Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'VL's Story'


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Hello, my name is VL, I am single and have no children. I always had sensitive feet. I recall always looking for foot lotions and stuff. I never took real care of them, taking them for granted. I couldn’t quite figure out why my feet were so hot, but my EM had a full-blown flare AFTER I went to a podiatrist and he ran a rubber device along the bottom of my feet. Hours after returning home, I couldn’t walk. I couldn’t bear anything touching my feet, not even a blanket. It was horrible. I was in bed for about 3 days, unable to do much of anything. It was at this point in my life that I was diagnosed with Erythromelalgia (mostly in my feet).

Before I was diagnosed I used to love jogging and doing aerobic boxing and calisthenic exercises, I also played squash (and still do today). I currently work from home, I'm a lawyer who practices mostly on the internet (International legal consulting, though, increasingly, litigation)

Before I was diagnosed I searched the internet looking for help. I went online on the Yahoo Groups and pored over people’s stories. I tried this and that. Read everything. I dId my own research once I believed I could learn no more from the people on that site. I found it too depressing and hopeless. I refused to succumb to that “woe is me” thinking so decided I would tackle it, myself. Being a lawyer, I’m quite adept at research and I found an obscure article (obscure for laypersons, like myself) about small fiber neuropathy and the similarities with EM. I tracked down the doctor, who happened to live an hour away. I was unable to see her, but did see her colleague who had juried her article. The diagnosis was pretty easy, I made an appointment and was prescribed medicine.

I flare mostly in my feet. However, before I was prescribed medicine, my lower legs were also quite painful. I don’t know how

to describe it except that it felt like my legs had a pole in them, trying to expand. Whenever I am barefoot I flare for an extended period of time. If I don’t wear tennis shoes ( Brooks) I end up hurting my ankles and feet. I just recently noticed this pattern. I manage to cope with the flares with my prescriptions. I take Nabumetone (500 mg). it's the only thing I take now, with High Blood Pressure medication (Diltiazem). I used to take Effexor (Venlaxafine) and Clonazepam to sleep at night. I weaned myself off the latter two, just to experiment. When I saw that I was still functioning, without them, I stopped taking them. Nabumetone is essential, however, although I take it only 1X per day, I am allowed 2x daily. I mainly trigger due to psychological stress. Stress really doesn't help.

My biggest tip for someone who is going through the same is do things. Even if it hurts. Listen to music. That helped me a lot. Do not focus on the negative.

I know it’s easier said than done, but I believe that daily stresses impact your fears. Do Not Focus on the Negative. Seriously. Remember the things that make you happy, and delight in them. The moreyou occupy your brain with positive things, the less you’re focused on the pain. It will subside. I truly believe this.

Also, I believe people need to KEEP MOVING. Don’t let your feet stay in the same place for any long length of time.

My illness has impacted my life as now I can't wear the shoes I used to love. Now it's only Merrill and Brooks (tennis shoes). Being diagnosed with EM has stopped me from walking long distances, although I have done so. I am nervous about walking long without a place to rest my feet. I wish we could get handicapped cards for EM. I’m really “lucky” that my mother has one and I own the car. When I need to, I take advantage of it.

I stay positive by giving my Amazon donations to the EM Association (Amazon Smile) I also play squash, believe it or not. I think squash is perfect because I am never on the same pressure points when I play. That being said, if I play for too long it can hurt a bit. But overall, I believe people need to KEEP MOVING. Don’t let your feet stay in the same place for any long length of time.

I hope that for the future we find a cure, and that everyone benefits from at least one suggestion I’ve made. Life is short. We must make the most of it. Don’t let the pain become your raison d’etre. I love that Young, Sick and Invisible does these blogs, it's a wonderful idea, giving people ideas and hope.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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