A lovely woman I used to work with saw me wince as I tried to close a door. She asked all the usual, polite questions – was I okay, had I been injured – to which I replied that my shoulder was just inflamed, as all my joints were wont to do. No big deal; I was coping. A few more delicately presented but probing enquiries led me to explain that I had pretty much given up on getting any help from my GP: Osteopathy, yoga, and the Endometriosis diet were holding my body together, despite all the pain. She then told how all of her mother’s symptoms were dismissed as being related to old age, so she decided to keep a pain diary. Lo and behold, a pattern emerged, and her doctor could no longer continue to ignore what was actually happening. I remember thinking at the time that it was a genius idea, but, for whatever reason, I wasn’t motivated enough to try it. However, the slow deterioration of my right shoulder was about to force my hand (no pun intended…)
I awoke one morning with the usual feeling of having my entire body starched, but the pain in my shoulder had gone from bad to ‘anaesthetise me’. I could no longer raise my right arm above my head, and I definitely couldn’t bear any weight on it; even the gentlest sun salutation was no longer possible. One of my lifelines had been cut off. It was time to start keeping that symptoms diary.
It became apparent as the weeks went on that a pattern was actually emerging
I assumed (rightly or wrongly) that any medical professional would be looking for patterns, so I decided to document my symptoms for a minimum of twelve weeks. With the amount of pain I was in, three months seemed like an absolute age, but I kept reminding myself that it was simply a footnote at the end of two and a half years of gradually worsening symptoms. So every morning, without fail, I would use my mobile phone to make notes on how I felt when I woke up; adding additional symptoms throughout the day. It became apparent as the weeks went on that a pattern was actually emerging – with all the symptoms worsening in the last few days before my period, then returning to their regular state of aggravation once the floodgates opened. When I felt as though I had gathered enough evidence, I printed it all out and made, yet another, appointment to see my GP.
I recounted the tale, again, and, as expected, he ordered a round of blood tests…
My initial plan was to just step into the office, hand over the diary pages, and ask for a referral via a telephone consultation a few days later. However, on that particular day, I saw someone from the GP group that I hadn’t met before. He seemed to be showing actual concern, rather than giving me the brush off I was expecting; and, rather than just reading through the wad of paper I handed him, he insisted on me telling him what had been happening for the last two and a half years. I recounted the tale, again, and, as expected, he ordered a round of blood tests – you, know, just to ‘rule things out’. This time, though, there was the added extra of a cortisol test. I didn’t think that was a big deal until he told me that the blood would have to be taken before 9am. What the actual…? I could barely force my eyes to open before 9am, how was I supposed to drag my sorry carcass out of the house by that time? He had basically just told the Wicked Witch of the East to brush off the brick dust and get on with it. This blood test was going to be a challenge, but as I felt as though a doctor was listening to me for the first time in years, I knew it was a challenge I had no choice but to rise to. Little did I know, at the time, that the test results were going to make him mutate into every other GP I’d encountered.
On the morning of the blood test, I was stressed beyond belief. I had been so worried about missing that, all important, time slot, that I had slept in fitful shifts – waking often to check the clock. When the time came for me to actually get up, I felt as though I’d pulled an all-nighter and had to literally fight to get out from under the quilt. The time constraints also threw a spanner into the usually smooth morning household routine (the one where I am usually removed from the equation) which just made an already trying situation even more chaotic.
Then the bombshell. My cortisol levels were raised, therefore I was suffering from anxiety…
When I arrived at the blood clinic, at 8.45am (I was aiming for 8.30, but Jeez…), the waiting room was already full. I felt the uneasy combination of anger and disappointment start to well up from the pit of my stomach: anger at myself for not being able to move at the speed I was once used to, and disappointment at the thought that I would probably have to go through another morning of chaos to get this stupid test done. But, by the hidden hand of efficiency that simply ceases to exist after lunchtime, the little vampires moved very swiftly the waiting victims and my blood was taken with three minutes to spare.
A week later I called the doctor’s office for the results and, because patient confidentially doesn’t seem to exist at the reception desk, I was told that both my cortisol and prolactin levels were elevated and that the doctor wanted to discuss the results with me. Well, thanks for getting in touch – oh, wait… I dutifully made another appointment. What happened next is something I find quite difficult to write about as it still upsets me so much.
The doctor started by telling me everything that I already knew: this is not Arthritis, this is not Lupus etc, etc. Iron, B12 and Vitamin D were all within the normal range (my symptoms had been dismissed as Vitamin D deficiency before, but whenever the results were normal, investigations ground to a halt.) Then the bombshell. My cortisol levels were raised, therefore I was suffering from anxiety. Er, what now? He tried to convince me that this unspecified, nondescript version of an anxiety disorder was causing all the tendonitis, bursitis, brain fog and flu-like symptoms: completely ignoring the fact that actual feelings of panic, fear, and uneasiness were surprisingly absent from the symptoms diary that I’d submitted. I was so angry that I could barely form a coherent sentence. I tried to explain that the tendon issues HAD been diagnosed, just not by that particular practice. Dismissed. So, I asked him what the hell I was supposed to do, and he replied, “well, the symptoms are something we can work on.” And, I kid you not, that was the end of the actual consultation! He told me to have a think about what he’d said and come back in a couple of weeks. If I had actually been suffering from anxiety, that dismissal would have, probably, tipped me over the edge. I walked home in a daze, feeling as though, after working so hard to climb the various ladders, I had just slid down the longest snake to the bottom of the board. I was at an absolute loss as to what to do next – it felt as though the final door had been slammed in my face, and I just didn’t have the energy to jemmy it open again. However, some unconventional wisdom was about to blow that door right off its hinges…
7 thoughts on “The Uphill Struggle For A Diagnosis Part 1”
A familiar sorry for so many of us. The battle continues. I have a diagnosis but feel it is just a label to justify the unknown as they “play” with meds to try and ease the symptoms (or at least just shut me up for a while). Unfortunately, I’ve yet to find anything that comes close so dumped the meds for a more holistic approach. Whilst still only chipping away at the corners, I am starting to ease some of the pain. I spend the rest of my time trying to evoke positivity into my life as this is now all I can do. I wish you well and hope you find some answers real soon xx
Thank you for your comment and well wishes. I think one half of the problem is gender bias (even from female doctors) and the other is the way the human body is still viewed. We’re so often seen as ‘mechanical animals’, separate gears and engines that are only tenuously linked together, and not as an organic system where each part is very much connected to the whole. It’s almost like thinking that the river and the waterfall are two separate entities, and assigning a different expert for each one.
I truly wish you all the best (and all the spoons!) in your efforts for wellness: keep at it – there are many illnesses that are now recognised, that used to be considered psychosomatic. The more we talk, the more we educate. Xx
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I stumbled across this story after I’d just written a post about my own problems with fatigue. I can relate to your experiences with doctors. Thanks for sharing, I hope you find your solution soon.
Thanks for reading!
I actually got a spark of inspiration, from a very unexpected source, that created a sea change in how I dealt with my doctor, which I’ll post next week. I’m also putting the finishing touches to a post about dealing with obstinate doctors, which I hope people will find useful. 🙂 Checking out your blog, now…
Mine is a bit of a mismatch of things, just wanted a place to get down my ideas when I felt like writing! I’ll be interested to read both posts. I’ll be writing more about health, doctors and fatigue soon. It’s tricky to make a coherent post about things that are so slow moving! You seem to be doing a better job than me.
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