How Do I Develop A Coping Strategy?

When my pain reaches a level where I feel like I might die from it - or sometimes wish I would die just to stop it - I find it very difficult to think positively about my condition. Anyone in constant pain for thirteen years must surely, eventually, come to terms with it and learn to live with it. Not necessarily 'cope' with it, but live with it.

I haven't. I want to alter the way I am. I want to reverse it, go back to the days when I wasn't in agony when someone touched me, the days when I could sit and watch TV comfortably, lift heavy gear at work, climb mountains, kayak in the lake district, because I miss those times so much. And that makes the pain worse.

So, how can I live my life going forward when I so badly mourn the loss of my pain-free life?

I don't have a strategy for this.

I need a strategy to help me move on. To make a new life with the added element of "this is gonna hurt, but you're gonna do it anyway and to the best of your limited ability." I already do this, to a certain extent, with my job.

At work I lift stuff I shouldn't. I know full well it's going to hurt later (as well as during the task in hand) but I plod on - cases of eight 2litre bottles of Coke, 10kg bags of flour, 10kg bags of kitty litter, 24 pack beer crates. It hurts, but I do it when I can because to not do it would be to admit defeat and give up working. There are times when my body just will not allow it of course, and my employers know this so they tolerate the days when this happens, but in the main I do as I'm asked. Despite what will follow and in spite of my condition. I do it to maintain some semblance of the life I once had.

Am I wrong to push myself like this? I don't know. I do know that there are men like me all over the world. Men who toil and push themselves, trying to break through the pain barrier in order to avoid admitting defeat. There are, I'm sure, some men out there who go through all of this agony without ever knowing that they have fibromyalgia because they think that is what a man should do, it's 'normal' for a man to do a hard day's work and come home exhausted and in pain. They shrug it off as 'just an age thing' and put off going to the doctors - I know I did, for a long time. When I eventually went to the doctor - he could find nothing wrong. No strains, sprains, pulls, tears, arthritis, rheumatics, cancers. NOTHING. So it's got to be just me getting old, right?

At thirty six?????

Eventually, when you've been through all of the examinations, pokings and proddings by 'specialists' and they have found nothing wrong to be causing you so much agony, they stick you in the fibro category, and they leave you there to rot.

"You have to learn to live with it." they say, to which your reply should be "Okay doc, I'll do just that. Where's the training room?"

There isn't one of course. There is however this wonderful resource called "The Internet" and that's where you should begin developing your strategy for learning to live with fibromyalgia. Read blogs by people with fibro. Join facebook, google+ and other social media to engage with others in chronic pain. The internet is the only resource for helping you to come to terms with, and live with, your condition.

You're not going to get that from your doctor.

Meeting The Ghost of My Former Self.

I used to be quite a fit and healthy young man. From the age of sixteen I was forced into activities I wouldn't ordinarily have undertaken. Up to sixteen I avoided any physical activity because I thought I couldn't do them with any flare or skill like my schoolmates could. I was crap at everything - running - always came last, swimming - always came last, football - always last to be picked, cricket - ditto, hockey - ditto. Sport + Gary McArthur = Disaster.

At sixteen I joined the police cadets and everything changed. I knew it would and I wanted it to. Suddenly I was challenging my attitude to physical activities as something to be shunned by forcing myself (or being forced) to undertake them on a daily basis. Granted I still wasn't any good at them, but I tried to break my mindset towards them. The police force got me hiking, abseiling, camping, canoeing, mountain climbing, cross-country running, orienteering, weight training and partaking in almost every other sport known to man in much the same way as the army trains a team of dropouts into soldiers. The police force instilled discipline and order and gave me a massive sense of achievement. In amongst all of the legal definitions and laws and regulations the police force also gave me good health which lasted me well into my thirties. Conversely, it also taught me how to drink like a fish! (but never lose my self control) and that's another story for another time.

From sixteen until my mid-thirties I considered myself to be a fit and healthy individual - not obsessive, but I remained lean and strong and enjoyed outdoor activites like hiking. I'd bump into former school mates who'd let themselves go by piling on the pounds and I felt quietly smug that I hadn't descended into obesity. I was no longer embarrassed by my slender build as I had been at school.

Then.

Then I suddenly died. It wasn't gradual or slowly degenerative. It was overnight. I woke one day with backache. It was 2003. Between then and now I haven't had a single day without pain. Obviously, there have been good and bad, as well as bad and really bad, days, but every day I have had some level of pain in my back. Sometime after the backache began I started to get pain all over my body - arms. legs, head, neck, feet, fingers, toes, hips, knees, and sometime after those symptoms started I began to get the internal ones, IBS, Crohn's, you know the drill. Fibro affects us all in pretty much the same way and a whole myriad of different strokes for different folks.

The point is this, on that day in 2003 when I awoke with backache, my former self had died in its sleep. Over the course of the next thirteen years, as each symptom struck, I gradually became the ghost of the Gary McArthur I used to be.

