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!!

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.

N:rem Sleep System - My Sleep Aid Trial Review

PLEASE NOTE: THIS IS NOT A "PAID FOR" REVIEW. The thoughts and experiences outlined in this product review are an accurate and genuine reflection of my experience using the N:rem Sleep System and have not been influenced in any way.

Like many sufferers of fibromyalgia I haven't had a really good night's sleep for many, many years. Even before I was diagnosed my fitful sleep would annoy my wife and keep her awake - which resulted in lots of odd bruises on my shins and arms! My wife described sleeping with me as "like sleeping with someone in the throes of a never ending epilectic seizure!"

It got so bad that most nights saw me banished to the spare bed where I could thrash and gurgle and snore and talk and shout and kick and moan to my hearts content. But of course I wasn't content and sleeping like that certainly took it's toll on my health and my marriage.

In the early days it was simply a matter of me being unaware of what I did in my sleep - I don't remember doing any of the things my wife told me I did -  but I do remember how incredibly tired I was, even after a full night's sleep - which for me meant about five or six hours, max. More recently it hasn't simply been the things I do in my sleep, I've had the extra burden of chronic pain keeping me from getting to sleep or waking me during the night, all of which adds up to a whole mess of exhaustion and irritability and stress - and with the stress comes the added pleasure of anxiety at bedtime - 'Will I get to sleep?' 'What if my pain wakes me again?' and so on. It's a vicious cycle.

Living with a chronic pain condition is bad enough in itself. Getting through the days is exhausting and when the nights offer no respite from the pain it's easily understandable how some fibromyalgia 'victims' become depressed to the point of almost being suicidal.

Over the years I have tried so many different sleep aid products - none of which have ever worked. From large quantities of alcohol to anti-snoring strips to specialist pillows and mattresses, I've spent a fortune trying, and failing, to get a good night's sleep.

So when I received an email via the FibroMen website from a company asking me to trial  their 'Sleep System' I was sceptical to say the least, but I've tried almost everything else on the market, so why not give their 'free trial' a go?

The very next day my trial product arrived at my door! A big black box stuffed with five single bed width foam 'toppers' of different densities and colours  (2 x super soft and 1 each of soft, medium and firm ) designed to be placed on top of my existing mattress in a configuration suited to my particular conditions - hip pain and lower back pain.
 
And so began my ten day trial of the product that claimed to provide sound, restorative, deep sleep to chronic pain sufferers like me.

Setting the bed up was really easy - even for me - simply place the colour coded, different densities of foam tablet down the length of your bed in the configuration best suited to your pain areas. The leaflet that came with the product provided three options for back pain, lower back pain and hip pain. For my first night I used the lower back pain configuration.

The first night provided me with a decent night's sleep (for me) only waking twice but with some discomfort from my hip pain - the tablet 'toppers' were configured for lower back pain so I suppose that was to be expected and quite normal for me. I did get a feel of the differing densities of foam but overall it was a good night's sleep. The next day I found myself moving around quite freely - feeling almost sprightly. The third night provided me with the most comfortable night's sleep I'd had for many years and left me really positive, but I changed the configuration of the tablets to one designed to help with hip pain for night four and it wasn't a good move - I woke several times with severe lower back pain and (surprisingly!) some pain in my hip and that left me quite despondent. For night five I switched to the configuration for general back pain and it's been that way since - for a reason:

For me the configuration for general back pain has provided me with the best sleep I've had in years!

I still have pain during the day. This sleep system is not a cure for fibromyalgia - but it doesn't claim to be. This sleep system has worked for me in two ways

1. I no longer wake during the night in absolute agony, and
2. I no longer wake during the night FULL STOP!

I can go to bed at midnight and not wake up until my alarm clock goes off six, seven, eight - even nine hours later - I've NEVER been able to do that.

I can go to bed in absolute agony and still fall asleep quite quickly - because the mattress is now so comfortable - and not wake once during the night because of my pain.

