I woke up one night at about one am in the morning in absolute agony; it felt like someone was trying to hammer a six inch nail through my right foot. From that moment my life was instantly turned upside down and I spent the next six months in a wheelchair.
It started three years earlier when I was told that I might have gout and arthritis. Finally after three years of x-rays, blood tests, emergency visits to accident and emergency (A&E) and two MRI scans, it was confirmed that I had complex regional pain syndrome (CRPS) and bone marrow oedema, with hairline fractures in my right foot.
Apparently three years is not an unusual timescale for reaching my diagnosis. In all of that time none of the doctors and A&E staff that I met (and there have been plenty of them) had ever heard of CRPS. Doctors at A&E have apologised saying
‘Sorry I have never heard of your illness can you tell me anything about it?’
I now have a page of typed out notes that I take with me to A&E to give to the doctors and they all say that it is really helpful. Only the rheumatology consultants at the main hospital seem to know about CRPS, though my GP has a better understanding of it now, having treated me over the last few years.
My treatment involved a drug commonly used for the treatment of bone damage caused by breast and other cancers. Fairly soon I was out of my wheelchair and getting about on crutches. The next stage involved four months of physiotherapy exercises for my feet and legs.
Now, one year later, I use a walking stick and have to be careful not to walk too far in the day otherwise my foot will swell up a bit in the evening and hurt at night. I have been told that it might not get much better than this- but that is not too bad, after all, I am a 60 year old man and there are a lot of people with far worse health problems than mine.
The most useful suggestion I can give someone with a rare disease who might end up in the hospital emergency department fairly frequently due to their condition is to prepare a brief note/ letter that explains your condition, for example:
- Your name and date of birth.
- Your NHS number.
- Confirmed diagnosis – with a short explanation of your rare disease to help doctors, nurses or ambulance crew that may have never even heard the condition.
- List of all medication (including dosage and frequency).
- Allergy information (eg allergic to statins).
- List of tests (eg x-ray in 2015, two MRI scans in 2016, colonoscopy in 2016).
- Name of hospital/s you usually attend and your hospital patient number/s.
- Usual permitted hospital pain relief.
- Your doctor/GP’s details.
- Next of kin details.
I hope some of the above information might help you and good luck with your rare disease!
Update provided April 2019
In the 18 months following the publication of my experience blog my condition temporarily improved. However, I have also experienced sudden flare ups meaning I rely on aides such as a wheelchair, crutches, or walking stick. My choice depends on the severity of the flare up.
Sometimes my flare ups can be managed at home with a course of antibiotics, but others requite visits to A&E, blood tests and intravenous antibiotics. There are no new treatment options available at present so I am learning to adjust to my new life and getting on as best as possible.