Fibromyalgia

Fibromyalgia Part 2……..

My fibromyalgia symptoms meant that I could no longer do my share of work around the home. Everything fell on David and I hated it. Fortunately I qualified for disability benefits so we were able to afford a cleaner and someone to help with the laundry and changing the beds. David still had to do the shopping and cooking as well as looking after me and working full time. He started to work predominantly from home which was a great help. I could not have coped in anyway without David’s support.

My pain levels varied from day to day but I was never without it. The initial buprenorphine patches had the side effect of making me itch all over so my doctor switched me to sustained release oxycodone. They did help but made me feel so doped up that they affected my quality of life. I made the decision to step down the analgesia ladder. I’ve finally got the balance right. I now take sustained release tramadol and prescription strength co-codamol as and when I need it throughout the day. I have a low dose of oxycodone for emergencies which works well because I take it only when necessary.

Although the predominant symptom of fibromyalgia is the pain there were other aspects that troubled me more. I permanently felt like I had the flu and couldn’t regulate my body temperature. My brain felt fuzzy; this is a well documented symptom known as fibro fog. Spending so much time at home resulted in agoraphobia so not only did I feel like a prisoner in my body, I felt like I was prisoner in my own home.

It is only in the last 18 months that I feel I have made any progress. Losing a lot of weight has really helped my mobility. It still hurts to walk but it feels easier. I’ve very recently managed to build a short walk in everyday and although it tires me out for the rest of the day it has helped to elevate my mood. I don’t know how maintainable my current regime is because it is still early days but so far so good.

I have had mixed responses from other people with regards to my fibromyalgia. Most people just don’t get it; some go as far as thinking that I’m malingering. Some people can’t accept that there is nothing that can be done or that I’m not complying with medical advice. Believe me if there was anything I could do differently to get well I would be doing it. There are a few people that really do understand and are invaluable to me.

I’ve often wondered why me? The cause of fibromyalgia is unknown but I am convinced that there is a strong genetic component. I think I’ve been having symptoms since my teens but it only became severe after a series of events.

  • The mental breakdown when doing my training.

  • A severe case of tonsillitis during my masters degree.

  • The gastric banding surgery.

I think that these happening in quick succession overloaded my brain/body and something had to give. I don’t think I will ever be ‘cured’ but I will continue to strive to make the best of the hand I’ve been dealt.

Fibromyalgia

Fibromyalgia Part 1……..

During my teenage years I experienced periods of feeling very unwell. I felt tired and achy, had bad migraines and unexplained tummy aches. I missed a lot of school because of it. I was taken to the doctor by my worried mother, but they could never find anything wrong. I know that my grandfather and mother often thought that I was playacting. I was told that my disordered eating was the probable cause. When I lost weight at 18 and started a new hobby of trampolining I did start to feel better.

Fast forward to the autumn 2004. Following my breakdown after my attempt to become a teacher I decided to pursue a career in software engineering. I enrolled in a masters course and I loved it. I passed with distinction and found my dream job which I started at the beginning of 2006. I was at my heaviest weight of 300 lbs and my health was suffering. I needed a few weeks off in June to recover from umbilical hernia surgery and I was paranoid at how this was being viewed by my colleagues. This was exacerbated by requiring more time off in the December of the same year for carpal tunnel surgery. Following this I was determined to get myself healthy. In February 2007 I made the decision to take control of my eating once and for all and had a gastric band fitted. Initially all was well; I rapidly lost weight and was feeling really good about myself.

That summer I was sat at my desk and my arms felt like they were burning. Nothing I did made any difference; painkillers didn’t work. I thought maybe I needed to have carpal tunnel surgery on the other hand so I was referred back to my hand surgeon. After nerve conductance tests came back negative he referred me to a rheumatologist.

By the time I saw the rheumatologist I was experiencing pain all over my body and the most debilitating fatigue. It felt like a whole pint of blood was drawn for testing for every possible condition imaginable. The only thing it showed was that I was vitamin D deficient; hardly surprising as I have always hated the sunlight and prefer to stay indoors. I was asked to strip down to my underwear and every inch of my body was scrutinised. I was prodded at particular points on my body and each one was really painful. The points are shown in the diagram below:

h9991611_001b

In order to qualify as having fibromyalgia 11 out of these 18 points need to be tender; I had all 18. I was prescribed strong painkilling patches and told attend a coping skills program. I also had a course of hydrotherapy. I tried to do a phased return to work in early 2008 but finally had to admit defeat in late March. I haven’t been able to work since.

