Just tell me what's wrong!

Imagine you go to bed one night. Just the same as any weekday night. You went to work that day as normal, in my case teaching, came home, had tea, watched some telly. You get the picture. Nothing unusual, nothing spectacular, just a normal day.

During the night, unbeknownst to you as you sleep, something happens that will completely and totally destroy your life as it was. Something so catastrophically destructive and rare that Doctors don't understand it, can't really treat it and certainly can't cure it. CRPS decided to knock on your door while you were asleep. Little did I know what lay ahead of me when I woke on 16th December 2005.

I went to work as normal on that Friday (16th), with a bit of stiffness in my right hamstring. Thought I must have slept funny. I wish. By the time I was due to teach in the afternoon I couldn't put any weight on my right leg and the foot was freezing cold. I was sent home from work, and by the Sunday my foot was like a block of ice, despite several layers of socks and a duvet wrapped round it. A trip to casualty ensued. I just thought I'd be wasting their time at A&E and be told to go home.

Instead they couldn't find a pulse in my now ischaemic foot and shortly after I found myself sitting in a hospital bed. Not allowed to eat or drink, they put me on a drip to keep me hydrated. I remember it feeling rather surreal, how could this be happening? For the next 48+ hours or so I was attached to a heparin pump and they finally found a pulse sometime in the early hours of the following morning. Think they thought it was a blood clot. How I wish it had been!

Then the testing began. MRI of blood vessels in the leg, normal. Echocardiograph, again normal. They were completely at a loss. I was already getting stabbing pains on the inside of my right ankle and knee, whilst my right foot remained stubbornly cold. Sent home two days later with an appointment at the out-patient clinic immediately they got started again after Christmas.

Unsurprisingly Christmas for us was a complete non-event. We just wanted to know what was wrong. It was like huge dark cloud hanging over us, the fear of the unknown. If it wasn't a blood clot then what was it? Things weren't improving, the foot remained freezing cold. The stabbing pains were ongoing and if anything getting worse. How was I going to return to work after Christmas? Never in my wildest dreams would I have thought at that stage that I would never return to work.

Back to hospital. I had ultrasound on the back of my leg done the day before the follow up vascular appointment. Lovely Consultant but said there was nothing he could do. Absolutely nothing wrong with the vascular system in my leg. It wasn't a clot. He arranged for me to see a Consultant in Rheumatology.

You can probably guess what happened next. Yep, loads more tests. I must by now have had every blood test known to man. The Consultant arranged for me to have a Pamidronate infusion. Utter waste of time, did nothing. Also had a tri-phasic bone scan. All the results were normal. What a surprise! RSD (as he referred to it) was mentioned as a possible cause for the first time.

I felt like I was going mad. I had now had the symptoms for two months or more. There was most definitely something terribly wrong, my mobility was worsening and I was now starting to see similar symptoms in my left leg. Apart from Clopidogrel the hospital prescribed nothing for me. They were I have to say absolutely useless. It was left to my GP to try and prescribe what he could to minimise the pain and other symptoms I was suffering from. I rapidly went through the different classes of painkiller till I was eventually prescribed morphine. I was up to more than ten medications by the time I saw the Rheumatologist the second time. I am still on all of those medications to this day.

I had not been back to work since the day I was sent home. We were also getting more and more concerned about the complete lack of urgency to do anything with me once they found that 'everything was normal'. Nothing we can do other than try to manage the pain (palliative care) so we'll book you into the next joint clinic. Which of course was months away! Eric had started to research the condition and discovered that if treated aggressively within a short time of getting CRPS, you could force it into remission. He was amazing, pushing, hassling, complaining. Trying to make things happen. But like everything else in the NHS, the wheels grind exceedingly slowly. We lost that window of opportunity.

Eventually I managed to get through the very laborious system they run to get to see a Pain Management Consultant. It's an utterly ridiculous system. Appointment to see the Rheumatologist and Pain Management doctors to 'hand you over'. Then you have to wait to go and see a Pain Management Nurse Practitioner to see if you need to see the Consultant. They can't do much, but did prescribe one extra medication which helped a bit. Finally I got to see my wonderful Pain Management Consultant who immediately diagnosed CRPS. He ordered a MRI scan of the lumbar region to check all was well. Yes, of course, it was normal.

By this time everything was considerably worse, particularly my mobility, or rather lack of. It had been more than six months after that fateful night for my CRPS to finally be diagnosed. And in that time it had well and truly got hold of me, remained very aggressive and just seemed to keep coming relentlessly making life harder and harder. I never set foot in a School again, being ill-health retired in 2007.

I've tried to keep my long path to diagnosis as concise as possible but it's vitally important to recognise just how long it takes. As I write this a part of me still wonders whether my CRPS could have been forced into remission had it not taken so long to get to see the right person? Or at least been prevented from moving to the other leg? Of course I will never know and it may well be that my CRPS was always going to be severe enough that nothing would touch it effectively. I just do my best to get on with the life I've been left with. More on that at another time.

