My Story

I woke up on 17th January 2011 with a strange pain in my left wrist and around the base of the thumb. The pain didn't stop, not even for a second so I went to my GP. She gave me anti-inflammatory drugs and told me the pain would go away. 10 days later I went back to my GP because the pain hadn't stopped, not even for a second. She said maybe it's Carpel Tunnel Syndrome and referred me to a hand specialist and also sent me for an x-ray to my left wrist. The x-ray was clear so I waited for an Orthopaedics appointment.

On 24th February 2011 I met a very nice Dr who said he thought it was too painful to be Carpel Tunnel so he didn't want to operate. He referred me for an Electromyography (EMG) and said we could try a local steroid injection. The EMG on 26th February 2011 showed no abnormalities so I went ahead and on the 23rd March 2011 had a steroid injection in the back of my hand and the base of my thumb. It was very painful and as it wore off the pain was still there. So on 29th May 2011 I had a Magnetic resonance imaging (MRI), on my left arm. This meant laying still for what seemed forever with my left arm raised above my head. I couldn't move afterwards it was so painful in that position.

The MRI showed some slight inflammation (edema) in my left wrist but nothing else so I was referred to a hand specialist who I saw on 8th August 2011. He recommended a wrist splint and another injection. I started wearing the splint and this immobilised my wrist so I basically stopped using it. On 13th October 2011 I had several steroid injections in various locations on my left hand and wrist including in a finger. It was even more painful and again as it wore off the pain was still there.

In the post operative appointment on 17th November 2011, the hand specialist told me it was all in my head and I should go back to my GP. Thankfully my GP has been wonderful throughout and was shocked, sympathetic and pro active. She sent me for an x-ray on my neck on 21st December 2011 but again this showed nothing wrong. Meanwhile, my employer sent me to Occupational Health on 7th December 2011. I told the Nurse all my history and she said she thought the pain was a chronic long term condition and recommended equipment and furniture that would help me in my workplace. My employer agreed and provided all the suggestions except an assessment of my working environment.

Further to my neck x-ray results, my GP referred me to a Consultant Rheumatologist at a London hospital, where she hoped the latest research and knowledge would help me. On 17th February 2012 I saw a rheumatologist who spent quite a long time asking lots of questions and carrying out various tests such as reflex response. She then noticed that my left hand was very sweaty compared to my right and that it was slightly blue. She fetched the senior consultant followed by several medical students who all had a good look at my hand. He said, "You have complex pain and you need to see a specialist at our sister hospital." and then they all left. I was shocked and intrigued.

I started to Google complex pain and started to learn about Complex Regional Pain Syndrome (CRPS) and Reflex Sympathetic Dystrophy (RSD). My GP immediately prescribed a very low dose of Amitriptyline with a view to a very gradual increase until I felt some relief. She also referred me to the London sister hospital; The Pain Management Centre. On 14th May 2012 I met a specialist physiotherapist who spent well over an hour talking to me, reassuring me and offering help. He diagnosed CRPS and talked about how to start coping and managing it. He told me to remove the splint and use the hand as much as I could bear. He explained Graded Motor Imagery. (Mirror Therapy). He said I should try to use mirror therapy and to try to start desensitising the hand by doing small things that caused pain such as holding a fork and putting my wedding ring on.

I visited the Pain Management Centre again on 25th June 2012 and discussed with the specialist physiotherapist how I was getting on and how the pain was. He gave me exercises to do such as recognising left and right in pictures, practising fine motor movements and trying to visualise my hand in certain positions. He also said to try vitamin D.

I gradually increased Amitriptyline and started to take medication for dizziness too. I was feeling depressed by the time I visited the Pain Management Centre on 29th August 2012 and he recommended psychology although there was a long waiting list. I mentioned I'd like to try acupuncture and my GP referred me to my local hospital. On 11th September 2012 I met a hand therapist who said she knew less than the Pain Management centre so I should carry on seeing them and she had nothing to offer. Still increasing the Amitriptyline, on 24th September 2012 my GP suggested I stop driving and stop working!

