Fibromyalgia – When you can’t see the wood for the trees

As featured in the August Edition of Fibromyalgia UK Magazine

For many, a Fibromyalgia diagnosis can come after a very long time of trying to work out what is happening to your body. There will likely have been numerous appointments, many tests, sometimes misidiagnosis, and before you have even embarked on becoming better, your brain is already full to bursting with information. So how can it be possible to know which way to turn? I’d like to share with you my way of working all of this out.

There’s the old saying “You can’t see the wood for the trees” and that can often be true when working out which treatment course to embark upon. There are many pieces or research, lots of data, even more articles, and there is alway someone who wants to tell you about their daughters, friends, cousins wife who has fibromyalgia and what works for her.

After diagnosis and my initial grief, I managed to dust myself down, and stand up against the fibromyalgia, but choosing which path to take was not always easy, and I had to do many u turns on my journey to becoming well enough to return to work and the life I love.

Which medication should I choose? Should I choose any medication at all? What about complimentary therapies? I’ve heard diet makes a difference, is this true? How do I even talk to specialists about treatment without a referral?

This first step for me was to think about what I truly wanted for my treatment. Now, I’m not somebody who takes even paracetamol particularly easy, so would I realistically be able to take the opiates and sleeping tablets I was being offered? Probably not, so while not striking this path off my list of options entirely, I did put them to one side. Which ultimately meant going down a less medicalised, more complimentary approach.

I started by looking at what was available to me either on the NHS or privately within my very small budget, and then looked at the research behind whether or not these treatments were effective. There was no point in looking up treatments for something I couldn’t afford as I would only have felt resentful that it may benefit me but I would simply never know. You also have to think outside of the box a little if you don’t want risk not being able to put food on the table in your quest to treat your fibromyalgia. Do you know someone who may be able to offer some therapy for mates rates? Is there a local college or university nearby that offers heavily discounted rates for essentially the same treatment overseen by a qualified practitioner? Are there any trials going on within your NHS trust that you can participate in?

Even with my limited budget and NHS offers there was still a wide range of things I could try, CBT, physiotherapy, mindfulness, acupuncture, looking at my nutrition, exercise, massage, but it was difficult to know where to start. In the end I started by looking at what I could get for free, for obvious reasons, before working out what I would need to fund myself. I asked my rheumatologist if there were any trials I could participate in and this is where I accessed my CBT, and I got it very quickly. I asked my occupational health department what they could offer and from this I managed to access Occupational Therapy and Physiotherapy. I then asked around my friends and family via social media if they know anybody that offered complementary services and from this I managed to get acupuncture and nutrition very cheap. And finally I looked at what I could teach myself and from this I developed my own exercise programme in collaboration with my free physiotherapy and taught myself mindfulness with the aid of a cheap phone app. I’m currently exploring massage through a local college which offers an hour long full body massage for £18!

However, even with all of these wonderful services at my disposal I was careful not to jump in and try them all at once. I staggered my trials of each treatment by a few weeks and kept a symptom diary to monitor the impact on my symptoms. Had I started them all at once, I wouldn’t have known what was helping and what wasn’t. By staggering my approach I managed to ascertain what worked well and what didn’t and as a result I have almost completed a course of CBT, have a manageable exercise program, have made permanent changes to my diet, made permanent changes to my work environment, and most importantly I feel a whole load better.

So I guess the trick to finding a treatment that works for you is to think about what type of person you are and what type of treatment you can commit to. Can you commit to doing your own physiotherapy everyday? Will you be honest and open enough for CBT? Do you mind taking medication? Do you have a needle phobia? What is available? What can I afford? Once you have answered these questions you can then start looking at ways to access the treatment and use them to hopefully, one day, thrive with fibromyalgia.

Fibromyalgia – Riding the bumpy road to acceptance

As featured in the June 2017 Edition of Fibromyalgia UK Magazine

I’d been waiting what felt like a lifetime to find out what was wrong. I’d been poked, and prodded by numerous professionals, had to explain my symptoms what felt like a thousand times, and each time the doctor thought they had cracked it. Then results came back negative and they were just as stumped as before, what was wrong with me? After going through this cycle a number of times, I finally reached a diagnosis of Fibromyalgia, then what?

