Never giving up hope or fighting CRPS

As I explained in my last blog, I am currently waiting to have the Spinal Cord Stimulation operation, but due to the open sore on my leg, I have to wait for it to heal. I have still got one sore that will not heal. I am currently on long term antibiotics and I have my sore constantly dressed. These dressings are incredibly painful because of the hypersensitivity caused by the CRPS. I recently had to reduce the amount of dressings due to them becoming a problem when my leg swells. I have tried so many dressings and have only found one that is the most bearable and which my leg does not react to, and this dressing is called Mepilex. I have had this sore for nearly 3 years and I find it really frustrating that there is a treatment that may help but I cannot have it until my sore heals.  Doctors have explained that dressings they would normally use on non-healing wounds are not really an option because of the pain they would cause, also the doctors have mentioned using creams on non-healing sores, and this too, isn’t possible because my leg reacts to any creams. It goes bright red and burns really intensely which causes a lot more pain and results in my whole body tensing up.

I have recently just been back to the dermatologist and re-questioned him about anything they could try that they haven’t already. I understand that I am a very complex case but need to find something to help my sore heel so that I can have the Spinal Cord Stimulator operation, which I have been waiting for. My dermatologist explained that we are in a difficult situation with finding something to help, however he re-suggested having a skin graft. When I first went to the hospital about getting help to get my sore heeled, it was to see a plastic surgeon, but at the time he didn’t want to do a skin graft. Now the dermatologist is sending me back to see the plastic surgeon to see if this could help and whether he would try it. I am willing to go to see the plastic surgeon but want to know all the facts and everything about the skin graft before I would go ahead with it.

I started going to hydrotherapy a few months ago to see if it would help me to get some mobility back. I found it extremely painful and it caused me a lot more suffering after the sessions; however I found that I could move more in water than I could on land. I attended about 7 sessions and my progress started to slip away and it only seemed to be causing me more pain.t. So I, my mum and my hydro therapist came to the decision of taking a break from it for now and maybe go again once I have had the Spinal Cord stimulator, because I think then it will be a great help and I would gain a lot from it.

Sleep deprivation is a major problem at the moment, I only manage to get 30 minutes – 1 hour sleep per night, the rest of the night I spend resting as I do find resting helps me to feel less tired. Lack of sleep is due to the amount of pain I suffer from and unfortunately there is no pain relief that helps control my main pain levels, because I need the stronger medication but this makes me really poorly.

Over the years of having CRPS, I have found ways to help cope with the pain and how the pain can make me feel from day to day. I find listening to music extremely helpful; especially listening to JLS because they are my favourite band. Also I have set up an awareness page on twitter (@crpsawareness), my aim is to raise more awareness and to help those that suffer with CRPS too. I find it helpful because I feel that I am doing something positive out of a negative. By talking to people who also suffer with CRPS through my awareness page makes me realise I am not alone with this disease and I find it helpful talking to them.  The main thing that helps me keep strong is my family and friends, they are amazing and are there for me and support me through everything. My mum is the one who comes to every hospital appointment with me and changes my dressings on my leg, I realise this can’t be easy for her or any of my family to go through, it’s not just me going through all this, it effects my family as well.

Elation and desperation

This blog is about how my CRPS has been from 2009 up and till the present day.

It was the summer of 2009 and I was on a family holiday, we had been out for the day at a theme park. I love rides and rollercoaster’s, however they do cause a lot of pain but I can’t stop everything I enjoy. My pain was a lot worse due to been on the rides, we arrived back to where we were staying and all of a sudden I felt no pain at all, I shouted my family and they came running through and wondered what was wrong I told them I was in no pain, they looked at me and couldn’t believe what I was saying. I tried to touch my leg where my CRPS was, and I could touch it without hurting. It was amazing I just couldn’t believe what was happening. I went to bed and slept the whole night which was great and when I woke I didn’t know if I had dreamt my pain going completely or not, but I hadn’t. I just felt like shouting from the roof tops that I had no pain. The doctors had told me that it could go between the ages of 16 and 19 and I was 16 and it had gone it felt incredible. A week later we came back from holiday and I was still pain free, I still relied on my wheelchair because my legs were not strong enough to walk all the time.

