Dec.11

A Fibro night’s sleep

Whilst nearly everyone with Fibro complains of not sleeping properly and feeling tired all the time, few appreciate the importance of sleep and a sleep routine in combating the array of symptoms. 

Sleep Disorders

Back in the 1970s Canadian researcher Dr Harvey Moldofsky took a group of healthy people and repeatedly woke them up during the night. In the morning they complained of muscle pain and fatigue, symptoms which disappeared following a night of undisturbed sleep.  He also took a group of people with fibromyalgia and carried out a sleep study measuring their sleep wave patterns as they slept.  

Normally when we sleep we go through various stages of what is known as the sleep cycle. The first waves to appear are alpha waves and as we fall more deeply asleep the waves become slower and slower until we reach deep sleep, characterized by very low-frequency delta waves. Dr. Moldofsky found that the majority of people with fibromyalgia had their deep delta wave sleep interrupted by the intrusion of the faster alpha waves.  The alpha-delta anomaly and is one of the key reasons for the non-refreshing sleep and muscle pain that we experience.

While the alpha-delta sleep anomaly is the most common sleep disorder found in fibromyalgia patients, it isn’t the only one.  Sleep apnoea, sleep myoclonus  (involuntary arm and leg jerking) and teeth grinding are also common.

The lack of delta-wave sleep contributes, directly and indirectly, to many of the other symptoms we face with fibromyalgia.  80% of growth hormone produced per day is released during deep delta wave sleep. This isn’t just about making us taller, it also repairs and restores the damage that occurs to the muscles and tissues during the rough and tumble of everyday life.   Without it our bodies don’t get their nightly self-exam, and a backlog of repairs accumulates.  Tissues become worn-out, our immune system weakens, and tiny tears in our muscles are left unrepaired.  We’re left with aching muscles and feeling totally worn out.

Excitotoxicity

The autonomic nervous system controls the things that happen in our bodies over which we have no conscious control, for example our heart rate, blood pressure, sweating, the digestion of food and breathing. It is operated by two opposing teams: the sympathetic and parasympathetic systems.  The sympathetic system speeds things up and prepares us to respond to pain or danger – it’s often referred to as the ‘fight or flight’ response.  The parasympathetic system works in opposition to slow things down – the ‘rest and digest’ period. 

In people with fibromyalgia the autonomic nervous system is out of balance.  It seems that our sympathetic nervous system is unable to switch off properly (a bit like a child with ADHD!)  The immediate symptoms of this are dizziness, night sweats, abnormal temperature control, palpitations, chronic diarrhoea/constipation (IBS) and orthostatic hypotension (dizziness and fainting on standing up due to low blood pressure).  

At night when we settle down for sleep the parasympathetic system normally takes over to slow everything down, reducing our heart rate and slowing our breathing. Rather than preparing to ‘rest and digest’, though, we find we are still being stimulated by an overactive ‘fight or flight’ system, causing us to toss and turn, remaining too alert to enter a deep sleep.

This tension between the two parts of our autonomic system continues in the day, too, and explains why we feel so much pain.  With an overactive sympathetic nervous system the signals being sent to our brain become confused and ‘touch’ is processed as ‘pain’.  The gentlest touch – something brushing past our arm for example – can be agonising. Even having clothes touching us can become too much; and a gentle hug can send us right over the edge! 

This state of excitotoxicity, to give it it’s technical name, is also found in spinal cord injury, stroke, Multiple sclerosis, Alzheimer’s disease, Parkinson’s disease, Alcoholism and Epilepsy.

Serotonin

An important component of the sleep disturbance in fibromyalgia involves serotonin, a major neurotransmitter (a chemical that helps nerves transmit their messages), which is essential for the induction of deep level, slow wave sleep.

People with fibromyalgia have been found to have low levels of serotonin in their blood and spinal fluid.  Doctors may  prescribe medications that increase the availability of serotonin in the body, with the ultimate goal being an improvement in the patient’s quality of sleep (more time in delta sleep) and reduced pain sensitivity. 

