CRPS Diagnosis and Acceptance

LWhen first getting diagnosed with CRPS many thoughts may go through your mind. Primarily for me this was 'what does that mean?'. Then thoughts may turn to the future and if this will ever get better or go away. I know when I was first diagnosed, I was told 'don't worry we can sort it out' but 3 years on I now know that that's pretty much a lie. CRPS is very hard to treat effectively, but if you are diagnosed in the first 3 months there is a higher chance of remission. But there are no guarantees. When you first get a diagnosis, you often wonder what it means fro your future and the truth is CRPS affects everybody differently and so no body can really tell you.

Acceptance is a massive part after you are told you have CRPS, it is a process that takes time. I don't think I have fully accepted what has happened yet but I think I am a lot closer than I was earlier this year. There are 5 stages to acceptance:

1. Denial - the first stage is denial. This means that you are denying that your life has changed/been affected but CRPS. A common thought I had was 'I can still carry on despite my condition'. There is no set amount of time that you could be in denial, it varies from person to person. As long as you allow yourself to have thoughts and feelings you will always deny your condition. 

2. Anger - the second stage is anger. You will feel angry, maybe towards yourself, family, friends or maybe the doctor who diagnosed you. You may try and find someone to blame or wonder why this has happened to you. This stage is very common and a normal part of acceptance but it is also important not to stay in this stage for too long because this can cause stress, depression, bitterness or isolation. You may find that you snap mat people when you don't mean it and when you normally wouldn't. I found this stage hard because I would get anger with my family and lose my temper when I never used to be like that before. 

3. Bargaining - the third stage is bargaining. This is where you may make a deal or trade with your elf or 'God' that if you do something good the your CRPS will go into remission or your pain reduced. This is you trying to find a way back to your old life before you were diagnosed with CRPS. None of these thoughts will ever materialise as there is currently no cure for CRPS.

4. Depression - the fourth stage is depression. At this point in the acceptance process you have realised your CRPS will not go away. You have chronic pain/ CRPS for the rest of your life, during this time symptoms may vary greatly but it will always be there. People tend to stay in this stage the longest because it is the most difficult to get through. You may experience feelings of sadness, loss, desperation, anxiety, isolation or vulnerability. People in this stage tend to withdraw as they see no point in doing things, living, seeing or talking to friends, family or loved ones. No joy or love of life can be found for people going through this stage and no way out can be found, it will seem to last forever but you will get through it. Depression totally consumes you and your life, it may seem like you can talk to no one but if you slip deeper and deeper into depression or experience suicidal thoughts or intentions that you seek medical attention right away. It is not uncommon for people with CRPS to experience these feelings in fact many sufferers do. When you are diagnosed with CRPS and you enter this depression stage you are often grieving for the loss of your 'old life' and the loss of all the things you used to enjoy. You may feel tearful and cry and sometimes not even know why, I know I did but this is all part of the acceptance process. You have to appreciate that you are bound to have bad days as well as good ones because it is not easy. To get through this process it takes a bit of time and patience for you. At around this time it helps to talk to other CRPS sufferers on Facebook groups. I found the 'CRPS UK- living with pain' group, that is run by CRPS UK for sufferers, a life saver, it was so brilliant to talk to so many amazing people with experience and it is a brilliant to post your problems and worries privately and get advice from other people. 

5. Acceptance! - the final stage of the process is acceptance. It is at this point that you begin to realise that you have a limit to what you are able to do now in your 'new life'. The aim of this is to find acceptance of your CRPS. You have now found that you have accepted your CRPS into your life and it is a part of you that will remain th you for the rest of your life. It does not mean your life is over and that you have to give everything upon give up looking for different treatments or a cure because of the chronic pain but you have realised the reality of it. Your new life, since your CRPS, will be different and the way you do things will be different to how you used to but this is ok, and all part of the process. You will begin to heal emotionally an mentally once you understood that that this is your new path yah at you will follow. By incorporating your CRPS into the things that you do will help you heal and start to take control of your life instead or your condition continuing to take it over. 

I found acceptance an incredibly hard process and it took me to some very dark days, but I got through it. I would say now, 3 years since my CRPS was trigger, I am close to accepting what has happening to me and how it is likely to affect me in the future. I'm not there yet, I still have some things to accept but I will get there, and so will you.

