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The new woman inside

When I contemplated writing this mini autobiography about my relationship with Fibromyalgia and Myofacial Syndrome, I believed that it would have a dual effect; firstly, it may assist others who were in similar situations by offering a calming effect to know that you were not alone and that you would possibly identify many of my symptoms. Secondly, it would be part of my personal grieving for the woman I knew, to the woman I have become.

I had read that many people with FMS had probably had the condition for some time, as far back as their childhood and teen years. I cannot recall this in my situation. It appears that my condition was on the way following a serious motor vehicle accident. Back in 1986, I was working in Pentridge Prison, Victoria and was involved in a serious accident whilst driving the prison truck. I sustained two counts of whiplash as a result of two semi-trailers crashing into me from behind. I never had x-rays, so I was not aware of any damage, however was told that I had sustained muscle tissue damage to my neck.

During my employment at the gaol, I recall working in a high security unit which was like something from a sci-fi movie. White walls and floor, fluorescent lighting and air-conditioning. I often left my shifts with a light head, tension headaches, and sensitivity to light. I had my eyes checked and started wearing glasses with a dark lens to inhibit the lightness of the environment.

I can't really recall suffering greatly over the years, except for tight and sore neck muscles on colder days and a nagging click jaw on the right side of my face. At the time of treatment, physicians told me that the long term effects of whiplash were an unknown quantity and that I would more than likely suffer for it in later years. How true they were to be!

In 1988, I returned to Canberra and resumed working with Adult Corrections, Youth Justice and then Child Protection. I also returned to tertiary education in order to advance for the future. My professional career was set. I was in good health with only a kidney stone to speak of in 1987.

In 1991, I fell in love. I recall bitterness from my parents because of my choice of beau and many heated arguments and stressful situations over the next two years which included not speaking to my parents for over 12 months. It was also a time where my mother was diagnosed with cancer.

My mother and I had never had the ideal relationship. In hindsight, she was a sad woman who needed to be needed by me and such was controlling right to the very end. I believe that my anxious disposition had a lot to do with my childhood and my mother's influential rearing, although I don't consider that I was abused. I believe that the expectations required of me were unrealistic and subjected with strict discipline and little reward. Even as an adult, my mother appeared to have little faith, trust or respect for me in the person I had become which included my personal, educational and professional achievements. My ego was shattered on many occasions. As an only child, I desperately needed her approval and fought for it right up until her death (and beyond).

I had chosen to undertaken guidance and counselling with the Cancer society to understand her condition and more importantly prepare myself for her death and how I would cope with so many unresolved issues. I was very frightened of death and the concept of having to care for her whilst I had some very negative feelings towards her. Her illness made her worse than ever before. My father was beside himself and leant on me at a time that I was finding it very hard to cope myself. It was through a Social Worker in the Oncology Unit who convinced my father that I had a life and could not be expected to carry the entire burden of my mother's illness. My greatest support was my partner who I was able to debrief with regularly. My mother was in denial for most part and as such refused any external support, be it medical or pastoral. No-one knew of her illness which increased the demands on my father and myself.

My parents had by this time accepted my partner who became close to my mother some 12 months before her death. We married with my mother's blessing, after her death.

My mother died some 3 years after initial diagnosis. I didn't go through the usual shock, as I thought that I had very bravely dealt with the whole issue years before. How wrong I was. I remember speeding into overdrive. The funeral, selling the family home and moving my father. Now that that was all organised, it was time to get on with it.

In 1995, I became pregnant. I felt an emptiness which needed to be filled. I missed my mother terribly. I needed her to be here and share my happiness. I had the perfect pregnancy, however suffered with indigestion during the last trimester. I gave birth to a daughter and was in awe of the whole process. I was also extremely emotional and again alone. My mother was haunting me yet again. In hindsight, I guess I suffered some post natal depression, however positive.

The next 12 months were amazing. I had taken time away from work in order to be at home with my baby. I found it a difficult time with little support or help except for my dear husband. I had no sisters, aunts or close girlfriends who could share my tears and fears. I was an older mum who relied on my husband to secure me during these times. I constantly felt tired, being over zealous and anxious about the progress of my child. Sixteen months later, I returned to work part-time, not without a fight with my employer. I felt generally well and had recovered with no ill effects from the birth.

I can't really identify exactly when my symptoms surfaced. During a bitter Canberra winter, I recall my neck 'seizing up' regularly. During these 'seizures' I would also become lightheaded, dizzy and experience tingling all over my body, numbness in the throat, a tingling tongue, palpitations, flutters of reflux and tension headaches. I then started the rounds with Physiotherapists, Chiropractors, Osteopaths and Acupuncture. The treatments would relieve me, particularly chiropractic manipulations, but only for the short term. My problem was that no-one could explain to my why I was constantly lightheaded suffering with tension headaches and tingling. This was worrying me. So in which case I convinced myself that I had cancer!