Medication and Research

More research must be done on the relationship between prescribed medications and the alpha-delta sleep anomaly.  While these medications do influence the availability of serotonin, the exact mechanism by which they operate is not understood.  There are still many questions to be answered.  Ironically some of the medications we take to help with the various symptoms of fibromyalgia may themselves contribute to some sleep disturbance, and many sleeping pills can interfere with deep sleep stages.  There are various medications and herbal remedies you can try which may help you to get a good night’s sleep, but it is always important to discuss medication with your GP or pharmacist.  You may find you cannot tolerate some medicines, or have unhelpful side effects.  Some medications may leave you feeling hung-over in the morning, in which case you may need to take it as early as 6pm.

Tips for a good night

Getting the best night’s sleep you can is essential when dealing with fibromyalgia.

  • Establish a regular sleeping pattern and routine: go to sleep and get up at the same time every day. As you regulate your sleep-wake patterns, you’ll likely find yourself waking up on your own at around the same time every morning.
  • Take time to wind down before bed.  You may find it helpful to listen to music or an audio book, have a warm bath with lavender oil, do some relaxation exercises, or read.
  • Use dim or soft lighting in the evening time.
  • Make your sleep environment as quiet, dark, and comfortable as possible
  • Avoid going to bed feeling hungry or on a full stomach, try to eat your evening meal no later than 6pm.  However, a light bedtime snack of carbohydrates, walnuts, or milk may increase serotonin, promoting sleep.
  • Avoid scary films on TV and stimulating or worrisome activities just before bedtime
  • If you have a lot on your mind, try writing down your worries on paper and make a ‘to do’ list. Then put it aside for tomorrow and think of something pleasant.
  • Ensure that your bed and pillow are comfortable and supportive, and that you stay warm during the night and avoid being near any drafts from open windows.
  • Cut down your caffeine intake, avoiding it completely in the afternoon and evening
  • Reduce or eliminate fluid intake after 6pm, especially if you have a need to urinate during the night.  Medications such as diuretics that get rid of excess fluid should be taken earlier in the day whenever possible, in consultation with your GP
  • If possible try to be in bright light (either outdoors or by an east facing window) in the earlier part of the morning to help keep the sleep-wake pattern established.
  • Develop a programme of aerobic exercise, but avoid exercising in the evening. Exercise regularly at least 20-30 minutes three times a week, before 6pm.
  • Actively deal with problems that interfere with sleep (pain and discomfort, crying baby, uncomfortable mattress or pillow, snoring spouse, concern about safety issues, etc.).
  • Seek treatment for depression, anxiety and/or stress if you are experiencing these.
  • Avoid taking a nap late in the day.  If you must nap, keep it to less than an hour and before 3pm
  • Don’t work in your bedroom. Use your bedroom only for sleeping and being physically close to your partner
  • If it takes longer than 30 minutes to fall asleep, get up and go to a different room for a quiet activity such as reading, listening to soft music, or a relaxation technique. Then try to go to sleep again. This also applies if you wake up in the middle of the night.

When you get a good night’s sleep it is much easier to face the day and cope with the nagging pain and fatigue. It is certainly worth persisting with good sleeping habits and various medications to achieve the best night’s sleep you can.

ME/CFS/FMS

Oct.11

Mental Health Awareness

So yesterday was Mental Health Awareness day, and someone caused this to happen…

To their credit, they have since removed the posts that caused so much offence and pain for so many people, but whilst I thoroughly disagreed with the misguided sentiments they shared about Mental Health – implying people only have themselves to blame and that it is up to them to choose to get better – it did make me rethink some things.

There’s still no excusing their post, even though they believe that “despite upsetting many people it may make one person take action”. In fact it almost did cause one person to take action, but far from the action intended. Thankfully they did not harm themselves too much and are in a better place today.

Mental Health is not ‘one size fits all’. It covers a huge spectrum of challenges and disorders, that continue to have an unhealthy stigma associated with them. 1 in 4 people suffer from Mental Health problems, many silently. There is an increasing awareness, and an increasing array of support available, but there is still so much more that could be done.