When I wake my pain is still there but I don't notice it so much as it's not as bad as it has been in the morning, and getting out of bed is no longer the arduous task it was two weeks ago. As I go through each day I feel my pain building to the point it was at before the trial but I feel so much more able to bear with it knowing that when I go to bed I'm going to get some respite from it.

The absolute beauty of this sleep system is the fact that you can configure the foam tablets in whatever way gives you most comfort and relief. I had a couple of nights where I got it wrong, but it was easily fixed the next day and I know that if the current layout stops working I can have a go at shuffling the tablets to find the right comfort level for me. Quite simply it's brilliant!

So, overall, the sleep system has worked for me and I'm so thankful that Elise from N:rem - the company behind the system - contacted me.

I do have one note of caution to those thinking of investing in the system - and it is an investment because the system doesn't come cheaply - use the free trial first. 

What works for one doesn't necessarily work for another - we all know this to be a fact with fibromyalgia! If you use the trial and find it helps you then, if you can afford to, buy the system. From my experience with the company, and from reading the reviews on their site (and other review sites) their customer service is first class and there are options to enable you to afford the full system if you're on a limited budget. Take a look at their site and decide for yourself, but I have no hesitation, based on my trial, in recommending the benefits of the N:rem Sleep System. 

Sleep Aid Trial - Where to find the latest updates

You may know that I'm in the middle of trialing a sleep aid that claims to significanlty improve the sleeping patterns of fibromyalgia patients by providing comfort, pain relief and deep restorative sleep.

I'm on night three of seven or ten nights using the product.

You can follow my progress on the FibroMen YouTube Channel or on the MyFibro Blog.

Thanks

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!!

Sick & Tired Of Pills & Potions

It seems that every drug prescribed to me by my GP has little or no effect on my pain. So far this year I have had Gabapentin, Pregabalin, Cocodamol, Naproxen and the latest one Nefopam, none of which make any dent in my pain and all of which have given me more grief than benefit.

My fibromyalgia affects my lower to middle back, elbows, hips and knees, and pain from this is exacerbated by my crohn's disease / IBS symptoms. In a last ditch attempt at finding a treatment that works, before referring me to a pain management specialist, my GP decided to try me on Nefopam 30mg x 2 three times a day. I started them last Wednesday, it is now Sunday. On Friday I had to rearrange a work shift which was due to start at 05:45am to 11:30am as I had experienced extreme abdominal spasms and diarrhoea throughout Thursday. The spasms hadn't diminished by the time I started work, so my six hour shift was spent in total anxiety of another attack. When they came, thankfully, they were bearable. 

Firday night I slept fitfully and was wide awake at 03:25 I got up to visit the toilet at 05:30 and found that I couldn't urinate. I stood for a few minutes, absolutely bursting to go and when it eventually came it was like the pressure valve had been reduced to a slow. burning, trickle. It's still the same today, plus I have a headache - something I rarely get, but when I do I don't do them by halves! It's a stonker! Last night I got only two hours sleep.

So, they have been the side effects of Nefopam, but what about the benefits I hear you scream. Well, there haven't been any benefits except to say that my abdominal cramps have diminished to a mild burning every so often, but I'm putting that down to Buscopan rather than Nefopam.

My GP said that a referral to a pain management specialist was an admission by him that he could do no more for me and that pain management would provide only 'palliative care' ( I thought that term referred to terminal patients only, but perhaps that's what he meant!? ) I felt like saying he'd done nothing for me anyway, but thought better of it.

And so I find myself back to square one on this snakes and ladders game of Fibromyalgia. I'm taking no more of the Nefopam as they've made me feel awful. I'll make do with cocodamol and my TENS Unit until my pain management appointment comes through .

Do you REALLY have Fibromyalgia?

Do you pass the fibro test?

I have the pain in all four quadrants, insomnia, fatigue and fog but I'd fail the eleven out of eighteen tender points bit!

Best start looking for a new diagnosis.....

Crohn's Flare or Medication Switch?

