My Story, from April 2012 to present...

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Hi, my name is Tara. I have been diagnosed with CRPS for 3 years in Novemeber. My journey started in April 2012 I was 17, I had awoke one morning and was in a lot of pain with my foot/big toe. I carried on as normal on this day and just thought I had slept funny, but as the day went on and I was working as a Nursery Nurse, I could feel my foot getting more & more swollen and painful in my shoe. I then booked to see my GP to find out what they thought as to why my foot was so painful and swollen. They told me I had a sprain, bandaged me up and gave me anti inflammatorys and pain killers to help. A few days went on and I was still in the same amount of discomfort with my foot, still very swollen...

I then decided instead of going to college on the Monday that I was going to go and wait in the A&E department of my local hospital at the time, Bradford Royal Infirmary, where Xrays were taken which didn't show anything but when the Doctor touched my foot or even attempted to move it, I just cried. He diagnosed me with Tendonitis and put my foot into a Tuber Gauze bandage, sent me away with pain pills and anti inflammatorys and I was to return in a couple of weeks time...

This went on for weeks, they looked pretty baffled as to why my foot was swollen and still very painful, at this stage I was crutch bound unable to work in the nursery placement and was only able to attend college on the 1 day I were there. After maybe a month or 2 they started querrying a fracture so I was in and out of cast after cast. Which did help me be able to put my foot on the floor instead of straining my right leg. 

I was then referred to a Orthopedic to see what they would suggest at this stage I had tried numerous amounts of anti inflammatory creams and tablets and the pain pills were not helping at all. The Orthopedic Dr told me that he knew of a really good Dr that he was good friends with and he was going to refer me because there was nothing else he could do to help me. I was then referred to Pain Management clinic at St Luke's Hospital, Bradford.

I remember arriving there the first time, being nervous and not knowing whether he was going to belive that I could be in so much pain without an explanation, I had had no injury in the time that my foot started playing up, I had not done anything different other then I did go Ice Skating, but did not have any kind of fall or twist my ankle. Asked me a few questions went through everything when my pain started and swelling that could of caused this to happen. He even examined me and nothing other then pain and swelling seemed different...A few visits with him passed and I had started to notice my foot and leg would change colour, go blue and blotchy and my foot would be ice cold. I mentioned this to him at one of my visits, and by luck the colour change actually happened...This was when he told me he had a feeling what it could be but wasn't sure, he had to rule out any problems with my spine. He told me it could be something called Complex Regional Pain Syndrome and started me on Nortriptyline. 

I was sent for blood tests running that day, had to wait for MRI scan appointments to come through and also was to start physio to try and get some movement back into my foot and try get me walking again. The MRI's came through and I went for them although I hated it because I get Chlostraphibic in tight spaces but I did it, to try and find answers. I was then send for a 3 phased bone scan and nerve conduction tests also was told that a TENS unit may have benefitted me. 

When I went back to my pain clinic I was told it was Complex Regional Pain Syndrome/CRPS but was not really explained to me. It took over a year for me to be able to walk again unaided and I finally thought I was getting my life back. I passed my college course and at this time I was living back in Leeds with my mum. Visiting the Pain Clinic every 4-6 months and although I still had pain it seemed controlled with Lidocaine Patches. 

June 2014, I was prescribed Gabapentin which I had to slowly increase to 900mg. I was told this was the last thing I would be able to try and was a trial drug in this kind of nerve pain, if this was not to help then my last step would be a major surgery to put a spinal device inside me which would hopefully help manage the pain for me.

October 2014, I decided to sign up with a supply teaching agency as a Supply Teaching Assistant/Nursery Nurse. I enjoy looking after and teaching young children, helping them get more confidence and helping them to learn new things... The weeks started to pass and I had already noticed something, a big change...My hair had started to fall out :( I got an appointment with my GP who ran all kinds of blood tests which thankfully came back normal. My mum got me an emergancy appointment with my pain Dr. Who confirmed that the Gabapentin could be having an effect on my hair, at this point I was only on 1800mg. He asked me about the Spinal Cord Device again and I told him I needed time to think about it. At this stage I was 19 but in May 2014 I had a Tonsilectomy which ended up going wrong after being 1 week post op. More surgery scared me so much, due to almost dying because of a huge bleed.

The Beginning of this year January 2015, I gave my go ahead to trial the spinal device and went to talk to the SCS nurse on the 26th January and also tell my Dr that I would like to go ahead with the trial. This was when my mum told me to look for some groups on Facebook which I did and I joined them. Since then I have met some absolutely, amazing, insparationable people, who which I have grown close to a few. I didn't realize that so many people had the same thing as me, I was not alone anymore!!

March 2015, pain was worse than it ever had before, also spread throughout my whole foot & ankle, I wanted nothing more then to cut it off. I made an appointment to see my Pain Dr in April to tell him something needed doing, my GP would only prescribe me Tramadol which made me very ill taking it with the 100mg Nortriptyline that I have been on now for 3 years so I stopped taking it although it did help with the terrible stabbing pain I was in. I broke down in front of my pain Dr I was back onto 2 crutches and was getting a walking boot sorted I was just waiting for an appointment with the Orthotics Drs. My doctor told me he would get my surgery fast fast tracked as he could see how much this was effecting me, I had fallen into a very deep black hole, in depression, something that I have been battling with since 2011. My anxiety got worse and I could not go out alone, somebody had to be with me.

