So Sick of My Hat of Many Rocks.

Banging My Head on a Brick Wall

I've been relatively quiet of late for fear of boring readers with all that ails me, but I just feel the need to vent my spleen one last time before undergoing a transformation (hopefully.)

I have had pain, ranging from excruciating to agony to severe to livable, twenty four hours a day, three hundred and sixty five/six days, for over thirteen years. Can you imagine that? If not try to imagine the pain you might feel if you were to wear a hat with a bunch of two pound sharp rocks dangling from it on varying lengths of rope - all strategically placed to bash into various points in your back, neck, shoulders, thighs, guts, knees, ankles, feet, arms, hands, wrists, fingers and toes as you move around - some days individually, some days all together at the same time but at different intensities - some pounding into you, others niggling, others constantly embedded on a pressure point. Now imagine trying to function normally with all those rocks hitting you throughout the day, then imagine going to bed physically beaten and exhausted but being unable to sleep soundly because you're still wearing your rock hat and, no matter how you position yourself, there's a rock digging into you somewhere on your body. Just imagine that hat, and while you're imagining that hat imagine also being bombarded by an additional, bigger and sharper rock straight into your stomach and intestines causing them to cramp, become sore and irritated and giving you horrendous diarrhoea, nausea, painful trapped wind, bloating, constipation. Imagine having to live with those rocks for just a short period - say, a month. Do you think you might go a little off the rails? Become depressed, anxious? You'd kill for a cure wouldn't you? Well. that's me for the past thirteen years. I'm not saying it's that intense every day but I kid you not when I say that I've been getting pounded by at least one of those rocks every day for thirteen years - sometimes the niggling ones, sometimes the two pound sharpies!

I've tried virtually every treatment known to man, have undergone more invasive tests than any person should have to endure, have taken pills and potions, tablets and lotions, with infinite hope and ultimate despair. I have had enough.

I don't want pity. God knows there are so many more people who've lived with it longer than me and who have it even worse than me - at least I can still work, albeit part time.

The time has come for a different approach. I have signed up to do something radical in a last ditch attempt to overcome fibromyalgia, crohn's disease / IBS, insomnia, anxiety and depression. I'll be writing more about this new radical approach in the coming weeks. It is going to take a monumental personal effort - and, no doubt, it's going to be unpleasant for a while, but I have to see it through to the end or fibromyalgia will be the end of me.

Hopefully I'll soon be able to remove my hat of many rocks. Wish me luck!!

Chronic Pain & Insomnia - Treatments

In this post I'm going to look again at the disturbance to sleep caused through chronic pain and the treatments sometimes used to address the issue. Often one of the cruelest symptoms of chronic pain is the lack of sleep it causes. It's bad enough that you find yourself in pain when going to bed and on rising in the morning, but to be unable to get any sleep at all compounds the situation and, in turn, leads to a worsening of other symptoms such as depression. Insomnia will often improve by making changes to your bedtime habits. If these don't help, your GP may be able to recommend other treatments.
If you've had insomnia for more than four weeks, your GP may recommend cognitive and behavioural treatments or suggest a short course of prescription sleeping tablets as a temporary measure.
If we assume that the underlying cause of your sleeping difficulties is your fibromyalgia / chronic pain condition, treating this may be enough to return your sleep to normal. But, as we all know, finding an effective treatment for this is difficult!

The various treatments for insomnia are outlined below. You can also read a summary of the pros and cons of the treatments for insomnia,* allowing you to compare your treatment options.

Good sleeping habits

I've discussed this issue previously on this blog but it's worth repeating. There are seven 'rules' for developing a healthy sleep pattern:

• establishing fixed times for going to bed and waking up
• creating a relaxing bedtime routine
• only going to bed when you feel tired
• maintaining a comfortable sleeping environment that's not too hot, cold, noisy or bright
• not napping during the day
• avoiding caffeine, nicotine and alcohol late at night
• avoiding eating a heavy meal late at night

Read more about self-help tips for insomnia.

