Complex Regional Pain Syndrome (CRPS) often happens after an injury or operation; however, sometimes the pain has no apparent reason. CPRS is long term excruciating painful condition that usually affects limbs; but, in a few cases, it has been found as internal as well. It typically starts in one part of a limb and can spread to the rest of the body; an old name of the condition is Reflex Sympathetic Dystrophy (RSD).
CRPS is rated 42/50 on The McGill Pain Index, which is, therefore, higher than amputation of a toe or finger without antithetic which 40/50 and fibromyalgia which is ranked at 30/50 this condition is also highly painful.
CRPS feels like the affected area(s) is on fire or feels like ice, my CRPS feels as my affected areas are burning in an ice bath during the winter, if there is a wind or if its rain and weather is warm, they burn, like a fire that cannot be put out. It also feels rats are climbing up the areas and I have itchy skin rashes. If I itch the area, it causes extreme pain, so it is hard to relive the tingling.
CRPS is more than the extreme pain and the changes your life, due to the illness, I can blackout daily and pass out regular. Just a light touch, a blow of wind or change of air pressure often trigger pain that isn't matched with the action. I also have a very low immune system, and I have to deal with compaction from medication and lack of sleep due to the pain.
My story started in September 2017, when I hurt my ankle. I went to my local A&E, and they found I had no broken bones, but due to the swelling, they give me an aircast walking boot and sent a referral for the fracture clinic for a follow up in around 3 weeks.
They believed in 3 weeks it should have started to heal. However, the pain was getting worst, and at my appointment, I was still unable to move my ankle or toes. The doctor sent me for an MRI, but this came back clear. So, they sent me to physio.
The physio was confused as my foot was not moving or reacting the way she expected for a bad sprain.
So, they asked my doctor for a CT scan. By now it around February, in the time waiting for the scan I was still working with the physio’s, and the pain was getting worst and worst. I was trying to do anything to take my mind of the pain, I had loads of rugby injuries over the years, and this felt different but could not understand why. I kept pushing myself in physio, as I was blaming myself that I have done something wrong.
On 7th March I got the results of the CT scan, and they found that my bones were wasting away. They had also spoken to another larger hospital in London with all my results and asked for some advice.
They told me I have Complex Regional Pain Syndrome, and I will have to see another doctor and physio at a London hospital, they then removed the aircast boot, at that point I was told I will have to hop, and use a wheelchair for long journeys. This meant I was signed off sick from work, I started to need extra help from family, friends and social care team including getting support put into the house.
This complexly shocked me. I had never heard of the condition, so I did some researched but being careful where I got my information from. I found the Facebook groups had the best support and talking to others with the condition, gave me the best knowledge. It took months to get the appointment for the London hospital. Once it came through, I was told I would need weekly physio, and there was still hope that I could live a pain-free life.
The physio started after a few weeks, the first physio session began very well, and I learnt a lot of meditation and some gradually some gentle movements, however, I was really struggling and felt sick with pain by the end but the thought of being pain free helped to get me through the long hour.
A week later they increased the difficulty, the pain was too intense, and I passed out. This happened in the next two seasons as well. During the third session, I was told physio is not suitable into I have had better control of the pain, so I was asked to be seen by another doctor so I could discuss a spinal cord stimulator (SCS). I waited months for the appointment, and my pain was getting worse and spreading up my leg, by the time I got an appointment the pain was in my whole left leg and most of my left arm.
I was then told I was not suitable as the SCS. As I was told, SCS is if you have pain in one limb. They said to me there was nothing else they could do, I was prescribed pregabalin, tramadol and paracetamol and then discharged. I felt I was given up on, I felt abounded, I know without physio the pain would get worst and I was stuck with a horrible disease.
Then 18 months after, I asked my doctor if I could see another pain team as by now I had CRPS in all four limb; unable to touch my feet on the floor or hold items in my hand, my back and neck was in terrible pain and my sleep was disturbed as the pain was so high. I want to ask if they could control the pain better or give me any other suggestions. At the appointment was given a prescription for a pain patch, and it does help a little. My typical pain levels are now around an 8 and have not ever been under 7, but a few days a week my pain is a 9. I have levels of 10 during the over the whole week this is when I black out or pass out.
Before all this happened I was living a perfect normal life, I was playing rugby for a good team; going to the gym and working in childcare. Along with studying, sport, fitness and coaching at university to help In a career change.