I mentioned a while back in this blog that I was on Pregabalin (300mg twice daily) - well, I started to get an unwanted side-effect: extreme dizziness, which was making working and even standing up unpleasant and/or uncomfortable so three days ago my doctor switched me onto Gabapentin (100mg three times daily) and as soon as I started taking them I started to get the symptoms of a flare up of my Crohn's Disease. Horrendous stomach cramps, diarrhoea and nausea, and last night I thought I was going to have to go to the hospital because of them. 

I'd managed to get through the day in relative discomfort and in the evening had (just about) managed to get through my shift at work - though I was clearly under-par, I got home at 11.30pm and went to bed but couldn't sleep because of the pains inside. At 3am I was on the toilet trying desperately not to pass out. The pain in my gut was unlike anything I'd had before. I was considering calling an ambulance when it dawned on me - could it be the new tablets?

I don't usually read info leaflets in tablets and in any case there hadn't been one with these new ones, but the pains were so bad I had to know if there was a link so I searched "side effects of Gabapentin" This is what I found:


Common: More than 1 in 100 people who take Gabapentin

• abnormal gait
• abnormal laboratory test results
• abrasion
• accidental injury more likely
• acne
• back pain
• blood and bone marrow problems
• breathing difficulties
• bronchitis in children
• changes in appetite
• confusion
• constipation
• convulsions in children
• coordination problems
• cough
• depression
• diarrhoea
• difficulty sleeping
• double vision
• dry mouth or throat
• eye or eyesight problems
• feeling anxious
• feeling nervous
• feelings of hostility
• flatulence
• flu or flu-like symptoms
• fractures
• general feeling of being unwell
• headaches
• hyperactivity or aggressive behaviour in children
• impotence
• indigestion
• infection of the ear in children
• inflammation of the gums
• itching
• joint pain
• memory problems
• mood changes
• muscle twitching
• muscle pain or tenderness
• nausea
• oedema of the extremities
• pain
• pharyngitis
• raised blood pressure
• reflex problems
• respiratory tract infection in children
• rhinitis
• sensation changes such as paraesthesia and hypaesthesia
• skin rash or rashes
• speech problems
• stomach pain
• swelling of the face
• tooth problems
• tremors
• unexplained or unexpected bruising
• unusual thoughts
• vasodilatation
• vertigo
• vomiting
• weakness
• weight gain

(I've highlighted every side effect I experienced during the last 48 hours)

The stomach pains, flatulence and diarrhoea still haven't subsided and I've vowed to myself to never take another Gabapentin. So it looks like another consultation with the quack when I can drag myself away from the toilet! Looks like I'm going to have to manage with just cocodamol for the time being.

Tired all the time? You might be suffering from Fibromyalgia.

I've just read an internet advertisement that started with the header 

"Tired all the time? Then you might be suffering from fibromyalgia."

I don't know about other sufferers, but I imagine they will have experienced something similar to me, and tiredness doesn't come close. Exhaustion would be a more apt description. I've been tired through lack of sleep and I've been tired through physical exercise in the past, but I've only ever been truly exhausted through fibromyalgia. It's when your body no longer has the will to function properly. It's when your brain begins to shut down involuntarily. It's when your only thought is to sleep, wherever you are and for as long as your body needs to recover from the cause of your exhaustion - but, alas, your body won't fully recover. You'll wake almost as tired as you were before you slept.

It's at times when I'm exhausted that I sleep the most. It happens possibly two or three times a year - I get a full six or seven hours sleep (I usually sleep for far less than this) and when I wake I feel far from refreshed and my pain seems to be worse - possibly from being immobile for longer than I'm used to. Exhaustion + More sleep = more pain, and more pain means more tiredness - it's a vicious cycle!   So sleep offers me no incentive - it won't refresh me, it won't reduce my pain. I sleep because it would be rude not to. I sleep because I don't need the heating on when I'm asleep. I sleep not to recover physically but to switch my brain off from the pain for four or five hours a night, and even then it won't always let me. Sometimes the pain won't let me sleep, sometimes the pain wakes me up!

It's no wonder I look so haggered!!