Cognitive and behavioural treatments

If changing your sleeping habits doesn't help, your GP may be able to refer you for a type of cognitive behavioural therapy (CBT) that's specifically designed for people with insomnia (CBT-I).
The aim of CBT-I is to change unhelpful thoughts and behaviours that may be contributing to your insomnia. It's an effective treatment for many people and can have long-lasting results.
CBT-I may include:

• stimulus-control therapy – which aims to help you associate the bedroom with sleep and establish a consistent sleep/wake pattern
• sleep restriction therapy – limiting the amount of time spent in bed to the actual amount of time spent asleep, creating mild sleep deprivation; sleep time is then increased as your sleeping improves
• relaxation training – aims to reduce tension or minimise intrusive thoughts that may be interfering with sleep
• paradoxical intention – you try to stay awake and avoid any intention of falling asleep; it's used if you have trouble getting to sleep, but not maintaining sleep
• biofeedback – sensors connected to a machine are placed on your body to measure your body's functions, such as muscle tension and heart rate; the machine produces pictures or sounds to help you recognise when you're not relaxed 

CBT-I is sometimes carried out by a specially trained GP. Alternatively, you may be referred to a clinical psychologist.
The therapy may be carried out in a small group with other people who have similar sleep problems, or one-to-one with a therapist. Self-help books and online courses may also be used.

Sleeping tablets

Sleeping tablets (hypnotics) are medications that encourage sleep. In the past, they were frequently used to help with insomnia, but they're used much less often nowadays.
They will generally only be considered:

• if your insomnia is severe
• as a temporary measure to help ease short-term insomnia
• if the good sleep habits and cognitive and behavioural treatments mentioned above don't help

Doctors are usually reluctant to recommend sleeping tablets in the long-term because they just mask the symptoms without treating the underlying cause.
They can also cause potentially dangerous side effects, such as drowsiness the following morning, and some people become dependent on them.
If they are recommended, you should have the smallest effective dose possible for the shortest time (usually no more than two to four weeks). 

Over-the-counter sleeping pills

A number of sleeping tablets are available to buy over the counter (OTC) from pharmacies. These are usually a type of antihistamine medicine that causes you to feel drowsy.
Taking OTC sleeping tablets regularly isn't usually recommended if you have insomnia, because it's not clear how effective they are, they don't tackle the underlying cause of your sleeping difficulties and they can cause side effects.
In particular, they can cause you to feel drowsy the next morning, which can make activities such as driving and operating machinery dangerous.
Speak to your GP for advice if you find yourself needing to take OTC sleeping tablets regularly.

Benzodiazepines

Benzodiazepines are prescription medicines that can reduce anxiety and promote calmness, relaxation and sleep. Your GP may prescribe them for a short time if you have severe insomnia or it's causing extreme distress.
Examples of benzodiazepines include temazepam, loprazolam, lormetazepam, diazepam and nitrazepam.
Long-term treatment with benzodiazepines isn't usually recommended because they can become less effective over time and some people become dependent upon them.
They can also cause a number of side effects, including:

• drowsiness and dizziness, which can persist into the next day
• finding it difficult to concentrate or make decisions
• depression 
• feeling emotionally numb
• irritability

You should avoid driving if you feel drowsy, dizzy, or unable to concentrate or make decisions, as you may not be able to do so safely.

Z-drugs

Z–drugs are a newer type of medicine that work in a similar way to benzodiazepines and are similarly effective. They include zaleplon, zolpidem and zopiclone.
As with benzodiazepines, long-term treatment with Z–drugs isn't normally recommended because they can become less effective over time and some people become dependent on them.
They're usually only prescribed for a maximum of two to four weeks.
Side effects of Z-drugs can include:

• drowsiness and dizziness, which can persist into the next day
• feeling and being sick
• diarrhoea 
• increased snoring and breathing problems during sleep
• dry mouth
• confusion

Z–drugs can also sometimes cause psychiatric reactions, such as delusions, nightmares and hallucinations. Contact your GP if you experience any of these effects.
Read the National Institute for Health and Care Excellence (NICE) guidance on zaleplon, zolpidem and zopiclone for the short-term management of insomnia for more information.

