CRPS Awareness Month

Lots of things have been happening recently with November being CRPS awareness month. I have been in a few local papers raising  awareness of CRPS (see links on the right).   On November 7th (CRPS day) I got to meet some senior councillors at Islington Town Hall, teach them all about CRPS  and have an orange themed photo. It was great to raise awareness of CRPS in the local community and also to have them support my CRPS awareness work. 

On November 12th I went to a soup lunch held at the Halfway House Kineton (Gloucestershire), raising money for CRPS UK. It was a great event with many members of the village supporting the event. Tania (Landlady) had made three different soups with £2 from each soup going to CRPS UK, I can assure you that they were all delicious (I had one not all of them!). It was lovely to have one of the co-founders of CRPS UK and also two members of the support group there too. It was a lovely afternoon and we raised £260 for  CRPS UK in the process.


For the last month or so I have been raising money for CRPS UK and my 5Km wheelchair challenge, thank you to everyone who has donated so far I have raised over £1000, which be a massive help for the charity. If you haven't donated but want to click  here. 

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As it is CRPS awareness month, here are ten facts about CRPS:

1. CRPS is the most painful condition known to medicine.
2. Many cases of CRPS go misdiagnosed.
3. A study claimed that 1 in 3800 people in the UK develop CRPS.
4. The cause of CRPS is unknown although it is usually triggered by an injury or  surgery.
5. There can be complications of CRPS such as ulceration which can lead to further complications and infection.
6. There is no cure for CRPS 
7. There are no specific medications for CRPS.
8. Treatments include spinal blocks/epidurals, spinal cord stimulators, ketamine/lidocaine infusions.
9. Most doctors have not heard of CRPS let alone know how to treat it.
10. In the past CRPS was thought to be psychosomatic but research has proved this to be wrong.

Invisible Illness

'But You Don't Look Sick...'

'Don't Judge a Person by its Cover'

When I am out and about in public I may not appear to be in pain that doesn't mean I am not in pain. I don't show I'm in pain because I want to live my life just as any able bodied person would. If I was to show the amount of pain I was in all the time then  I would be a very negative person. When I'm out and about I don't always use my wheelchair, I use my crutches, the same type of crutches that you would be given for a broken leg, it doesn't mean I am not living with a permanent disability.   

People have a tendency to make a judgement about a person. When you see a person getting out of a car in the disabled bay for example, but they don't look particularly disabled. You ask the question to yourself "How is that person disabled?  Should they be parking there?"  You may decide that person is not disabled enough and you form a prejudice against him/her.  Imagine that person suffers from chronic pain and can't walk very far, they may be walking unaided but that doesn't mean they aren't in constant pain. Maybe they need that blue badge to enable them to do their shopping or get to their doctors appointments. 


There is very much a love hate relationship with having a invisible disability.  There are positives which include  giving you a chance to blend in with the rest and being selective as to who I share the details of my disability with.  However this can make it harder to accept I'm not physically  who I used to be, I see the same person that you used to kayak and play sports. 

One of the biggest problems presented by having an invisible disability is getting the treatment you need and deserve. My CRPS symptoms, especially early on were not always visible and I couldn't ensure that they would appear when I went to a doctors appointment. This can lead to a feeling of am I being believed?,Or even thinking that the doctor thinks you are a hypochondriac.


One of the less talked about areas of invisible disabilities is side effects. When you have a chronic pain condition you take multiple medications to try and dampen down the symptoms. These medications can often feel like they are doing more harm than good.  I might be a out in my wheelchair but my medications might be making me feel nauseous and knackered. Yet if I was to stop every time that I was suffering from side effects, I would just be existing rather than living. That wouldn't be conducive to a very positive experience and therefore you have to fight and not let those side effects get you all the time.

So thank you for all being so supportive, both through this blog and my Facebook page (@LivingWithCRPS1). But next time someone opens up about their disability, listen and acknowledge what they are saying, don't question it and think about what you might not be able to see.  Most importantly acknowledge the positives you can't see, the strength and resilience, determination and hope that person has. Even if you struggle to comprehend what that person is going through a little encouragement goes a long way to keeping that person going.

