Summer heat? What is this torture?

In the UK we are currently in the middle of a surprisingly hot summer. I know i just said UK and hot in the same sentence. Usually by this time of the year we barely reach short wearing weather and we always need a umbrella handy for when the heavens open which we have all grown to expect.

Have run out of spoons so im forked!

The worst part about chronic pain is the complete unknown. It will always be lingering in the background no matter how your feeling, waiting to turn a relatively good day into a painful one. Nothing in your life is planned because you can feel good today, or maybe even for a week but, then out of nowhere you are back to square one. It’s not just pain. It’s a complete physical, mental and emotional assault on your body.

There are 7 types of pain that are wrapped in the Fibromyalgia box. I felt it was important to break these down into bite sized pieces that people like me could understand as the internet can be full of technical terms and overwhelming information.

 Three of these have a medical definition:

Hyperalgesia: in short this type of pain is described as our brains sending pain signals but at a higher frequency than those without the condition. This causes an abnormally heightened sensitivity to pain.

Allodynia: Allodynia means “other pain”. Imagine the feeling you get when sunburnt. Your skin is painful to even the lightest touch. Now imagine this all of the time.

Painful Paraesthesia: also known as pins and needles is a pricking, burning tingling or numbing sensation which is usually felt in the arms legs, hands and feet. In my case I generally feel this in my feet. Imagine walking over hot burning coals all of the time. This is pretty much how it feels on a regular basis.

The other four are not medically defined but, are just as important:

The Knife in the Voodoo Doll pain: This pain I can describe as an intense stabbing pain that feels like it is going straight through you. 

The Randomly Roving pain: this pain is evidence that the pain from Fibromyalgia is never really concentrated in one place and is pretty random. It can migrate from one area of the body to the other with seemingly no reason

The Sparkler Burns pain: This one is pretty self-explanatory. In my 

experience I get this pain most frequently in my hands. It feels like a 

throbbing piercing pain that only seems to get worse if aggravated and can 

then trigger pain in other parts of the body.

The Rattled Nerves pain:  this pain in my opinion is one of the worst. It is usually a very uncomfortable body ache that can start up in all different places in the body, mine being mostly in my legs and back. This can then be joined by dizziness, nausea and anxiety.  It is said to be caused by stressful situations and can potentially be triggered by loud sounds, flashing lights and large crowds.

I never realised how much I took for granted – working, shopping, socialising – until chronic illness came into my life and these various types of pain became "normal" to me. Nothing has been quite the same since but, I am trying my best to put on a brave face and work with the body I have. I know it’s not going to be an easy journey but, we have to live through the bad days to get to the good ones.

You just have to remember that you were given this life because you are strong enough to live it :)

The only way to get better is to surround yourself with people who believe in you

Yesterday marked a year with my boyfriend and I felt that this would be an ample time to talk about support. This condition can be very isolating and whilst some people will be happy to support others will take it as just another word they don't understand and have no interest in doing so.

Thankfully my family and boyfriend are part of my close knit support network.  They have made an effort to find out more about Fibromyalgia and are trying their best to keep a smile on my face and make me laugh. Without their support I don't know what kind of state of mind I would be in.

I have also started attending a Fibromyalgia support group in Ealing where I have met some lovely people who know exactly what I am going through.  It is inspiring to hear how others are dealing with the condition and to get advice from those who have battled the system to get the support they need.

Sometimes we need someone to simply be there, not to fix anything, or to do anything in particular, but to just let us feel that we are cared for and supported.

My little fibro team may not be big but, I couldn't ask for better people to hold my hand along the way

I called my pain meds to say that they were meant to be stopping my pain. They said they liked that joke to.

Tablets, tablets and more tablets

I have enough tablets to set up my own pharmacy. Doctors seems to be handing them out like penny sweets (not that hey exist anymore unfortunately). To be honest, the tablets probably do as much good as a fizzy cola bottle.

Since being diagnosed with Fibromyalgia, I have been on two different tablets; Pregabalin and Gabapentin. Both, tablets are presumably used to treat nerve pain as they contain Neuropathic pain agents. The first tablets I was put on from the beginning were as much help as a chocolate teapot. The idea is there but, practicality isn't.

Due to this I was changed onto Gabapentin. These tablets came with a list of side effects as long as an English Winter and seemed to overcome the supposed benefits. From day one I suffered with hallucinations, hot sweats as if I was going through very early menopause and terrifying nightmares to only name a few.

I have unsurprisingly found no relief since taking these tablets. Although the side effects have thankfully begun to subside, there has been no decrease in the pain I have been in.

I would love to tell you all that popping numerous tablets with names I had never heard of has miraculously made daily living more manageable but, I would be lying and it just isn't the case.

"Hello, i'de like a refund on my body. Its kinda defective and really expensive"

My experience with doctors is far from a short story and not a straight forward one. I have been in and out of the doctors since I was a little girl rarely, ever getting the answers that I wanted. But it is safe to sat that the last few years have been the worst especially since I have been trying to find out what I was suffering from.

 I went to see my GP so many time that I should have just set up camp in the doctors. I had seen every doctor in the practice, all of them saying the same things and doing little to help. I would tell them of the pain I was in and how tired I was and without a shadow of a doubt I would be sent on my way with the same advice; Get some more exercise, sleep more and find a better work/life balance. After I had had my bought of B12 injections since previously being diagnosed with Anemia, I was simply made to feel like a lost cause. As if the injections were meant to have been some miracle cure. 