Like most forms of disability – and it can be truly disabling – the issue lies not in the medical condition or label itself, but in society. Most notably, the attitudes of others. It’s the fear of being judged that holds many people back from achieving their potential.

Several years ago my GP said he thought I had a personal anxiety disorder. I didn’t ask what he meant by that, but – genuinely – worried about what it really meant. Of course, the irony isn’t lost on me and I’ll make jokes about it now, but the label was no help at all. It’s the same with physical conditions, and the reason I pulled away from a lot of the campaigning and support work I was once doing. Frankly, I don’t care what label a medical professional has given someone. What I care about is what I can do to help ensure they can still do all that they want to, achieve their potential, live a happy life, feel positive,…

Some people will hide behind those labels – physical or mental – and if I’m honest I probably have at times. Sometimes it gives some security, but sometimes it can be an excuse. It may at times give identity, or help create a sense of belonging or comradery. It should never detract from the person, the potential, the purpose.

General News,ME/CFS/FMS

Aug.04

Back to blogging

I’ve recently been encouraged to get back to blogging. At the same time, I’ve been looking for a way to create a simple page online with key profile information that links through to other networks – a sort of online stalker-friendly business card if you like. Then, seemingly unrelated, I read about a WordPress theme that seemed to do just that… and here it is….

The old blogs (we’re going back over seven years here) are still here, but going forward the blog will be a little more focussed (hopefully).

So, for the stalkers amongst you, catch my profile, resume and portfolio on the front page by all means, and bounce across to LinkedIn, Facebook, Twitter or G+ too. Look out for new posts over the coming days and weeks, along with the option to signup for regular updates or subscribe to the topics that interest you most.

 

General News

Mar.22

Abandoned?

Oh dear oh dear, how sad and forgotten does my blog look?!  Methinks it could be time to start blogging again and share my wisdom with the world.  Well, some thoughts and opinions at least.  Will update the software on here this week and hopefully start posting again in earnest real soon.  Lots has happened and much has changed – not all for the better – but more on all that real soon…..

General News

Jun.22

Oops, where have I been?!

Just been reminded (again) that the site lacks updates.  Where has the time gone?!  I can’t believe it’s been neglected for so long…. oh what irony!

Anyway, here’s a quick update on what is going on in my little world now…

  • Samuel’s now 3 (going on 13) and as adorable as ever!  He is so good and loves to help out in his own special ways around the house…. like putting the washing machine back on as soon as it finishes, and pressing ‘his latter’ oin Heather’s laptop when she leaves it unattended in the middle of writing school reports!  He’s desperate to be just like Daddy and most days insists that we wear the same colour clothes now!
  • I’m still working with DPN – and still not paid! – despite the promotion to National Operations Manager and then also Vice-Chair.  We’ve employed several staff over the past year so I’ve taken on an HR role alongside everything else.  Next step is to appoint a Development Director who will then take over a lot of what I have been doing (essentially a ‘CEO’)
  • The local Fibro Support Group has developed well, and will soon be finding its own feet while I concentrate on my role as Regional Co-ordinator for Essex and London.
  • I’ve somehow landed up as Secretary to Thurrock Disability Network and have the pleasure of keeping everyone in line and stirring up trouble.  Hey, it’s a tough job but somehow I manage!
  • My own health continues to fluctuate but I’m doing far more now than I  would ever have considered a year ago.  On top of all the above I continue to provide an ICT Consultancy to a number of charities and arrange hosting and other services here and there.

That’ll do for now – I’ll try to add some more later!

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General News

Feb.02

Feb.01

another quick update

Sorry! Anyway, here’s a brief update…

As I mentioned before I’m now doing a fair bit of work with Disabled Parents Network.  I’m taking calls a few hours each week and have also taken over responsibility for the website, forums, etc etc and all the technical problems that come with it.  Have been revamping the forums over the past week as they looked a little tired (and so have I).

The Fibromyalgia Support Group is slowly getting going, and will be great once it’s fully functional – so far there are a number of posters about and a few calls and enquiries trickling in… press release due to go out at end of minth once we’re back from holiday.

