When I was a teenager, I begin having lots of aches and pains. The doctors labeled them as, “growing pains”. After having constant pain in spine I went from physician to physician yet, they could find nothing wrong, and they basically said it was all in my head. My general practitioner believed there was a problem so kept sending me to different hospitals, different specialists. Eventually I was diagnosed with Ankylosing Spodylitis, a painful, progressive, extreme form of inflammatory arthritis. However by the time I received the correct diagnosis, my x-ray showed I had severe damage and needed fusion in my spine. I was told the doctors had not been looking for AS, for it is generally a mans,’ medical problem!
It was the early 1970’s. By this time I was married and in my early 20’s. One of the things I was told was that my spine was not strong enough to carry children. For the next few years, I was continually taking painkillers and had several stays in hospitals with major flare ups. The consultant at the Northern Hospital in Edinburgh, viewed my drugs. He expressed his concern and disgust that – a)I had never been referred to the hospital before, and b) that I had never been on anti inflammatory medications. After Naporsyn was prescribed, the pain was held under control. Unfortunately, I spent undesired time in the hospital.
The next major event in my life occurred a few years later on New Years Eve. I decided I was not going to drink alcohol, as my friend were simply going around to visit the neighbors in the wee village, we lived. While walking about, I slipped on the ice and was carried home by two drunk men. Fortunately, one was a fireman so knew how to carry me safely. The next morning my general doctor, called and immediately insisted I got to hospital. As it turned out, upon falling, I had smashed a vertebrae. It was contained so no danger, so I insisted on going home, even though it was very painful. I was informed by my doctor that if I had been drunk, I would probably have been far more relaxed and therefore, would not have done much more damage to my spine.
The next incident that followed, involved one of my eyes left. My eye looked strange so I went to see my general doctor. He found nothing, however two days later, he arrived at my door and insisted I go to the Alexandra Eye Pavilion in Edinburgh, where I ended up staying for a week. After reading up about AS, he spotted a connection between my eye irritation and the disease. I had developed iritis and since it had not been treated promptly, it had become worse. I needed injections administered directly into my eyeball, for drops did not work. From then on I had iritis on average 3-4 times at least every year, as eventually, both eyes were effected. Each time, I detected a flare, I went straight to the eye hospital, for I learned my lesson from the first incident. Thankfully, I only had two additional hospital stays due to my iritis I got to be so good at recognizing the signs of the condition that, I ended up in a few arguments with nursing staff who told me there was no sign of iritis. After I insisted on seeing my doctor, he would confirm that indeed my eye was infected. In over 30 years, I have only misdiagnosed myself once! The doctors should by now read the bloody notes from previous appointments and listen to me! I am reactive to steroid eye drops, for it can cause the pressure to build up in my eye. This pressure can turn into glaucoma. On one occasion I actually lost sight completely in one eye for a few hours and was rushed to eye hospital. The doctors were rushing around and accidentally gave me pills plus an eye injection. This combination made the pressure in my eye soar. My eyes are now very sensitive to light and I have lost some peripheral vision in one of my eyes and will most likely need surgery for this problem. I go to the eye hospital every few months for check ups.
A few years later, someone pulled away a chair that I was about to sit on it. I fell hard and the next day I was in great pain. The doctor insisted it was a flare up of AS,or a bad bruise. (For I was not screaming and crying when I saw him) I told him it wasn’t, for I know my body. However when I went to see my rheumatologist. He took one look at my face as I walked in, and sent me immediately to x-ray which turned out to be break number two. The third time was five years ago as I bent down to pick up a bit fluff on the floor, I heard a crack. Same old same old. I pulled a muscle, torn ligament etc.. So my doctor sent me to a physiotherapist. It was an interesting journey crouched in the back of a taxi, for you have no idea the number of potholes in Edinburgh!! Anyway the physiotherapist sent me home as they refused to touch me, as I was in so much pain. They made arrangements for an x-ray, and insisted that they would need to come to me until they were satisfied with my situation, so I would not need to travel. They found that I have osteoporosis. This bone condition, combined with the AS, means I have to be very careful of falling over etc.