I went to physio and tried to get movement back because I wanted to get going again, it was hard because of my legs been tired they would just give way from under me without warning and I would fall straight to the floor.  However I kept trying to do more and more walking.

3 weeks after the pain going, I started a child care course, it’s what I always wanted to do and was looking forward to learning new things and going out and getting experience of working with children. I made some good friends at college, although I found it hard for people to except me as a person and not just see the wheelchair.

It was all going well I had bought skinny jeans and boots that I could now wear because I could touch my leg. Suddenly it all started to change again. About 5 weeks after it going I started getting an aching pain in my leg, after a few days of having this feeling, all of a sudden I felt the burning pain again and it hurt to touch my leg. I realised that the pain was coming back. I was really emotional and I felt devastated and heartbroken. However it wasn’t straight forward the pain kept coming and going for about 4 more weeks. I felt like it was messing with my head, a few hours I would have pain and it be unbearable to touch and then a few hours later I would have no pain and could touch it, until it came back and didn’t go again. I could not understand how it could go for 9 weeks and then come back, I just felt so upset and confused by it all.

A few weeks after it coming back, 1 scar on my leg opened up, it was a scar from an operation that I had when I was 3 and it just opened up. I carried on at college and my tutors were really upstanding and helped me with coping with it coming back and supported me while I was at college. My family was amazing and supportive and it was a shock for them as well.

A few months went by and it was now 2010 and I still had the open sore, it had been getting infected and was getting bigger instead of getting smaller. I started trying dressings, which was difficult because everything I tried just caused intense pain. I then started to feel another scar opening up, it was horrible because no matter how much I wanted to, there was nothing I could do to stop it.

I now had two open sores, things seemed to be getting harder to cope with, my sores would bleed so much that I had to change the dressings at college and because of how much pain it causes it would affect my concentration. I didn’t want to let it stop me so I just got on with it and was still getting good grades on my assignments. Half of my course involved going on placements in a school, I enjoyed working with the children and learning new things, however I did find it difficult getting around in my wheelchair.

It was April of 2010 and my sores still had not healed, they had become infected and anything I tried to heal them just would not work. I was only getting 2 hours sleep per night and was in so much pain, but I was no longer getting relief from the pain because my painkillers stopped working due to the pain over powering them. I still went to college because I didn’t want it to control me, most days I don’t think I should have done but I was so determined to not let it win. I then was advised by my tutor to stop going to my placement because they could see I was starting to struggle with it.

Then it came round to May and I had taken some time off college and things took another turn for the worse. I went to get a drink and the next thing all I can remember is waking up on the floor, all confused and quite scared because I didn’t know what was happening. I rang my mum and she came rushing home from work and we thought that maybe I had fainted. The next day I went to the doctors and they explained that I had either fainted or had a fit, the doctor told my mum to watch if it happens again to determine whether I am fitting or fainting. It then happened again once I got home and my mum saw me and she thought I fainting and not fitting.  A couple of weeks later and I was still having fainting attacks, I was referred to have tests done to make sure there was nothing else causing this to happen. I had a 24 hour ECG, an echocardiogram scan and MRI. The results all came back ok and the fainting was put down to being caused my pain and severe lack of sleep because I was now only getting 1 hour sleep.

I was advised by college to stop the course I was doing because they felt that I was not well enough to complete it, I didn’t want to do this because I felt like I had failed if I did but I had to face realisation and put my health first. Although I did finish my first year of assignments at home and passed them all, and I got a C grade for my first year and I can continue the course when I am ready.

It was 2011 and I was still fainting and still had two open sores on my leg. I had been transferred to the pain team at a different hospital because I was previously at the children’s hospital. When I saw the pain team they discussed possible treatments and an operation called spinal chord stimulation was mentioned but the consultant wanted to discuss this with other colleagues because of my complex case.  

