Fibromyalgia

Fatigue……..

Today’s modern living often leads to people feeling tired a lot of the time. Before I fell ill in 2007 I was no exception. My excess weight and poor eating habits didn’t help the situation. In the autumn of 2005 I was diagnosed with iron deficiency anaemia. Further investigations didn’t show the reason for why my iron levels were so low. It wasn’t until my gastric banding operation in February 2007 that the cause was discovered. I had a giant hiatus hernia that was inflamed and bleeding. Once this was repaired I did start to feel a bit better.

When I started to feel unwell in July 2007 the level of fatigue I experienced was so extreme that I had trouble supporting my head. There are some rheumatologists that believe that fibromyalgia and chronic fatigue syndrome (CFS) are the same condition. If the predominant symptom is widespread pain a diagnosis of fibromyalgia is given, if it is fatigue then CFS is diagnosed.

Unfortunately for me I had severe symptoms across the spectrum. I could have spent my entire time in bed but I made a point of getting up everyday even if it was just to spend the day on the couch watching TV. We had to employ cleaners because I could no longer do it myself. David had to take on the rest. I hated being so dependent.

Over the past 3 months I have been able to do a little more but I think I’ve overdone it. All week I’ve been really struggling to get up before 11am and on the days that I’ve had to get up earlier I’ve been wiped out all day. Finding the balance of activity and rest is so difficult. In my head I want to do it all but my body won’t cooperate. This is the hand I’ve been dealt and I just have to make the best of it.

Fibromyalgia

The final fibromyalgia barrier…….

The current medical advice for fibromyalgia patients is to engage in some gentle exercise combined with regular stretching to avoid the muscles becoming tight and causing more pain. For the past couple of months I have finally managed to achieve the former. The latter is another story.

I did a coping skills program approximately 10 years ago which provided a guide to which stretches I should be doing everyday; I found them excruciating. This was at a time when I had initially had to give up work and I was in a bad place mentally. I just didn’t see the point of causing myself anymore pain. Fast forward to today and I still haven’t done anything about it.

Since introducing my short daily walks I have started to feel so much better in myself. It still hurts to walk and it does tire me out but I feel I have more energy over all. I’ve been able to do a few things around the house which I haven’t felt able to do for 10 years. What more would I be able to do if added the stretching into my daily routine?

Unfortunately I have lost my notes from the coping skills program so I am searching the internet for something similar. I don’t want to overdo it and end up not doing it at all. I have considered trying yoga and have even found a beginners class I could attend. I think my muscles maybe too tight at the moment to even attempt it. There is also the hurdle of going to a group and not knowing the people there. My lack of normal social skills is always at the back of my mind and I just don’t feel that I have it in me to try at the moment.

So where does this leave me? I think for now I will try to get a hold of the proper stretching exercises from the hospital where I did the coping skills program. Hopefully I will feel able to start doing yoga at a later date.

Fibromyalgia

The fear of not being believed………

I have mentioned before that during my adolescence I experienced periods of feeling very unwell. I know that both my mother and grandfather (who was a retired nurse) thought I was playacting or that my way of eating was to blame. Not being believed has had a lasting effect on me.

When I was diagnosed with fibromyalgia there were many people who thought I was malingering. Even my husband thought I was exaggerating my symptoms. What was so hurtful was that my mother in law was diagnosed with chronic fatigue syndrome a couple of years earlier and he was full of sympathy and understanding. It took a number of years for him to realise that I was really ill.

One of the problems with fibromyalgia is that the symptoms are pervasive. It is very difficult to decide which symptoms are down to the fibromyalgia and which are indicative of something new. In May I had severe back pain and was told by a doctor that it was down to fibromyalgia. I had the same pain a month ago which I ignored even when it became so severe that my strongest painkillers didn’t touch it . It took me two weeks to go to the doctor and I was told that I also had a fever and tachycardia. I was diagnosed with pyelonephritis (infection of the kidney) and was nearly hospitalised. Fortunately I responded well to oral antibiotics and I’ve now recovered. This situation wouldn’t have escalated if I hadn’t had the fear of not being believed. I now have urine testing strips and a digital thermometer at home so I can check both if this happens again.

There are some in the medical profession that don’t accept fibromyalgia as a genuine medical condition. I have been fortunate enough to have a GP that is open minded. It is very difficult to get an appointment with him if I have an emergency such as a few weeks ago; it’s just the way the NHS is at the moment. I live in hope that current research will eventually find the cause of fibromyalgia so that I and other sufferers can feel some vindication.

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:

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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.

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