My condition rapidly deteriorated. I became light and noise sensitive and had to use a stick to walk. I hated being a burden on my family. I’d finally got my depression under control and now they had to deal with this. I did have some very low times coming to terms with my situation. It just seemed so unfair.

The medical advice for sufferers off fibromyalgia is to pace your activity and undertake some gentle exercise. My fatigue was so profound that this was impossible for me, even showering would wipe me out for the entire day. Sometimes I would force myself to do things but this would take me days, sometimes weeks to recover. If I didn’t have the gastric band I know I would have eaten my way into oblivion. My diet though was still not very healthy. I was too tired to chew the healthier food groups and instead lived off high fat, high sugar foods like chocolate and biscuits. I knew it wasn’t going to help my situation but I felt trapped. Although I did regain some weight it stabilised.

I have a very active brain and really struggle when I’m not using it. I started to look for things I could do. My Macbook became my link to the outside world. I did some university/college level courses on anything I found interesting, I have always loved to learn. I also took up a number creative projects; as long as I could break it up into 10 minute sessions it would work for me, one of these was reborning. Reborning is the creation of life like baby dolls by painting many thin layers of paint to build up a realistic skin tone. I would do one layer at a time and rest in between, it was ideal. Below is a photo of a doll I completed this year.

Rieke_10.jpg

 

Depression

Depression Part 2……..

Prior to going to university for the second time I had managed to ‘maintain’ my weight at the healthy level I’d reached when I was 18. This was through my usual cycle of binge eating and panicked dieting. As my depression was so severe I was unable to stick to a diet and during the 3 years of my degree I gained a total of 90 lbs. I despised myself for being so weak willed. My depression continued to be a serious issue and by this time I had been on several different antidepressants without finding one that worked sufficiently for me to live a normal life. My self harming continued and in 1997 I started seeing a psychiatric nurse weekly.

In February 1997 I had a miscarriage which obviously didn’t help things. My self harming reached such a level that my nurse threatened to section me for my own safety and I think it was this that finally made me turn the corner. I fell pregnant again in the December of 1997 and had Katherine the following August. Following Katherine’s birth I started taking medication again and had a couple of good years.

My self harming returned in 2001 and I finally realised the reason why I was doing it. It was a way of letting those around me know how bad I was feeling. Depression is an invisible disease and people that don’t experience it themselves can’t understand how it feels. Realising that it was almost a form of control made me feel so ashamed that it gave me the strength the stop. I have not self harmed in 17 years. That’s not to say I’m cured as I still get the urge to cut, but I know I don’t want to go down that self destructive route again.

I stayed at home with the girls until 2003 when Katherine went to school. I then decided to retrain as a primary school teacher. In the months prior to this, there had been a lot of bad press about the antidepressant Seroxat. As this was what I was taking, I decided to stop taking it. My teacher training course was a disaster. I was placed in a small village school where the headteacher was a total nut job -and that is being kind. It would take me hours to describe everything that went on, so I will just mention a couple things. I was not alone in feeling the way I did about her, she was intensely disliked by the entire staff. The worst thing for me was that she daily humiliated the children she didn’t like (e.g. by singling out them for unwarranted criticism in front of the whole school). I asked the other staff why they didn’t step in and was told that they ‘just have to make up for it afterwards’. Without any medication I had a total mental breakdown after 8 weeks.

I was then put on the antidepressant Sertraline and remarkably over a period of 6 months my depression was stabilised. I still had low periods but they were no longer all encompassing. This wasn’t the end of my mental health issues but it was certainly a massive step in the right direction.