I was referred to a plastic surgeon to see about maybe having a skin graft on my leg to heal the sores. The plastic surgeon didn’t know if this was an option because of the CRPS and the sensitivity of it and whether I could cope with this.  A skin graft was ruled out as an option and so was something called skin culture. In September it was decided to try putting a viscopaste dressing on my leg and then putting it into plaster cast so that my leg was immobilised. This was painful beyond words, because of the weight of it on my CRPS and especially the removal of it once a week. However after  one week of having it on the front sore on my leg had healed over ever so slightly. I continued with this for a further 7 weeks but it didn’t seem to be healing the other sore on my leg. It was decided to stop this treatment. The sore that had healed was still healed when the plaster cast was removed, however after two days of coming out of the plaster cast this sore re-opened.

I went back to see the pain team and they re-discussed the spinal chord stimulation treatment, but explained that this would not be an option while I have open sores, due to the risk of infection. The spinal chord stimulation is a wire being placed up my spine, another wire brought round from my spine to my tummy and an implant placed just under the skin.  This is then turned on and controlled by me with a remote control.  If it works and there is always a possibility it won’t, it could possibly take up to fifty per cent of my pain away but could leave a tingling sensation, similar to pins and needles.

I am now currently seeing the dermatologist to try and get my sores healed so that I can have this procedure I am there most weeks to have the dressings changed. I have now had the sores for over 2 and a half years and hope that they will heal soon, so that I can hopefully get some pain relief with the spinal stimulation.

It hasn’t been easy to go through all this but I hold out hope, that one day I will be in less pain and will be able to for fill my ambitions and dreams. The main people that help me through every day are my mum and her partner and my brother, they are always there for me and just help me so much, I cannot thank them enough for what they have and do for me.

Information about Complex Regional Pain Syndrome (CRPS)

Complex Regional Pain Syndrome formally known as Reflex Sympathetic Dystrophy. It is a Chronic Pain Syndrome which affects a part of the body, often an arm or leg. CRPS is rare and not very well known but can have a major impact on someone’s life and can be very disabling.

There are two types of CRPS; type 1 is when there is no identifiable nerve injury and type 2 is when the pain can be traced to an identifiable nerve injury.

CRPS may occur after surgery or an injury to part of the body. Symptoms may include:

• Burning pain in one part of the body
• Increased skin sensitivity
• Changes in skin temperature: warmer or cooler compared to the opposite extremity
• Changes in skin colour: often blotchy, purple, pale, or red
• Changes in skin texture: shiny and thin, and sometimes excessively sweaty
• Changes in nail and hair growth patterns
• Swelling and stiffness in affected joints
• Motor disability, with decreased ability to move the affected body part

CRPS can be exceptionally painful, so it can become difficult to move the affected area.  This can lead to muscles weakening and stiffness, sometimes, the less the affected area is moved the harder it can become to move and symptoms may get worse. Pain may also become worse when you are stressed and at night, this may result in lack of sleep.

Doctor’s are still unsure what causes CRPS, but they are lead to believe it is caused by a change in the nerves after an injury or surgery. It is understood that the nerves that send pain signals become more sensitive and non-pain nerves begin to send pain signals as well.

Although CRPS is incurable is can be controlled by treatments. Once your doctor has diagnosed you with CRPS they will help you to find the best treatment to help you and their aim will be to reduce the pain. Treatments may include:

·         Medicines – often a different combination of medicines are used to find the best combination that helps you.

·         Nerve Blocks – these are injections that may relief pain for a few hours and are maybe used so that the patients can do some exercises while the pain is relieved.

·         Physiotherapy and Occupational Therapy – relaxation techniques have been successful in helping to deal with the pain and physiotherapy may help to keep the affected area moving.

CRPS is not a psychological syndrome, but people may develop psychological problems when family, friends, and co-workers do not believe their complaints of pain, people that suffer with CRPS need all the support they can get.

Not letting CRPS, stop me from achieving goals

This blog post is about things I did and how my CRPS was during the years 2008 to 2009.

I was still getting the open sores where my CRPS was and by this time there were 5 different scars that would just open up. When I could feel a sore coming and my mum used to say it might not come but I had never been wrong, it just felt like I couldn’t stop it from happening no matter how much I wanted it to and it was awful. When they would come they would last for a couple of months and then go again. They caused so much pain, because I would have to have dressings on my leg and because my leg is hyper sensitive it caused extreme intense pain.

