I used to pretend to be a horse as a child – and then all night I would have to stretch in bed and place cushions into the small of my back to ease the agony and relieve the “growing pains”. As an adolescent I had terrible psoriasis, eczema and cystic acne but not much actual pain (that I can remember). And from my teens up until now I’ve had issues with gluten and all the havoc that those symptoms can wreak. I’ve always been very active and outdoorsy, horse riding and hiking are my things! I was super fit. The back and buttock pain became noticeably unbearable in my mid twenties, shortly after an accident which tore my calf muscle. Suddenly I could no longer do my job properly nevermind go for a hike (I taught horse riding for a living), and would drown my pain in wine, hot baths and the odd pain killer most evenings to get some peace from it. I remember sleeping on the floor at the peak of it because I couldn’t get any comfort in bed it was just so sore. I saw a chiropractor regularly from about the age of 25 for the various aches and pains and strains I seemed to get, he concluded I had mild scoliosis and one veretebra larger than the rest which must be my issue. And told me to roll it out using a roller or ball. I believed this. And I spent so many Hours googling and reading and trying to roll out the pain. I even thought perhaps it was my horse being skew that was putting my back out every week. By then I was barely working and desperate to rid myself of the unrelenting pain, and my right limb was becoming noticeably unbalanced and weak so my Pilates teacher sent me to an osteopath friend of hers, and we chased the pain around literally for almost a year. Back to front to papas to hop to groin to buttock and up to lower back again. Using needling massage stretching lifestyle changes he helped to keep me pain free, and discovered I had something else going on with my thyroid (by this point I had left my job and had developed bizarre yawning attacks where the skin around my mouth would almost crack from incessant yawns). One evening I broke down in front of a friend’s parents after a 15 min drive in agony (when I drove my car it used to feel like a really painful tennis ball stuck in my lower back) I told them how much pain I was in and that I was literally drinking it away and losing my will to live and how I just couldn’t go on it was exhausting. They recommended a surgeon who wasn’t trigger happy with knives and had helped the father of my friend heal a broken neck. So I went with high hopes, and he said I was experiencing the tip of the iceberg in pain! Despite my sleeplessness and tears. I happened to be having a good day that day! He told me I must “just wait – perhaps it will get worse. Others he sees are in far worse shape”. That I must forget all this core workout nonsense a strong core won’t protect my back. He tested my movements and concluded that I must be crazy (in less offensive words) but I wouldn’t leave without something. So he agreed to book me into hospital for an MRI and a cortisone injection into the lumbar area on my right where the pain always seemed the worst. I was so relieved that when worked! It was quite an ordeal as I had to be anesthetized (personal reasons), but to be almost instantly pain free was so life changing that day! The MRI had apparently showed nothing except a small cyst which he had never seen before in practice and called a possible ganglion neural cyst. He had to add that it was so tiny it couldn’t possible make me feel so much pain. That cyst is still a mystery.
I didn’t care what he had said. I had my life back, so I thought! A few months later I fell pregnant and towards the end of my term I was in abnormal back pain once again. Battling to sleep or walk or stand or sit.
I started investigating the issue again as I started to get weird sensations in my right leg and hip and occasional back ache which was just like it had been before. I was so worried I would need another MRI and injection, out of my own pocket too. I don’t even want to know what I had so far spent, between Chiro, Pilates, osteopath, the surgeon and the MRI and treatment…
I took my MRI scans and symptoms to a neurologist who couldn’t see any neural cysts but then identified what he thought looked like an old fractured vertebra, yes I had fallen flat on my back off my horse around the same time I had torn my calf muscle in a boating incident), but I was able to walk right after I peeled myself off the floor and so continued to work (but interestingly I was almost totally immobile after my first Chiro appointment the week after this fall!) had I fractured something in my horse accident? I won’t ever know – and what does it matter now!
Almost at the end of my story! The neurologist concluded that I must continue and see how i get along… in the mean time my thyroid and other systems had really started to crash, so I found my way to a functional doctor who put me on thyroid treatment after bloodwork. Last year I was still feeling awful, with bad back and hip pain so I found a new functional doctor who managed to heal my thyroid and get me off the meds using diet and lifestyle and homeopathics! She intimated that a trip to the rheumatologist was needed because of what my symptoms were saying to her. I got tested for the HBlA27 gene at the rheumatologist and finally – I mean finally got a diagnosis – I wasn’t crazy – I was sick and tired! Finally someone who heard me talk about my pains and knew! It took almost ten years of back and hip pain – I’m 35 now. I was shocked and scared to be sent away with pamphlets on this new “life sentence” but I had suspected it from my google searches (and ten years of struggle). I have now improved so much – my pain almost gone and (some) tiredness persists, just through the AIP diet alone, the repercussions of a cheat snack quickly bite me in the butt (and back and other joints like my hands and arms too) so the strict diet is becoming easier to stick to, but I don’t really have a choice. I choose to be pain free with relatively normal energy levels and use my diet to do that . (Just months before I used to walk the neighborhood with my son and often have a sugar crash in the middle of nowhere and have to sit and make my toddler wait with me whilst I recovered). Now I can also sleep again at night, ride my horse again and even walk on thick sand (which had become impossible – I needed Chiro after each beach day!) eventually I will get fit to hike and compete my horse again! I am so grateful and relieved to finally know what is wrong and to have the power to do something about it but I have days when the unfairness hits me and I struggle. This is where my friends and family come in! I don’t want other people to have to battle and lose so much time to this disease before getting a diagnosis – I really hope awareness about AS increases in all