A QUICK NOTE ABOUT ANXIETY

This is a hard thing for me to talk about because I am always worried about how I am being perceived. I am extremely lucky to have a husband who loves me unconditionally. He is the closest friend (and other things) I’ve ever had. I actually suffer from separation anxiety when he is not home. I know this makes me sound like a child and I know this is not normal. I have made great strides towards controlling this anxiety as it was having a such a negative effect on our lives. It did require an additional medication to dampen the anxiety response but it also required a lot of introspection and honesty on my part. Things are a lot better now but I still have to work at it.

Depression

Depression Part 1……..

I started puberty early and was the only girl to start my periods at primary school. Puberty also came with clinical depression. I was a diligent student and sought happiness by achieving good grades. This also meant that when I didn’t get the grades I thought I was capable of, I would berate myself for being stupid and go into extreme lows that I couldn’t get myself out of. I felt that I had no connection to the outside world, that my thoughts were out of my control. I now know that in psychiatric terms, this is known as depersonalisation.

I was lucky enough to have a loving family and felt safe at home but I sought additional comfort in food. This would lead to weight gain followed by panicked dieting. Throughout my teenage years I was either bingeing or dieting. Fortunately I was unable to make myself sick after bingeing so I was spared the horrors of bulimia but it wasn’t through lack of trying.

It took a couple of upheavals for my clinical depression to become so severe that my mother took me to the doctor. The first of these was losing the friendship of someone I had come to value greatly (this will be covered more when I come to talk about my autism). The second was the change of pace in my studies going from GCSEs to A-Levels. I was prescribed the tricyclic antidepressant amitriptyline. It had the immediate effect of making me so sleepy that I couldn’t function at all. I managed to get through my first year of sixth form effectively. In my final school year I managed to get my head together enough to not only succeed in my A-Levels and get a place at my top choice university but also to get my eating under control and finally reach a healthy weight. However I found going to university and leaving home very traumatic which caused my depressive symptoms to return with a vengeance.

My time at university was confusing. On the second day I met David who was to become my soul mate and life long partner. I think we both knew within a few days that we were kindred spirits. Our experiences growing up were very similar; both of us were misfits. I fell in love hard. Being clinically depressed and experiencing love for the first time I suspect would be difficult for anyone. I would go from being deliriously happy when I was with David to being almost suicidal when I wasn’t. We became engaged 4 months later and shortly afterward I discovered that I was pregnant. I left university and returned home. My depression wasn’t too bad during the pregnancy but returned six months after Charlotte was born.

I returned to a university nearer home when Charlotte was eleven months old. Studying for a science degree and being a new mum was tough. With the help of my family I was able to cope with the workload and actually enjoyed it. However during the second year my depression worsened. I started to self harm by repeatedly cutting myself with a scalpel and I didn’t really understand why I was doing it.

David and I bought our first home together in the spring of 1995 and married in the September. I graduated from university with a 2:1 honours degree in Molecular and Cellular Biology in 1996. I then began what I consider to be my adult life.

 

Uncategorized

Why I am doing this……..

It suddenly dawned on me today that almost all of the struggles I have faced over the 45 years of living on this planet have purely been the result of my brain not working in a way that would be considered ‘normal’. I placed the word normal in quotes because I don’t really think that there is an objective sense of a normal brain. I just know that a lot of my issues would be solved if my brain worked the way that it seems to in other people. It has taken years for me to accept that it is okay to be different, but at the same time realising that I needed to change the behaviours that were self destructive and those that negatively affected the people around me.

Over the years I have officially been diagnosed with the following conditions:

  • Depression and Anxiety
  • Fibromyalgia
  • Autism Spectrum Condition (specifically Asperger’s Syndrome)

There is some debate about the nature of fibromyalgia. Currently there is no known physiological cause for fibromyalgia; all known medical tests show that there are no abnormalities in the body. A study published in 2014 (https://www.medicalnewstoday.com/articles/283346.php) suggests that ‘fibromyalgia is linked to abnormal activity in parts of the brain that process pain signals and link them to other regions’. As this is the current thinking for fibromyalgia I will include it in my discussions.

Initially on this blog I will talk about my history and experiences with each of these conditions separately and then go on to talk about my daily challenges. I hope I don’t appear to be self indulgent in my posts. At the moment the purpose of this blog is for me to document my experiences and maybe learn something from it.