Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Eva’s CRPS Story

2019-07-04

Eva’s CRPS Story

This month our CRPS patient story has been written by Eva who currently lives in Cyprus.

Eva has lived with Complex Regional Pain Syndrome for the last eight (8) months and she has decided to tell her CRPS story. This is Eva’s CRPS story…

Hi,

My name is Eva. I’m from Sweden but living in Cyprus the last 9 years. I met The love of my life in Cyprus on a holiday. We are married since 2012 and everything just was perfect!

I got my CRPS diagnosis about 8 months ago but I have had it for over 2 years now. It’s in my left leg, from the knee and all the way to the end of my toes.

When I got the diagnosis, I was speechless. I hadn’t heard about it before, like I’ve come to understand with time, its so many people including doctors that don’t know about it. I have been reading about it since I got the diagnosis, a lot, trying to understand what it is and do. I think honestly that I know more about it than my neurologist does, sorry to say.

When I got the diagnosis, I was speechless. I hadn’t heard about it before

Eva – CRPS Patient

Now, my situation is even more complicated.

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I have had juvenile arthritis since I was under 1 year old, I had my first operation when I was only 18 months old in my right ankle. The professor who did the surgery said to my mother after that “This is very strange, normally it’s old people who have it”. And he just left it at that.  My mother didn’t get any more help or answers and I didn’t get the rheumatism diagnosis until I was 12 years old.

I am today 51 years old. I’ve lived my whole life with it, the pain and all that can happen when you have it. Since then, I have had 3 astroscopic surgeries done in both jaws, to clean up inside and be able to open my mouth “normal”. After those surgeries I have had an open surgery done on both jaws, at the same time! I was in so much pain after and couldn’t lift my eyebrows due to that the nerves got tired, temporary paralyzed from the surgery. It took 3 months before it luckily started to turn and today I have only a slight lower right side. I can live with that. My jaws are destroyed. They talked about to take 2 pieces of my ribs and make new joints of them. That’s when I got explained from the doctors that the ribs are the only bone that grows back, don’t ask me how. But they came to conclusion after talking about it for 4 months that it wasn’t possible. My jaw would just break down because the arthritis is in my bone and in my immune system. It is an immune system disease.

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Then I got diagnosed secondary Sjogrens syndrome at 20-something years. It’s a common disease for juvenile arthritis people to get. If you want to know about it, just google it, it’s too much to explain and write. But it affects the tear fluid, mouth is dry and more.

I had to do a hysterectomy when I was 36 because I had 2 myomas growing on the outside of the uteri and growing fast. Did the surgery but they left the ovaries for hormone reasons, and it’s ok, I can live with that. I had a daughter at aged 25 years, so it was ok.

5 years ago, in February, they found a tumor on my right ovary and the MRI said it was aggressive, so the surgery was done very fast after the MRI and took almost 5 hours. Luckily it turned out to be benign. And because arthritis is an immune system disease, I’m more sensitive for infections so antibiotics is very important after surgeries and I got it as it should be.

Learn about Eva's CRPS Story via Burning Nights CRPS Support
Learn about Eva’s CRPS Story via Burning Nights CRPS Support

3 months after the surgery I couldn’t go to the toilet, I was constipated they thought. Nope, it showed on X ray and MRI that my colon had collapsed low down, so it was almost completely blocked. New 4 hours surgery open in the same as earlier was done and they fixed it. But this time the doctor refused to give me antibiotics after. I got antibiotics for only 2 and a half days. Long story short, I got a massive infection on my whole left side of the stomach and came in to the emergency 1 week after the surgery. I had then lost 18 kilos in weight since February and weighed 38 kilos. I looked anorectic, just skin and bone and couldn’t even walk. You can see how I looked before and after on the photos. Since then they made a massive mistake and gave me antibiotics, which made me sleep on the couch half sitting and I can only turn to my left side. I get dizzy from laying flat and my colon gets squeezed and it gets painful. I have scar tissue in the whole stomach (more or less) because of the severe infection and the time it took to get rid of it. It took about 4 months.

But I was wrong …..

I have lost the signal to go to the toilet. I must take minimum 2 bags of laxative, Molaxsol, per day to keep my stomach going. I can’t eat normal either, special diet so it works for the stomach. I thought my life couldn’t get any worse.

I see, feel and think about life completely different now then before CRPS. I have asked myself so many times now, Why should I have to live with all this pain, suffering and struggle everyday only to make other people happy? Is it fair to me? In my ears it sounds, and is, pure torture for me. I don’t have anyone to talk to about how I really feel, how different I am now from before. No one understands my situation. And to be honest, how many people have all this problems and diseases that I have??

TO THE TOP


I haven’t been able to sleep next to my husband in a normal bed for 5 years…I see my husband suffering every day, he can’t see me when I have so much pain at the same time. And we have lost so much happiness and joy that we had, could have….now we can’t….. If I could turn back time….I wish I could change all that went wrong from the doctors fault…but I cant.

I want my life back….but I cant get it back. I want me back, the happy, strong, laughing and funny woman …..but she is gone, dead. CRPS literally destroyed everything I had manage to learn to live with and gone through. After all fighting this is the thanks I get? How am I supposed to be able to live like this, knowing it’ll only gets worse than it already has?

I don’t know what to do or say anymore……I am lost…in every way possible….

Eva

Thank You to Eva for sharing her CRPS story with us. We must remind anyone reading this that not every CRPS patient has the same symptoms, nor the same problems and progression of the condition. If you feel any of your symptoms are worsening or changing in any way, we recommend you contact your doctor or CRPS specialist and let them know of any changes to your condition.

Would you like to share your Complex Regional Pain Syndrome story? If so visit our Share Your CRPS Story article for more information.

P.S. Don’t forget to check out our 18 Tips Preparing You For Your Pain Appointment article.

Don’t Forget To Have A Read Of Some Of Our Other CRPS personal stories …

Written: 13/05/2019

Last Updated: 03/07/2019

About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!

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