"A journey of a thousand miles begins with a single step" (Lao Tzu)

Earlier in the summer I traveled to Kenya on crutches, to volunteer at a school that serves the local Maasai community.  In a matter of hours I went from not going out the house on my own to on a plane going to Africa on my own.  I was extremely excited at what lay ahead, I had been to Kenya on a family holiday four years previously and this trip had been a long time coming.

In the two weeks that followed I had an amazing time, teaching primary age kids anything from CRE (religious studies), maths, English and all about life in Britain. Seeing how much the kids loved being at school and learning, put a massive smile on my face.  

I spent two weeks singing and playing games with the most amazing group of children and teachers, that I almost forgot what I had been through in the months leading up to it. I was doing what you would expect at my age, rather than being different (not that that is a bad thing). I  proved to myself, my family, friends and medical team what I was capable of even with CRPS.  

Seeing the conditions in which many of these children lived in and how many of the children walked for up to two hours each way to school, put into perspective my situation,  I realised how lucky I was to live where I do and,  to have access to services such as hospitals.

I was also able to meet the two children my family sponsor to go to school along with the rest of the sponsored students. This was the highlight  of the trip. Seeing how much it meant to the children to meet their sponsor and also to go to school, made it all real. It was very emotional and I still cannot put it into words. 

Looking back over those two weeks I made such a positive impact on the children at the school and on the ones that we sponsor, it made the hard work I had to done in order to go to Kenya such as physio, all worth while.  All of a sudden going back to university seemed easier and the future a lot brighter, CRPS was not going to stop me doing what I wanted to do.

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What made the trip  possible?

The key to making the trip possible was the special assistance services provided by the airport and airline. I had notified the airline regarding my needs a few days before the flight. When I arrived at the airport their systems hadn't quite worked as they should, and it appeared quite chaotic. However within an hour they had sorted the issue out and had a wheelchair ready to take me to the plane. I was taken through security and through to a lounge, where I waited to be called to be taken to the plane. I had booked the bulkhead seats which provided plenty of leg room, allowing me to stretch my CRPS leg out during the flight, which really helped.  When I arrived in Kenya I was helped from the plane through passport control all the way to being picked up by family friends, it couldn't have been easier. 

On the way home from Kenya it couldn't have been more straightforward in getting to the plane. My only complaint would be when I landed in Heathrow. My flight was one of the first to land early that morning, I was taken in a relay style system in a wheelchair to just before passport control, where I was told it would be a 45 minute wait if I wanted a wheelchair the rest of the way. Given you have to notify the airline a minimum of 48hours beforehand, I thought they would know how many wheelchairs they needed for each flight and when they were coming in. Luckily I was able to use my crutches and a few of us followed a member of staff through the special assistance queue and to where my parents were picking me up.  

This was the first time I had traveled using special assistance and I learnt that you have to be patient but the service works. All the staff who helped me were friendly and knowledgeable and I would recommend the special assistance service. 

Eleven

Since being diagnosed with suspected chronic pain and eventually a diagnosis of Complex Regional Pain Syndrome I have had eleven procedures, including two minor ones which I had just before the diagnosis of CRPS. Only one worked and that was only the beginning, if only I had known what was coming so I could prepare myself for it. 

Since February 2015 I have had nine day case procedures, five of which I have had in 2016. Thats nine trips to radiology theatre, nine sets of sedations and numerous injections plus infusions. Yet only one, the first one in February 2015 could be considered successful as it gave me relief from the pain for a week.  The following eight have made it worse and believe me there are different degrees of worse. 

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Procedure Number 11.