I went to my diagnosis appointment, like all of my appointments, alone. I went hopeful of an answer, so that I could begin to get better, to take action to battle against the pain and fatigue, yet when I got that answer, I didn’t reach the climax of relief I thought I would. Instead, I was scared, lonely, and confused. It was like somebody had pulled the plug on my future, my career, and my whole being, I felt like I had been sentenced for a crime I didn’t commit. Being on my own made my head go into a complete spin, and I’m not even sure how I got home. What I do know is that when I did the hopelessness flooded out of me like a tidal wave and I was in more pain and more fatigued than ever. The diagnosis rollercoaster was about to begin.

I spent the first part of the ride figuring out what to do. The process I followed could be likened to grief, I even doubted that the doctors had got the diagnosis right at all, which is a classic denial symptom. I longed for the person I used to be, I felt like I had lost all my identity, and that I would never regain it. Anger and denial came hand in hand for me.

I had already discussed with my rheumatology consultant my wish to treat the fibromyalgia as naturally as possible, I’m not somebody who likes to take paracetamol, let alone any serious medications. I had agreed that I wouldn’t rule out taking medication, but for now I wanted to start gently and work my way up, working holistically with my body, and seeing how I got on. Was this too much to ask? When I said this it became quite clear that this was a path that I was going to have to pursue on my own, after all, holistic naturopathic care is not something the NHS currently, nor in the near future will provide. I asked if there was anything at all that could be done and made suggestions on how they could help me, knowing full well the answer would be no as the services simply aren’t available. I bargained hard but bargained with the wrong people. A few days later I even emailed my rhuematologist with some suggestions for further tests to rule out other possible conditions that had a more robust treatment plan, desperation and bargaining at its worst.

I felt that I had to be proactive. I had to use the pain and the desperate need to not be defined by the Fibromyalgia to my benefit. The first thing I did was to do A LOT of research into exactly what fibromyalgia is believed to be, and the evidence that can be used to base my treatment on. Was the research reliable, and had other people, those with Fibromyalgia symptoms similar to mine found benefit? The information available was overwhelming, I spent far too much time doing this and it made me focus negatively on my diagnosis, which was not the best, both physically and emotionally, I was drained. I enter a depressive state, I felt like I would never get better, that nobody could help me and feared that I would lose my job.

Then I began speaking to others who live with fibromyalgia about their symptoms on social media sites and forums and soon realised that while no one fibromyalgia warrior is the same, we do all have one goal – an urge to get better and to live our lives to the fullest extent possible. This will look different for each one of us, but on the whole we all have the same aim in mind. To do this we all need different treatment regimes, some with minimal medical support and some with very heavy medical support. There is no treatment plan that fits everybody and so to find out what works for you, you need to try a number of techniques, one at a time and find out which ones work and which don’t.

This was the point where I accepted my diagnosis and I began to feel more positive and hopeful. I need to stress that this cycle of grief, denial, anger, bargaining and depression, took place over an incredibly intense period of time that only lasted about 2 weeks, but was tiring. However, it takes time for the heart to accept what the mind already knows.

As I accepted my diagnosis, I started to become honest with people that I knew about my diagnosis, not to gain sympathy, but so that they could begin to understand why I wasn’t quite my old self. When you share, news very quickly spreads, like a wildfire actually, but while some may perceive this to be gossip, I found it very useful. Why? Many people, as a result of hearing my news, shared their own stories with me, or knew somebody with fibromyalgia that I could speak to, living with the beast that could relate to me. There were also a number of people, who upon hearing my news would offer up their skills and expertise, or those of a relative or friend, to help me on my journey. This is the point when I no longer felt alone and the positivity flowed throughout me, I finally felt that maybe, one day, I would be a new sort of ‘well’. Optimism was now a word in my vocabulary again, which was difficult to find in the wake of a fresh diagnosis, when things were scary, uncertain and I lacked control. Without the support of my peers I would never have reached this point.