I had always wanted to be a bridesmaid and then in 2008 I got the chance to. I relied on my wheelchair quite a lot at this stage especially when I would get the open sores. However I was determined to walk down the aisle behind the bride. I had open sores on my leg at the time, but I really wanted to reach the goal I had set for myself. I went to physio and mainly worked on my walking, it was difficult because it really hurt to walk but once I got into the right frame of mind I wasn’t going to give up trying. As the day came and I was bridesmaid and was at the church, I started to walk behind the bride and made it all the way down the aisle. I was so pleased with myself and couldn’t believe I had done it. It did make my pain worse but it was worth it because I had done it.

School did become difficult, coping with the work and the pain I was in, but I enjoyed school and wanted to do well. Whenever I went to the hospital the doctors couldn’t believe I was still going to school. Sometimes it would have been easier to stay at home but I use to think to myself that the pain wouldn’t be any better at home so I carried on going to school. The school was very good and understanding, if I needed time out of a lesson they would allow me to and helped me to cope the best they could.

2009 and I was in my last year at school and getting ready for my exams and I was worried because I struggled to concentrate due to the pain and suffered from short term memory loss due to the pain so I was worried I would forget things. I was predicted fairly good grades but in the mock exams I didn’t get the grades I was predicted.

I did the exams and did find it hard but I just got on with it and tried my best, I revised so much, to try and get the grades I needed to get into the college course I wanted to do.

I got my grades back and couldn’t believe I had achieved the grades I was predicted and some were better than predicted. I came out with 2B’s, 8C’s and 1D. I had got more than enough grades to get into college.

I felt, that although I had CRPS it wasn’t going to stop me doing what I wanted to do and to achieve, so I didn’t let it.

Complications and an incredible Experience

This blog post is about how my CRPS was in 2004 to 2005, and things that happened in these 2 years.

It was 2004 and I had started a new tablet called Amitriptyline, this medicine acts on nerve cells in the brain. I was taking two tablets a day. After a couples of months of been on this tablet I didn’t feel that it was working, but then I started with awful side effects. I started having hallucinations at night when I was in my room trying to get to sleep. At first it wasn’t too bad I thought I saw things move across my room but then just thought it was because I was tired. It wasn’t until I was seeing things walking through my bedroom door and monsters hanging off my ceiling that I started to get really scared. I was only 12 so didn’t really understand what was happening until we spoke to my doctor and they said it is side affects to the tablet. I stopped the tablet and then these hallucinations slowly stopped as the tablet went out of my system.

Later into 2004 I started getting a different sort of pain where my CRPS is, but in the scars that I got from the Ilizarov frame. It felt like a stabbing pain in one of my scars and then over a couple of hours my leg started to swell but mainly just in the area I had the new pain. A few hours later I still had this pain but it was becoming more intense. Then all of a sudden a bubble of blood came through my skin, it hurt so much and couldn’t understand what was happening. Within an hour my skin had opened up on the scar that had been hurting and it was bleeding. My mum took me to see my doctor as soon as I could get in and he could not understand it, he told me to go see a dermatologist. When I saw the dermatologist, he said it was very rare for this to happen but it is secondary to the CRPS, but because my leg is hyper sensitive I couldn’t stand sticky dressing or really any dressing but eventually I found a dressing that was must tolerable but still caused extreme pain because it was on my leg.

A few weeks later and I still had this open sore on my leg but I started to get the stabbing pain again in a different area on another old scar. The same thing happened and my mum sat and she saw the blood just come through the skin and again within hours it had opened to the full size of the scar. These sores become infected very easily so I was put on antibiotics. Within a few months they had healed.