In December 1999 they my rheumatologist decided to operate on my back as I was becoming very badly bent over. This meant opening me up from shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and inserting hooks to pull everything into alignment. The operation was on a Tuesday and they put me in a plaster body cast on the Friday. (It should have been longer before applying the plaster, but it was coming up to Christmas and the holidays and they hurried the procedure along. It was the worst thing ever! If you can imagine, I could only sit up being held by several people and I was in extreme pain and experienced dizziness. The nurses placed a huge amount padding all around me. It went from under arms, up to my throat, and then down to my hips. I was given morphine injections whenever I wanted one. Then there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms. There were material bonded around my neck pulling my head into place and the same ones on my feet so my back was being pulled straight. When they finished the plastering, I was carried back and sat up as they had to make sure the plaster wouldn’t be too high to choke me, or too low to hurt me when sitting. Then laid me down on a trolley and sent to x-ray to make sure everything was in the right place. I was then put on a morphine drip and was in hospital for a month.
I had to learn to walk, to get washed without wetting the plaster etc.. After a few weeks had to go back to hospital for there was a black discharge, leaking out the bottom of the plaster, which my mum noticed when she was bathing me. It turns out it was an infection because the plaster went on too early. The plaster was taken off for less than a week and I had to say on the bed, in the wee room and couldn’t be moved. No further problems, but I had two further changes of plaster, each one a little lighter than the last, over a 10 month period. After all this, I was fitted with leather and metal strap-on body brace. This switch was bliss, as I could take it off at night and when I bathed. I needed to wear the brace for a year.
I began to suffer from extreme fatigue and when I saw my doctor, he sent me to the Western General Hospital in Edinburgh for tests. There they carried out my first endoscopy, to see what is going on in stomach. It was found I had a hiatus hernia and lots of lesions in my stomach due to taking the anti-inflammatory drugs over such a long time. Blood tests also found I have an under-active thyroid. The thyroid and AS both have the same side effect – fatigue. I describe my continual exhaustion like, “Walking through water, all the time.” They also discovered that I had a lot of irritation in my stomach and colon due to the years taking anti inflammatory drugs, and that I was anemic. Again, this produced even more fatigue. So I was limited to taking, which really are ineffective for me.
A few years ago I read about a very new injection which had been used for similar conditions, called Enbrel. I qualified to be given the medication so started with initially twice weekly self injection. The dosage was then doubled, so I could receive it once a week. However the anemia was becoming a problem and I needed to be rushed several time to the emergency room for blood transfusions. The average blood count is 120-150 for a woman. At one point mine count was 50. My doctor gets excited of my count is in 3 figures!! Despite several endoscopes, colonoscopies and a camera pill evaluation, there was no obvious reason for the ongoing severe anemia. It was determined that it is just attributed to my AS.
So daily I take painkillers, injections, thyroid pills, hernia pills, iron pills, calcium pills, osteoporosis pills and eye drops. I get a shopping bag full with each prescription, luckily as I don’t pay for any prescriptions!
There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look. At times I have the feeling of being such a nuisance when out with friends, for I can’t walk far for long. I don’t want to go out much for I always need to have a seat before long, so I longer have a social life. What I do enjoy is having friends over for visits. This too can be difficult, as I worry that I can’t manage to have my home as nicely as I’d like it to be. My true friends will understand my limitations.
The AS was also a contributing factor to the breakdown of my marriage. It is a very difficult condition for a patients’ partner to understand. This is even more challenging when ones partner is young and active, as in my case. Work life was also very difficult due to the constant medical struggles, and after the association I worked for merged with another, they moved offices. This meant hours of travel each way with three change of buses. After three years of working with AS, I simply knew I couldn’t go on any longer and one day just got up and went home. My HR manager and my GP were very helpful and guided me through it all. Thankfully, I signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my GP with trepidation. After explaining the situation to him, he quietly said, “I can’t believe it has taken you so long to get to this point”. He told me he admired my determination to work, and didn’t have any idea how I had managed to go on for so long. Well that was it, several boxes of tissues later we got organized. Again I think I was especially touched at this rare moment for AS patients are so used to people not really getting it. We feel we have to defend ourselves from being considered lazy. Presently, I don’t get the old age pension as I am too young, and I could not have been able to do it with out the support of my partner an my mother.
