a digestive disorder that affects the lower esophageal sphincter (LES) the ring of muscle between the esophagus and stomach.”
Great, another thing to add to the list. On the plus side though, I was prescribed meds that completely made it vanish. Since then it has vanished unless I eat or drink something my stomach doesn’t like such as juice, a fizzy drink or weird fruits and vegetables.
My rheumy appointment hath landed, it was same old, same old really. Until I mentioned joint pain. My pain is really weird, it used to last a week a month on just my right wrist and right ankle. Now, it’s still in the same places, but pops in every day. That’s when my rheumy mentioned “”Hypermobility”.
“Joint Hypermobility Syndrome is a condition that features joints that easily move beyond the normal range expected for that particular joint. Hypermobile joints tend to be inherited.”
Explains why my hip pops out of place every now and again though. I dread to think what this means for the future. That’s where today comes into play; onwards and upwards all. I have four more appointments this year, three dermatology and one rheumatology. As you can see, it’s become a habit that at every appointment that I have something new diagnosed.
Stay tuned though. I’ll be sure to keep you all updated on my roller coaster of a journey.
Bethany is a 20 year old from England; she suffers from Raynauds, Erythromelalgia, GERD, Hypermobility, Anxiety and Depression. She is also the creator of Young, Sick and Invisible a Chronic Illness Blog.