Category Archives: Reviews

My experience of the Understanding Pain Science course and issues surrounding diagnosis

Hi folks!

A little while ago I was referred to the Pain Management Program locally, and my new physio suggested as part of this that I attend a “course” called “Understanding Pain Science” at a local NHS medical centre.  What was called a course by the physio was actually a one off lecture/presentation and I attended it yesterday.  I thought I’d post of my experience of it in case other locals were thinking about going, or other UK folks had been offered similar through their local services.

On arriving at the medical centre, I was told the course was on the first floor, which wasn’t an issue as there was a lift.  I hobbled up there (still waiting for my NHS wheelchair!) and waited in a roasting waiting room for about ten minutes or so.  Quite a few people turned up for the course, and a lot of my expectations about who would attend were blown out of the window – the majority of the people who came were not how I expected (in other words not like me, although some were!).  I was surprised by how many young people were there.  

In the waiting room I sat next to a lovely lady who had brought her dad along.  We got chatting, made use of the water machine (it was so hot) and at that point I felt that if nothing else came of the trip out, I had at least been out and socialised a bit!

We were soon called through the doors by the physiotherapist who was giving the talk.  At this point it became obvious that the room we were going to hear it in was at the other end of the building.  It was a long and winding walk around the narrow corridors and a couple of us held the line up.  OK, I held the line up.  The younger and fitter got in there first and as I expected, took the back seats – ahhh it was just like being back at school!  So, I and the people I was talking to in the waiting room ended up sitting at the front.  First thoughts were that although I’d been told this was going to be dead informal with loads of different seating arrangements so that we could move around if necessary, this was not the case.  No problem I thought, there will be breaks.  

The talk started with us being given handouts of the presentation, and also a couple of questionaires to fill out – a satisfaction/feedback one, and a pre- and post- talk questionaire on our knowledge of pain.  

On the actual presentation time and arrangements, I was disappointed that there were only rigid chairs available and that although we were told we could get up and move around, to do so would’ve disrupted the talk.  There was an enticing looking high backed cushioned chair, but it was sat behind the projector and not in use, and so it taunted me throughout the talk and I felt I might not have concentrated as much as I could have as I was sore and stiff and uncomfortable.  There was one break of about two minutes with water available.  The only other furniture in the room were office tables and a large treadmill, which generated a few sniggers – was that for us?  I would’ve liked to have seen a variety in seating options and a layout that allowed for people to move around without interrupting the talk.  None of us dared to move around and from speaking to others who went, most of us were feeling the same, like we couldn’t or daren’t get up and move if we needed to.  

The talk itself was good – it was not so dumbed down that it was telling us everything we already knew, although I would’ve preferred a deeper focus on some areas.  Neurotransmission and central sensitisation were the main topics and a lot of this I already knew.  That said, there were some aspects I didn’t have as much knowledge of already, for example the role of the homunculus (part of the brain) and stellate ganglions.  Some of the talk on these areas were particularly interesting.  I had no idea that pain actually changes the shape of the brain for example.   It would be silly for me to go into everything I was taught in more detail as some of you will have more knowledge in other areas, and everyone’s different.  However, I felt that for the time allotted (one and a half hours), there was a decent amount of information given, even if it was at the cost of information I’d have liked to have learned more about. 

I did have a couple of concerns.  One large focus of the talk was on how to modulate information sent to the brain – so basically what increases the output of information from nerve cells and therefore increases levels of pain (stress, etc).  That was really handy, but the suggestion was that if certain patterns of thought increase pain, that by thinking pretty things pain could dramatically reduce or go away.  This may or may not be true, I have no idea, but the emphasis was enough to suggest that we were responsible for our own pain.  I think that at this point a little humility in accepting how tough this actually would be for a chronic pain patient would’ve allayed my concerns – just a simple comment.  On a bullet list of things that increase the pain signals to the brain, there was very little focus on physical aspects such as chemicals, disease, etc, and a huge amount of emphasis on social aspects.  At the top of the list were wider social aspects such as the benefits system and us looking for a diagnosis – this was not presented as being a result of pain, but as a cause/influence on pain levels.  Maybe I was reading too much into it, but I did feel there was a hint of propaganda there, that we’re making things hard for ourselves and that in stopping looking for a diagnosis and getting our lives back together, our pain could go away.  I think my thoughts on that are a little over-sensitive and as such I took it with a pinch of salt and enjoyed the rest of the talk.

