Depression, Fibromyalgia

Post Christmas Slump……..

For as long as I can remember I have always found the period from New Year to my birthday mid February difficult. I used to put in down to seasonal affective disorder with the lack of daylight being the cause. If this were true however, the effects should have started before January when the shorter daylight hours began. I think the fact that there are a number of family birthdays and Christmas to prepare for in November and December help to keep me focussed. There were things that had to done within a set period of time.

Now I am faced with having to motivate myself to do things without the pressure of time which I have always found difficult. At school I was the pupil that left their homework to the night before it was due especially if it was for a subject I didn’t like. My situation is also complicated by the fact that my CFS isn’t great at the moment. I am feeling tired a lot of time so my brain is on a go slow and everything feels like such a monumental effort.

I’m doing all I can to keep the house ticking over thereby removing any additional stress from David who is also finding things difficult at the moment. It is the first time in years that I feel that I am pulling my weight in our partnership and I don’t want to go back to being totally dependent again. It is for this reason that I am doing my utmost to keep my eating and exercise regimes going, even though it’s extra hard at the moment. I have my one-to-one yoga session on Wednesday morning which I am actually looking forward to.

I have decided to delay my medication changes until after my birthday as I don’t see the point of making an already difficult time worse. The fact that I have felt able to do this is huge, usually when I decide to do something and plan a date I stick to it regardless of whether it is advisable or not. My Slimming World consultant, Paula said on Friday that I have learned to be kinder to myself and I think this is the reason why I have been able to make progress long term.

Fibromyalgia, Weight

A general update……..

In my post of November 3rd I wrote about the final barrier I had to overcome in my fight against fibromyalgia i.e. stretching my tight muscles. True to form I have been procrastinating due to the fear of pain. I decided that I really had to do something to prevent me from putting it off any longer. A lot of fibromyalgia self help books recommend yoga. I did a bit of research into local groups and found a qualified instructor who offered an initial one-to-one session and lessons for a month for only £65. This means that I can try it out without having to worry about interacting socially with lots of new people all at once.

The instructor is called Ben Parkes and he has his own company ‘imaginatively’ called YogaBen. He was encouraging in his emails and I’m actually looking forward to getting started. Besides the muscle workout some of the class is spent on relaxation and mindfulness which in the past have proved very difficult for me. I am willing to give it 100% in the hopes that it will improve my overall health albeit in the long term.

In the past I have been known to get obsessed with new hobbies so I have made myself a rule that if I take to yoga I won’t do any more than two sessions a week.

Today at Slimming World I reached the milestone of dropping below the lowest weight I reached in 2014. I am now the lightest I’ve been for 23 years and I’m only 3lbs away from losing 100lbs in total. I don’t think my brain has caught up with my change in size as when I move around I feel like parts of me are missing. It’s a really odd feeling. I’m almost annoyed that it’s Christmas next week as it’s going to slow down my weight loss next week. I know I could stick to my eating regime 100% over the Christmas period if I really wanted to but it would only make me feel resentful of other people that can let themselves go. I’m not going to go mad though, I’ve decided to allow myself a portion of any dessert I want on Christmas day and that’s it. For anyone reading this, I must sound like a crazy woman but I’ve learned over the years that I cope better when I plan in advance.

Depression, Fibromyalgia

Medication……..

Everyone today is fortunate that we live in a world where many of our ailments can be successfully treated or prevented altogether. I am on a load of medication for my depression and anxiety and a lot of painkillers for my fibromyalgia. It took a long time to find which medications were best for me.

For the first time I am now questioning whether it would be beneficial for me to at least try to reduce my dosage and/or even come off some of them. David has recently come off his antidepressants and has said that he feels more alive now that his brain is not numbed. He is certainly different and although he occasionally gets a little stressed most of the change is very positive.

Painkillers are known to not work effectively for fibromyalgia sufferers and I am on so much I’m sure my mood is affected. I’m not fully alert and often have trouble motivating myself to do my hobbies. There is also the worry of addiction. I have been taking high strength opiates for over 10 years and do get symptoms of withdrawal if I’m late taking them. I know that I am addicted. My two main painkillers are tramadol and codeine. The tramadol is sustained release and I am on the maximum dose and the codeine is taken every 4 hours throughout the day.

I have made the decision to try to come off the codeine altogether. If I do it slowly I will me able to minimise the withdrawal. The tablets I take contain 30mg of codeine and are prescription only; you can get 8mg codeine over the counter so it will be easy for me to taper off my dose. I think I will be able to do it over 12 weeks. Of course if my pain becomes unbearable I will start taking it again.

I’ve been taking these medications for so long that I don’t know what my pain levels are without any relief. If I can stop the codeine successfully I will then make an appointment to see my doctor to discuss trying to lower my tramadol dosage. Following this I will then look at my antidepressants.

Eventually I hope to find the minimum amount of medication that I need to function. Hopefully this will lead to me feeling less doped up and be able to experience more of life.

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.