One day, I got a phone call, it was the hospital they was ringing to tell me they had got a date for me to have my trial done! I could have cried in fact when my mum got home and I was telling her, I broke down. This could be something I really need. My mum jinxed everything as she said now I had my op date everything would come at once......It did the 19th of June I saw my Orthotics Dr who could see the purpleness in my foot. He was very understanding and very interested in my Spinal Cord Surgery which was on the 23rd of June..He told me he was going to get my Boot sorted for me to pick up the next day. Which I did. I was counting down the days until my surgery.

23rd June 2015, 7:30am I was waiting on the ward for the nurses to come and speak to me, my Pain Dr came round to see me, he was doing my surgery...The time came to be taken down and my nerves started as I knew I was going to be awake for the full thing which scared me, I have only ever been under General Anesthetic before. I had to lay on my stomach in the operating theatre I had been prepped fluids put up and some calming medicine into me also plenty of Antibiotics because of where the surgery was....My spine, and spinal cord which would be extremely dangerous if I did get an infection...I remember my Dr and the SCS nurse talking to me as they were doing my surgery, the shots of local anesthetic into my back was not as bad as I thought (I have a major needle phobia) I felt a few shots go in and then I was numb, I felt nothing. I could see the Xray of my spine and my Dr then told me he was going to start placing the lead, and I would feel some pressure....Well yeah I felt everything, the lead would not go into place where my Dr needed it to be so he was having to work harder to get it in where he needed it...It was uncomfortable, very uncomfortable. I cried then throughout the whole procedure. Before I knew it it was over and I was being taken to recover to get the SCS switched on. I was then wheeled up to my ward where my mum & partner waiting for me in the reletives room. I had to be layed flat for 30 minutes. About an hour passed and I was told I was going to be allowed home, I thought great get me out of here and asked the nurse to get my mum to come and help me dress, although I was not in any pain at all because of the local I needed her to come help me. I was sick a couple of times which the nurse told me would be a reaction to all the drugs that was pumped into me.

The SCS trial was a week long. Wednesday the 24th June, I started with a major headache, my head felt like it was going to explode! The headache was relieved when I layed down and I could not eat as I felt so nausious. Friday the 26th my SCS nurse phoned me to see how I was getting on and to see if I would be going ahead with the full implant on the 30th June. I explained my headache to him and he told me I had a Spinal Fluid Leak, I had to drink COFFEE, yuk!! He told me drinking plenty of fluids to replace the fluid that was leaking would help to relieve the headache and try to stay layed down and also plenty of caffiene. Tuesday the 30th could not come round fast enough!! I needed rid of this headache, my Dr came to see how I was getting on, the headache did seem to have eased off some and was about half better then it was. He explained that usually they would of done a blood patch, which was to take blood from a vein in my hand and inject it into the spine....He really did not want to do this as I would be more likely to get an infection from this. 

My time came round to going down to theatre, my Dr and SCS nurse are such a funny couple, they work so well together and knew how to put me at ease. I would be completely out for this surgery which was so much better for me and my nerves...They came round to putting me to sleep after setting my fluids up and getting the antibiotics ready which would help stop me getting an infection after the surgery. Then everything went black.....

After about 4 hours, I slowly came round but over heard one of the nurses caring for me saying that I was Tachycardic...I was slowly coming round and eventually at about 11/11:30am I came around completely and my SCS nurse came to check how I was getting on and to turn my SCS on. I felt great now that I was buzzing and knew I would be allowed home that same day. I was extremly sore though. My back felt the worst as it was reopened and sutured and glued. Staples from the trial was out...I was taken back up to the ward and straight away asked for my mum to come to see me...Time passed and it got to about 3pm, I was told I could go home!! The nurse told me what needed to happen that I had to make an appointment with my GP nurse after 7-10 days so that they could check my incisions and take the steri strips off and dressings...I had 3 insicions. One down the bottom of my back, a small one on my left side and another bigger one on my left abdomen, where my battery is. 

I am now 15 week post op, wow how time flies....I feel good although my pain is still pretty bad in my foot, knee and lower leg where my CRPS spread to in the space of 6 months. I have so much faith in this device and I helped so much in the beginning, it just needs programming properly now which will be sorted on the 19th October when I see my Pain Management Dr again to be prescribed Lidocaine patches again..

 

I am having a few more problems on top of CRPS, my heart rate is too high so I am being referred and waiting for a letter to see a Cardiologist. I had to have an Ultrasound on the 5th October on my bladder and kidneys due to frequent UTI's (Urinary Tract Infections). The lady who did my Ultrasound told me that I am not emptying my bladder brilliantly, I thought, great more problems. I see my GP again on the 19th early in the morning to find out what the next steps are that they will take...