Of course you have far too much time to think and mentally you go to pieces. I spent much of those six months feeling sufficiently depressed that thoughts of suicide were regularly present. Were it not for my wonderful Eric and my Border Collies, Bella and Kayla it's safe to say I wouldn't be writing this now. Thank you my love for all you have done and continue to do for me. Without you life simply would have no meaning now.

I'm sure the vast majority of CRPS sufferers have gone through a similar ordeal as me to get a diagnosis. It almost seems as if it is diagnosed on the basis that everything else has been ruled out. In the meantime your symptoms are getting worse, you fear for the future. You can't move on, can't get back to work. You are literally in limbo. The symptoms prevent you from doing things both because of the pain, exhaustion and compromised mobility. You're also worried that you might make things worse. Uncertainty reigns and there is little if any support from the medical profession.

Surely in this day and age you shouldn't have to resort to looking on the Internet to find out about your condition because neither your GP or most Hospital Doctors have even heard of it? And in some cases don't even believe it exists!


- Posted using BlogPress from my iPad

Introducing my CRPS

I have a condition known as Complex Regional Pain Syndrome (CRPS) also known as RSD, a rare disease which affects the Sympathetic Nervous System. CRPS affects both my lower legs from and including the knee downwards. Actually it's moving above the knees if I'm honest but I prefer not to think about it. I also have problems with my eyes. I will have had CRPS for six years come December. I would not wish this disease on my worst enemy so completely debilitating and life changing it is. The only way to deal with the catastrophic effect it has had is to now consider my life as consisting of two parts. Pre-CRPS and Post-CRPS. More on that another time.

The day to day impact of CRPS is that the affected areas are constantly (and I do mean 24/7) painful. This pain is not a gentle ache, we are talking pain of the potency that at times you would happily accept death just to escape it. That sounds ridiculous to 'normal' people, after all everyone suffers from pain, we should just get a grip and get on with it shouldn't we?

My pain is constant, relentless and varies in type and intensity. I constantly have what feels like ripples of fire running up and down the front of both legs. Most of the time I can't actually perceive my legs at all, there is just pain. Then add in the stabbing pains, such as through the middle of each foot, as if you've been impaled to the floor. Or the side of the knee as if someone has stuck a knife in and is slowly twisting it. Or through each ankle, or through the middle of your leg. Imagine this is happening all day every day, it never goes away, never gets better. Indeed it only gets worse if you do even the most trivial of things. Indeed CRPS punishes you for daring to do somethings as simple as have a bath, get dressed or anything else considered even vaguely normal. Life with CRPS is about as far from normal as it is possible to get.

The swelling - gross!!

Sadly you don't just have to deal with the constant pain, there is so much more. The swelling (oedema) around my knees and ankles is frankly disgusting. Years ago I measured around one of them and it was 34". Yes the same as many men's waists. And both knees are worse now, I don't measure anymore. My right foot points inwards because of the swelling around my ankle. I can't see my toes as they are so turned over. Bizarrely both big toes stick up on the air constantly. I cannot move any of them because of the pain. Unfortunately I still have full range of movement so that should my joints get pushed or pulled accidentally they work, producing exquisite, sickening pain. My balance is unsurprisingly rubbish.

What else? Oh yes the hypersensitivity (allodynia). My legs cannot stand anything touching them, my pain increases the longer the contact. I spend as little time as possible wearing trousers, socks. Perversely even the slightest hint of air flow over them increases the pain so my legs have to be covered constantly. The phrase 'stuck between a rock and a hard place' springs to mind. My husband has to help dress me. He is incredibly careful but sometimes he touches me slightly with a knuckle. This causes me to howl with pain. It is unbelievable how the slightest of touches exacerbates the pain so much. Similarly hot/cold water causes a disproportionate response. My husband runs the bath, so I know the temperature is fine. Yet I put my foot slightly in, it feels boiling hot. Movement of water, has the same effect so swimming is impossible. I even pick up the vibrations from the car when we go out. This forces my husband to try and find that particular day's optimal speed in an attempt to minimise the pain.

Speaking of increased pain, when my legs are 'down', say as you would sitting normally on a chair, then my pain increases as does the purpling effect which is ever-present over the whole of my lower legs. I can no longer sleep in bed, so my life is restricted to living & sleeping in an electric reclining chair, with my legs up carefully covered with a lightweight duvet. When I go out my wheelchair also has to have elevating leg rests.

Like so much with CRPS you have to tell yourself that there is NOTHING PHYSICALLY WRONG with your legs, you cannot damage them and the water isn't too hot. Really difficult at timesI can tell you...

The above sounds horrible as I read it back. However it is not exaggerated in any way, I'm just telling it like it is. I remain as positive and bloody-minded as I was pre-CRPS, two qualities that have helped me deal with it. I rattle with pills that do very little and I am constantly 'punished' for daring to push the disease as hard as I can.

- Posted using BlogPress from my iPad