I went into hospital understandably apprehensive given previous experiences, but I went through the normal processes  signing in and being admitted to the ward, meeting my nurse making sure everything was in order. Finally my consultant came round and we discussed the procedure I was  having and what the risks were, I signed the consent form and that was that. I lay on my hospital bed watching television wishing time away as I was extremely hungry as I was not allowed to eat. Eventually the porter came to take me to radiology theatre, final checks were made and I don't remember much else. Apparently the procedure itself went well, but I came round in agony, I was hunched over a pillow crying saying my leg and back hurt (both affected by CRPS). Of course I was given lots of strong pain killers but they barely touched the pain, I spent the night in hospital and spent the whole of Tuesday in what felt  like more pain than the day before, I was being given as much pain relief as they could give me. I had an MRI scan of my spine, which was horrendous as I was forced to lie down which was agony. There was no changes from my previous scans and the decision was made to discharge me, with the pain killers which they were giving me on the ward.  I lie (well halfway between lying and sitting) in bed writing this post in the same amount of pain and on the same medications.

But why?

The question I get asked most is why? Why do you put yourself through eleven procedures? When the success rate is so low? Well when you suffer from chronic pain, from the most painful condition  recognised by medicine, you will put yourself through a lot in order to try and gain remission or, to lower your pain so you can have a better quality of life.  If  there is an an avenue open to me that might lower my pain levels that seems appropriate then I why not take it? If I don't take it I would never know if it would have worked or not, it may be a significant opportunity missed. With regards to success rates, there are no high success rates with procedures and treatments for CRPS. Just one of the very annoying characteristics of CRPS is that everyone reacts differently to treatments and procedures, therefore the medical professionals cannot give you a reassuring success rate, you have to weigh up the pros and cons and take the risk. 

I took that risk eleven times, and unfortunately for me only one worked.  I don't regret taking those risks, even if I am paying the consequences of a few of them. They were opportunities to start to take my life back from CRPS and I think most people would do the same if they were in this position. However I still have an opportunity to take my life back and that will be as a wheelchair user, I will be able to do almost all the things I did before CRPS and also a lot of new opportunities will arise.  However I digress, one of the reasons I had to go through eleven procedures and have CRPS change my life completely is because there is not enough knowledge amongst medical professionals, or research going into  CRPS and how to treat it. I hope no one else would ever have to go through the pain of having Complex Regional Pain Syndrome, let alone eleven procedures.  It is only by writing posts like this that we are likely to get awareness and ultimately more research, better treatments and possibly a cure.

Learning to Live with a Disability

In February this year my life changed dramatically, I walked into hospital and didn't walk out again. I haven't walked since. I have gone from being an independent young woman, enjoying university despite suffering from CRPS, to being completely dependent on my family to do the most simplest of tasks. So here we go here are some challenges I have had to face, whilst learning to live with a disability!

The first challenge I have had to to face most recently is not being able to walk. A skill that until it was taken away from me I took for granted.  Not being able to walk is one of the hardest challenges I have faced, I am now reliant on my wheelchair or  crutches. When I go out I feel like everyone is looking at me, I feel different.   I know it is probably out of curiosity as to why I am in a wheelchair, but the negative thoughts still go through my head and can be quite upsetting. Walking is what enabled me to go out by myself and see friends or go out for coffee, now I can't do that. Most streets and shops are not wheelchair friendly, unless I have someone pushing me I cannot get to them, let alone go in the shop. This really annoys me, why does it have to be so hard for a disabled person to do the most basic of tasks, why can't they make pavements smoother? lower curbs sufficiently? make all shops accessible? 

This leads into the second  challenge, loosing a lot of my independence. Having just completed my first semester at university, I had become used to having independence and the ability to do things when I wanted.  Now I am reliant on my parents and friends to do the most simplest of tasks for me. I can't just go out the house on my own,  most of the I cannot go up or down stairs on my own. Meaning I am stuck in my room or the living room which at times can be quite isolating especially if I'm the only one in the house.  Not only that, despite being told its not a problem, it can feel like I'm being a burden on who ever has to help me.  