This was the beginning of the roundabout of doctors tests and consultations with over 12 doctors over a 2 year period. It was determined that I had 'mild' degeneration of vertebrae in my neck and cervical region. There was no evidence of arthritis. I was told that there was nothing which could be done except to take NSAIDS for the pain and find a therapy which gave me relief. So, I took, digesics and anti-flammatories like lollies. Whilst they helped to combat the pain, the other symptoms remained. As no-one could explain the other symptoms, so again I would go to yet another doctor in the hope of some understanding, compassion and diagnosis. I had also developed a very sensitive stomach and tenderness in the sphincter region and tenderness across the sternum. By this time, I had endured many tests, which amounted to an awful lot of money, time energy and tears!; X-rays, ultrasounds of the carotid arteries, countless blood and urine screens. All negative. So . . . they hadn't found the cancer, I would have to find another doctor who would!

I pursued referrals through any doctor that would listen to me. I had to wait 3 months to see a Rheumatologist . He was not my preferred option, however I had an appointment with another leading rheumatologist/Immunologist for 6 months later.

By this time, I was very unwell. My symptoms were various and more frequent. I had chest pains, aches, stabbing pains in the chest region, tingling, tenderness at the base and around my ribs, burning sensations from my neck to the base of my rib cage and also nausea. I entered the casulaty section on many occasions with chest pains which following monitoring were apparently not caused by my heart. My life was based on daily medical appointments in a desperate search to get a diagnosis. My work and personal life were greatly affected. All I could think about was that I had cancer (even though all the test results showed up nothing) and gradually I slumped into a depression.

I then began reading and researching myself. I had somehow decided that I must have some type of rheumatic or muscular skeletal problem which would account for the pains I was feeling in my neck and chest. I came to this resolve, as I discovered tat I could actually control the pain by simple movement. Regarding the head symptoms, I was sure that I had a brain tumor! I then discovered 'fibrositis'. This was it. The symptoms were identical in particular that they were triggered by climatic changes. That much I had determined.

Laden with my test results, I eagerly attend the office of the rheumatologist to be told the same as all the others. I asked him whether I could have 'fibrositis'? The doctor discounted my theory stating that sufferers do not have a break from the pain as I did during warmer, still weather. He suggested that the pain in my stomach needed further investigation as he did not consider this to be related.

I was then referred to a gastroenterologist. Within 2 days I undertook a gastroscopy and low and behold, an acute peptic ulcer was found in my duodenum. I cried with joy. At last, something had been found. A biopsy discounted a bacterial ulcer which was good. I was then placed on Losec for 3 months in order for the ulcer to heal. Within 24 hours I felt better, the pains in my stomach had vanished. The doctor was not definite in his account of the possible causes, however did say that it was not uncommon whilst I had suffered reflux in my pregnancy. I imagine that the antiflammatories, stress and cigarettes didn't help either.

I returned to the rheumatologist and advised him of the find. He wasn't surprised. I again approached him about the fibrositis, and again he discounted my theory. He sent me away to exercise 4 times a week in order to strengthen the muscles in my neck. How could this be achieved whilst the tissue had all been damaged? I remember leaving the surgery devastated. I had really hoped I would have a diagnosis and that a magic pill would make it all go away. I came home to my husband and cried.

It was during a work related meeting I had a terrible episode (or 'flare-up' as I now know them to be called). I remember the day being extremely windy although not cold, as if rain was due at any time. Suddenly, my neck 'seized up', I felt faint, my head was splitting, my nose and tongue was tingling, my left arm went numb and I could not feel my fingers for some minutes. In a panic, my colleagues gave me a Mersyndol and all I remember was lying in the back seat of the car returning to Canberra convinced I would have a heart attack and surely die.

Those symptoms persisted for some 2 days. I had a horrific migraine and I was not able to speak coherently for 3 minutes. This was an extremely frightening experience.

I contacted the Rheumatologist in a panic. "I'm having a stroke!" I screamed, and described the events. He did not believe this to be the case and suggested that I continue the painkillers and go to the hospital if it got worse. So I did. All heart tests were negative and I was told that I had suffered an anxiety attack instead.

I returned to one of my 'standby' doctors. My desperation must have been evident as I sat and cried, yelled and screamed to be heard, again repeating the symptoms over and over. He suggested that I was anxious and depressed…well and good, but was this causing all the symptoms? I was then referred to a psychiatrist.