Never give up on hope!!!!!!

The Invisible Parts of CRPS!

The I'm sorry it's been a while since my last post, been having a bit of a hard time lately. Somehow I got an abscess on my foot right near the ulcer and it became infected which made me feel really unwell. which meant a weeks stay in hospital for me 👎🏻. Still struggling with this but the blog must go on. 

I've had a lot of time to think recently, which is sometimes a good thing and sometimes bad. I thought it. Would be good to blog about the 'invisible' part of CRPS. The bits people don't see, the parts when you feel like falling apart, the struggles we face everyday with a smile on our faces, the mask that hides a thousand tears. People can be extremely quick to judge, just because you may 'look fine' that does not mean a thing. 

PAIN! 💉

The most obvious invisible symptom of CRPS is the pain that we feel relentlessly, 24 hours a day, 7 days a week. Some people don't believe me when I say the pain is constant, it does not go away- but it's true. People describe the pain they feel differently but the common thing is the burning pain that is described, this may be an extremely hot burning sensation or a freezing cold sensation. For me, over time it has changed, when my CRPS was first triggered I felt a burning hot feeling but gradually over time this has changed to an ice burning feeling. They say this is partly because of the effect the nerves have had on the blood vessels and blood supply to my foot, it is now compromised. As well as the burning feeling I was describe my pain as a sharp stabbing pain and a shooting pain that goes from my toes to my thigh. Pain in itself is a symptom that greatly affects the mobility of patients and their ability to carry out 'standard' everyday tasks. You really could never imagine the pain until you have experienced it. After a while, we learn to try and mask our pain. We smile on the outside when it feels like our bodies are in self destruct mode. It is hard to mask the pain but it has to be done to try and progress with life and have some kind of normality back. 

Sensitivity. 😰

Another invisible symptom that is linked to the pain felt by sufferers is sensitivity. This means the even the slightest touch can cause extreme, uncontrollable pain. The sensitivity is a hard thing to conquer, some people manage to use desensitisation techniques to teach themselves to tolerate it but for other sufferers, this just isn't possible. The 'fear' of the affected limb getting touched lead many sufferers to try and guard their affected limb from anything that may touch. Unfortunately I fall into the category of people to try to protect their limb from anything knocking it because the pain is unbelievable. At times I find it hard to enjoy certain things because I am so worried about people knocking my leg. For me the sensitivity doesn't end with only people knocking my leg but for example if the wind blows strongly it's hurts. If it is raining heavily, the rain drops hurt. Vibrations from loud noises hurt. And when the weather turns cold, it causes me increased pain. 

Emotions. 😕

Living in chronic pain also impact on your emotions as it is exhausting trying to hide the pain you are in constantly.  Many people who live with chronic pain or CRPS experience depression at some point, this is often part of acceptance and the realisation that you can no longer do what you were once able to. I also have anxiety and PTSD (Post traumatic stress disorder) in relation to my CRPS and the experiences I've had since my CRPS was triggered. At times it is hard but my boyfriend, family and friends make a big difference to my mood. Since Dan and I have been together my anxiety has improved a lot, I think it's because I feel safe when we go out together and now often I never think of the things I used to worry about when I went out. For people with CRPS it is often recommended you have a multi-disciplinary team including: anaesthetists, pain management consultants, physiotherapists and psychologists to work together on all of the problems having an invisible illness causes. Sometimes people won't see psychologists because they're worried people will think they are mad or crazy but that's not the point. At first I was sceptical but now I realise that they're help is very valuable. For me they've helped me to learn to stay calm during pain flares, helped reduce my PTSD symptoms and anxiety, they've also helped me realise that I'm still the same person I was before and how to accept what I can and cannot do right now. I really think i would be in a lot worse position now if I hadn't accepted they're help. 

With CRPS only occasinally are they visible symptoms such as colour changes to the skin, changes to nails, ulceration, dry or shiny thin skin but even these are hard to spot, you'd have to be looking pretty closely. The problem is many people can be too quick to judge that you may 'look fine' but actually they will never know what we go through every day. So next time you try and judge a book by its cover, just think that not all disabilities are so obvious and you can never guess what's happening on the inside. 