Melatonin (Circadin)

For adults aged 55 or over, a medication called Circadin is sometimes used to help relieve insomnia for a few weeks. It contains a naturally occurring hormone called melatonin, which helps to regulate the sleep cycle.
Circadin is usually only recommended for three weeks at first, but it can be continued for a total of 13 weeks if it helps.
It is unlikely to be prescribed to patients with chronic pain conditions as common side effects of Circadin include:

• headaches
• cold-like symptoms
• back pain
• joint pain

Treatments that aren't recommended

The following treatments aren't normally recommended for insomnia, because it's not clear how effective they are and they can sometimes cause side effects:

• antidepressants (unless you also have depression)
• chloral hydrate
• clomethiazole
• barbiturates
• herbal remedies, such as valerian extract
• complementary and alternative therapies, such as acupuncture, hypnotherapy and reflexology

It is also worth pointing out that long term insomnia and the treatments used to remedy it can have a negative effect on your ability to drive safely, so you should avoid driving if you feel sleepy.

It's not necessary to inform the Driver & Vehicle Licensing Agency (DVLA) unless your insomnia is caused by a diagnosed sleep disorder, such as narcolepsy.
GOV.UK has more information about telling the DVLA about a medical condition or disability.

*Source - http://www.nhs.uk/pages/home.aspx

Positivity In Pain - An Apology.

I have always considered myself to be a fairly positive person, but recently I've been having so many negative thoughts I'm beginning to think I'm turning into Victor Meldrew!

Over the years I've berated my mother in law for her negativity (a prime example would be me saying what a lovely day it is and her responding "Aye, but it won't last, it never does!") but on October 10th I reached a milestone - my fiftieth birthday. The big five-O. My half-century. And, all of a sudden, EVERY LITTLE THING IS GETTING ON MY NERVES! I have little interest in anything other than drinking tea (or Carlsburg) and watching TV. If I have to move out of my chair I do so like a petulent child. It will be no surpise to me if, tomorrow, I throw myself on the ground, thrashing and screaming, if I don't get my own way over the TV viewing for the night! I just feel like kicking-off like that, just once, to see what reaction I get.

It is fair to say, in my defense, I am in a great deal of pain, twenty four hours a day, three hundred and sixty five days of the year, but I've been at this level of pain for approaching a full year now, with no relief, and prior to my fiftieth birthday I was placidly getting on with it, living as best I could and trying not to let it get me down. Come 'post fiftieth' and a switch must have been triggered. Miserable. Grumpy. Whiny. Moaning. Depressive. Negative. I just can't seem to help it. Minor irritations are now big irritations. My pain levels have gone through the roof, or at least it feels that way.

So, was it reaching fifty that triggered this depression, or was it suffering the pain for just too long? I can't even blame the medication because I don't take any of the prescribed stuff anymore - just paracetamol which has zero effect!! Either way, I'm in a deep depression at the moment and I just want to apologise to any readers out there for my negativity. I'm sure things will improve. In time. (I hope)

Just ignore me until I have something positive to say!

Welcome to H.M.P Fibromyalgia. You'll Never Leave.

Fibromyalgia is akin to a prison. Not a nice, open prison, or even a high security pampered lock-down with all the comforts of home. Oh no! Fibromyalgia is prison with hard labour. No chance of parole. No time off for good behaviour. No chance of ever regaining your freedom. Fibromyalgia is a lifer prison, with bells on!

HMP Fibromyalgia has everything you need to live a normal life, a lovely home, comfy furniture, nice surroundings, you even get to live with your family if you have one, you might even be allowed to work in a real job, for a while. In fact, from the outside, no one would ever know you had been convicted and sentenced to life. But, inside, it's a living nightmare, a daily (and nightly) walk through hell.