On 15th October 2012 my specialist physiotherapist said he'd chase up the psychology appointment and suggested Gabapentin. I explained how I had tried to decrease the Amitriptyline and how I couldn't stand the pain so I accepted that the medication does help. He also gave me information about a national database for CRPS. I signed the forms - anything that might help with the research of CRPS must be good. On 1st January 2013 I bought an automatic car. I part exchanged my manual car and I love my new car. It's so much easier to drive.

On 16th January 2013 I met a doctor at the Pain Clinic at my local hospital. He said they don't believe in acupuncture and suggested a stellate ganglion block. He didn't reassure me at all and left me feeling depressed. On 23rd January 2013 my clinical specialist physiotherapist told me that the Pain Management Centre do not think stellate ganglion blocks work and especially as I had CRPS for 2 years now. He explained about a Versatis patch (lidocaine 5%) and also quetenza patches (capsacin) that we could try. He also told me about a neuropathic pain management programme that he is going to run and I agreed to take part.

On 12th March 2013 I attended the first session of this programme. There were 2 other ladies and three men. Two of the men have CRPS: one had an accident at work and had to have an emergency operation on his right hand. He then had CRPS in this hand. Later he had a carpel tunnel operation on his left hand and had CRPS in this hand. The other man had a routine knee replacement and then had CRPS in this knee. The third man had Guillain–Barré syndrome. One of the ladies had Transverse myelitis and the other Diabetic neuropathy. All very interesting, intelligent people whose lives have been changed by their conditions. The session lasted from 11am - 3pm and was facilitated by my Clinical Specialist Physiotherapist, a Consultant Clinical Psychologist and a Nurse specialising in pain.

It was SO useful. So far I have attended 7 sessions and I have learned so much about nerves and Human physiology and thoughts and meditation and mindful breathing and mindful stretching exercises and goals and expectations and and and ..... It has definitely changed the way I look at everything and how I approach everything. It has definitely had a positive effect. It is why I'm writing this blog to record my achievements.

I tried Nortriptyline but after 3 weeks I was begging my GP for my Amitriptyline back. I couldn't function with the pain. By the way, all this time I am still working full time without a single day sick. My GP was concerned about my blood pressure and again said I should at least take time off work. I refused so she said I must take blood pressure medication as my blood pressure was so high. On 24th April 2013 I started to take Amlopodine and Gabapentin.

I took 30th April and 1st May off sick from work. On 21st May 2013 I was rushed to hospital A & E from work with a work colleague to support me because I had severe chest pain on my left side and I couldn't feel my left arm. The doctors and nurses were wonderful and I had several tests including a CT scan on my head and a chest x-ray. Gradually the pain lessened and the doctor said he didn't think I'd has a stroke and certainly hadn't had a heart attack. I was allowed to go home.

I went to the stroke clinic the next day and the doctor said he really didn't think I'd had a stroke and that I definitely hadn't had a stroke in January 2011 because he would be able to see the scarring. He said it wouldn't hurt me to take an aspirin every day. My GP has gradually been reading up on CRPS because I am her only patient with this and she is interested. She said it is very likely that the chest pain was a spread of CRPS as all the tests didn't indicate anything else.

I carried on taking all the medication and rested. I was long term sickness leave from work which then ran into the 6 week holiday. I attended the Occupational Health again on 26th June 2013 and she wrote a report recommending a phased return to work and Access To Work to do an assessment of my work place.

So, at the moment I'm still resting and making small steps and looking forward to returning to full time work in Autumn. The pain in my chest is mostly dull with sudden sharp pulsating pains. Sometimes it feels like I've got pins and needles in my chest. I also get breathless. I have read that all these symptoms as well as the dizziness (pre syncope) are symptoms of CRPS. So my CRPS has spread.

to be continued...