There are two challenges I have had to face, not just in the last couple of months but ever since I was diagnosed with CRPS (Complex Regional Pain Syndrome). The first is adapting to having to take medications every day just to get through the day.  I wouldn't choose to take these medications as a lot of them have horrible side effects both short and long term, but the fact of the matter is if I didn't take them I probably wouldn't be able to get out of bed.  A lot of the medications I have to take are either not normally associated with pain but with depression or epilepsy, before you ask why, this is because CRPS is a neurological condition which causes chronic pain.  Or I get  a look of shock when the person realises the strength of the painkillers. Despite taking these medications I still end up in pain and sometimes don't want to but I have no choice, it could be a lot worse if I didn't.

The second is probably the biggest and hardest challenge that I have had to deal with, that is acceptance. Acceptance that I have CRPS, that there is no cure and that I am going to have to give up playing sport and deal with this condition for a long time. Accepting that I have a chronic pain condition has been extremely difficult as  I don't want to admit it. But in order to deal with it acceptance is key because fighting it against it could only make it worse. Only by accepting the condition and the situations it puts me in am  I able to learn to over come them. So in the last year by accepting that I have to live with it or along side it allows me to put on a smile and look (even when I'm not feeling very) calm most of the time. 


The four challenges mentioned are just a few of the many challenges, both large and small that I have had to face both before and after diagnosis. But I hope just by mentioning a few of them, you start to get an idea as to what its like to learn to live with a disability.

What do you mean there is no cure?

It feels like someone is twisting my ankle, stabbing inside my knee and suffering from extreme sunburn on my entire leg. Now imagine being told there is no known cure. 

Complex Regional Pain Syndrome (also known as RSD) is regarded by many as the most painful condition, registering 46/50 on the McGill Pain Scale.  

Given this you would expect doctors to have figured out a treatment plan that cures the condition. But sadly you are very wrong, doctors still haven't found a cure. This is extremely frustrating for sufferers as there is no clear way out or obvious return to how life was before the condition struck.

Ok, so there is no cure but, surely they must have a standard treatment plan that reduces symptoms and lowers the pain levels.  The answer to that is no. There are treatments but none of them are guaranteed to work and often use drugs that you wouldn't associate with chronic pain.

I've been through all of the major treatments available to me including ketamine infusions, spinal blocks and different medications since my diagnosis in late 2014. As none of these treatments have kept my symptoms under control for any significant length of time, I and many others are now reliant on the very small studies that are being done with no guarantee of it helping, or success rate. This uncertainty is no good with a condition such as CRPS (complex regional pain syndrome) as it can be made worse by anxiety and stress.   Not only that putting yourself through treatments which require sedation and long term medications have risks  and nasty side effects.

Sometimes I want to give up and not put myself through it as there are no promises of treatment helping but if I don't try, then I may never get relief. People kept asking why I was in hospital for treatment on my birthday, well with the condition as it is, I had no choice, I was desperate for some relief.  It is only until you experience it will you truly understand why I agree to treatment, but I hope you get some idea from this post. 

One Month On...

One month ago, I walked into hospital to have a ketamine infusion to try and lower my base pain levels down as my CRPS kept flaring up. The intention was that I would walk out of hospital with lower base pain levels and return to university the next day. Unfortunately at some point during the procedure my brain decided that my leg needed protecting and turned my leg off, leaving me with no function and in more pain than I was in before. So instead I came out of hospital on crutches.

The following morning my consultant organised an emergency appointment with a lead neurologist to check that nothing else was going on except for my CRPS. The neurologist reassured me that nothing obvious was going on, except that my CRPS had deteriorated post the infusion and that my leg would come back to life at some point. I then went through a couple of weeks being on very strong pain killers and still in a lot of pain. I didn't think it  could get much worse, but then it did, my CRPS spread all the way down my leg to my foot, it felt like I had severe sun burn all the way down my leg, along with a twisted ankle and stabbing pain in my knee, it was constant with pain spikes.

Throughout the weeks that followed, I spent a lot of time at physio and at the doctors with all of them trying to find a way forward for me. I knew there was a long road ahead, which would be full of ups and downs and I would have to put in all my energy into staying positive and give myself the best possible chance of a recovery.  

