How I manage to write between flare-ups and domestic duties.
Tuesday, 20 May 2014
Heard of Behcets disease?
Not many people have. And so I thought, seeing as today is Behcets Disease Awareness Day, I would share my story in the hope that it might help others, especially anyone who's struggling health wise and looking for a diagnosis...
I was ten or eleven when I first started with growing pains. Or that was what they told my Nan it was. But when the pain in my knees and legs became so bad that Nan had to push me around in a wheelchair she fought to get me to see an Orthopaedic consultant. He accused Nan, who’d adopted me when I was three, of being neurotic and over protective. When she denied this, he suggested it might be my neurosis – perhaps I was just trying to get attention. Either way, he thought we were both wasting his time.
Undeterred, Nan didn’t give up and argued with every doctor who would listen, refusing to believe that a young child could suddenly go from being active, enjoying gym, dance and life to being reduced to shuffling up and down stairs on their bottom, screaming in pain when getting in and out of the bath and unable to dress themselves.
Her tenacity paid off. Another consultant, with a much improved bedside manner and convinced the problem was with my back, tried me on traction for four weeks. It didn’t help but he referred me to a Neurologist. After many tests, between them, they discovered a defect with a disc in my spine. They operated and it improved. At the time there was nothing to suggest there may be an underlying condition. It was thought the operation had been a success. I was discharged and didn’t have any further leg or back problems for many years. Oh, there were many other symptoms over the years but nothing to link them and it's only now as I write this I see the connection and realise those early problems were the beginning.
Many teenagers develop Glandular Fever. It’s debilitating and can take months to recover so when I got it and around the same time started with clusters of severe mouth ulcers, we thought it was connected. A few months later, a new problem developed. On first appearances it looked like flea bites on my shins but they felt hot to the touch and hurt like bruises. Some grew so big it felt as if a horse had kicked me. A couple of years on, I woke one morning with the most terrible pain in my right elbow. Because I’d dislocated it when I was eight we presumed it was rheumatism but the pain was excruciating, almost as if it was dislocated and didn’t sit correctly in the socket so when I could bear it no longer, I went to the doctors.
He did some blood tests but they came back normal. However, he started to link the joint pain and the erythema nodosum (the lumps on my legs) together and sent me for a chest X-Ray to eliminate Sarcoidosis. It was clear. The lumps and mouth ulcers continued, along with the joint pain which had moved from my elbow and started flitting to various parts of my body. After continuous tests the GP drew a blank and said he couldn’t find anything wrong with me.
By the age of nineteen I should have been having the time of my life. I lived for Friday nights, to go to Cinderella Rockerfellas and Madisons in Leeds with my friends but by then the joint pain was becoming more frequent and when it flared, I found the pain so unbearable, I would cry myself to sleep at night. Yet to look at me, nothing seemed wrong. No redness. No swelling or hot joints. Normal blood tests. By the time I was in my early twenties the GP's had done everything in the way of tests and I’d tried many of the standard anti-inflammatory drugs (NSAID’s) and painkillers. Nothing helped. Even I started to wonder if it was all in my head.
Somewhere in the middle of all this I met and married my ex-husband and developed a promising career with Lloyds Bank. Life was good for a couple of years. And something even better happened when I got pregnant; all my symptoms – the ulcers, joint pain, lumps on legs - everything disappeared.
The euphoria was short lived. Within three months of having my first son, the symptoms came back with a vengeance. At last, with a different GP, I saw a Rheumatologist. He found my symptoms baffling too. He had heard of many cases of symptoms going into remission when women got pregnant and started to wonder whether my problems were hormonally linked. Or whether it was some form of arthritis. Or maybe Lupus or some other auto-immune disease.
As my symptoms worsened and he resorted to drawing fluid off my knees and injecting my joints with steroids and cortisone, the only thing that kept me going, as well as my family, was the reassurance of that Rheumatologist, and knowing I wasn’t going mad. At last, I’d found someone who believed me.
The effects of the injections were remarkable. My Consultant and GP prescribed a mixture of NSAID’s and prednisolone (Steroids) and for the first time in years I could dance. We went on a couple of wonderful holidays. I progressed in my job and had three promotions in two years. Whatever had been wrong with me, I was cured!
That was, until my son became seriously ill. Whether it was the stress or co-incidence, I don’t know, but my condition deteriorated rapidly. For a couple of years thereafter, my symptoms were out of control. Higher and higher doses of prednisolone were needed to get on top of my symptoms. But as I developed painful nodules around my joints and my eye sockets, even 60mgs of steroids didn’t help. With every new flare up, it seemed the pain worsened until it became all-consuming. I had to change my car to an automatic as I could barely drive. My ex-husband had to lift me in and out of bed, fetch painkillers in the night and help bath me and wash my hair. He made me a makeshift frame for the bed as I couldn’t even bear the weight of the bedclothes on my legs and feet. Looking back, I remember one day - it was ridiculous – I had injections in both feet then went to work afterwards for some meeting or other. I remember him saying he couldn’t keep ‘patching me up’ like this. But I couldn’t give in. Desperation and sheer determination were all that kept me going.
In the midst of this misery, by chance one day my usual GP was on holiday and I saw a new one who had an interest in Rheumatology. She had worked with a leading authority in Rheumatology at the leading Royal Orthopaedic Hospital, Oswestry and suggested he might help. I paid for a private consultation and met him two days later.
