Author Archives: wobblywife

Maintenance

A really important issue for many people with chronic pain – two steps forward and a million back? Shaz writes so brilliantly and openly about her life with CRPS. I would highly recommend you follow her!

CRPS Shazz

HydroIs it just me or do others having difficulties balancing all that you are supposed to do (or not do) with regards to having illness?

I try so hard to be a good patient, take the advice I am given, doing my hours of physio, happy time, exercise but all of the aspects of your life that you are trying to tweak, there is always something that goes by the wayside.

2 days after my birthday at the beginning of June I had a really severe flare again, as bad as Christmas time. Unable to barely move a muscle for the pain. Getting to the toilet was hard enough, changing my clothes and showering just didn’t happen for many of those days. My son of course offered to help me with my clothes but in actual fact I wouldn’t let him closer than 2 metres because the breeze his body…

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Yes, I am alive (updates, PMP, SCS, social services in the UK)

Sorry to make this the 3rd post today but I wanted all the stuff I have to share in its relevant “box”, so had to split it up.  

I am alive, sorry for having been quiet again but as you probably guessed there’s been a bit of a flareup.  I’ve also had a million and one appointments and assessments.  I’ve even been sent a form to fill out to get a form to fill out!  

I think I told you recently I’d been referred to the pain management program.  Well I met initially with a physiotherapist and was told I would be working with the team on a one on one basis for now as I’m apparently not ready for the group PMP.  To me that’s a positive although my competitive side is wondering why lol.

Up to date, I have now seen the physiotherapist twice.  Within these appointments we’ve discussed what I need out of this relationship and moved on now to pacing and my sleep issues, both of which are big issues to many of us with chronic pain.

The physio has talked me through the pacing concept in depth and this ties in with my GP’s decision to refer me for a wheelchair assessment (which I’ll go into further into the post).

For me personally, pacing is going to be difficult.  The idea in the simplest terms is that when you push your boundaries in activities, it has a negative impact on what you can do the next day (or even longer).  It is well accepted that regular activity helps pain, and yet when we continue on trying to be “normal”, we end up in a flareup, stuck in bed.  So how do we change this?  For me, I’ve been told I need to work out for any activity at which point pain interrupts my thoughts and take a step back from that to determine the safe level, whether that’s in distance of walking, time, etc.  Then I can do a rest activity for a small amount of time, and start again.  This in theory increases what I am able to carry out without laying me up and putting me back a step.

So for example, in my case pain interrupts my thoughts very quickly when I’m walking.  Embarrassingly it’s about 2 minutes into a stroll!  The physiotherapist explained to me that all activities in very basic terms fall into four boxes – walking, standing, sitting and lying.  My rest activity can be any one of the other three.  The plan for me is to use a wheelchair as a walker, walk for a lesser amount of time than it would take for pain to become an issue, then use the chair temporarily and start again.  This should in theory make it a lot easier for me to have a day out rather than worrying about finding a public seat, and because I’m not hitting my breaking point, I should be able to gradually increase my mobility without paying for it in days in bed.  There was an emphasis put on doing this regardless of whether I was having a good or bad day.  On good days I am going to be very frustrated and on bad days I will have to kick my arse into gear and get on with it.  I’m ready to do it…..well mentally I am.  The wheelchair is absolutely imperative for me, and this is where the problem lies.

My GP referred me for a wheelchair assessment through adult services (part of Social Services).  I was told they would come out to my house the following Monday but in reality they turned up on the Friday before and I wasn’t in.  Not a problem, they had my mobile number and rang me to sort it out.  At this point I was quite surprised as I had been told this would be an in depth evaluation in and around my home of my mobility needs.  Instead the lady asked me a couple of basic questions on the phone, then told me I’d hear from them when I would be getting a wheelchair.  At this point she told me that the waiting list was well over 20 weeks.  Well, when you’re getting something for nothing you shouldn’t complain but I was really disappointed to be honest as I was dying to get going with my life instead of being stuck within a five minute walking radius of my house.

I am told by my physiotherapist that I can hire a wheelchair through the Red Cross, which is absolutely great.  I’m lucky in that there is a centre just up the road from me, so my sister and I went along to ask for more information.  They will lend me a wheelchair should they have one in stock, but it can only be for 6 weeks.  So it looks like I will have to buy one well before I get a chance to have an NHS one, which is worrying me due to the cost of them.  

The Red Cross also explained to me that most of their wheelchairs aren’t returned by their clients, which in hindsight is understandable but not acceptable.  I suppose people are desperately in need in this area due to the long waiting list through the NHS/Social Services.  However, it is very sad in this day and age that people are essentially stealing from a charity.  Perhaps there’s something to be done there, a bit of publicity for the Red Cross and over the ridiculous waiting time for NHS help.