The physically fit Gary McArthur became the disabled Gary McArthur, and over the course of 2015 the Gary McArthur who was always positive and happy go lucky and forward thinking and strong, became the depressed Gary McArthur, the negative and whining and hopeless Gary McArthur, and it was at this point in my life that I finally met, or recognised, the ghost of my former self - that skinny and spotty little sixteen year old boy, who'd been scared of all physical activities who, through sheer determination, had turned it all around, who'd laughed in the face of his fears and grown to love them (without ever being any good at any of them) was dead. He died when I gave up being 'well'. He died when I gave up fighting. He died when I lost hope during the course of 2015 and became depressed. He died despite reading hundreds of blog posts by other fibromyalgia 'survivors', all with a positive message that laughed in the face of their illness. He died when I stopped laughing in the face of mine.

But, fear not, for that skinny little sixteen year old's spirit is still inside me and he will live again.

I've set myself a goal for 2016: To find the spirit and the grit and the determination and the hope I had as a sixteen year old boy, and laugh once more in the face of my illnesses. To challenge myself in the way I did when I joined a career path I knew I wasn't suited to, simply to face my fear of all things physical.

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!

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!!

Unexpected Support

These days getting anything for nothing is an impossible task. This is especially true of hard-pressed local authorities under a Tory Government. 

So I was genuinely shocked to hear that, after my Blue Badge assessment, I had been referred to local social services for 'additional support' to enable me to stay in my own home. (This was especially shocking given the fact that my family and I have never had any intention of leaving it!!) But apparently, the occupational health assessor had decided that my level of disability warranted an intervention by the Staying Put Scheme - set up to support home owners and council tenants remain in their homes for as long as possible rather than enter sheltered housing or care homes.

So, even though I own my home, I'm eligible to access support to make living with this dreadful condition a little easier, and never one to look a gift horse in the mouth, I have.

The lady who visited me was another occupational therapist who observed me doing the everyday things I would do in my home - climbing the stairs, sitting and rising from chairs, getting in and out of bed, getting in and out of the bath / shower, using the toilet (not actually using it!!), preparing meals. She asked me about my comfort levels during each activity and, as I seem to be in a never ending flare at present, I answered as honestly as I could.

The trouble is, I can do all of the things she asked me to do in the fashion I've become accustomed to doing them - I can get in and out of my chair - with some pain, I can get up and down the stairs - with some pain, I can get on and off the toilet - with some pain, I can get in and out of the bath - with some pain etc. I didn't tell her I was in pain each time I did the activity requested but, somehow, she knew. She could see my pain. I wasn't wincing, or groaning at every activity (or, at least I don't think I was) but she identified the areas I have most difficulty with merely by observing me do them!

Two days later I got a visit from the local authority Handy-Man Scheme who installed a bannister to enable me to climb the stairs easier and a week after that the occupational therapist returned with a bath 'balloon' that inflates so I can sit and be lowered into the bath, then raised back up to get out - it's an amazing piece of kit and has made life so much easier

.
I no longer have to ask my wife to help me out, or clamour over the edge of the bath to the floor when I can't lift my legs.

I'm incredibly grateful for these things. Having struggled along for so long it's nice to be able to get a bath without the gymnastics - I used to have to get in backwards on my good leg, sit down with my bad leg over the edge of the bath and then 'man-handle' it in to the water! Now I just sit on the seat cushion, deflate it, get bathed, re-inflate it and get out - it's fantastic!.

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 .

Pills and Potions Not Working - Help Required.

I'm currently taking 600mg of Lyrica (Pregabalin) per day as well as 8 cocodamol 30/500mg tablets.

My hip and lower back pain is getting worse.

Obviously the pills aint working, but I'm sick of pestering my doctor, and I can't use the TENS machine 24/7.

Having a really bad time! Will I ever find a medication that actually works without giving me horrendous side-effects??

What works for you?

TENS Machine - Update

The 'Knight in Shining Plastic' I described recently (Back Pain - Sudden Worsening) - the one that arrived just as my back pain became unbearable after it seized up - has been working brilliantly. I've tried just about every mode, and program within each mode, and found the one(s) which help the most.

The unit works by stimulating nerves and muscles via a small electrical impulse. When on the sensation feels like mild 'pins and needles', a tingling or prickling feeling and, if turned up high enough it sometimes makes the muscles twitch. 

So far I've used it two or three times a day on my lower to mid back and, I have to say, it's an amazing piece of kit. I attach the electrodes to the points of my pain (in my case anywhere on my back will do) switch on and away I go. The relief is more or less instant as my pain gives way to the mild tingling and pulsing of the machine - I can increase the intensity of the stimulation with a press of a button depending on how bad my back is, and I tend to gradually reduce this over the course of an hour until I switch off the unit. Then comes the second of only two downsides to the machine - the pain returns within a few minutes of switching it off. (The first 'downside' is the icy coldness of the self adhesive electrode pads that you have to stick on your lower back!!)

But I can live with that. 

A couple, or even three hours a day with no pain is such an improvement on twelve years of 24 hour a day pain. The unit is portable so I can take it with me on trips out to finally 'enjoy' (?) a full shopping trip with my family, as opposed to grumbling and moaning to them after ten minutes of pushing the trolley! (Though I reserve the right to grumble and moan about shopping even if pain free!!)

I've also tried the unit on my hip pain with equally positive results - when on full blast I can walk upright, with no limping. I even managed to do a little 'Dad dance' around my living room with my Daughter. For the first time in years I felt like a normal father.

I know that it's early days, but based on the results so far my investment of fifty quid has been well worth it!