I’m a big believer in things happening for a reason. For the first time in my life I knew as soon as I met him that I had found someone who I could truly talk to and who understood my problems. He didn’t profess to have the answers. Whatever I had was complicated. My symptoms weren't typical of any of the obvious rheumatic ailments. He weighed up my symptoms and how I presented; the mouth ulcers, the erythema nodosum on my legs which was now attacking my joints and the severe joint pain but he was puzzled because other than an occasional bout of stomach ache, there didn’t appear to be any significant bowel problems and also, whilst I had mouth ulcers, I hadn’t had any vaginal ulcers. If I'd had these, he thought he could definitely say it was Behcets disease.
I was thirty-two years old and it was the first time, after twenty years of problems, anyone had mentioned the words, ‘Behcets Disease.’
It’s almost fifteen years ago that I found my lovely Consultant Rheumatologist. Since then, he’s seen the best and very worst of me. The toughest times were the year I spent ten weeks in the RJAH with Avascular Necrosis of my left hip and subsequent surgery. As a result, I had to retire from my job in the bank, aged only thirty-two. Then following a miscarriage and subsequent surgery, I stayed in for a week with acute diarrhoea stomach pain and profuse bleeding. At first they thought they had perforated my bowel in the procedure but I’ve had flare ups of ulcerative colitis ever since. And vaginal ulcers. I get regular crops of them now along with everything else.
For my Rheumatologist, this was the last piece of the jigsaw. The onset of colitis and genital ulcers convinced him this must be Behcets. Life continued with a weekly cocktail of Methotrexate, Sulphasalazine, Celecoxib and analgaesics, alongside intermittent injections in whatever joint flared and things were as good as they could be until 2009. That was when I started with jaw problems. A year later, following a first bout of surgery, I had bilateral Total Jaw replacement surgery in October 2010. It turned out to be Avascular Necrosis in both jaws.It was tough, really tough, but following the surgery, I felt I had my life back and the nine hours of surgery and months of rehabilitation had been worth it.
But here’s the rub. You see the thing with Behcets; just when you think you’ve turned a corner, or believe things are looking up, something else happens, and BANG! - it smack's you round the chops – and before you know it, there’s something new to deal with. Some other battle to fight. Over the last year my condition has deteriorated again. Last October I did a swim challenge for Arthritis Care with my son and raised £730. Yet now, I wouldn't be able to get in and out of the pool, let alone swim, the pain is so severe in both shoulders, my chest and neck. Hip and feet pain means I presently need a stick to help mobilise. Oh, yes, and my jaws are failing. The pain is back – not quite as severe as it was before my replacements but it's worsening and my mouth opening is down to just over a centimetre. The worry is, the Avascular Necrosis may be spreading further in my jaw/skull.
There’s no such thing as a good day. There are no long periods of remission as there used to be thirty-five years ago. Since last July the flare-ups of ulcerative colitis and the vaginal ulcers have been much worse. Sorry, we British don’t like to mention the word, 'bowel,' do we? Or think about vaginal ulcers. But please imagine the scenario I faced a few weeks ago when everything was flaring and I couldn’t dash upstairs to the toilet quickly enough. How, with the pain in my shoulders and hands, I struggled to pull my trousers down and couldn’t clean myself and found it difficult to even get into the bath to shower. Sorry to be so graphic. But people don’t see that. No-one can truly understand unless they have Behcets disease or some other chronic auto-immune condition and live with the range of symptoms day in, day out.
But I'm lucky. Following these recent problems my Consultant referred me to the new Behcets Centre of Excellence in Birmingham. Wow, what a set up. Anyone with even the slightest mention of the diagnosis, Behcets Disease, please insist on obtaining a referral from your GP or Rheumatologist. There are only three in the country. It’s a wonderful facility. I saw four different Consultants in one day along with two specialist nurses. And I'm pleased to say, thirty-five years on I have (she says, almost crying at the emotion of it all) a definite diagnosis of Bechets Disease. My Rheumatologist was right. And I wasn’t neurotic after all.
The plan is to start a clinical trial of anti-TNF medication - probably intravenous Infliximab - every six weeks for a year to try and 'dampen’ the Behcets and reduce the need for more joint replacements. However we can’t go ahead with that until I find out if it’s Avascular Necrosis in my shoulders and whether they need replacing or if my jaws require more surgery. The MRI is booked for a couple of weeks so hopefully, I’ll soon know.
I’m forty-seven years old now. Some days I feel like an eighty-seven year old. When you live with a chronic condition the future is always uncertain so I’ve learnt it’s no good looking too far into the future or trying to plan too far ahead. Tomorrow I should have been going on holiday to Italy but had to cancel due to my health. Hey, remember what I said about hindsight? If I’m honest, it was always a little ambitious.
Perhaps for the first time in many years I’ve learned to ‘embrace’ my condition. I have a lodger – Behcets disease – I can’t change it. I can only accept it and try to manage the best I can. Oh yes, and stop being so proud and accept my limitations! People don’t see pain. You look alright. You try to smile through the pain. What’s the good in moaning? No-one likes a moaner. So you get on with it. What else can you do?
One thing for sure, anyone out there with Behcets disease or any other similar chronic auto-immune condition, don’t give in. And if you're looking for diagnosis, don't take no for an answer. Take it from one who knows. Stay strong if you're suffering. Be kind to yourself and try to find others in the same situation. There are plenty of on-line forums and support groups for various ailments and diseases. And for those of you with Behcets, Arthritis or suffering from chronic pain, I'm always here. You are not alone...
Until another day
ps - I've given as much information here and detailed as many links as I could but if you need any further info or contacts, feel free to ask.