This idea that looking for diagnosis increases pain bothered me most I think.  As a lot of you know, I had four years of chronic pain before anyone offered a reason for it, Complex Regional Pain Syndrome.  Since then the reaction by my pain team and other doctors to this diagnosis has been one of two reactions – “What’s that?” (out of hours GP and other GPs/medical staff) and, from the pain team and neurosurgeons, laughter and disbelief – I simply to them don’t have it.  When I ask what I do have, they go quiet then say I don’t need a diagnosis.  

While I understand that treating symptomatically is the key in their opinion, I really do have a problem with this undertone of us pain patients being bothersome in wanting to know the cause of their pain.  When we get told not to look it makes me personally feel like I want to know even more, especially when in my case there are many potential causes and many of them haven’t even been explored.   And while this course presented the worry over a diagnosis as being bad for our pain, why is it that it is seen as being our fault?  Surely if doctors could agree more on allaying these fears, covering the bases testing wise and working together to ensure we haven’t got some of the “nasties”, this would in turn reduce our worry?  For example, in this diagnosis of CRPS I got a bit of comfort and relief, but at the same time knew that it should be a diagnosis of exclusion and that exclusion of other causes has simply never happened.  I wonder how many others have been told their official diagnosis is “lower back pain”, which in my view is a symptom and not an answer?  The medical profession have refused to come together and unify in a response, so when we get this back and forth – “You’ve got X”, “No you haven’t, what a silly idea”, of course the worry increases.  That’s not our fault!

Anyway, I’m harping on now.  The course was good, it didn’t focus on some things I would’ve liked to learn more about, such as the role of chemicals and glial cells in chronic pain which were not even mentioned in passing.  I suspect the real problem with the depth of the talk was time.  I would’ve liked to have seen the course BE a course, with more than one talk perhaps.  As it stood it was an hour and a half and with a two minute break in the middle that made it difficult to endure.  This meant that a lot of information had to be crammed into a tiny amount of time and as such things weren’t going to be as in depth as some of us would prefer.  However, I still think it was worthwhile attending if for nothing other than the social experience and being able to provide feedback that might make it better for others in the future.  

Hope you’re all having a “good” week,

Kathy
xx

My lifesaver apps

Hi folks

Been a while I know, had a pretty horrendous flare that left me unable to really use the laptop and I still haven’t got my head around blogging anything other than minor stuff from the phone.  However, it really got me thinking about how reliant I am on some of my phone’s features and downloadable apps.

Many of us have these wonderful smartphones nowadays, running an Android, Windows or Apple operating system.  I can’t say I have any experience of Windows smartphones so for now I will have to leave out references to them, although if one of you has one and would like to pipe up about whether any of the below apps are either available or useful on them, feel free!

 

MANAGE MY PAIN
Android only.
Lite version: Free
Pro version: £2.99

My number one, cream of the crop app for chronic pain sufferers is Manage My Pain from http://www.managinglife.com/  (available on the Play Store too).

As far as I’m aware, this app is so far only available to Android users, but there are other apps by different makers available for other operating systems (just searching now I see “My Pain Diary” for iOS/Apple, and “Pain Tracker Plus” for Windows phones – I haven’t used these so cannot comment on how good they are – experiences welcome!).

The Manage My Pain app is basically a record keeping tool for those in chronic pain, with free hosting of records on their servers to avoid losing data if your phone decides to throw a wobbler.  I have used it for around 7 months now – at first I had the free “Lite” version, which became so handy that I needed up upgrade to the “Pro” to allow myself the space for more records.  Both levels of this app requires an account but it is easily set up and totally free to do that.  I found it very easy and uncomplicated to upgrade from Lite to Pro, and I tend to be a bit of a numpty with that kind of thing.

Below is a rundown of the sections you are shown on opening the app.

Add a record:

Basically here you can create an in depth pain record detailing:

  1. Location of pain.
  2. Other associated symptoms.
  3. Character of the pain – does it burn, throb, ache, stab?
  4. Aggravating factors.
  5. Alleviating factors – including a recent update to allow you to tick whether any of them worked, which is more handy than it sounds.  This aspect means that your results can show whether things like your prescription medications, or heat therapy actually helps or is ineffective and to what extent.
  6. Timing of the pain.  This aspect can be difficult as it is offered in seconds, minutes or hours and at times my pain has gone on relentlessly for days – meaning I sit and calculate the hours in a week for example, or have to make more than one record.  However that’s more my body being difficult than the app and it does allow you to pinpoint whether pain is breakthrough, constant or intermittent at this point.
  7. Environment.
  8. Severity – a typical 0 to 10 rating scale.
  9. Notes – this comes in handy to jog your memory as to anything else you think was relevant or might remind you in the future which record you are looking at.