Middle of 2004 I went to the hospital to see my physiotherapist and was told my mum and dad needed to go and talk to a member of the pain team, so they could talk about how they are coping with me having CRPS and what it was like is like for them. I did my physio with my physiotherapist and thought nothing of my mum and dad going to talk to someone. A few months later I had gone to bed and I heard the phone ring, I asked mum who rang and she said someone had the wrong number. An hour later my dad came home from work and my mum came to see if I was still awake, I was, she told me to come down stairs. I went down and my brother, dad and mum were sat down and told me they had something to tell me. They told me that at the appointment where they went off to talk to someone, it was to discuss me be nominated by the hospital to go on a trip. The trip was with a charity called dreamfilght and I had been chosen to go on a trip to Florida. I couldn’t believe what they were saying I just started crying because I was over whelmed. They told me I would be going with 200 children who all had a disability of some kind that had been nominated by hospitals and then chosen because they feel they deserve to go. My mum and dad hadn’t told me I had been nominated because they didn’t want me to be upset if I wasn’t chosen to go. After it had sunk in I was so happy and couldn’t stop smiling. The only thing that I was unsure about was leaving my family for 11 days because it was only me going and not them.

In about March of 2005, I went and met the group that I would be in because there were different groups for different regions of the country. There was a carer for each 2 children in every group. It was nice to meet the other children that would be going and it all felt real at this time and I was getting really excited.

About a month before I was due to go to Florida I got a sore open up on my leg again, and couldn’t believe it. I was determined not to let it get to me to much because I was so looking forward to Florida.

October came and it was time to go on the trip of my life. We went down to London where we met all the other children that were going and had a massive party where there were celebrities and it was amazing. Then the next morning we went to the airport and went to a private place to wait to get onto the plane and there was another party with more celebrities. We got on the plane and it was like no other plane journey I had been on before, there was entertainment all the time and the 9 hours just flew by. When we got to Florida it was amazing we went to all different theme parks and went on all the rides and didn’t have to queue or anything. The rides really hurt my leg but I just tried to enjoy myself and every minute of it. The part I enjoyed most was the point where we got to swim with dolphins, it was incredible we got to feed them, kiss them and swim with them.

When we had arrived back in England and were on the bus home I was so excited to see my family again. When I got off the bus and saw my family and just told them I had the best time ever and on the way home I didn’t shut up because I told them all about it and then when we got home I showed them pictures and gave them the presents I had bought for them. My family said that it did me the world of good because I was more confident and although I still had CRPS I was more like my old bubbly self and that was because of the fun I had.

I will never forget that experience it was just simply incredible I made some friends for life and I am so grateful for been chosen to go.

Adapting to and understanding CRPS

Facts of CRPS/RSD:

·         This Chronic Pain disease is believed to be the result of dysfunction in the central or peripheral nervous systems.

·         CRPS is a rare disease but can be very disabling.

·         Often it affects the extremities, hands, arms, legs or feet.

·         CRPS can be caused by an injury or surgery.

·         Treatments to help control it may include medication, nerve blocks, physiotherapy, Spinal cord stimulation or Intrathecal drug pumps.

I had never heard of CRPS but within weeks of having it, I knew everything I needed to know about it. I couldn’t believe how one part of my body could hurt so much all the time, and how the slightest touch intensifies the pain. I feel pain 24/7, 365 days a year. When I was diagnosed the mixture of medication I was on seem to help and seemed to keep my pain at a continuous level, but was still in a lot of pain.

When I was diagnosed the doctors told me that because I was a child there was a chance it could go when I would stop growing between the ages of 16 and 19, but this wasn’t guaranteed.

I had to find ways to stop things touching my leg due to the hyper sensitivity. When inside I roll my trouser leg upto my knee and I can only ware boot-cut or flared jeans because they flare out in the right place so that I can adjust them when I go outside so that it isn’t touching my leg. To keep the bed covers off my leg, I have three cushion rolls placed in my bed. I seem to have developed quick reactions to getting my leg out the way if anything/anyone comes to close to my leg.

I went to school every day and tried to just get on with day to day life the best I could. Some days the pain was worse but I still went to school and did the best that I could. I did physiotherapy everyday to try and keep my legs moving and to not let my muscles get to weak, but I did use a wheelchair most of my school days to help me get around.

Things that make my pain worse are:

·         Vibrations (from music, in the cinema etc.)