I was 'imprisoned' over twelve years ago, locked up by invisible, sadistic guards who seem to want to punish me for daring to dream of being pain-free, stabbing at my intestines, twisting my muscles and tendons to breaking point, forcing cotton-wool into my head, switching on my brain just when it wants to go to sleep, allowing me the strength to plan a family outing and then cruelly intensifying my pain levels on the day of the trip, or feeding me something which, ordinarily, does not upset my delicate gut lining - except on this occasion, denying me the very basic human right to be pain free and lead a 'normal' life. 

HMP Fibromyalgia is the most vile and terrifying of all prisons because it gives you the outward appearance of being free whilst surreptitiously removing all of your freedom.

The evil and sadistic invisible guards have the upper hand at all times. You never know they're there. You never know when they'll attack but attack they will, and it will be when you least expect it. This makes you anxious every day, and that anxiety never leaves you. You may be spared punishment for an hour, a day, a week or more, but the anxiety of an imminent attack never leaves you. This psychological torture, combined with constant pain, eventually breaks you and you become depressed - as I am now - adding yet another dimension to your life sentence in another wing of HMP Fibromyalgia.

Welcome to HMP Fibromyalgia - Depression Wing. We might let you leave one day.


Hang on, No, we won't.


Oh, alright then.


Nope, just kidding!.

Try The N:rem Sleep System - FOR FREE.

I've written recently about the fantastic benefits of a good night's sleep - something I hadn't had for most of my life, and certainly not since I was diagnosed with fibromyalgia some thirteen years ago - and how I was offered the chance to partake in a free trial of the N:rem Comfort mattress topper. (Read my review here)

Usually there is a £10 fee to undertake a trial - but those wonderful people at N:rem Sleep Systems have given me TEN FREE TRIALS to give away to the first ten people to respond.

You will receive a selection of 5 foam comfort tablets to try on your current mattress, with a choice of set up so you receive maximum comfort and support. Simply choose the combination that is right for you and arrange the foam tablets you receive under your bottom sheet. If you’re not sure what your best set up will be, a member of the N:rem team is on the other end of the phone to offer expert set up advice and answer any questions you may have.Places are limited to just ten free trials and the trial will run on a first come first served basis.

After the trial period your toppers will be collected from you and there is absolutely no obligation to buy - but, after you've found your most comfortable night's sleep ever, I think you'll want to own a mattress or comfort topper from the N:rem range.

All you have to do is be one of the first ten people to complete the form on our website - here's the link:

FREE SLEEP TRIAL

Please be aware that this is a trial of the N:rem Comfort Topper system - the foam tablets you receive are a simplified version of the actual toppers for sale through the N:rem Site. You will not own the trial tablets and they will be collected from you when your trial is over. THE FREE TRIAL IS AVAILABLE TO UK RESIDENTS ONLY. We will only accept entries using the form on the FREE SLEEP TRIAL link above, all other entries will be deleted.

Only the first ten respondents will be allowed a free trial and there is a one per household rule. Duplicate entries will be removed. If you submit an entry and get the message "Sorry, we have allocated all of our free trials" it means that you have missed out on this occasion.

Please also be aware that, as a trial, you will not own the goods supplied to you and you MUST return them when collection is arranged. If you fail to give up the tablets you will be charged for the full cost of the five tablets - currently £20 per tablet plus packaging and delivery costs.

I'm Trialing A New Sleep System for Fibromyalgia Patients

The system is designed to relieve some of the poor sleep quality - insomnia, restless and non-restorative sleep and sleep distrubance through pain that some fibromyalgia victims suffer (myself included - I haven't had a decent night's sleep for many, many moons so I'm really hoping that this gives me some relief!)

I'll be vlogging about the trial this week so watch the videos I post each day on how good, or bad, my sleep has been - and keep your fingers firmly crossed for me!

If you have any issues with my accent - I can set up subtitles or provide you with a guide to Yorkshire Folk Lingo!!