So here I am today, flitting somewhere between buoyancy on some days and frustration on others, and thats ok. People will tell you to be positive, upbeat, and that everything happens for a reason, but that doesn’t mean that you have to be excessively happy. For me part of having a chronic illness is learning to deal with the rollercoaster of emotions that comes with it, riding the waves if you will. Along with simply going through the motions, part of accepting a chronic illness is being able to articulate just how terrible somedays are to family and friends, without the fear of judgement. Being falsely happy all of the time, for me, is actually somewhere close to denial of the beast that lives inside you, and while you remain in denial there is no way of moving on. My loved ones now know that while on the whole, most days, I can be positive and bright, there are the occasional days when I just need the fibromyalgia to be acknowledged and take a step back to get myself back on track. What is important is that I don’t allow myself to wallow in a cycle of negativity, by being mindful and acknowledging my symptoms but then being hopeful that this shall pass and a good day will come again.

I hope you enjoyed this article and found it helpful. If you would like more information about how to get help with a fibromyalgia diagnosis then please do give me a shout either in the comments below or on Instagram, Facebook and Twitter.

Toodle pip!

You can find my blog and many other amazing blogs over at Fibro Blogger Directory

 

 

Fibromyalgia – Don’t Suffer in Silence

As featured in the May Edition of Fibromyalgia UK Magazine

Fibromyalgia can be difficult to explain, and even more difficult for people to understand, but this doesn’t mean you have to suffer in silence.

You may be reading this as somebody who is wondering if they have fibromyalgia, or maybe, like me, you’ve just been recently diagnosed, after a long time of feeling truly terrible and wondering what on earth happens next. Perhaps you have known for some time now that you have fibromyalgia but those around you don’t quite get it. You could even be a close friend or relative of a fibromyalgia warrior who just wants to try and comprehend what all this means.

Its hard to explain to somebody who has never experienced a chronic condition quite what it means to be plagued every single day by pain, or extreme fatigue, especially when you look fine on the outside. Sometimes it feels safer not to tell people how you are feeling because of the fear that although they hear the words you are saying they just cannot understand, or perhaps you just cannot even begin to find the words to explain to somebody how you are feeling, how your body feels like it is breaking down and how weary you have become.

If you are just beginning to wonder if you have fibromyalgia, please, don’t suffer in silence, begin your journey to understanding your pain and fatigue by going to the doctor. If you don’t like the first opinion, or feel dismissed, then seek a second opinion. You could have been suffering for years, and just getting on with it, but I live by one of my favourite quotes by Albert Einstien “Insanity is doing the same thing over and over again and expecting different results”, so why not go to the doctor and see where it may lead? If you find it difficult to get across how you are feeling then book a double appointment, chances are once you start talking you won’t be able to stop.

If you have just been diagnosed, then explain to people your diagnosis as best as you can. Especially to those close to you. Fibromyalgia can be a solemn lonely journey if you do not share it. You don’t have to tell the world, just somebody, anybody, who will help you. There is no shame is asking for help. Don’t keep your suffering inside in the fear of it destroying those around you, because ultimately you could end up destroying yourself.

For those of you who will be told by your loved one that they have had this diagnosis, remember, it is not your job to understand the journey they have taken, after all, it is not your journey but theirs. It is simply your job to say ‘I believe you, how can I help you?’.

Lastly, if you have been suffering with fibromyalgia for many years, don’t just survive, live. Your head may tell you that some days appear impossible, others risky, based on previous experiences, or maybe even pointless, but open your heart and face your fears head on, preferably with somebody you trust. Tell them that you are scared, and let them help you to let go of your fear instead of suffering the familiar. You never know, with the right support, you may well surprise yourself.

I have been lucky enough to have been offered the opportunity to write regularly for Fibromyalgia Magazine, a UK based magazine that offers worldwide support to Fibromyalgia warriors. Please click the link at the top of this maple to access this and more wonderful articles!