Moving on to the big appointment that I was dreading – my meeting with the spinal cord stimulator (SCS) surgeon.  The usual process for a consultation with him is for the pain clinic to refer you after all else has failed.  My neurosurgeon had written to my pain clinic recommending they refer me to him, but my pain consultant had refused, saying they never work and wouldn’t be suitable for me.  My GP had then suggested he refer me directly as he (and I) felt that the pain consultant had been hasty in saying no and was biased.  So I went along to this appointment knowing that I would be seen as the difficult patient who had gone over a consultant’s head, and this made me very nervous.  At this point I fully expected it to be a “No”, but I wanted to hear objective information and also be heard.  My pain consultant’s decision had been based on the idea of it not ENTIRELY fixing ALL my problems, and that’s not an expectation I ever had.  I just wanted to explore it and talk about it.  

So, last week I went along.  I went in ready to be told that it wasn’t suitable for back pain, it wouldn’t take away everything and that I wasn’t suitable for a trial.  I explained that I didn’t have those expectations and was a bit gobsmacked by the response.

The surgeon asked me what my main problem was.  I explained I have three types and areas of pain – the back pain, the nerve issues in my thighs and groin, and my sciatica.  I explained that out of all of them the sciatica has the greatest impact on my mobility, which is more important to me than my pain.  At this point he stepped in to explain he has “new technology available” that may be able to target my back pain as well as the sciatica.  In contrast to what my pain consultant saying about the SCS only being able to target a small and localised amount of pain in one limb, the SCS surgeon also explained that in many cases they actually struggle to get the stimulation into just one limb, so he feels that he could even target my burning thighs a bit.  So I went in with no expectations and came out with a bit of hope.  

I’m not saying SCS is definitely for me, but at this point I feel a trial would be extremely worthwhile.  The surgeon says I am an ideal candidate, but that I have to lose weight and be “in the right place” physically and mentally for the trial. 

Ordinarily the process would be to finish the group pain management program before getting a trial, but I explained that the physio had decided to keep me on one-on-one for the foreseeable future, and that this would mean I wouldn’t be starting the group PMP until potentially next May.  So, for me, they are going to liaise with my PMP physio and let her judgement help decide when I’m ready, rather than me having to wait for the group PMP.  I am really pleased and grateful that they were flexible in this.

As a final note, I wonder how many of you have had to apply for a disabled bus pass?  In the past in this area, you would take along your DLA entitlement to their customer services office and that would be your proof.  Now it is different – I visited their customer services and was told I would have to ring Social Services for (yet another) assessment.  I did so and was asked some questions on the phone and told they will be posting me out an application form.  I asked if that was it and they said that form goes back to them and then the transport company send me a form.  So I have to fill out an application for an application form?!  Madness! 

Chin up lovelies, speak soon xx

CRPS discussed in parliament yesterday – UK sufferers this concerns you!

Just a quicky post to ask any UK CRPS peeps to take a look at the link below (you’ll need Windows Media Player I think but try it anyway).

Yesterday an online acquaintance who some of you may know, Kev, managed to get his words heard in parliament thanks to his MP Ian Stewart.  This was a really positive moment for UK CRPS patients as it has highlighted the need for more funding into research and diagnosis.  I really would recommend you watching it for yourselves as I don’t feel I will do it justice, however I will come back to this post and bulletpoint a few pertinent points made once I’ve re-watched it with a notepad.  The CRPS subject comes up at about 2hrs 19 minutes into the video. Please share!

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=13533&player=windowsmedia

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

Flares are so last season

Hi folks

Well you might have guessed from my relative silence recently that I’ve been in a bit of a flare-up, so I wanted to use this opportunity to write about something I’ve been looking into, but haven’t taken the leap with – the flare plan.

The basic concept is to have a plan, not just in your head, of what to do when your pain increases to a level that needs affirmative action.  It sounds fairly simple, but I haven’t got to the point where I am quite organised enough, or even knowledgeable enough, to put the thoughts into a ‘proper’ plan.  I’m still in the “I know what I’m doing……oh my GOD it HURTS, what do I do, what do I do??” stage!  That and I think I had a few preconceptions about whether it was all pointless or ‘shutting the gate after the horse has bolted’, which is something I would invite you to discuss in the comments.   It’s also only recently that I’ve come to realise that these things are going to keep happening from time to time and I have to know what to do other than ploughing meds into my trough and hiding under the duvet (although I suspect those two approaches will make their way onto my plan still!!).