The Troubles of Being Young and Disabled

I've been trying to think what I should write about next, that's when Dan had a good idea. What it is like to be young and have a disability. Since my CRPS got worse and I started to develop ulcers, my mobility has also got worse, meaning I am unable to put pressure through my right leg which has been the case for the last 6 months. At first it was hard to try and adapt, and it still is but I feel like I'm getting there, my balance is incredible now. I consider myself lucky, I had saved some money and I managed to buy an automatic car which my parents paid to have adapted for me. I don't know where I would be without my car (Ralph) now, after 3 months of not being able to drive my old car, it gave me some freedom back. All of my friends and family were really supportive in me trying to live with my disability and accepting my limitations, however, society can be very cruel to young disabled people. Don't get me wrong some of the general public are very nice but others can be very rude and spiteful for no obvious reason. So I thought I'd share some of my mine and Dan's experiences to make you realise you are not alone:

1. Disabled bays: 

There's a clue I the name really they are for disabled people who hold a blue badge irrespective of their age. I know for sure I have had some terrible experiences of disabled bays within the last 6 months so I'm sure many other people have as well.

I was going to the supermarket one day and so I went to park in the disabled bays because I have a blue badge. Before I even started to get out of my car an old man was stood there shaking his fist at me. Normally I use my chair when I go into the supermarket but this time I only needed a couple of things so I used my crutches. I started to get out of the car and the man starts shouting about 'how I should move my car because these spaces are only for disabled people.' I ignored him at the time until he said 'look at you' and that I was faking my disability, I turned round and said 'so then why are you parked here, you are old not disabled.' After that I heard him mumbling but I ignored it and just went to get my shopping. I was innocent, all I wanted to do was go to the supermarket. Later on when I thought about it, it made me really frustrated because I just wanted to mind my own business.

When I've parked in disabled bays and got out, I have been 'reminded' several times that I'm parked there. Dan has even had people knock on the window saying 'excuse me this is a disabled space'.  This is pretty common for CRPS sufferers, as primarily it is an invisible disability however right now mine is pretty visible, in fact it's bright pink and people still feel the need to intervene. 

2. 'How can you drive that car?' 

This is a question I hear far too much of. My car is adapted with a left foot accelerator so I can drive it with my left foot, which was hard to adapt to at first but now I couldn't imagine it any other way. Dan's car is adapted with hand controls, so he can accelerate and brake using his hands. It's pretty amazing the kinds of adaptations that you can have put in your car, yet unless it affects you and you are able bodied you've probably never thought about it. 

Not that long ago, I went to put petrol in my car and then went into the kiosk to pay. My leg was in plaster and I was on my crutches and the woman behind the till started asking questions. 'Is that your car' 'are you the driver' 'you're not allowed to drive like that'. I said yes and it is adapted so I can drive it with my left leg. 'Surely that's not legal'. Actually it is perfectly legal. The woman even threatened to report me to the DVLA, if she saw me again. It's so frustrating and tiring having to explain yourself everywhere you go when you just want to get on with your day. 

But just because you have disability doesn't mean you can't drive, there are so many adaptions you can get nearly anyone driving. 

3. Wheelchairs

When Dan and I go out it always takes us a while to get our chairs out the car and to put them back in. I find it frustrating that it takes so long but then we just have to be patient and so do other people. We've had people just staring at us putting our stuff in the car, for no reason just because they are nosey.

The most frustrating thing for us is when we go out in our racing chairs and parents with young children say 'look at that bike' and the little kids correct them saying its a wheelchair. It's like they are afraid to tell them it is a chair. Personally, I'd rather them say it's a wheelchair than send mixed messages to children because there is a difference and being honest doesn't offend us, we are well aware they are wheelchairs and not bikes. 

When the weather in nice Dan and I go training around the quay, we have so many people of all ages just sit and stare at us, we are trying to better ourselves and we get people pointing and staring. I think this is because para sports are massively under-advertised and its probably the first time many people have seen racing chairs or hand bikes but even so it makes me feel like I'm the odd one out when really I'm not everyone is different. 