·         Touching it

·         Cold weather

·         Stress

·         Creams on it

·  Walking

The family that I Iived with when I was diagnosed I found really supported me and helped me to understand what was happening and took me to see doctors when I needed to and to get the help I needed. However I did find that some people thought it was all in my head because they had never heard of it and couldn’t understand it and because you can’t always physically see it, this made me feel like I was going crazy because I knew it wasn’t and it was hard to hear people thinking that but this disease is NOT psychological.

Most days I would wake up and I would hope that it had all been a bad dream and that it wasn’t really happening to me. I couldn’t believe how much my life had changed since I got CRPS. I was getting less sleep (about 4-5hours sleep a night), I wasn’t able to walk as much, and found it hard to concentrate at school and on activities I enjoyed. I also felt like my independence and confidence had been taken away from me because I found it hard to walk and felt like the pain had taken part of me away.

I always try to stay positive and put on a brave face because I feel like no matter how much it hurts and how I feel inside, if I look sad and moan about it, it won’t make me feel any better or make my leg any better, so I just try to get on with it and take each day as it comes.

My story of how I got CRPS

I am currently 19 years of age and this is my story of I got CRPS.

 I was born with a club foot on my right leg. Doctor’s tried several operations to try and correct this but until I was 6 years old none of those operations where successful, but I did not let it stop me. It may have taken me longer to learn to do things like hand-stands and was slower at running but that did not bother me and I would not give up trying to do those. Then when I was 6 years old, I had an Ilizarov Frame put on my leg to try and turn my foot straight. An Ilizarov Frame consists of two or three metal rings that encircle the leg to be corrected, pins are then attached to the rings and go through the bone. The pins had to be tightened three times a day in order for it to be successful. I had this on for 4 months and then was put into plaster casts while the bone set in the new position my foot had been turned to.

When the plaster casts were removed and it was incredible, my foot looked straight and it was like magic. It made such a difference I could walk better and wear shoes from the shoe shops where as before I had to have them made because of how my foot was. My foot is currently 6 sizes smaller than my other foot but it is manageable, I have an insole with a blocker on the end so that I can get the same size shoes.

When I was 11 years old everything seemed to be going well I was getting ready to move to secondary school and was excited about it, and was like any other 11 year old was.  A month before I was going to be 12, I started getting a rash on my right lower leg, I went to my GP and it looked to be like eczema, so I was given creams to put on my leg to help the rash go. When my mum tried putting on the creams it just made it worse, my leg would go bright red and it became very painful.  Then as days went by it just kept getting worse and sometimes my leg would bleed where the eczema was just for no reason. I was referred to see a dermatologist, who agreed that I had eczema but thought there was something else underlying my skin.  Once the eczema had been treated, I had tests done to figure out what else was wrong with my leg because it was really sensitive to touch and felt like it was burning all the time, but all the tests showed nothing. Six months after it started I was diagnosed with Reflex Sympathetic Dystrophy (RSD) now known as Complex Regional Pain Syndrome.  

I had never heard of this disease before and was trying to take everything in. When we got home from the hospital my mum went on the internet to find out more information on it. When we looked at the lists of symptoms for it we couldn’t believe it because I had a lot of them, and then we knew straight away this was the disease I had.

The symptoms I have are:

·         Burning sensation (like putting part of your body into scalding hot water and never taking it out.

·         Hyper sensitivity (even the slightest touch causes intense pain)

·         Cold weather causes the pain to increase.

·         Swelling to the affected area

·         Skin colour change.

·       Complication of open sores.

I was referred to see a pain team to try and help get control over the pain. I was put on a small mixture of medication, because it is thought that certain tablets together provide better relief. I was able to get some relief and the pain was at a bearable level and what I used to call my ‘normal’ pain level, because it would stay at a constant level unless touched. Not long after I was diagnosed I had a nerve block to try and help the pain, I was told it could make the pain better, worse, better for a short time or have no effect. The first two days after I had the nerve block the pain felt worse but was told this could happen, but the pain stayed worse than it was before I had the nerve block.

I found it was getting harder to walk because it was causing more pain, and when I started secondary school I found it too painful to walk round school all day. I was provided with a wheelchair to try and help me get around a school which did help.