Knee pain has been a big problem for me since I was a teenager but it's not something anyone ever investigated properly.
When I was fourteen years old I suffered a severe chest and sinus infection that caused a high fever and suspected brain swelling. A few weeks later I became ill again, telling my mum that my knees hurt and I couldn't go to school because I had the flu.
When I was fifteen I was diagnosed with Myalgic Encephalomyelitis because no-one knew what was causing my malaise, joint pain and fatigue.
When I was eighteen I was admitted to hospital with severe pain in my joints, including my knees. The doctors didn't know what was wrong as my blood tests came back normal. They suggested my problems were psychosomatic because ME was fashionable at the time. My GP wanted me to see a rheumatologist so my parents took me to see a private doctor. I suffered a particularly painful examination and the doctor declared there was absolutely nothing wrong with my joints. He admitted to knowing nothing about ME but suspected it was psychological and was he was insistent that I should stop using a wheelchair and get more exercise.
The pain never went away. I started using a walking stick as I was unstable walking and I was referred for physio but that made my body weaker and my pain worse. By the age of 20 I had to use a wheelchair outdoors as I could no longer walk any distance without severe pain and fatigue.
I continued to have problems with my knees and six years ago after a bout of strep throat I had a massive flare of pain which was diagnosed as post streptococcal reactive arthritis. The pain persisted in my right knee and a local GP sent me for an x-ray but it came back as 'normal'. The pain was blamed on 'wear and tear' and I was told it was something I'd have to live with.
Everything changed when I was finally diagnosed with Ehlers Danlos Syndrome. Suddenly my complaints were taken seriously rather than being dismissed out of hand. A few weeks ago I mentioned my knee pain to my GP. I had been suffering swelling and tenderness under my right knee and a tender lump behind it. She sent me for an MRI scan to investigate the problem.
When I phoned the surgery for the test results I was given a vague message, 'Consistent with Ehlers Danlos syndrome. No further damage'. I was a bit disappointed. It didn't really tell me anything and I thought my problems were going to get swept under the carpet and ignored once again. I made an appointment to speak to my GP about the results and what I found out I have a wobbly knee cap!
After 25 years of problems I finally knew what was wrong. My patella showed lateral tilt and subluxation which could be due to patellar instability. I had a slight patella alta, dysplastic flattened trochlear notch and early patellar chondromalacia.
In English that means my knee cap is at a funny angle, it's too high, there is no grove to keep it in place when I bend my knee so it partially dislocates, and the back of my knee cap is worn down more than it should be.
This fits with my diagnosis of Ehlers Danlos Syndrome and explains why I have found it so difficult to walk and exercise. I don't have a fear of moving or hypersensitivity to pain, I actually have a physical problem. It's news I didn't want to hear but it is reassuring after so many years of disbelief.
The next big question is what can I do about it? I have been referred to an orthopaedic surgeon to discuss my options. In otherwise healthy people they would do surgery to correct the problem but EDS complicates things and could potentially make things worse. It looks like I have some hard decisions to make but I'm hoping I will be given a few options regarding my potential treatment. I am frustrated that it has taken this long to find out what is going on but at least now I have a way to move forward.