On the day I was given my diagnosis of complex regional pain syndrome, my doctor took the time to explain exactly what the name meant. He went word by word, starting with “Complex? Well, as you can see it’s a complicated illness. Regional? That means it generally starts in one place and if you’re lucky, it stays there. Pain… I don’t think I need to explain pain to you. And syndrome? That’s because we don’t really understand how it works and it’s the best word we’ve got.” His candour simultaneously worried and impressed me. It’s refreshing to have a doctor who’s honest with you, but more than a little concerning when their opening statement stresses that they don’t really understand why CRPS happens and how to get rid of it.
If you search for the definition of a medical syndrome, you’ll find that it’s a “set of signs and symptoms that appear together”. You can’t call CRPS a disease, because that implies a recognised “particular abnormal condition, a disorder of structure or function, affecting part or all of an organism” and we still just don’t know if that applies. It definitely qualifies as an illness, “a condition of being unhealthy in your body or mind”, and for the unlucky ones it’s a chronic illness, but that simple word ‘syndrome’ betrays a lot about what we know and what we don’t about the medical causes and mechanisms of CRPS.
If you do enough googling, you can come across examples of sufferers with problems in almost any part of the body that they believe are linked to their CRPS. As a patient, it becomes a real problem. In my own personal experience and that of many fellow sufferers, general health goes rapidly downhill after a CRPS diagnosis. The question then becomes: am I experiencing this new problem as a direct result of my CRPS, is it a simple coincidence or does it fall somewhere between the two, as a problem that is connected, but not directly?
In my experience in the UK there is currently a reluctance amongst doctors to explicitly link further health problems directly to CRPS. The reality is though, that there are certain issues that are developed by many CRPS patients, too many for it simply to be a fluke. Richard Lowes has written eloquently about CRPS and heart problems, dental health, problems with surgery and I’ve looked at its impact on the thyroid. The question here plays directly into that careful use of the word ‘syndrome’; we simply don’t know enough about how and why CRPS happens, to be able to chart definitively its systemic impact on the body.
One area where many sufferers seem to experience problems is with their eyes. Following Richard’s article on CRPS and the eye, I reached out to the sufferers I know to ask if they’d experienced eye problems post diagnosis. The response was immediate and significant, ranging from those who’d had perfect vision before to people whose sight had rapidly worsened after CRPS. Here’s a small sampling:
“Before CRPS I had no vision problems. My vision was 15/20, do not wear glasses. Since I was diagnosed, I have double and blurry vision, especially when trying to read. I also have dry eyes.”
“I can’t cope with bright light anymore as it gives me huge headaches.”
“Since I’ve had CRPS my eye sight has deteriorated to the extent that I can’t see well enough to drive and I’m registered partially sighted by RNIB. I have tunnel vision so on top of the normal CRPS problems I misjudge the area around me if I am in unknown surroundings leading me to crash into doorways etc.”
“My eyesight has become a lot worse. I now have to wear my glasses all the time and I need strong prisms in them.”
“I have dry eyes too and get eye infections regularly. The last one was really bad and I could not see at all out of one eye for nearly 2 weeks.”
“I always had great vision until CRPS. Now my eyes are puffy and red and dry, sore even itchy.”
The correlation is too specific and too common to be mere coincidence. In my own experience, I had worn reading glasses for close work since university. If I forgot my glasses on a work day I could generally just about manage a day of staring at a computer screen, but I might pay for it with a bit of a headache on the way home, which generally cleared with a couple of paracetamol.
Since the onset of my CRPS my sight has not worsened, but I now have to wear my glasses much more of the time as without them, the headaches are rapid and crippling. Ten minutes looking at my laptop without glasses can result in a migraine that sends me to bed in a dark and silent room for the rest of the day and possibly the next. When I discussed this with my optician, she felt that there was a link between my pain and my eyesight, but an indirect one; simply put, my body is under so much strain from the constant massive assault of terrible, pounding, exhausting pain, that every other issue I may have is just that much harder to bear. My system just can’t cope with all of it. In my case, I think she’s absolutely right. I think it’s exactly the same problem that has seen me taken to hospital by ambulance when a simple tonsillitis became potentially life-threatening and that led a previously unproblematic wisdom tooth stuck in my jaw to become a hideous infected mess requiring emergency dental surgery.
And this is exactly where the difficulty lies, both for us as sufferers and for our physicians. CRPS is the most painful condition known to man. If you don’t believe me, check out the McGill Pain Index. The pain of complex regional pain syndrome is calculated to be the same as experiencing amputation of a finger without any anaesthetic. And CRPS patients experience that pain not once, but every second of every day, often for the rest of their life. Under that kind of strain, I think anyone’s body, regardless of fitness, age or health, would begin to buckle under the pressure. Therein lies the rub. Until a cure or an effective treatment is finally discovered, until we can finally get rid of that ‘syndrome’ tag and replace it with something more definitive, every CRPS patient will continue to experience new symptoms that, regardless of whether it’s acknowledged by their doctors or not, are without doubt linked to their constant pain. Pain is designed to be a warning system. It’s meant to shock us into getting away from whatever is causing us harm. When that warning mechanism goes wrong and the alarm bells ring all day every day, then the body it’s meant to protect will simply start to collapse under the strain. Here’s hoping for a breakthrough before too many of us collapse completely.