From what I have read, the idea is to compile a list of things you need to remember, or have on you, at times when the flare grabs you.  I have compiled some links that might help you guys to make your own, I will bob them at the end.  The following is a basic set of ideas to add to yours.

  1. A list of medications, timings and dosages that you can take.  We all know how pain can muddle our thoughts and although we consider ourselves self-medicating experts (or I do, dunno about you!), I think it’s fair to say we’re at risk of forgetting what we had and when at times when that pain is blinding.   I do think that this just written on a card might be useful to some but reminders may need to be on mobile phones/watches/from family at this point, so it would be important for a copy of the plan to be available to whoever’s living/working with you, OR timers set on your phone/watch if noone is around or you want to maintain independence (eg. at work).  While you probably won’t want to be setting reminders on your phone while you’re in a lot of pain, make a note of when you took your top-up medication if it was different to normal timing/reminders – a family member could jot it down, or you could even set the stopwatch on your watch/phone so you don’t forget how long it has been since you took them.   Top-up meds are the ones I tend to struggle to remember as I obviously don’t always start taking them at the usual times I take my other medications.
  2. Contacts – who can you ring to help?  Do you have a friend or family member who you’ve arranged to come over when you need or who can talk to you on the phone when you’re feeling pants?  I would also recommend having your GP’s number and other medical contacts so noone has to go hunting them down if they’re needed quickly.  If you have children, or other responsibilities that others may have to take over for you, it’d be worth having a list of contacts relevant to those too.   As a side note to this I have thought it might be useful to have a record of anything that your carer/family/colleagues may need to take over for you while you are struggling, just in case you’re medicated or so sore you can’t remember/communicate what needs doing and when.  Not sure how this would work as part of a permanent printed flare plan but something to consider.
  3. Personalised information on what you know helps you.   So for example if you find relaxing music is a must for you, have a reminder on the plan for yourself or those around you of which CD and where it’s kept.   You might want to remind yourself to focus on your breathing if that helps you.  If you like using a TENS machine, remind yourself to use it, what level, what programme.  It sounds really basic but you might forget in the brainfog of pain.   This is the part of the plan where I started wandering off in my head about how to organise things, and after discussing it with others I’m not alone on this – I want a drawer or cupboard in my bedroom that I know will contain the things I need in a flare at all times regardless, and I also want a miniature ‘box of tricks’ when I’m out and about, probably just the basics to get me home in an emergency.   My drawer won’t just contain my medication, but my TENS machine, heatpack, a damn good book, headphones and my mobile charger among other things.
  4. Exercise versus rest.  A lot of guides suggest having part of your plan dedicated to outlining how much rest you are allowing yourself and how much exercise you are going to keep at during a flare.  Keeping mobile may seem impossible when you’re in a lot of pain, and you won’t hear me lecturing on this subject as I’d be a huge hypocrite.  All I want to do is lie in bed when I’m sore, but I also know it doesn’t help me personally.  I’ve started pushing myself to do a very limited and safe amount of exercise (in my case a very gentle 5 minute walk to our local park, with a sit at the other end to feed the swans, or if I’m totally incapable of that, some stretches in my bedroom) to try and keep myself from seizing up.  I’ve found if I just wallow and lie in bed, my pain takes longer to resolve and I am lower in mood.  I really am a lazy sod, so admitting that I have to exercise even in my own piddling little way, is a big leap!!  I wouldn’t want anyone reading this thinking I was advocating running a marathon when you’re feeling rubbish.  I’m no fitness queen, I’m just determined not to let a flare pin me down for any longer than necessary.
  5. Controlling your thoughts.  You might have gathered that although I’m a bit of a liberal hippy at heart, I also have a Yorkshire/northern attitude towards “arty farty” concepts suggested by people who aren’t necessarily experienced in the reality of this kind of situation.  So you can trust me when I say I’m not trying to pedal any pop psychology, and ultimately this is your plan and you can choose whether or not any of the above pointers, including this one, are right for you.  I have found that in emergencies with my kids/family/friends, I go into an automatic “nurse mode” – the emotions switch off and I just “do”.  If I allow myself into negative thinking, first of all it spirals into panic, and secondly my bossy Yorkshire (?) attitude tells me I’m being a melodramatic idiot (yeah, I beat myself up a bit sometimes).  So I have been asking myself why I let myself focus on how terrible the pain is effecting me when it’s my turn to be the “patient”?  Of course I still do it, I moan to myself in my head that it’s terrible, unfair, never going to stop, and that I can’t cope or am weak, etc.  The result is of course that I’m so focused on the pain and these thoughts that my mood gets lower, I am less motivated and any distractions from my top list won’t work a bit.  So I do think it’s worth mentioning this suggestion, as “arty farty” as it reads at first glance and as much as I haven’t yet put this part into practice.Positive affirmations such as “It will get better soon”, or “This won’t last”, or “I am strong and will get through this” might be a bit of a push to some of us cynics or negative thinkers, to others it might be immensely beneficial.  I would recommend keeping these at least realistic – telling yourself you’re not feeling pain or feel great is not going to get you anywhere.  In my case I’m going to try getting into “fight mode” and that might involve a few choice and profane words directed towards the pain and maybe even myself if I’m being a whinger.  I’m not suggesting any of you try and bully yourself out of your funk, it’s probably not a great idea for most.   My recommendation would be to at least to try and distract yourself from focusing entirely on the awfulness of the situation.   Some might find focusing on surviving the storm, or winning this small battle or that kind of concept easy, others might find it a bit vague.I was advised to remember that chronic pain is most often not a sign of new injury and you have most likely not damaged yourself further by having the flare.   It might help to see it as a reminder from your body to listen to it’s messages, and in the time after the flare it could help a lot to look back at what you consider to be the first signs and potential triggers of what you’ve experienced.
  6. Emergency instructions.   Some people carry a wallet sized card of emergency instructions for medical professionals that are related to their specific conditions and some add it to their flare plan.