Over the last 6 months I have had so many negative experiences like these by members of the public. We don't want wrapping in bubble wrap either, we just want to be able to get on with our own lives like any other person would. Obviously these are just the bad experiences, I have had positive experiences as well when people offer to help if they see I am struggling. I wanted to share these stories so young disabled people don't feel isolated and alone like it is just them, it isn't, lots of people have these kind of problems.

Stay strong! :) 

Isn't it funny how things change.

If I had imagined my future when I was 16 years old, I definitely would not have imagined I would be in the position I am now as a 19 year old. Back then I would've imagined myself living in London and working at all the type of amazing places I did. I had big dreams, the only career I'd ever wanted to do was to be a chef. For a few years I managed to hide my pain under a mask in front of people. To me it didn't matter that much because I was still doing what I had always wanted to do and that. Is the thing that kept me going. I miss it terribly. I wish I was still there with all my friends. But then in August 2014 a small black dot appeared on my right, CRPS affected limb. At first I thought nothing of it but then it was the thing that changed everything. After only a few days, the black dot started to collapse in on itself. It turned into a small hole, which then grew deeper and wider. I was unable to go  to work, I still lived in London but the thing that made me want to carry on had gone. I was really upset to say the least. From October - December I spent my time in hospital having skin grafts and reconstruction on my foot, it was a horrible and terrifying time. But finally on the 18th Decmeber I was discharged from hospital, my foot was healing and I was able to go home for Xmas. Everybody had doubts about me returning to college including me but I was determined and nothing would stop me, even though the term started only three weeks after I had re-learned to walk and left hospital. I was so happy to be back at college with all my friends, I felt like I had made it and the worse was over, things just kept getting better and better. Then only a few weeks before half term, another dot appeared on my foot. At first I tried to ignore it and pretend it wasn't happening, but then the same thing happened and it started to collapse inward again, I could no longer ignore it. I had to try and explain what was happening, even though i wasn't really sure myself. Again, it worsened pretty quickly. I'm so grateful that the college were so understanding and together, along with my doctors we made the decision I should leave after half term and try and get better for the following January.

I left college on the 22nd February, I had to return to my parents house. In all honesty, it really destroyed me, I felt like such a massive failure. Things kept going from bad to worse, on the 6th March my leg was put in a plaster cast to try and stop the twitching ripping the ulcer apart. Now, 37 weeks later I am sitting here with a plaster cast in my leg. But that is the only similarity between now and then. After the cast was put on my depression spiralled almost out of control. I was at the point I just wanted to give up. I was exhausted, emotionally and physically. But luckily for me ther was a way out. Before my CRPS I had done karate for 8 years and I had a 1st dan (black belt). I hadn't taken part in any sport for the last 3 years but during the really dark times, I felt I needed to. I looked at many para-sports. But I wasn't really sure about them, I didn't know anything about it really. I tried fencing but it wasn't for me. Then I found a wheelchair racing group about 50 minutes from where I live. I went along not really knowing what to expect, I saw how fast some people could go. It also happens to be the place I met my boyfriend, Dan. Since then everything has changed for the better.  I am no longer depressed, in fact quite the opposite! I apply the same principles of karate and my ambitions of being a chef to my wheelchair racing. I want to be the best. I love being with Dan, we be on so well and it's amazing we understand each other's problems. Now when I train, it takes my mind off all the rubbish that has gone on it the past three years, it gives me hope for the future. Strangely training is a brilliant way of getting rid of anger or frustration. By far my favourite thing is the post training buzz, when I finish training I feel amazing and so happy!

I guess what I'm trying to say is, just because one thing doesn't work out it doesn't mean that's it. At the time, I really thought it was but Dan has taught me it isn't and that there is more out there than you could ever imagine. Never give up hope.

November is CRPS Awareness Month!

You probably don't know that November is the international awareness month for CRPS. During this month, people are being urged to spread awareness more than ever. Many people wear orange during CRPS month as it is supposed to represent the burning pain felt by many sufferers. This year Dan and I, along with other sufferers took part in a 12 hour static cycle at Bath Univeristy's training village to raise money for CRPS UK. It felt great to be involved in such a big event even though I couldn't stay to the end because my leg started to swell inside the cast and I had to get up at 5am the next morning to go to the hospital in London.