I was given 6 names of psychiatrists in the Canberra region. The earliest I could see one was 3 months! Mortified I rang the doctor back. "Lucky I'm not suicidal," I shrieked! He then gave me another contact of a psychiatrist who was new and relatively unknown. I rang him and cried over the phone. I was able to see him within 2 days. The day after this call, I again went to my GP seeking a referral to have a brain and neck scan. He reluctantly wrote out the referral stating that there was no need, as the x-rays had showed up nothing. I was adamant however, I needed to know about this brain tumor! He literally lifted his hands and stated that he didn't know what else to suggest, there wasn't anything left to test. As a last resort, he prescribed Efexor, an anti-depressant. I took the tablet the next morning and with in an hour, began convulsing. My husband took me to the surgery in a panic. The doctor suggested that this reaction was not uncommon! He could not prescribe a lower dose and that I should stick it out for the week in order to allow the medication to kick in! Needless to say I didn't take a further tablet.

I mustered up what little energy I had and walked in to the psychiatrist's surgery. I tried to remain calm and focussed describing the events of the past 18 months. I sat there for over an hour and realized that someone was actually listening to me, I wasn't being rushed and he kept eye contact with me allowing me to have my say. He concluded that I was suffering from anxiety and panic disorder and the symptoms I had described were in tune with this condition. He was mortified that I had been prescribed the Efexor, stating that the medication was very good for patients suffering sluggish depression. However, because I was suffering from anxiety, the medication had given me a burst of 'speed' (in order to treat the depression) and consequently I had a double dose of anxiety which had caused the convulsions. After patiently listening to my life history and in particular, the recent events, he was not at all surprised. In fact he stated that I was suffering a form of mild post traumatic stress including the death of my mother, the birth of my child, and my medical condition.

His confidence in diagnosis astounded me. Suddenly I felt an almighty sense of relief. He was sympathetic and patient. He prescribed Kalma (Valium) to calm me down. Because I had such an adverse reaction to the Efexor, the Kalma would calm me and not let me anticipate a similar reaction with the Aropax. I have never been a sleeper. Through my shiftwork days, I guess my body clock has never been the same. As it is I only sleep 3-4 hours at a time and always wake. After a few days of this, I often feel like I've been hit by a truck. The Aropax was prescribed to address the panic attacks and depression. On my way out, he assured me that within a week I would be a different woman. I admit that I was skeptical.

I then attended the MRI scan for my neck and brain. Due to the nature of the test, I suffered a panic attack in the tank and was not able to have the test completed. I returned the next day with my husband who was able to remain with me. The scan would find MS, tumors and peculiarities. I had none of the above. I remember leaving with relief. OK, so I didn't have a brain tumor!

I took the Kalma in conjunction with the Aropax the next day. Within two days, I had felt on top of the world. Within a week, I could conquer Mount Everest! I was back to the old me. I had no pain, no other symptoms except for a little nausea (which may have been caused by the Aropax). I rang the psychiatrist's surgery the next day to thank him for the 'miracle'.

I weaned off the Kalma after two weeks and then just used them when I needed to catch up on sleep. As the literature suggests, I had no problem getting to sleep, but could not remain asleep for the 4th stage of deep sleep. I had learned the crucial part that sleep plays in the FMS, so became conscious to adapt my sleeping patterns. I then discovered relaxation tapes and found they helped me during the 'flare ups'. I continued the Aropax for three months. I found that I had gained considerable weight, I was off work by this time under doctor's instructions and was careful with my stomach. So I ate small portions more frequently throughout the day as instructed by the gastrointerologist. I was determined to heal quickly. Why? Because I would get cancer of course!

I was seen monthly by the psychiatrist and by the third month, I returned to the psychiatrist to review my progress. I felt very cocky and determined to cease further therapy. The psychiatrist warned me that whilst I was susceptible to the anxiety and panic attacks, I would need to implement other strategies now that I was not on the medication. He suggested that I needed to remain on the therapy for a longer period, however I insisted that I was 'back to the old me'. Boy, did I learn yet again!

I finally got to see the other rheumatologist for a second opinion. Again, I described my symptoms and experiences whilst she sifted through wads of tests and paperwork which I had given her. I told her of my theory regarding the 'fibrositis'. She asked me to get up on the bed and commenced prodding. This was the first time that any practitioner had physically examined me. She identified the trigger points and confirmed that I had FMS. I cried. She was very sensitive, understanding and very knowledgeable. She offered me literature, suggested therapies to try and gave me the FMS support group details. She was pleased that I had already consulted with a psychiatrist which is what she would have suggested in the first instance. She asked to review me in 4 months. In her report to the psychiatrist, she stated "Miss Lloyd correctly diagnosed herself with FMS". Funny that!

I had the second gastroscopy to check on the ulcer. It had completely healed. The gastrointerologist was very pleased and has kept me on Losec for another 6 months.

During this visit, I referred the doctor to a section about reflux in some literature. I had to determine if the nausea was still being caused by stomach problems or the FMS. He was not very convincing stating that he knew nothing about FMS, but that it would be unlikely that it was my stomach and as my ulcer was not bacterial, the chances of recurring were 20%. OK, so I won't get cancer there!

