Michelle’s CRPS Journey

Our CRPS story this time is from a lovely lady from Manchester, UK who is 1 of the Burning Nights CRPS Support trustees. Michelles’ CRPS Journey began when she read in a doctor’s letter that she had suspected CRPS in 2014, however her CRPS journey may well have started a long time before then.

This is Michelle’s CRPS Journey as she tells it …

Finding Out I had CRPS was the Best Day of My Life!

I am Michelle. I am 28 years old and I do not remember a day without pain.Finding out I had CRPS was the best day of my life. Let me tell you about why.

At the age of 14 years old, I crossed the road outside my house and fell in a pot hole. It hurt but I could use the foot and with a help from a friend I carried on to school. I was fine, so I thought.

 

TO THE TOP

 

As the week progressed I could not weight bear. My mother took me to A & E. I was so annoyed that she took me as I missed baking a chocolate cake in class! At the hospital, an x-ray showed nothing wrong with me and a puzzled doctor and student doctors sent me home.

Michelle’s CRPS Journey | XRays showed nothing

I moved house after two (2) years from the fall, and my new doctors had lost my records. So I was sent for scans once again. I was so annoyed but my family hoped they may find something new.

Throughout the next eight (8) years I was passed from pillow to post. No one helped me; no one knew what was wrong with me. My foot was often swollen and sore. My leg was tense and felt tight. My foot was often cold. I was told I had bad circulation problems until that was ruled out too.

In 2010, I met a surgeon who had told me I had chipped a bone when I original fell. I cried at this news finally some answers. Yet at the next appointment the surgeon dismissed this too. Back to square one! I was then diagnosed with flat foot and a tight Achilles heel. He promised no miracles but did tell me the pain would be better, if I agreed to surgery.

In 2011, the surgeon operated. He inserted a titanium stent in my foot and lengthened my Achilles heel. Immediately after surgery, I felt better. I could straighten my foot and leg.

Michelle’s CRPS Journey-Surgery was required.

After three (3) months I went back to work. I still couldn’t walk upstairs but I was feeling much better. Within a couple of weeks, I could hardly walk. The pain was intense. I never felt anything like it! I started back on strong medication! My physiotherapist was unhappy and told me things wasn’t right and I should go back to my surgeon. I went back and he indicated that I went back to work too soon, and I just needed time. He referred me to a sport physiotherapist.

That was the last I saw of him. I received a letter saying the hospital that treated me had discharged me. I felt alone. Who was going to help me? I cried.

Pain was getting worse. After trips to A & E, no record of my surgery was on record. I felt like here I go again.

I had to go back to my GP, who sent me for scans once again and sent me to a new specialist.

Michelle’s CRPS Journey | Flaming burning pain

In the waiting room for the new specialist, a nurse came to me and said the new consultant refused to see me without an X ray.I had no idea why. My partner was confused too. What was going on?

In the meeting with the consultant, he told me ‘if my surgeon operated on his dog like he has done on me, he would have been arrested.’ I was confused. I was told there was nothing could be done for me. He advised me against further surgery.

In 2014, a decision was made to remove a stent that was inserted by the last surgeon. This new surgeon hoped it would help.

After receiving my notes at home in writing at the bottom it said ‘suspected CRPS’.What was CRPS? I dismissed it as I didn’t know what it was.

Throughout this time, I was having a bad time at work. I was being bullied by staff members and my boss. Apparently, I was faking the pain and was using it as excuse for my tiredness and poor concentration.

Michelle’s CRPS Journey | Michelle was being bullied at work

After a particular bad day at work, my partner rang me and told me he had researched CRPS. He explained doctors think it is in the sufferers head. I was furious!!! I screamed at him. I had colleagues telling me it is in my head and now was so my partner and my doctors. I didn’t want to go home. I rang my sister immediately and told her what he said. She explained, I more than likely didn’t let him finish (which I didn’t), and he was as desperate as I was to get answers.

Times were getting tougher! Pain seemed to increase! My anxiety increased. Life became not worth living. I did not try to kill myself but I certainly had the thoughts. How do I continue with a pain that no one seems to know how to treat?!

At a consultation, the specialist’s junior looked and touched my foot. I screamed in pain. My partner told him to get off and he said there is no pain that bad. I said ‘if you don’t get off my ****** foot I will hit you!’ I’m not a violent person but I am sure you’ll agree pain makes you want to do anything to stop it. He went to get the specialist and he told me he will operate ASAP.

The stent was removed in May of 2014. During my time off work I looked at CRPS and I came across Burning Nights. I read Victoria’s story and I cried. Someone understood the pain I was going through. I was also grateful, I did not have severe CRPS but the symptoms were still similar.

In August 2014, I was diagnosed with mild CRPS. I remember thinking if I had it mild, I never want it severe.

In October, I emailed Victoria and asked to come to her Meet and Greet event in November in Birmingham. Unfortunately the event was full.

Later that month, Victoria messaged me and told me seats we available. I was so excited to go! I rearranged a holiday just to see if these people were like me!

I was so nervous that day, what if I wasn’t a sufferer and the doctors had it wrong again. My partner supported me and made me go.

I met Michael at the door, a friendly man with a Burning Nights tie. He welcomed me and my partner and introduced us both to Victoria. Victoria immediately put us both at ease.

I honestly cannot remember many aspects of the talks but I do remember the other people sat in that room. They ‘are like me’.They didn’t look ill! These people had the same issues as I did with doctors not believing me. If you could describe CRPS as ‘NORMAL’; I was ‘Normal’ here! This day turned my life around! I could see ‘Light at the end of the tunnel.’

At the end of the day; I was exhausted but extremely glad I was in this room. I met Victoria, and immediately we hit it off as great friends.

From that day in November, I have become part of Burning Nights CRPS Support team.I want to show others you can continue to live with such a debilitating condition. I want to offer support to those who feel life is not worth living. I want to explain to others that CRPS is not just a ‘painful condition’ but comes with other problems like anxiety and depression.

The Burning Nights team all have CRPS and know what I am going through. I finally have a group of friends who understand me.

Having more tips from Burning Nights has given me more confidence at work. I can now easily ask for help and explain why I need it. I now work with a team who will help me and accept me for me.

The day I had a name for my condition, is the day my life changed for the better.

Michelle

Michelle’s CRPS Journey | Believe That Life Is Worth Living And Your Belief Will Help Create The Fact by William James | Courtesy of uberquotes.net

Thank you so much Michelle for sharing your CRPS journey with us. I know writing your own personal CRPS journey, like Michelle’s CRPS Journey, can take a lot out of people. For some they find it as a release, as if they have just got a large stone off their chest. For others they are glad to have told their story to help and support others. Thank You Michelle as well for volunteering for the Burning Nights CRPS Support charity. Will you share your CRPS journey like Michelle’s CRPS Journey? Contact us with your story.

Written: 15/11/2016

LET’S SPREAD AWARENESS of CRPS! 

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