1 to 5 above are personalisable checklists, allowing you to totally pinpoint the area and character of the pain, and also the factors that help or hinder it.

Results:

Here you can view comprehensive or specific aspect results in various forms such as a summary, pie charts, a timeline, calendar, or just a list of all your records.  I have found certain aspects of this far more useful than others.  For example, other than out of bored curiosity, I haven’t really bothered with the charts.  I have however found the timeline incredibly useful as I can see the pattern of pain levels and whether on the whole I am worse or better than say 2 or 3 months ago.  You can alter the time shown in the timeline itself too.  Regardless of which format suits you for this section, it is worth saying (even though it sounds quite obvious) that you get out of this section what you put in.  If you only have two records, then your results aren’t going to be especially illuminating, but once you’ve been using the app enough to get a few records saved, you’ll be surprised how handy it becomes.

Reports:

This section allows you to create, view and email a report based on your records and results.  I haven’t actually had the chance to use this yet as my pain doctor is, well, a chocolate teapot, and won’t even look at a paper list of symptoms, never mind this.  However, for those of you who have good relationships with your pain doctor, this could be invaluable.  I know of many people who keep paper records of their pain and take them to appointments, and this could be another similar way of making your voice heard.

Sync:

Allows you to synchronise your saved reports with your online account, meaning that you have a backup online, or have the ability to have the app on more than one device.  Or, should you change your mobile/tablet, you know your records are there just by downloading the app and logging in to sync.

My Profile:

This is partly set up when you first register but it totally editable.  Info such as your account information, a list of your pain conditions, and a little “About Me” section personalises things.  There are two sections on this part of the app that aren’t ‘live’ as yet, both relate to your medical information and are “coming soon”.

The last section of the app is About this App and is the usual information on makers, with links to FAQ, a user guide and features page, and contact information.

The Pro version of this app allows you to keep unlimited records of your pain, whereas the Lite version allows you ten at a time – which is doable for the lighter user or one who can really make the effort to blend reports a bit to get the picture they need.  I found it easier just to pay the couple of quid to get the pro version and I’ve certainly got my money’s worth out of it.

It’s not without its problems, but what I can honestly say for them is that they listen to what you’re struggling with and genuinely take it into account for future updates.  I visited their Facebook page fairly early on in my use of the free version and mentioned how it would be helpful to be able to say whether the “Alleviating factors” were actually helpful, and lo and behold, the next update gave that section a double check list for what you have tried and what actually helped (or didn’t).  They seem pretty dedicated to making the app work and work well.

All in all I would definitely recommend giving the free version a try and seeing if it suits you.  Sometimes just being able to look at the timeline of results and say “Well x is obviously working”, helps you see the bigger picture of your pain when you’re struggling.  Or if your pain is clearly increasing, it’s a visual record to show people who should be helping bring that level down – not just a tearful person turning up in A&E without “backup” (as I have done!).  If I used this app to its full potential and had a go with the reports section, I really think it could push my treatment forward too, however as it stands from my personal experience, those in other countries might find that section more useful than I have.  Over here so far the docs I have encountered might scoff at the idea of participating/reading it.  Others might have a different view on that though!  What do you think?

 

MALUUBA
Android and Windows
Totally FREE

The next app I can’t seem to live without at the moment is Maluuba.  I think this app deserves it’s own huge review, especially for those who are blind/partially sighted, as my husband is.  I am going to be a bit shorter in my review of this – it is basically a Siri for iPhone alternative for those with Android and Windows phones.  Actually to call it a Siri alternative is unfair as the two apps have very different approaches to the same tasks.  Maluuba is a voice or typing controlled app that brings together calendar, alarm clock, a Wolfram Alpha information search (like Siri does) and a more comprehensive Yelp.com search and slings in a dash of GPS personalisation, Facebook integration, and other wonders.  To give a couple of examples of what Maluuba can do, here are some voice commands I have tried so far:

  1. “What movies are showing near me?” – brings up local (GPS) cinema listings, times, Rotten Tomatoes reviews, and more.
  2. “I’m sick”/”I’m hungry”, etc – brings together a Yelp.com list relevant to your comment, including links to reviews for the services/businesses you need (eg. restaurant reviews).
  3. “What’s the weather like today/tomorrow/Wednesday near me/in London/etc?” – brings up a local or specific and comprehensive weather report for the days you ask, and more.
  4. Voice controls for opening and searching some apps such as music player.
  5. “Text/Email Lisa and say I will be there soon” – or words to that effect.  Sends SMS messages, emails, reminders, to your contacts.
  6. “Remind me I have a doctor’s appointment at 3 o clock on Friday” – will even send a reminder to someone else you want it to.
  7. All can be linked in to navigation through Maps, calendars on phone/Google, it will even make a reminder for you and send it to anyone else you need to remind or share the information on your Facebook account.