You must be asking yourself why I was still on the cancer bandwagon? I guess that whilst I felt fine, my mind seemed clear and the 'c' word never crossed my mind. At the time, I guess I just needed confirmation which was taking 2 years so far to get in order to settle the mind set.

I returned to work and gave my employer the rheumatologist's report. She had been very supportive all the way through, so the letter just confirmed so many absences over the past year. I had also attended a couple of FMS support group meetings which I found a wonderful support and had been researching myself and reading much about the subject. Admittedly, I sought no further therapies. I was sick to death of all the doctors' appointments, the testing and repeated discussions to people who didn't know what to do with me. I had also spent so much money on all the treatments, that I felt I needed a break from everything and just get on with trying to cope on a day to day basis.

I did notice that my symptoms had greatly settled which made me think about how the psychological aspects exacerbated the FMS. I was sleeping better, I had no headspins or tingling or flushes. That was a great relief.

It wasn't long before I relapsed. Again the weather was the primary trigger. I had discovered after much research, that clouds, wind and pending rain were THE triggers. Unfortunately, this is not something I can control. So, I just keep an eye on the weather reports and anticipate the bad days. Seeing that we have had such inclement weather, it wasn't long before I was on the rollercoaster again. I humbly attended the psychiatrist again. By this time, he had received the rheumatologist's report and was well versed. He suggested that whilst we were getting into summer, I should try self help strategies and that we would review any continued medication next winter.

I had suffered badly over the next four months, but prevailed with what I could to get through each day. I returned to the rheumatologist who was pleased with my progress, however had nothing else to offer. I told her about my thoughts on returning to the Aropax therapy, however she was with the psychiatrist on this one and agreed that I should stick it out until winter. I'm due to see her again in June 1999.

However, again I relapsed, and in November of this year, I returned to the psychiatrist. This time I felt that I was sporadically depressed. The symptoms of the anxiety had greatly subsided . However there were still some occasions where I could feel a tickle of a panic attack. I found that if I ignored it, it would go away. The strategies the psychiatrist had suggested were working. I told him that I was constantly in tears. I was sick of feeling unwell and that due to the weather in recent months, I had not had a break from the pain, I was going crazy. Each night, I was going to bed fearful of what the day would bring. I found that panadeine would help with the pain and associated symptoms, but I was reluctant to take a lot due to my concern for my stomach. I cried again. I humbly apologised to the psychiatrist for failing, but that I could not wait until the Summer arrived. I was feeling sad for all the things I couldn't do, what I had become and missed the relationships with my family which were so determined by how I was feeling. The psychiatrist suggested that return to the Aropax for a few months as 'respite'. I was very grateful. I am also in therapy again.

At this time, I have no GP. I'd imagine I'd be on a list under a counter in most surgeries by now as a well known 'whiner'. However, my rheumatologist gave me two names of GP's who are well versed on FMS. I am yet to consult with them in the future when I need. I have found that this has been the most frustrating, when I could not find one doctor who knew anything about FMS. After two years, I was not in the mood to educate anyone. I felt that as professionals, they should take responsibility for learning about the condition. I simply did not have the energy to talk anymore. I have much to thank my psychiatrist for. He taught me to consult with specialists whenever possible. This was evident when I was prescribed that anti depressant medication and I reacted – this was clearly a lack of knowledge and appropriate diagnosis on his part which led to an unnecessary situation for me. Just what I needed! The rheumatologist is a very dedicated and sensitive woman whom I admire for her professionalism, knowledge and accuracy in her field. I thank her for the relief and reassurance she had given to my life. Unfortunately, she is a very busy person and is hard to see on the spur of the moment. However, she has a nursing sister who is versed in rheumatology and is available by phone to consult in times of dire need.

I have come to the end of my story to this point. As I read through it to make the changes, I feel somewhat embarrassed. The psychiatric episodes I underwent, I can now rationalise and begin to deal with. Being a highly strung and anxious person, I guess my reactions were to be expected. At least the psychiatrist confirmed this, so I don't feel so mad after all. Unfortunately, he is leaving Canberra next year and I will be referred to another practitioner in his surgery.

I also have my friends, family and work colleagues who so patiently sat and listened, sat and listened again, over the past 2 years.

At this time, I'm researching as much more information that I can in order to further understand the research. As most of you, I have good and bad days. I have tried to improvement self help techniques in times of 'flares', however at this stage I don't have the energy to purse alternative therapies. I feel drained from the past few years and am taking one day as it comes.

I hope that you have enjoyed my account, perhaps you have identified similar issues and situations. I never intended to create such a long winded document, however, I just felt that it would be unjust to not include as much as I could remember. If it has helped you in the slightest way, I have achieved my purpose in this story.

Your feedback would be appreciated!

Vera Lloyd
November 1998

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