OK so I turned the basics into an essay yet again, so I will leave you lot to have a ponder on whether you think the flare plan is a good idea, and if so what you think about the ideas I found from those websites.   Here are the links for anyone who wants to have a read, feel free to message me with any more you find:

Health Talk Online – Coping with Flare-up 

Action on Pain – Plan for Flare-ups

Pain Concern – Flare-up Planning

London Pain Clinic – Coping with Flare-ups and Chronic Pain

An update on Kathy’s journey – there are 3 A’s in pain

So last time I updated you, I was talking about the big A, acceptance.  That’s still something I am monitoring, as you know I have mixed feelings on it.  I do think acceptance is bandied around a bit as an excuse not to bother trying by doctors who don’t or don’t want to understand CRPS and chronic pain in general.  Scary when it’s your pain clinic consultant!  That said, I’ve had to broach my CRPS in various circumstances recently and on reflection I do think acceptance is something I can hack, well a bit.

One example is my eye test this week – I lost my glasses a while ago and at my last test had been told I “MUST WEAR THEM AT ALL TIMES!!!”, so avoiding the situation wasn’t an option.  Part of the eye test involves the optician asking about current medications and health concerns, and I couldn’t really get around this without having to mention the opiates and CRPS.  On sharing this, with a cringe, I got the overt sympathy response from the optician.  “Oh you poor thing, I could never cope with that, it must have ruined your life”.  I don’t know whether it’s my aversion to any kind of pity or being a Brit, but my usual go to response of a bit of self-deprecating humour came out.  I don’t want to be a “big deal”, I don’t want CRPS to be getting all the attention when I have gorgeous big brown eyes that need checking out.  I played it down, “It’s no biggy, everyone’s got problems and at least mine get me the good stuff!”   Is this another step in acceptance?  Possibly.  I do think I am becoming obsessed with that word now and not in a good way.  *spits*

Now ACKNOWLEDGEMENT is an issue I can sink my teeth into.  That’s empowering, but can be the polar opposite of my stiff upper lip when I focus on why others aren’t acknowledging my pain, symptoms, story, right to be listened to.  I think this was a greater issue that came out of that recent pain clinic appointment.  I wasn’t acknowledged.  Noone wants a fuss made over them (although it’s my birthday today, so you can go for it this once lol), but how do we balance avoiding the pity trip (whether from ourselves or others) with enough acknowledgement of our issues and what is important to us?  Too few doctors acknowledge CRPS as an illness, I’ve already met a couple in person who see it as “just a label”, and I’ve met more who think life is better without a diagnosis or label at all.  Perhaps that’s the case, but how does our pain get acknowledged for services such as benefits without that?  We get seen as moaners, people who “just have a bit of a bad back”, that kind of thing.  We need that acknowledgement to open doors that help us through in life.  It’s a fine line, I know, but it can make all the difference.  It’s all very well saying we don’t need a diagnosis psychologically, but people are different, what they need is individual, and socially/support-wise many of us do really need a label just to get the help we need.

