I have been an active, energetic, “together”, happy and organised person most of my 55 years. The health problems I have had in past years have not affected my life too much. Lower back, leg, ankle and knee pain were manageable with sensible behaviour, using a Swiss Ball as a chair at work, bandaging when necessary and exercise. I have psoriasis and allergies and used to have asthma, hay fever, high blood pressure and high cholesterol.
Suddenly in early 2010 new symptoms appeared. Areas of my body where I had had some pain for years now became more painful. A new type of pain which felt like bad bruising started in my hands, feet, chest, and ribcage front and back.
Swellings in many areas also started and I was losing strength. The pain was so bad that the pressure of a shower or the weight of bedclothes would hurt. Wearing a seatbelt was torture and I could not let anyone hug me. Sleeping was difficult as every position I lay in hurt. At the same time a burning red rash started on my neck and chest and being in a warm room especially if there was no air movement was almost unbearable. My memory started to fail, I became confused easily and could not concentrate. I was having trouble communicating and putting thoughts together.
Fatigue, sleeplessness, depression, anxiety, noise and light sensitivity, lightheadedness, headache and nervousness became part of my life. I had to take sleep medication to get through night pain and still take it now. Tears were frequent with the pain and not knowing what was happening to me.
In March 2011 I saw a GP who specialised in skin problems, an immunologist and had a lip biopsy performed. I was diagnosed with Sjogren’s Syndrome which is an autoimmune disease. It varies from person to person and for me it means painful stiffness in my joints and a very dry mouth and eyes. Management of Sjogren’s for me is with steroids, physiotherapy exercises and dental visits twice a year.
Unfortunately a nerve was cut during the lip biopsy and the nerve damage causes a painful numbness (neuralgia). So far the condition seems to be permanent. In June 2011 after a referral from a second immunologist I saw a Specialist Pain Medicine Physician. After examination, questions and listening to “my story” he told me I had a condition called Chronic Widespread Pain Syndrome (not Fibromyalgia) with Cognitive Dysfunction. He asked me what percentage of my life in the last 20 years would I say that I had been “living on the edge” or hypervigilant? I was very emotional at the time, did not want to face the truth, knew where he was going and played it down. 50% was probably the correct answer.
The diagnosis was not as hard to accept as the cause was and it made a lot of sense. The specialist told me I was very sensitive to my environment and certain “stressors” had affected my health. I cried as he identified three main stressors as husband, family and work and as he said I would need to control these in order to reduce pain. How does one control time with husband and family without hurting them and feeling guilty? Work was easier to deal with. I was started on opioids which reduced the pain almost immediately and I have been on them since. The dose was increased slowly over the years to a level where it works well for me now. Not only is my pain reduced but so is stress and the pain is more “liveable”. I do physiotherapy exercises for upper body pain. "My pain is related to being very sensitive to my environment and living for years with certain stressors, which have made me more sensitive and caused a problem with the part of my brain that signals pain.
There are two stressors that affect me most, and I am learning to control these and be self-preserving. One is aggressive angry people, the other is my large complicated family. My husband had been diagnosed as depressed in 1994 and Bi-Polar in 1997. He had been taking medication for both conditions and together we tried to get more help but got nowhere. His behaviour towards me was starting to affect me more and he was coping less and less as I became increasingly unwell. Early in 2012 I left my senior level bookkeeping job as my cognitive problems were starting to seriously affect my work. I hoped to be off work no more than three months with the intention of sorting out my medications and de-stressing. I really enjoy work but three years later I have not been able to return.