I had major surgery last year, as I was finding it more and more difficult to breathe. I was taken off Enbrel while they investigated my chest/lungs. What they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and were squashing my lungs. This happened because of my bent back. The surgeon opened me up hip to hip in order to pull everything back into place and then stitch my stomach to the abdomen wall, so this will not happen again! Unfortunately while in for this procedure, I caught MRSA and a throat infection. I was also told they found my hernia did not close, as they couldn’t get me flat enough, so after all that still have a hiatus hernia!.
Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and eventually moved down my face. This caused my lip to become a bit twisted up, looking as if I’ve had a stroke. I was given Botox, several times but did nothing to really help. My doc suggested an MRI to see why this was happening. It was all arranged that I go in to have the scan of my head, however as the table part is very hard and flat so, It was too painful to lay on it. So I must wait for them to come up with a better way of diagnosing this problem.
I got back on Enbrel in January, however I have been disappointed with the results. It’s as though it’s not as effective as it used to be. I have also noticed my hands are very painful now, with the knuckles swelling, and some morning they are completely numb. The doctors are thinking perhaps it is carpel tunnel and my knees are also in pain while I am walking. Feet, ankles, and sciatic nerve are all in pain too. My neck is bent very badly for I have to strain to look up the whole time I am walking. This is very uncomfortable, as you can imagine.
My eyes have been much better lately, in respect of my iritis. Leaving work has been helpful in this way, as I am not on the computer all day long like I use to be. Less stress from my job has also improved the situation, I believe. I am also using two different very mild steroid drops in both eyes continually, as a maintenance program.
These are the “highlights” of the last forty years of my life. There are too many to go over each one of them for their have been many over the years .These days the depression is more disabling, partly because just so tired of it all and partly because in all honesty, I don’t have much of a life. As I said earlier, no social life in the evenings, too much is involved when planning transportation. I am always concerned if I will be guaranteed a seat. I don’t think it’s fair to make plans with a friend and then call off at the last-minute. During the day, my friends all work and my partner now works nights. Even when I have visitors over, we have to be very quiet for my partner sleeps during the day.
I go out as often as weather allows usually with my Mum, as I am not too confident on my own any more. I think the effect of years of living with a chronic disease, is often thought of in terms of the effect on the body alone. It also equally affects the mind, family, and friends of those living with the disease. Ones life becomes AS, as it controls every aspect of your person. People treat you differently than those who are healthy and it affects every decision you make.
I would like to make known that having joined various groups pertaining to AS, and by starting my own for group for AS’ Peeps, has been the best thing ever. I’ve met so many fabulous out there, who are a pleasure to know. These people are from all over the world. All have a generous spirit. They are the ones who listen to my concerns and support me. We all exchange ideas, treatments, hopes and dreams, My life is much richer for these new friends even though I shall probably never meet them. But the big thing, the HUGE thing, is they all know,understand and accept everything you have to say because they LIVE IT. I wish social media, would have around in the olden days when I started on this journey, for it would have detracted from the loneliness and isolation.
What a joy there has been in the new friendships made, because of this horrible condition! That has been one of the major factors in me getting more involved and active in spreading information about AS. When I hear all the different stories, (and many similar conditions), the huge delays in diagnosis I can understand what these patients are going through. Some were diagnosed late, which allows the disease to do severe damage before any treatment has been given. This delay also allows the mental wounds to fester. Those that don’t understand have hinted that we are simply seeking attention or have a mental illness. In my case if it was not for my doctor who doggedly kept sending me to specialist after specialist, until the final x-rays showed a very damaged spine.
About Ankylosing Spondylitis
The disease usually starts in ones teenage years and early 20’s. Men are three times more likely to get AS than females. The disease usually starts with lower back, and early morning stiffness. It can also affect most joints, eyes, heart, liver etc as well. Many people with AS take NSAID’s (non steroid anti inflammatory drugs). The inflammation causes the pain. However in recent years, the treatment is a mix of these type of medication with muscle relaxants. Other medications that are used are the newer biologics in the form of injections or infusions. These suppress the immune system and so stop the inflammation.