The last A is advocacy – who has our back?  Not the government at the moment, who are stripping the weakest in society of their benefits.  Some of us have great doctors who are tuned into what they need, and others of us feel left out to dry.  I’ve been struggling with my pain clinic this month.  As some of you will have read, my consultant got me out of the door by promising me a place on a pain management programme “within a month”.  This consultant runs the PMP, and is well aware of any waiting lists.  I was stunned and my husband was cynical of the promise but got direct answers that left no uncertainty – I would have a letter within a fortnight, and a place to start within a month.  Nothing there to be misunderstood.  When I didn’t receive a letter, I rang the secretary – and I might be paranoid in pointing out at this point that she has told me previously that she has called ID on her phone.  Four calls over a week were answered by another doctor’s secretary who shares the office but not the phone line.  Each time I was promised a call back within the day, not one time did I get one.  I caved and rang back, to be scoffed at by my doctor’s secretary and told it will be “months and months” before I even heard about the PMP, never mind get a place.  When I explained what had happened in the appointment I was told I must be mistaken, but she would speak with my consultant and ring me straight back.  Did I get a call back?  Did I heck as like.  Another call for help regarding severe new symptoms and possible rapid spread of the CRPS has also been ignored despite the other secretary passing the message on that in her view I needed urgent help.  Still waiting, a week on.  On a side note, my consultant’s secretary is not the only one with caller ID and I have not missed any calls, never mind one from her office.  So advocacy is not something I have there.

I have however used the Patient Advice and Liaison Service (PALS) in the past and intend to do so again on Monday.  I also finally have the acknowledgement of my GP now my diagnosis is in writing and he is finally working with me in getting things sorted.  This has involved the GP going over the pain clinic’s head by referring me directly to the Spinal Chord Stimulator neurosurgeon that the pain clinic refused to do.  It may well also involve a referral to a new pain clinic as I believe the relationship with my current one has irrevocably broken down due to their continuing lack of communication, acknowledgement and support.

Another part of the advocacy issue is that I have received a response from the Secretary of State for Care and Support to my letter to my MP.  I will get it scanned and uploaded at some point when I work out how best to do that.  Check out previous posts on how you can get the government to listen to us.  The Rise Above Pain blog will be moving to a new level in advocacy for CRPS and chronic pain sufferers, I intend to get the ball rolling with a support network and advice packages, and also get some education on CRPS out there to those who can genuinely make a difference.

So that’s where we’re at.  I’m going to keep pushing for support while not giving in to self pity, which is something I really cannot stand in myself.  CRPS can take my nerves but it can not take my often ridiculous sense of humour or determination not to “give up”.  If there are people like me in the UK who want to get this moving forward, please pipe up!

UK chronic pain sufferers – is your voice being heard? Rise Above Pain!

Well, it has come to that point where my musings about living with pain have become a more pressing need to share information on CRPS and chronic pain, not just because I keep coming up against brick walls, but because I am watching others go through the same.

Doctors who are not current in their knowledge of CRPS (“It’s just a label”, “It can’t be treated”, even “What is CRPS?”) and/or their treatment of chronic pain.  Patients having to go from doctor to doctor until they (if they are lucky) find one that “fits”.  People like myself looking for a UK CRPS support/information group who will support them and get their voices heard.

There are some fantastic CRPS/RSD groups in the US, Australia, Canada and the likes, and yet over here I have only found groups that have closed down.  The groups abroad are willing and happy to support us but we have very little in the way of support and advocacy/education here in the UK.

So, after making sure I wasn’t going to be treading on toes and after a positive response to my contact with my MP regarding the UK situation for chronic pain sufferers, I have decided to take Rise Above Pain to the next level and evolve it into a UK group pushing for education on CRPS (and other conditions should I get the feedback/support from others) and fighting for our rights right here in Britain.

I am hoping to find UK sufferers/carers to help me get this off the ground – until then I will keep blogging away and set up a small forum for us to share our thoughts.  Perhaps a Facebook page?  Let me know what you think.  From now on Rise Above Pain will get you heard.

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!

Upcoming posts and more

Just a quick post to apologise for the lack of posts over the last couple of weeks.

My wonderful big sister took me and my daughter to see Pink in concert in London, and we hit the fantastic vintage shops (I’m mad for vintage).  It was a fantastic weekend but has left me behind on decorating, which is hard enough with chronic pain alongside general life!

I have a couple of posts to polish off before posting, one on sleep issues surrounding pain and one is going to be a review of some pampering goodies I am testing for Gelicity.  Not medical products per se but those of us in chronic pain deserve a bit of spoiling every now and then and the Gelicity products were intriguing to me after a friend mentioned them as particularly soothing for aches.  As the name suggests, there’s a jelly/gel connection there that should make for an interesting review!  So far looking very good just down on customer services, I’ve had the royal treatment and feel totally lucky!

Catch you all soon xx