Later in 2012 I became depressed, was prescribed anti-depressants and started to see a clinical psychologist for the first time in my life. I lost 25 kg in less than a year and was considered to be anorexic to some degree - I just did not want to eat or drink. I did not mind losing weight. That was one of the few good things I could see then. By now I was really feeling like I was falling apart and that life was not worth living. I was having more frequent suicidal thoughts. Painful conditions in my knees, Bursitis and Chondromalacia patella were also diagnosed. I had a cortisone injection for the Bursitis and added specific physio exercises to my regime. Neck pain developed with Spondylosis and Stenosis being diagnosed so I saw the physiotherapist again. Then pain in my jaw increased and I was diagnosed with TMJ Dysfunction and had to have a full coverage top splint made and be careful with what and how I ate. A lot of clenching due to stress had exacerbated the condition.
At the end of 2013 we moved to Newcastle to see if the warm weather and being further from my family would help me, and us as a couple. Unfortunately a lot of things did not work out and I became severely depressed and did not want to go anywhere, not even outside the unit (agoraphobic). I would put off shopping until we had nothing left to eat as I found the noise and busyness in the shops too distressing and I did not want anyone to speak to me. Often I would burst into tears even in the shops. Some days I did not get up till mid afternoon and would stay in my room all day. The psychologist asked me if I needed to go to hospital. Issues with my husband escalated as he became more angry, intolerant and verbally abusive. I had started to shake physically especially after an argument and was getting painful cramps. Headaches were now present all the time and serious headaches were happening frequently. Right sided face, jaw, ear, scalp, neck, shoulder and arm pain increased and pain behind both eyes started. Noise, light and smell sensitivities increased. I was also having food cravings.
Mid 2013 after six months of talking things over with my psychologist I decided to separate after 25 years of marriage. It was and still is the hardest decision I have ever made as we are good friends. I still love and care about my husband but I can’t live with him. It is literally too painful and stressful for me. Needless to say this is not easy for him either. 2013 was the loneliest most difficult year of my life. We returned to the ACT at the end of 2013 and we each stayed with friends.
In early 2014 I saw a neurologist and was diagnosed with Chronic Daily Migraine and Chronic Daily Headache for which I take a calcium channel blocker. I was taking a second medication for severe attacks but have recently suffered side effects. At present if I have a severe migraine I just have to sleep it off and will talk to the neurologist about this on my next visit. I was also diagnosed with Osteoarthritis in multiple joints and lumbar region for which I take analgesics and do physio exercises. Before exercises and medication my wrists were so painful I could not use a knife to cut an apple. I now have exercises for my body from neck to ankles. Also in early 2014 my husband was diagnosed with Aspergers Syndrome (ASD) which has answered a lot of questions for me and confirmed my decision to separate.
He is still on anti-depressants but not the Bi-Polar medication.
I am the oldest of 10 children and the family is quite complex. My father was frequently absent when I was a child and I took on a lot of responsibility to help Mum. I have been married to an undiagnosed/untreated “Aspie" since 1988. My jobs were demanding and I did a lot of voluntary work. A number of my painful conditions are directly stress related - CWPS and Chronic Daily Migraine. Sjogren’s Syndrome can be triggered by stress too.
I now seem to be on the right medications as with my chemical sensitivity it took a while to find the ones that worked and did not cause side effects such as hair loss, which were very upsetting. I have a wonderful “team” of medical professionals - GP, pain specialist, rheumatologist, psychologist, physiotherapist, neurologist and dentist. I am not in paid employment at this time and look forward to working again. Often I find myself helping others from my own experience which is rewarding. I am involved with two Australian pain associations and take part in research questionnaires. Family and friends say my personality has changed as I am more serious, less social and don’t have much of a sense of humour. I have realised I don’t even smile or laugh much and I don’t get jokes. Sometimes I can’t follow conversations, movies or books, lose and drop things and can’t remember simple words. Constant pain, different medications, grief and loss have contributed to these changes.
However I know the real me is still there. It is now mid 2015 and the pain is managed (I feel better physically) but the emotional and cognitive parts of me have a way to go yet. With medication, physiotherapy, psychology, exercise and diversion I will improve. I spend time with positive kind supportive people, do things I enjoy, put me first, accept my pain and don’t fight it. Basically I try to live “less stress less pain”.