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.