Misdiagnosis on the NHS

I’m a 39-year-old woman, British born and bred, diagnosed in late 2015 with Rheumatoid Arthritis. I’m also Asthmatic, which was diagnosed back in 1987, shortly after my tenth birthday.

My RA had already been going on for over five years by the time I got my diagnosis, completely unchallenged.

The very first full symptom I experienced was a nasty stabbing pain in my right hip. The morning it happened I didn’t get concerned, because it was a familiar occurrence: I’ve had pain problems in that joint literally my entire life. It was dislocated (they labelled it as a unilateral dysplasia) when I was born, and my mother refused the hospital’s offer of immediate correction. I ended up correcting the joint myself… five years down the line.

With that in mind, I didn’t go to my GP right away; my mother became a terrible hypochondriac as I was growing up, and naturally that affected me too, but I went the *other* way, like my maternal Grandfather, and adopted the attitude of “I’ll know when the time is right to seek help.”

The time came a week later. The ordinary pains in the hip joint only ever lasted a maximum of three days so, when seven had passed and they hadn’t abated, I booked an appointment to see a doctor. My own GP was on vacation, so I saw a locum.

The doc poked and prodded (my umbrella term for a painful physical examination) for a few minutes and then decided I had some swelling around the joint and the main tendon was too taut. She prescribed Acetaminophen (or Paracetamol as it’s known over here) and Ibuprofen. I immediately protested about the Acetaminophen; it severely upsets my digestive system even though I don’t have an ulcer. She gave me Omeprazole, a proton pump inhibitor, to protect my stomach, told me she thought I had Greater Trochanteric Bursitis, and booked me an appointment to see the on-site physio.

Great, I thought, it’s nothing serious. I already knew that in the worst-case scenario, the affected bursa(e) could be removed via keyhole surgery and would grow back minus the inflammation. But I’ve always been very intuitive, and something at the back of my mind just didn’t add up.

The physio was… not good. The guy had me lie on my back, bend my right knee and pull it over as far as possible to my left, without turning my spine or pelvis. He also had me start keeping a pain diary for pre- and post-exercise each day. He also told me this was *not* a “no pain, no gain” thing and that the exercise shouldn’t hurt.

Well, as you can no doubt guess, that was nonsense. The exercise hurt badly from the off; it kept getting worse and worse. After eight weeks it was enough to make me black out for several minutes at a time, and I made sure that – without any pointless exaggeration – the pain diary reflected that. I’d only ever passed out once in my whole life before this, pain notwithstanding. The so-called ‘therapy’ was also what initiated the spinal pain, and that’s something else that won’t quit.

I went back and saw another, more experienced GP who said he thought I might have fibromyalgia. He gave me a symptom list to check over. But, again, it didn’t add up. We checked MS and ME as well, same result. The only things that were clear were that it *really* hurt, there was a definite inflammatory component, there was a definite neuropathic element, and that it was slowly spreading.

2012 came around. During the summer months my husband and I were working together to cook the evening meal. It was a warm but dull day, and we had the kitchen and lounge doors open so we could watch the BBC News Channel. Hubby went into the lounge to hear more about an interesting headline, asking me in the meantime if I could retrieve a bell pepper from the salad crisper at the bottom of the fridge. This, bear in mind, is the small, hip-high model (on me, and I’m 5’4″) of fridge we mostly get over here. I bent down and reached into the fridge… only to find myself a couple of units away on the floor beside the oven with my hip absolutely *killing* me. I’d blacked out from the pain, and hubby told me when he raced back into the kitchen that I’d “screamed like I’d broken my leg”. I put my hand over my hip and took it away, expecting in all seriousness to find it bloodied. It felt as if someone had driven a scalpel into the joint, with considerable force.

Then there were the – thankfully few – occasions where my right leg simply failed and went out from under me. In 2010 it most probably saved my life, by cutting the nerve signal just as a pensioner in an old Nissan Micra ran the red light at the pedestrian crossing I was using: but in 2013 it nearly caused me a severe injury, by failing when I was descending a steep flight of stairs and making me *fall* down them instead. All that kept me from a possibly dangerous head injury was the time I spent horseback riding in my teens and the reflex that time instilled in me to raise my head against the pull of gravity while in a fall.

Treatment doesn’t seem to be helping me. I suspect that’s because of the internal damage done to me by the disease during the five years I spent being told I had something other than RA. I haven’t yet met a DMARD I get along with, and the fact that I’m also Asthmatic is severely hampering efforts to bring the inflammation down, because I can’t handle any NSAID stronger than Ibuprofen. As for the pain, the only things other than Ibuprofen which help are Amitriptyline (for the neuropathic pain) and Morphine, in two different forms, extended-release and liquid (for the mechanical pain from the damaged joints and vertebrae). The problem has spread to my neck, shoulders, left hip, both knees and, in the last couple of months, into the small interphalangeal joints of my hands and feet. I suffer shooting pains down my legs in particular, which the Amitriptyline does help… sometimes; and serious aches in my toes quite literally out of nowhere. Right now, Friday February 2nd 2017 at 10pm GMT, as I write the end to my story, I’m in mid-flare, pretty much insomniac, *very* anxious about the future, barely holding my head up above the toxic waters of depression, and in considerable extra pain. All because my *dear* husband won’t wash his own car, and it has to be pretty much either windy enough to blow me away, cold enough to freeze the water in the bucket or raining on a Biblical scale before he relents and… lets me do it on a better weather day. Ha. He’s going to have one *heck* of a shock in a few years when I can’t even get down the front steps without his help and he has to do the lot. I have been, however – after a somewhat emotional discussion during which I truthfully told him how I felt: that as soon as I was no longer fit to run around after him I’d find myself on the streets – promised me that he will absolutely *never* kick me out or divorce me. He has always been a man of his word, so I believe him… but the true test is yet to come.

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