After an unexpected trip to A&E due to really bad pains in my chest, my mum and I got talking to the doctor that I was seen by. We spoke about the pain and fatigue I had been suffering with and she was surprised to hear that I hadn't been seen by a Rheumotoligist. She promised to send a letter to my GP to urge them to refer. All done and dusted right? Of course not. I waited ages for any sort of letter to be sent over, religiously calling the hospital and hoping that the doctor would keep to her word. 

After what felt like a life time and another appointment with my GP I was finally referred. Obviously, there was a long wait for an appointment but, I didn't care. I was finally going to be seen by someone who knew what they were talking about and wouldn't palm my pain off as if I just had a common cold. 

So the day for my appointment came and I was more excited than I should have been. I took my mum along with me as moral support and was hoping for some sort of miracle. I had an examination and the doctor checked a number of points on my body and asked me i 

My experience with doctors is far from a short story and not a straight forward one. I have been in and out of the doctors since I was a little girl rarely, ever getting the answers that I wanted. But it is safe to sat that the last few years have been the worst especially since I have been trying to find out what I was suffering from.

 I went to see my GP so many time that I should have just set up camp in the doctors. I had seen every doctor in the practice, all of them saying the same things and doing little to help. I would tell them of the pain I was in and how tired I was and without a shadow of a doubt I would be sent on my way with the same advice; Get some more exercise, sleep more and find a better work/life balance. After I had had my bought of B12 injections since previously being diagnosed with Anemia, I was simply made to feel like a lost cause. As if the injections were meant to have been some miracle cure. 

After an unexpected trip to A&E due to really bad pains in my chest, my mum and I got talking to the doctor that I was seen by. We spoke about the pain and fatigue I had been suffering with and she was surprised to hear that I hadn't been seen by a Rheumotoligist. She promised to send a letter to my GP to urge them to refer. All done and dusted right? Of course not. I waited ages for any sort of letter to be sent over, religiously calling the hospital and hoping that the doctor would keep to her word. 

After what felt like a life time and another appointment with my GP I was finally referred. Obviously, there was a long wait for an appointment but, I didn't care. I was finally going to be seen by someone who knew what they were talking about and wouldn't palm my pain off as if I just had a common cold. 

So the day for my appointment came and I was more excited than I should have been. I took my mum along with me as moral support and was hoping for some sort of miracle. I had an examination and the doctor checked a number of points on my body and asked me if each was painful or uncomfortable. I found that most of them were and at the time didn't know what this meant. She later explained that there are 18 different points that they would check and if more than 12 were painful, this would suggest that I had Fibromyalgia. Now at this point I had no idea what this was and only had a leaflet to go by but, I was glad to have finally been given some sort of diagnosis after such a long time. 

Unfortunately, it isn't a happy ending as I was immediately referred back to my GP without a follow up appointment. This led to my decision to change my medical practice as after 16 years I was tired of not being taken seriously. My new doctor has promised to help and support me throughout my condition but, he wants to do everything his own way. Over the last few months I have been able to find out from others with the same condition about, what doctors I actually need to see in order to help me cope better. Its sad to say but, the battle has only just begun and it seems that I will have to push more than I should have to in order to see a specialist or to get the support I need,

My story continues .....

The thing about pain is it demands to be felt

I wanted to start by telling you my story. Before the diagnosis. I wouldn't say that I was particular happy as I was feeling pain and emotional distress that there wasn't a reason for. I was feeling uncontrollable amounts of fatigue that didn't ever seem to subside.

 Ever since I left school in 2012 I have worked. My most recent job was working as a staffing and operations supervisor at Victoria's Secrets. This was until last August as in the previous months i could feel that my body was starting to struggle. I knew that it wasn't just because of the unsociable hours I worked or my muddled body clock.

I had previously suffered with Anemia during secondary school and after weekly B12 vitamin injections I was able to bounce back and complete my GCSE'S.  However, this time the injections didn't work. I felt so exhausted all of the time. Any common cold or cough going around I would catch almost as soon as someone had so much as thought about coughing. I was gradually having to take more and more days of work although I desperately tried to turn up for work everyday and try and work through it.

This eventually became too much for me and with little support from my employers I felt that my only option was to hand in my resignation and leave.

It's safe to say that in the period of time after that and up to the present day I have felt my confidence has slowly been ebbing away and my sense of self worth.  I hate being unable to build a career, have a steady form of income and have to realise that I may never be able to work full time again.  This is something I daily find quite daunting and quite frankly incredibly overwhelming.

I don't want to be unable to live my life the way I want to because of this condition but, the reality is that I can only live day to day.

& So the adventure begins +

Wearing a smile, a face of make up and keeping up a sense of humour. A few of the things I use as a facade to hide the pain that comes with my newly diagnosed condition. With this diagnosis my life has been turned into that of nightmares. A painful story of which I never thought would be mine to tell. With Fibromyalgia awareness day in the mists, I have plucked up the courage to share my story. That of a 22 year old who has had normal life pulled from under her feet. As Fibromyalgia is a condition not yet recognised I felt it was even more important to share my experiences and reach out to those who have felt the sting of a system that does not offer support and does not understand the daily struggle. I want to extend an olive branch to anyone and everyone with an invisible illness, know someone who does or wants an insight into the condition first hand.