Now that’s nowhere near as much as this app can do, there are more comprehensive guides on the website: http://www.maluuba.com/

I can hear the cogs working, you’re wondering how this is relevant to chronic pain.  It’s not really, but the bringing together of all its functions means I don’t have to open the browser and manually type/search, which is handy when you’re laid up and sore.  That and it’s been pretty fun to mess around with!  iPhone 4s and above users obviously have Siri as an alternative, and Siri does have some benefits over Maluuba, such as being almost its own little character due to its ability to speak the answers to you, which Maluuba cannot do (I have not tested this with the Android Accessibility TTS function as yet – I will update).  Maluuba doesn’t have the funny answers Siri has that have you testing Siri just for a laugh either.  However, I have found pros and cons to both apps and out of the Android alternatives, Maluuba wins hands down.  It’s not perfect, it does have the odd quirk that can irritate, such as not being very accurate at listening as it is still loading and for some reason (until the last update) not having country specific results in it’s “Shopping” section, but it has helped me quite a bit recently, particularly with trips outside of my local area.  I’ve used it to find a place to sit and have a coffee in London, when I was tired and sore in a crowded Covent Garden and couldn’t see the woods for the trees.  I’ve used it to search information on Wolfram Alpha (similar to Wikipedia) without having to open the browser and search.  The most used aspect of this app has been the reminder function, being able to sort out my brain fog by creating reminders for medications, appointments, etc, and being able to share them with others.  It also incorporates my calendars including Facebook and Google, so it has been great for jogging my memory.   It takes up a fair bit of memory space but I would give it a try and see if it amazes or irritates you!

 

TVCATCHUP
Android, Windows and iPhone
Totally FREE

Not the huge review I’ve done for the other apps, but this is a handy app that allows me to watch the free TV channels on my mobile.   Available from the Play Store.  Not exactly groundbreaking, but a boredom breaker when you can’t sit in your living room and are confined to bed without a TV.  How could I live without Judge Judy?  ;o)

 

KINDLE
Android, Windows and iPhone
Totally FREE

Another app I couldn’t live without.   Available from the Play Store or Amazon.com/Amazon.co.uk    I do actually have a Kindle, but I gave it to my daughter as with my pain levels, when I’m laid flat it is cumbersome and digs into my arm when held.  Having the free app gives you most of the benefits of having a Kindle (and if you’re like me and only had the basic wireless Kindle, it adds the benefit of a backlight instead of you needing a lamp).  I seriously couldn’t survive without my books and I have not found a better alternative to Kindle.  There are other similar apps such as the Barnes & Noble alternative “Nook”, and Google Play Books.  I haven’t managed to get into either because I just really didn’t need to – Kindle has a better range of books and I didn’t find anything about this app that made me think twice about trying another.

 

So, at the end of all that, I am going to say that I probably will go off and think “Oh poo, I forgot X, Y or Z” and edit this entry to add more apps.  So, please don’t feel like you’re adding to my workload if you would like me to try an app and review it on this post, or if you’d like to add your thoughts to this post.  Just email me or comment below!

How I roll – Drive Medical Lightweight Rollator

Last week I was assessed by Occupational Therapy for adaptations in my home, due to my lowered mobility from chronic pain and radiculopathy.  At the time I had a lovely chat with the therapist that came out, chatting away about the family and pets (although she wasn’t keen on the tarantulas!).  As part of this friendly banter, the subject of my falls outside came up.  I told the therapist how at that point I was using two elbow crutches to get around, but that I was falling despite them.  She offered to have a physiotherapist come to the house to assess my mobility needs.  I had known for a while that I wasn’t going to like the next step in mobility aid, the “rollator”.  I was in two minds about accepting the help, one half telling myself I am only 35 not 95 and it isn’t fair (imagine stamping 3 year old), and the other telling myself to get a grip and get over it.  In the end my husband talked me into it by making the valid point that anything that got me out of the house was worth a shot.  My (teenage) son piped up that we could always call “Pimp My Ride”.

The next day the physiotherapist came out.  Putting aside the fact that he was very dishy and looked to have recently qualified if age was anything to go by, he was extremely professional if a bit quiet (a 35 year old woman on sticks swooning at you has that effect I’m sure!).   My husband helped him into the house with the rollator and I got my first look at my new wheels, the Drive Lightweight Rollator:     Lightweight Aluminium Rollator – Drive Medical.

