woman sitting on a stool holding her leg

Living With the Most Painful Condition Known to Medicine

A young person shares her experience of living with a "invisible" disability that causes her chronic pain

Mental health and wellbeing
By VoiceBox ·

Alice (not her real name)

A young person living in the UK

Living With the Most Painful Condition Known to Medicine

I have the most painful condition known to medicine

Yes, the most painful condition known to medicine - ranked more painful than amputation.

Looking at me, you'd never know. I smile, I look normal, I wear fluffy socks - why not. Except I wear them for a reason.

I have Complex Regional Pain Syndrome (CRPS). Google it, and you'll see some pretty nasty pictures. Unfortunately, they're accurate. CRPS is a chronic pain condition usually resulting from an injury, like breaking a bone. 

I lie in bed at night and scream because the pain, soaring through both my feet and legs, just won't stop. Nearly all CRPS sufferers complain of burning. A 24/7, never-ending burning pain in the affected area that is ice-cold to the touch but feels on fire. That's minus the massive swelling, stiffness, joint immobility, and mysterious shooting pains all over the place - I have CRPS in both feet and legs, cannot walk, and am housebound.

Nobody knows.

When I shower and stand still, I look down and see blue/grey feet.

When I try and walk, it's like walking on an amputated stump. I often collapse trying.

When I touch anything - shoes, bedsheets, floors, the sensitivity is unbearable.

There is no known cure. For me, it started with micro-fractures inside my feet, known as bone marrow oedema. I went to dozens of doctors, always in a cab because, duh, I can't walk. Eventually, I was diagnosed. Treatments are bare-boned, although IV painkillers or ketamine infusions are popular attempts - I say attempts.

I first developed CRPS 7 years ago and took 2.5 years to finally walk down a street. I tried acupuncture (not bad while it lasted), a nerve-stimulating TENS machine, lots of medication I regretted taking, and time. Eventually, I fell into remission, not understanding that it would come back. It did, two weeks ago, taking me by surprise and just as I was starting a new job.

Every day, I hop onto Zoom, all smiles with my new teammates. Nobody has a clue that underneath the table are two screaming, raw-red painful legs and feet and that I sit funny because it's the only way I can. At night, I get a few seconds of relief from touching my cool sheets, but the material is unbearable, so we're back to square one.

I didn't write this to complain. In fact, I've just started pulsed electromagnetic field therapy with a cute little device I carry around - it might be helping. But to the person who threatened to beat me up on a bus because I took the disabled seat, I'm standing (okay, sitting) firm.

If you're reading this and have an invisible disability, do not feel ashamed to claim the respect you deserve. If you are blessed enough to have legs and arms that work, appreciate them. If you're somewhere between the two, or have any other issue (health-related or not), remember that it doesn't define you. It's why I'm anonymous. 

Stay strong, do your reasearch, and remember that not every doctor always has the answers, but that doesn’t mean you should give up on trying to find a solution. 

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