Many years ago, in 2004, I was diagnosed with Fibromyalgia by a GP. I was 23. I was in near constant pain, I weighed thirty five and a half stones in weight (497lbs, 225KGs) so my body was under enormous stress, but even the non weight bearing parts of my body were in pain. All the time.
Fibromyalgia is characterised by widespread pain (myalgia) in the soft tissue (fibro) in the entire body. It has a number of other symptoms as well, however. Extreme sensitivity to light, sound, smells, textures, issues with ones’ bowels, problematic sleep, stiffness, fatigue and the curious “fibro fog“. I definitely had all the symptoms, along with the sensitive “trigger points“- tender points around my body that were very sore when pressed by my GP so the diagnosis did seem to fit, but it didn’t explain everything.
By 2020, I had lost eighteen stone in weight and I was constantly going back to my GP complaining about excruciating pain in my joints. “It’s probably your Fibromyalgia!” he would say. with increasing amounts of impatience. But I knew that it wasn’t. Pain in the soft tissue, muscles especially, that is fibromyalgia, but this was different. I would feel my ankles slide in and out of position and my hips as well. My wrists would crunch and click, my jaw would pop and crack and my mouth would lock open and my fingers would often bend so far then pop out of their alignment and get stuck until I manually popped them back. Not all the way out so they had dislocated, so I couldn’t use that word with the doctor, but partially. I have a word for that now. Subluxation.
I was experiencing other problems too. Recurring cramps in my legs and feet that would wake me up at night, so frequently, several times a week. I was feeling sick constantly, having pain whenever I ate food, I was losing weight as a result of this. I had had a gastric bypass in 2013, and had lost weight due to the surgery, but this felt very different. I would eat food and immediately my stomach would feel full and hard, like it had cramped up. “It’s probably anxiety because of your fibromyalgia” said my GP.
I had developed Raynaud’s Phenomenon in my hands and feet due to exceptionally poor circulation, so my hands and feet were going blue and purple and white when I went from hot to cold and had started burning from temperature changes. All this along with the fact that I have always bruised very easily, have been extremely “double jointed” (hypermobile) in more or less every joint in my body, my entire life, having done “tricks” with my hands when I was a child, and done the splits up the wall, back flips and back bends from standing without any gymnastic training growing up, twisting my arms around and popping my shoulders, bending my wrists and thumbs back on themselves and having knees and elbows that went “the wrong way” and a Jaw that would get stuck open at the dentists and during the night! And that embarrassing fact of my poor bladder control, that I had mentioned to the doctor a number of times, but again, “its probably to do with your fibro! You’re just anxious, try doing some pelvic floor exercises!”
I couldn’t help thinking that this was all a bit convenient, like the fibro was just a dustbin that all my symptoms were being thrown into at will. I was visiting the doctor at an alarming rate with my aches and pains and various other symptoms and being fobbed off every time I went. He had referred me to a couple of rheumatologists at my request, I think more to shut me up than for any other reason, but they had been equally as dismissive. I was coming out in regular hives and other mystery rashes on my face. in the absence of any other support I Googled the face rash and found LUPUS. a connective tissue disorder.
I took my potential diagnosis to the rheumatologist and walked with my walking stick into his office and hadn’t even sat down. “how can I help you” he asked, not even asking me to take a seat. “umm well I was wondering if I might have Lupus” I replied “I can tell you now you haven’t got Lupus!” he said not even asking me what my symptoms were. I was there long enough for him to ask me my name and date of birth and that was that.
Still searching for answers – obviously not very good at finding them, I was talking to a good friend who mentioned hypermobile Ehlers Danlos Syndrome to me, in connection to her son. I listened to her and everything she said clicked into place. it fit me perfectly! I read up on it and took it to my GP. He listened and shook his head “I still think its the fibro” he said. I was despairing by now. I knew I was being fobbed off. I knew that I had to go privately and that there were so many associated health conditions connected to it.
I researched private Consultant Rheumatologist Specialists in Hypermobility/Ehlers Danlos and found Dr Philip Bull in the One Hospital in Ashford Kent. He was a very experienced Consultant having worked and taught with the NHS for twenty years prior to working in private medicine and still doing some work for the NHS, and was now the Lead Medical Advisor for The Hypermobility Syndromes Association and an active member. I looked him up and even though Kent was quite a drive from Birmingham, I knew that this was my man!
I made an appointment with him and a friend and I made the three hour drive down to see him a few weeks later, it was November 2020 during a gap between Lockdowns.
I was very nervous, but I had no need to be. It was the polar opposite of any negative experience that I have ever had with any doctor on the NHS. He was warm, friendly, receptive, knowledgeable and best of all he listened. I could have wept. I had corresponded with him prior to the appointment and told him what I was concerned about, I had explained that I was concerned that I had hypermobile Ehlers Danlos Syndrome and had been fobbed off by my GP and several rheumies within the NHS leading up to the appointment with him.
He examined me extremely thoroughly, using the checklist for the diagnostic criteria for hypermobile type EDS, and the Beighton Score (my Beighton score was 9). He took my history around allergies, pain, dislocations, mood, anxiety, behavioural traits, family background, family members who had similar symptoms (I didn’t know this at the time, but my aunt and cousin also have hEDS). He did a thorough, but not diagnostic, test to check for the likelihood of autonomic dysfunction such as POTS and checked my feet and legs.
Eventually he told me that I was right, that I did have hypermobile Ehlers Danlos Syndrome. and that I also had fibromyalgia along side it. That he was also making a clinical diagnosis of Mast Cell Activation Disorder, based on my symptoms that I had described. That he was going to write to my GP to ask him to refer me to a Cardiologist about autonomic dysfunction because I had a significantly lowered blood pressure and raised heartrate on standing which would account for breathlessness and feeling/actually fainting when I stood up, which I hadn’t connected to my pain related symptoms at all. He wanted him to refer me to a Gastroenterologist to discuss the eating issues as after so many years out of gastric bypass surgery I should not have developed pain when eating or nausea. That that required investigation also. And that he wanted to recommend that I was assessed for Autism and/or ADHD as well. He explained that Neurodivergence was very much related to the hypermobile spectrum disorders and that I presented very much as neurodiverse. He wanted me to have Hydrotherapy if possible as well.
on the way back to Birmingham I got a ticket for going through a toll tunnel without paying for it and didn’t realise, but I honestly didn’t care. I was floating, I had just received the best worst news of my life!
Back in Birmingham Dr Bull was as good as his word, my GP and I received the same letter. and within a few weeks I received letters from the Queen Elizabeth Hospital in Selly Oak offering me appointments with the Cardiology consultant and with the Gastroenterology consultant. I also was offered ten sessions of Hydrotherapy at the Woodlands Royal Orthopaedic Hospital. And my medical notes were updated to reflect the new diagnoses.
Getting my formal diagnoses of hypermobile Ehlers Danlos Syndrome and Mast Cell Activation Disorder, has been absolutely invaluable. I have had appointments with the cardiology department ever since my diagnosis, every few months. They continue to take me seriously. after multiple tests, the Gastroenterology team Found a large hiatus hernia lurking at the top of my stomach- hernias are common with EDS- so it wasn’t anxiety , or part of Fibro, but a fairly serious issue all by itself. The hiatus hernia is causing significant reflux which if not sorted is one of the main causes of oesophageal cancers. I had my Autism assessment and have been diagnosed with Autistic Spectrum Disorder as well. But that’s another story….
So was it worth the money to go private? Absolutely. but I still love our NHS and hate what is happening to it…
"Pencil-Case" 