The Torture of Misdiagnosis
Updated: Mar 16
I have lived my entire life suffering from numerous health problems. These started from when I was diagnosed with an Anorectal Malformation at 4 months of age and had my first surgery at 8 months. My medical history is messy and long and I have multiple folders an inch thick at both the Children's hospital and other hospitals I have been to since I was booted from the children's system. This post isn't about my entire, messy, medical history, it is about one small part of it which caused me significant pain and still does to this day.
About 7 years ago I started to get flare ups of extreme joint pain. Initially I thought I had the flu but when it kept happening I knew something else must be going on. This happened on and off for about 6 months before I finally went to a doctor. I was then refereed to a rheumatologist and after another few months wait, I got in. I had numerous blood tests done as well as x-rays and an ultrasound. My blood markers were normal but based on the ultrasound and my response to cortisone, I was diagnosed with rheumatoid arthritis.
This diagnosis was a bit of a blow at the time as the joint deterioration and other co-morbidities that go along with rheumatoid arthritis are scary for a 23 year old women to face. Especially one who already has a long history of doctors, hospitals and illness. I was started on one medication which didn't help, so they tried another and then the just for fun they thought they would mix it up and put the two of them together. In the mean time I had to have monthly blood tests to check my liver function due to the nature of the medications I was placed on.
I stayed on this combination for about 6 months with no improvement. In the mean time I lost half my hair due to the side effects of the drugs and caught every cold, flu and cough going around because of the immune suppressing nature of the medication. I had to go part time at work because the joint pain was so severe and had become constant and I was constantly sick and fighting some form of illness.
After months of this with no improvement the rheumatologist decided I probably didn't have rheumatoid arthritis after all. She said It was more likely I had Fibromyalgia and said my GP could work on pain management with me and I no longer needed to see her. I was in constant pain but she was no longer interested in helping me. So I went back to my GP and he prescribed me a medication to help with nerve pain (which is what Fibromyalgia is).
After staying on this medication a decent amount of time and continually upping the dose with absolutely no benefit, my doctor decided I could come off of it. It's one of those medications you have to wean off because your body becomes dependent on it. So although I saw no benefit what so ever to my pain, apparently my body still wanted it, because coming off of it was hell. The withdrawals were intense. I had severe itching, insomnia, shaking, anxiety, suicidal thoughts. It was honestly one of the worst periods of my life.
I was then put on another medication, at this stage my GP admitted he was just experimenting because he had no idea what I had. I was extremely fortunate to get a small amount of relief from this medication, possibly due to it's slight anti-inflammatory properties but we still aren't sure. All tests came back negative for the condition they thought I might have. So I was still in limbo but with a small amount of relief.
I have since been given the diagnosis of psoriatic arthritis. I was diagnosed by a rheumatologist but I am not under the management of a rheumatologist. I was fortunate to gain relief from most of my symptoms while I was pregnant and through the first year of my sons life. This has been a huge relief for me not just because of the reduced pain levels but I've been able to take a break from seeing doctors about it for a while.
I have found over the years I get fairly severe doctor burnout. I eventually hit a wall where I just can't deal with the thought of explaining everything again and having to sit there and feel like a crazy person because anyone who hears my medical history finds it hard to believe. One person with so many unrelated conditions seems implausible to most people. But eventually I will have to go back and try to find someone who can help me. My symptoms are already beginning to worsen again and it does make looking after an energetic 15 month old tricky at times.
It's hard when you have an obscure condition and you end up feeling like a guinea pig while doctors trial and error medication on you. It is physically and mentally draining and has definitely taken its toll on me over the years. Having a label for my condition helps, at least I have something to tell people but I fear I still have a long journey ahead managing my condition with potentially more diagnosis changes down the road. Only time will tell.