There are periods of extreme activity known as flares, which can last any amount of time. There are periods of quiet, but usually the pain is somewhere in between. AS causes the bones, in particular the vertebrae, to fuse together, which restrict movement. (So some can end up like me, which is very bent over.) Patients frequently need fusing in the neck area. The other main symptom of the disease is severe fatigue. This can be a real problem as people can look well and so appear to be lazy! One day you can be severe pain, the next fine, but very tired. This again, is what people find hard to understand about AS. One doesn’t get ill, get treated and get well. Every one is different, and there is no way of knowing how you will progress, so the priority is to get pain management in place that works for you, and try to stay as mobile as possible.
I have now put on too much weight due to going a long time with little exercise. It is difficult to exercise with my breathing problems, recent surgery and the fact that it is winter here. I am hoping to get out and active soon and start a healthy diet. Hopefully this should help me shed some of the excess weight. The only exercise I am allowed to do is to walk. Having a fused spine and neck coupled with osteoporosis, this is the safest activity for me. I am not even allowed a massage!
A friend once told me my appearance, told the world, what kind of day I was having. When I am having a good day, I wear normal make up, all neat and tidy. Everything is in place – full face, hair, nails, jewelery and I wear a scarf. If I am having a very bad day, I represent myself in full camouflage mode! Do you know what? She was right!!”
I feel optimistic that with all the work being done to investigate the disease. The AS community is bringing much information to the attention of people interested and doctors, the new medication available, that those who have recently been diagnosed and those who will be will have a brighter future than those of us from all those whose journey started all those years ago. There is certainly much more support and information out there to enable them to be able to investigate and learn so they can make informed decisions.
Information from The National Ankylosing Spondylitis Society
– Ankylosing Spondylitis (AS) is a painful, progressive form of inflammatory arthritis.
– It mainly affects the spine but can also affect other joints, tendons and ligaments.
– Ankylosing means fusing together. Spondylitis means inflammation of the vertebrae. Both words come from the Greek language. Ankylosing Spondylitis describes the condition where some or all of the joints and bones of the spine fuse together.
– Entire fusing of the spine is unusual. Many people will only have partial fusion, sometimes limited to the pelvic bones.
– Other areas such as the heart, lungs and bowels can also be involved with AS.
– Inflammation occurs at the site where certain ligaments or tendons attach to the bone. This area of the body is known as, enthesis.
– The inflammation is followed by some erosion of the bone at the site of the attachment. This is known as, enthesopathy.
– As the inflammation subsides, a healing process takes place and new bone develops. Movement becomes restricted where bone replaces the elastic tissue of ligaments or tendons.
– Continued inflammatory leads to further bone formation and the individual bones which make up your backbone (vertebrae) can fuse together.
– The pelvis is most commonly affected first. The lower back, chest wall and neck may also become involved at different times.
AS is a very variable condition. Some people with AS have virtually no symptoms whereas others suffer more severely. AS tends to affect men, women and children in slightly different ways. In men, the most commonly affected areas in men are the pelvis and spine. Other joints which may be involved are the chest wall, hips, shoulders and feet. In women, the involvement of the spine tends to be less severe. The most commonly affected areas are the pelvis, hips, knees, wrists and ankles.
As a devoted advocate to informing others of the dangers of AS, she writes for various chronic illness blogs:
Masquerade of Words ( Spondylitis Blog Carnival) masqueradeofwords.wordpress.com –A group committed to spreading information about the disease. This way the variations of the disease can be clearly seen. This blog also educates friends and family of the many facets of AS.
AS Peeps and AS Standing Tall Together and Thinking out Loud – jackie-aitchison.blogspot.com – Jackie created these groups to exchange ideas and offer support to those with the disease.
She is also a very active book reviewer. For a book review, you can find her at Book Reviews by Jackie – feline9-bookreviewsbyjackie.blogspot.com.
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