More about CRPS:- 

Complex Regional Pain Syndrome (CRPS, also known as Reflex Sympathetic Dystrophy, RSD) is an uncommon condition first observed during the American civil war, then called Causalgia. CRPS is usually triggered by an injury or surgery but can occur spontaneously. CRPS is characterised by severe pain, swelling, temperature and colour changes and motor dysfunction. CRPS pain continues long after the original injury has healed. 

CRPS is poorly understood and a cause has not yet been found although there are some promising areas of research. It is generally agreed that the body produces a faulty response to an injury where normal inflammatory responses such as pain, swelling and temperature changes do not stop once the damage is repaired. This leads to a ‘feedback loop’ within the nervous system making the body more and more sensitive to pain. It is not known why some people get CRPS and others do not.

CRPS is difficult to treat but pain medications and physiotherapy are used to limit the effects of CRPS, often in conjunction with other therapies and treatments. More research
is needed to develop better medications and treatments for CRPS.

Complex Regional Pain Syndrome (CRPS) is a rare neurological disorder, which causes chronic pain that cannot be controlled and can affect all areas of the body but most commonly occurs in the limbs. It is a debilitating and disabling inflammatory condition that can be caused by minor injury (sprain), broken/fractured bones, surgery or can appear spontaneously without known cause. 

CRPS is believed to be the result of dysfunction in the central or peripheral nervous systems where the signals between the affected limb or body part and the brain are misinterpreted resulting in the following:

• “burning” pain (can be hot or cold feeling)
• hypersensitivity of the skin.
• changes in skin temperature: warmer or cooler compared to the opposite extremity.
• changes in skin colour: often blotchy, purple, pale, or red.
• changes in skin texture: shiny and thin, and sometimes excessively sweaty.
• changes in nail and hair growth patterns.
• swelling and stiffness in affected joints.
• motor disability, with decreased ability to move the affected body part.

CRPS can strike anyone at any age and affects both men and women, but statistics show it is more common in young women than any other category. 

Currently in the UK, there is no funded research into CRPS. This means that we are reliant on America and Australia for breakthroughs in science. CRPS is widely misunderstood in both in everyday and amongst professionals themselves. There is currently no cure for this condition, however we are ever hopeful.

Information from: www.crps-uk.org

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:                           Complex Regional Pain Syndrome (CRPS) 

2. I was diagnosed with it in the year:           November 2012

3. But I had symptoms since:                        October 2012

4. The biggest adjustment I’ve had to make is: Everything - I have had to change so many things,  sometimes I view it as a bad thing however, it has given me opportunities I never thought I would have.

5. Most people assume:            That I have broken my leg because it is currently in a plaster cast.

6. The hardest part about mornings are:  Getting dressed, seems to take forever because I have to make sure nothing knocks my foot.

7. My favorite medical TV show is: I like Holby City and Casualty but I always have to look away at the gruesome parts because I'm really squeamish, I just like the story line.

8. A gadget I couldn’t live without is.           My phone, I use it constantly to talk to friends and communicate with the world.                                                 

9. The hardest part about nights are:    When you have bad pain in the night that interrupts your sleep or your mind is too busy thinking about everything.                                          

10. Each day I take between 30-40 pills & vitamins. Mainly for pain relief.  (No comments, please). 

11. Regarding alternative treatments I: am suspicious of treatments that have no scientific proof, however I'm willing to try everything to help with this condition.                                    

12. If I had to choose between an invisible illness or visible I would choose:  I think I would prefer to have a visible illness because it makes it easier for other people to understand. Though I suppose people with visible illnesses might prefer for it to be invisible. 

13. Regarding working and career: I was working in central London at a 5* hotel however, I have had to put that on pause because currently I am not well enough to work in a kitchen. I still work part time just to get me out of the house.

14. People would be surprised to know: Since being diagnosed with CRPS, my foot has started to ulcerate for the last 14 months, which increased my pain and meant that I am unable to walk on my foot any more. I have had so many problems with the ulceration. 

15. The hardest thing to accept about my new reality has been: Not being able to work in the kitchens and live in London independently.

16. Something I never thought I could do with my illness that I did was: I never thought that I would be able to compete in sport again, but I have surprised myself and become in love with wheelchair racing and handcycling, whenever I train I always feel amazing, it has completely changed me.