I also was weeks away from invited trials for a professional rugby team.
I enjoyed watching live rugby, going out with friends but playing rugby took alot of my time up, which I committed to. With work and studying fitting in when it could.
As a baby I was diagnosed with Noonans syndrome and Congenital pulmonary valve stenosis both had little effect on my life and I found ways to manage my struggles / symptoms.
As I got older I was diagnosed with dyslexia and dyspraxia and found things challenging but this was pick up at college, so I was left behind at school.
College is when I found the best of my education I made big improvement once I had the support put into place, there was talks for ADHD and autism but as I had many coping strategies (without knowing) I didn’t bother the doctors.
At school my pass grades were low and in college I got an A in Childcare. Things were looking good.
As I started having other health issues, the traits of my Autism and ADHD become 'worst' as all my routine and coping strategies were gone, I have a really good GP that refered me for a an assessment, in the report to confirm I have ADHD with autism traits and waiting for a report on Autism.
In the past few years I have had many more conditions confirmed some I have always had and not been confirmed but would of had anyway, such as ADHD, Autism, Ehlers–Danlos syndromes. Others which are likely be due to CRPS or the lifestyle which I know have.
The full list is:
Thoracic Scoliosis Feb 21
Hypothyroidism Dec 20
Functional Oropharyngeal Dysphagia Nov 20
Malnutrition Aug 20
Functional Neurological Disorder/ Conversion disorder March 20
Thoracic Scoliosis Feb 20
Hypermobility Oct 19
Irlen Syndrome Aug 19
ADHD June 19
Selective Mutism June 19
Hyperalgesia Syndrome June 19
Allodynia syndrome June 19
Chronic Tension Headache June 19
Chronic Widespread Pain Syndrome June 19
Central Sensitisation Syndrome June 19
Urinary Urge Incontinence Jan 19
Pernicious Anemia (B12) June 19
Gastro-Intestinal Dysfunction June 19
Dysphagia Feb 19
Chronic Constipation Feb 18
Complex regional pain syndrome (CRPS) / Reflex sympathetic dystrophy (RSD) Jan 18
Eczema Dec 17
Dyslexia Oct 17
Dyspraxia Oct 2017
Menorrhagia Sep 2016
Asthma Dec 2013
Hay fever Apr 01
Learning Difficulties 00
Congenital pulmonary valve stenosis 00
Noonan’s syndrome PTPN11 Feb 0
Autism (waiting assessment)
Can't find the dates:
Postural Orthostatic Tachycardia Syndrome - POTS
Ehlers–Danlos syndromes
Chronic Fatigue Syndrome / ME
Irritable Bowel Syndrome
Restless Leg Syndrome
Osteoporosis
Iron anaemia
However, I was not going to let these chronic illnesses beat me or change who I am. So, I deal with all my conditions practically. Firstly, each time my illness has spread/ developeds I have looked at what help do I need to daily life, and what help would I need to do an activity and how it would be possible.
This is easier said then done, and it took a long time time get to this stage. I have also had to make some accept that I can't do some stuff. Something no matter how much you put your mind to it, it's not going to happen! What I mean by that is with my current health, with the current technology (which I can access/afford) and the current situation/environment what is possible. That isn't saying it will never be possible, if 1 of the 3 factors change then it might be achievable in the future.
The problem is alot of people like to say anything is possible, just put your mind to it..... However there might be a person reading that, that have spent months, even years learning it's okay that you can't do everything.
I also alot of care and support with personal needs, due to the lack of movement in my hands and unable to use my legs as well as other difficulties
But at each hurdle, I have made an acceptance of fact what has happened! It's important to stick to facts and not opinions. From then found out what support or equipment that are available to make it easier or how to make things possible.
A wheelchair is 1 aid that no one wants to have, some people need a wheelchair, just to get out of bed and others need a wheelchair to go on days out, each reason is fully valid.
Why people often choose a wheelchair as a last resort, and often we avoid going out of the house is because the way we are treated. Often I'm not spoken to, they will talk directly to whoever I am with, even happens at medical appointments. If they do talk to me, they talk as I don't understand them, or they don't believe/listen to what I'm saying. Into who ever is with me interrupts and repeats what I say.
This is the first part, and I am currently working on the second part.
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