Samuel’s growing fast and doing new things all the time. Can’t believe he’s almost 2 – got his birthday party tomorrow, having followed all his instructions as to who to invite and what food to get! Under the thumb? me?  Hmmm,.,..

Laptop problems are solved, have a whizzy new computer, which of course meant buying a new desk too. It makes such a difference to be able to get things done properly again.  I’ve also got some great new bits of software up and running now which I’ll rave about more another day. One of the most helpful though is the one that allows me (with user permission) to see other people’s PCs and take control of them in order to fix problems.  Spent a couple of hours working on a machione in Salisbury yesterday – it’s now virus free, cleaned up and working much better than before, and the email problems were all fixed too.   Hoping my mother-in-law’s not reading this, though, cos I may have to change phone number and email address if she knows!!

Looking forward to a week away for Samuel’s birthday next week and then a weekend in Reading with DPN in March.  Depending on the outcome of my DLA tribunal on Monday there may be more time away soon once some bills are paid!

Gonna try to post again in the next few days – nag me if I don’t!

General News

Dec.07

Quick update for those that are nagging :p

Several people are asking for updates… sorry… here’s  a brief summary of life with more to come later hopefully

I’ve been rather busy over the past month which is partly why there’s been no new posts.  My laptop is also on its way out 🙁

I’ve been doing a few mystery shopping and field marketing jobs over the past few weeks, some better than others, and one almost resulting in a discrimination case being brought about.  Of course, because of the nature of the work I can’t say too much about it, but some of it has left me very tired and I am having to cut back on what I do.

I’m now working with Disabled Parents’ Network in several capacities, all of which are voluntary.  There are several other roles that they’ve asked me to think about too/instead, but they’re on hold for the time being!  I am, however, part of the Support Services Team – taking phone calls every Friday afternoon and also responding officially to some of the messages posted on the DPN website forum.  I’ve also taken on the new role of local network link for Thurrock, promoting DPN within the area and looking into how local service providers cater for disabled parents.

I’m still considering a local Fibromyalgia Support Group, and discussion continue with FMAUK about this.  I can’t do it all on my own, though, so if anyone else locally feels this is important then I *need* to hear from you!!

Samuel’s growing up at an amazing pace and is ridiculously excited about Christmas.  He insisted on wearing a Santa hat to nursery today,… it’s way too big for him, but he doesn’t care!

Gonna have to leave it there for now and get ready to answer the phones

General News

Oct.25

Positively discriminatory

When you hear the phrase ‘disability discrimination’ what do you think? Butlins have managed to challenge my – and probably your – interpretation…
It used to be that disabled guests, and in particular wheelchair users, were let into entertainment venues before everyone else. The main reason for this came down to health and safety: they had to get us in and settled before everyone rushed in without a care for anyone else. Last time we were here they had to keep everyone else out for 40 minutes while getting all the wheelchair users in the broken lift! 
Things are a little different now. There are still 2 queues to get in, but they no longer let the disabled guests queue in first which kinda defeats the object. With the lift the way it is, people who joined the queue half an hour after us are up the stairs and seated before i’m even in the lift! The reasons for the policy change vary depending on who we talk to. Some say it’s because of equal opportunities, others pay it’s because they can’t discriminate. I’m not sure i agree with either but it’s hard to argue when they say that. I’d be interested to hear other’s views…

General News

Oct.21

Postcard from butlins

Hey ho, we’re finally settled having had to move three times since we got here! Our disabled-friendly, easy-accessible accommodation was on the first floor. Since they couldn’t provide someone to carry me up and down the stairs in my chair whenever needed they offered to move us to a lovely unit on the far side of the resort, too far out for up to be able to get about! There was talk of a free motorised chair until they realised we were here for the week, so we were moved again! We’re now unpacked, but have lost a room in the process so samuel’s sleeping on the floor: thankfully we’d brought his blow up bed just in case! There’s still no dropped curb to get to the nursery and under 5s play room, our shower leaks, it’s cold, and I forgot to feed the fish before we left! Wish you were here? .

General News