17. The commercials about my illness:      There are none - most people have never even heard of it.

18. Something I really miss doing since I was diagnosed is: I really miss the stress and the pressure of working in a professional kitchen and also I miss doing karate, which I did for 8 years before getting diagnosed.

19. It was really hard to have to give up: My independence living in London and relying only upon myself to get things done.

20. A new hobby I have taken up since my diagnosis is:  Handcycling and wheelchair racing is my new passion. It makes me so happy and I'm outstanded by the amount of support I've recieved. It has really helped me with every aspect of my life plus, I met my boyfriend training so it holds a lot of happy memories for me. 

21. If I could have one day of feeling normal again I would: Do everything I possibly good, I have learnt that you shouldn't hold back on doing things because you just don't know what is just around the corner for you.

22. My illness has taught me:  Just because the past didn't turn out how you wanted it to, doesn't mean the future can be better than you ever imagined. 

23. Want to know a secret? One thing people say that gets under my skin is: When people say they understand. Most people have no idea! How did you break your leg? You look absolutely fine? You look tired, have you been out partying? You look miserable. The list goes on and on. 

24. But I love it when people: Can see that I am struggling and offer a hand, and then respect my answer. Treat me like every one else. Try to listen and understand.

25. My favorite motto, scripture, quote that gets me through tough times is:       There are many quotes that I admire but my current favourite: Just because the past didn't turn out how you wanted it to, doesn't mean the future can be better than you ever imagined. 

26. When someone is diagnosed I’d like to tell them:                                                That CRPS doesn't have to rule your life. There is still hope and you can still achieved. There are adjustments that might have to be made but if you give up, there is no hope. Winners never quit and quitters never win. 

27. Something that has surprised me about living with an invisible illness is:     It doesn't all have to be doom and gloom, there are always things you can do that will make you happy and content, you just have to go out and find them. Even if it is not what you expected. 

28. The nicest thing someone did for me when I wasn’t feeling well was: When my boyfriend can tell I'm in pain, even without me saying anything and he tries to comfort me and get anything I need for me. 

29. I’m involved with Invisible Illness Week because: I want to help raise awareness or invisible illnesses  and CRPS in particular because it can happen to anyone at any time.

30. The fact that you read this list makes me feel:    Overwhelmed with the amount of support that I have recieved from everyone. So, thank you!! Xx

Intro

Hi! My name is Hannah and this is my boyfriend Dan. I was diagnosed with CRPS (Complex Regional Pain Syndrome) almost 3 years ago to the day. It has changed my life beyond recognition. I was an active, motivated, determined person and I had my mind set on only one thing, being a successful chef. All was well for a while and I managed to carry on working and living in London until I started getting ulcers on my affected right foot. The ulcers have changed everything for me, I was no longer able to pretend that everything was alright. I had to stop working in the kitchens which destroyed me as it was my one massive passion. I hope one day I will graduate and be able to return but right now I realise this is not possible. 

I decided to start a blog to help other sufferers, particularly those who are a similar age to myself, my friends and family understand better what life is like when you have CRPS. I understand how isolating and lonely it can be to be diagnosed with CRPS, especially when you are young and all of your friends are busy running around doing things and you're not able to keep up. But people need to realise that it doesn't have to control your life and there is always something you can do and succeed at. You just have to find it. I found this quote and for me it is absolutely perfect: 'Just because the past didn't turn out how you wanted it to, doesn't mean your future can't be better than you ever imagined.' Since I've started wheelchair racing and hand-cycling and since meeting Dan, my outlook has changed a lot. I now feel so happy and content even though I would never have imagined I would be in the position I am now. I am so grateful for all the support I have received in the past few months and it really has changed everything for me. Before this I was really struggling, I felt as though I had let people down or not lived up to expectations, even ones I set for myself but now I feel as though I have a purpose again. Whenever we train, I feel so good afterwards, I feel proud of what I have achieved so far and have big goals for the future. I want to give hope to other sufferers, so people realise that even though they may be really struggling now, it doesn't always have to be like that. Don't let CRPS rule you and destroy your life, try and turn it around into something positive and you might just be surprised, I certainly was! 

Thank you for reading! More to follow soon! xx