Drive Lightweight Rollator

Drive Lightweight Rollator

Well, I wasn’t expecting anything fashionable, I don’t think there’s such a thing when it comes to rollators, and I was just grateful for the help, especially considering this was covered by the NHS.   That said, my gut did lurch at the idea of using it, but I think many people must go through the same.   I don’t want to be reliant on mobility aids, but then I do want to keep mobile until the doctors work out a way to make my legs function normally.   The physiotherapist urged me to let him show me how to use it in my driveway outside and we had a pootle about for a couple of minutes after he fitted it to my height.   He attempted to show me how to fold it, but it wouldn’t budge, even with my husband’s help.

The Monday after the physiotherapist dropped the rollator off, I was admitted to hospital.  I had to go as an emergency by ambulance and because of the rush I and my husband forgot to bring my crutches with me.  The next morning, I was stuck in the hospital bed, unable to get up and move about.   When my husband came to visit that morning,  he brought the rollator, and we used it around the ward and for my short walk home.   That was my first “proper” go with it and my initial thoughts were that in general it was handy to have a rollator to be able to sit and break a walk up into manageable portions.   However, that wasn’t specific to this model, nearly all rollators have seats.   The hard wheels were skiddy on the smooth floors, which meant the rollator often got ahead of me, or swung from side to side like a trolley, but I expected them to fare better outside.   They did indeed have more traction/grip outside, but the hard wheels and lack of suspension meant that even the smoother outdoor pavements made it vibrate and judder about like an old shopping trolley.   I was quite surprised at how poor it was in this respect as even the cheapest prams and buggies have some sort of system in place to make the ride smoother (whether softer wheels or a bit of suspension), it’s not new technology.

This model has two methods of braking – one is to squeeze the handles to the degree you need to slow down, and the other is to click the lower half of the handles down as a full brake for sitting.   I found that even with the full brakes on, when I sat on the rollator, it sometimes moved a bit, and seemed unsteady.   This was worse on smoother surfaces and I found I couldn’t rely on it to sit on in the ward due to the smooth floors.   That said, the squeeze method of braking came in handy for slowing the rollator if it started to get ahead of itself while I was trundling along.

Another more major downside to this model was having to fully lift it up kerbs and over even small obstacles.   At the entrance to the ward was a slight lip to the floor, this was only a matter of a centimetre or so, and yet the rollator’s small wheels repeatedly “jammed” on this and nearly made me fall.  On larger kerbs (such as outside, crossing the roads), my husband had to help me lift it up over them.  This added time to the crossing, meaning at one point I was stopping traffic (makes a change!) and also meant I wouldn’t be able to use it alone.  Although the rollator is classed as a “lightweight” model (weighing in at “less than 7kg” according to the manufacturer’s website), it’s still a hefty weight for someone to lift when they’re wobbly on their legs.    Many other models from other brands have “kerb climbing” ability or accessories, although in fairness these models are more expensive and were not available to me in my area on the NHS.   That said, I would not feel safe using this model alone, and this would restrict my ability to get out and about, and so if I continue to use a rollator, I would have to buy a model that did not have the pitfalls of this model.

In summary, I hope this review is helpful to those of you considering a mobility aid, and to make things a bit easier, here are the pros and cons of this model:

Pros:

  • Available in my area as a free longterm loan, funded by the NHS (please contact me if you have experience with other areas’ NHS provisions).
  • Cheap to buy – from around £49.99 online.
  • Storage for a small amount of personal items under the seat.

Cons:

  • Can be unstable to sit on when locked if parked on smoother surfaces.
  • Small wheels mean going over even small thresholds is difficult, kerb climbing is impossible without lifting.
  • Hard wheels and lack of decent suspension make a juddery ride, which could be bad for arthritis sufferers in particular.
  • Very difficult to fold and not freestanding when folded.   Would need someone with you to fold it as it can be a two person job, or at best a two handed one.
  • On smoother surfaces, handles like an out of control shopping trolley.

If any manufacturers have a product they would like me to review for them, please get in touch.  I would love this blog to become a tool for those with chronic pain to aid them in finding the right products and services for them.   I will always review fairly and on personal experience.   Many thanks!

Newbie to blogging

Just a quick post to welcome you to my blog.  In the About Me page, you will find more information about me and why I started this blog.  I am really looking forward to writing this, and hope you will share your experiences and thoughts with me as the blog progresses.  I will be writing some product reviews on mobility aids and other items that I have tried in recent years, and would love to publish some of yours too.   If you have a topic you’d like me to cover in one of my posts, please feel free to comment and leave your ideas.  Lovely to have you here!