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One month on yes I'm still on crutches, still have little function in my leg and still in pain. But the fact of the matter is, I got through a month of it, which I didn't think I could at the time.  Yes there were days in the last month where I wanted to give up but somehow I carried on going. Despite all of the difficult, negative things I have had to deal with there are some positives. The biggest positive is that it has proven that I am stronger than I think I was and, that I can get through the harder times. Yes I would rather be at university, but by taking the time to get my condition under control I will be able to enjoy university more when I go back.

There will be more times in the future where its hard to cope and feel like I can't deal with it any longer. But even though I cannot jump the hurdle at the time, does not mean I will not in the future. 

I hope this has given a little insight into some of the battles faced by living with CRPS. But importantly just remember this:

"you're braver than you believe, you are stronger than you seem and smarter than you think." (Winnie the Pooh)

Rare Disease Day Awareness

If I say to someone I've got CRPS, I can almost guarantee that the response will be something a long the lines of, what is that?  

Imagine saying that to a doctor and getting the same response and every time having to explain yourself. It gets a bit tiring and can sometimes make you feel quite negative.

Which is why I want to do something positive and try and change that response.

I was lucky and my symptoms were picked up quickly and all other conditions ruled out efficiently. But this isn't the case for many and needs to be changed, so that people can access treatments they need to reduce the pain and possibly prevent long-term or permanent disability.

The medical world may not know the condition in enough detail or have a cure, but that doesn't mean that it shouldn't be a recognised condition.

Please take a look at the poster above, its all there. If someone says they suffer from CRPS just think about those symptoms, they may be smiling and happy at the time but this is what they have to put up with everyday.  Ask them how their week has been, show a bit of interest in their condition.

Just remember it may be invisible, but it doesn't mean its not there.

Pacing

Spoon Theory (Christine Miserandino: 2003) is a metaphor used to explain how much energy those with disabilities have to do everyday tasks, with each spoon representing a unit of energy. Each day is different as my energy levels differ depending on my pain levels and therefore I have a different number of spoons available. Everyday tasks plus those that are required to keep my  CRPS under control, for example physio, have an allocated number of spoons. If I run out of spoons for that day then I have run out of energy and need to rest.

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A couple of weeks ago I had a ketamine (yes that is horse tranquilliser) infusion in hospital to try and bring my baseline pain levels down. Unfortunately it did the complete opposite and made everything worse and I currently have no function at all in my leg along with higher pain levels. This has made my mobility (temporarily we hope) more impaired, using crutches and wheelchair to get around. As a result increasing the amount of energy needed to do basic tasks and the number of spoons needed to do them, with a limited supply of spoons (energy) available.  

However this led to me missing two weeks of university and I wanted to go back. Knowing I would be dependent on a lot of help to get around campus. When I got there, I had meetings with staff at the university and found out what help was available to me.  It was clear that I could come back to university although it would be highly challenging emotionally and physically. There were other options available to me such as taking a year out and returning next January and continuing from where I left off. 

I had a very difficult decision to make, with positives and negatives of all of them. The question I had to ask myself was:

Do I currently have enough spoons (energy) to deal with university, and the current emotional and physical stresses of dealing with my CRPS?

The answer: No.

So after weighing up the options and spending the day at university, I decided to take a year out. This was an extremely difficult with my head saying take a year out, and my heart saying stay at university.  

I hope to make the most of the time I have got to sort my leg out, so I can return to university in a much better condition!

About

Complex Regional Pain Syndrome (CRPS) is a chronic pain condition characterised by pain that is greater and lasts a lot longer than would be expected given the original injury. Alongside this the skin in and around the effected area may become  highly sensitised, meaning the slightest touch, can lead to pain. 

In my case CRPS affects my right leg and was caused by a sports injury. If it was not for the determination of the doctor who was dealing with my injury in 2014, I would probably not have a diagnosis. I was lucky, a lot of people go years without diagnosis as the condition is not recognised by many. Early recognition and treatment is crucial for this condition. There are not that many recognised treatments available for CRPS and there is no known cure. Which leads me to my first and main reason for this blog, to raise awareness of the condition. I hope to do this through talking about the ups and downs of living with CRPS, what works and what doesn't.