I’ve got CRPS?

In 2010 I had my total knee replacement on my left leg, I wasn’t happy about having it but I was in a lot of pain and I had already had major surgery to try and sort the knee, but that was undone by an accident at work. The surgery went well and and as soon as I was back on the ward I started to flex the knee, I was determined to make a quick recovery because I was fed up of not being able to get around unaided.
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I was getting a good degree of bend and the incision was healing well but my pain levels were still very high, the consultant dismissed my claims of pain and kept telling me that the surgery had gone well and the knee was in place properly, but he ordered a scan that used a radioactive dye to check for any problems around the joint. Again the scan results showed that everything was fine and the consultant told me that I shouldn’t be in pain, but I was!
I kept getting the same result from my appointments with the consultant “Come back and see me in X amount of weeks”.
I saw physiotherapy but they just measured my degree of flex and gave me exercises, I had sixteen sessions of hydrotherapy and yet nothing was helping with the pain, in fact it was getting worse. My lower leg was now changing colour when I was stood using crutches, my foot was now also painful and the clonking knee joint had me in agony.
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The consultant suggested that I come in for day surgery, he would look inside the knee using a rigid endoscope and he would take some samples to check for infection and so I attended the day surgery unit. A young doctor came in and said “right this is what is happening”, he then proceeded to tell me something different to what I had been told, I wasn’t happy and so he went to theatre to check with his boss and upon his return he said that the plan was what I was told. I wasn’t happy to be in for surgery again, my 14th knee procedure but I was desperate to find out what was going on, 20 minutes later and the young doctor returned again, he started telling me that there was a change of plan on what they were going to do.
Surgery had never really bothered me, on my previous knee surgeries I had gone into the anaesthetists room laughing and joking with the anaesthetic team, but now I was getting scared and I think it was a mixture of the problems following the knee replacement and the now constant changing plan of action for this surgery. I got off the bed and started to get dressed, a nurse saw this and asked me why I wasn’t in my gown and I told her that I wasn’t going to have the surgery. Before I could get my shoes on I had several nurses around me and they were saying it’s okay to be scared, but everything would be okay, I explained that whilst fear was a factor it wasn’t the reason, I wasn’t happy to go into theatre without knowing exactly what was happening, I had signed the forms for a non invasive procedure and not to have my knee opened up fully again and so I left.

I decided to stop attending hospital, I was tired of being up there so often and yet getting nowhere. I receive a copy of all letters sent from the hospital to my GP and it was one of these letters that alerted me to the fact I might have CRPS (Complex regional pain syndrome), I had never heard of it before and I had certainly never been told that I might it and so I knew nothing about what it was or how it might affect me. I did what most people would do and I turned to Google search and I spent hours reading up about what causes it, what the symptoms were and what I was likely to expect in the future.
I have since spoken with the orthopaedic consultant and the pain clinic team and they confirmed that I do have CRPS, the pain has spread and is in my hips, both knees and feet. I have been offered spinal cord stimulation but I have heard that any more surgical procedures could cause more pain problems and so the risk isn’t worth it.

The following is from http://www.patient.co.uk

What causes complex regional pain syndrome?
There is often a history of an injury. The injury may be very minor such as a cut to the finger. The symptoms do not appear to be related to the severity of the injury. The injury may not be remembered, if it occurred at all.

CRPS can also start after other problems such as a head injury, stroke, heart attack or prolonged bed rest.

How common is complex regional pain syndrome?
CRPS affects about 1 in 4,000 people each year. CRPS can affect any age but is more common between the ages of 40 and 60 years. It can also affect children and the number of CRPS cases among teenagers and young adults is increasing. Although CRPS can start after a minor injury, it is more common after an injury to a nerve or after a fracture.

What are the symptoms of complex regional pain syndrome?
The symptoms of CRPS vary in severity and how long they last. Symptoms usually begin within one month after an injury or after having to stay in bed for a long time. The main symptom is pain in the arm or leg, which is often burning, sharp, stabbing or stinging. There may also be tingling and numbness.

The symptoms are usually much worse than you would expect after the injury. CRPS pain continues after the original injury has healed. The symptoms are often severe and have a big effect on day-to-day activities. The pain may spread to other limbs. The pain is long-lasting, and gets worse rather than better with time. Staying in bed and not moving around may make the pain and stiffness worse.

Movement may be limited, both because of the pain and because joints can be stiff. The muscles may become weak. Other muscle problems may occur and include sudden and severe spasms, tremors, severe jerking and other abnormal movements.

The pain and other symptoms often spread beyond the site of the original injury. The symptoms may spread gradually over the affected limb or suddenly affect the opposite limb.

Many patients say that their limb ‘feels strange’. It can feel as if it does not belong to the rest of the body and as if it is not your own limb. Sometimes the limb feels bigger or smaller than normal.

As well as pain, the affected area may have other symptoms such as:

Skin sensitivity: the skin may become oversensitive to light touch.
Allodynia: this means that you feel pain even after just a gentle touch, such as clothes brushing your skin or even air blowing on your skin. This may be felt as severe pain.
Swelling: may occur over the painful region.
Temperature differences between opposite sides: the affected arm or leg may often be warmer or cooler and the temperature may keep changing.
Abnormal sweating.
Skin changes:
Abnormal skin changes may occur, like ‘goosebumps’ and skin rashes.
There may be changes in the skin colour of the affected limb.
Skin infections can occur and can be very severe.
Your skin may become shiny, dry or scaly.
Hair changes: hair may become coarse but then become thin.
Fingernail or toenail changes: nails in the affected area may become brittle (crumbly or break easily) and grow faster at the beginning and then slower.
Psychological symptoms
Psychological symptoms may include:

Difficulty relaxing
Feeling less confident in yourself
Feeling unable to cope
Difficulty getting or accepting support from friends or family
Depression (this is common)

Until next time!

19 thoughts on “I’ve got CRPS?”

  1. I have CRPS for 22 years I was on all kinds of Medications and all types of Therapy.I had my right hand crushed by over 1500 pounds of steel.I have had 4 operations and 2 amputations on my hand,my CRPS spread from my hand and arm to my shoulders,back,and both legs and feet.I was using 2 canes and a wheelchair to get around,then 13 years ago I had the SCS implanted and it has given me a new lease on life.No more canes and wheelchair and the best part no more Meds.
    Mike

  2. What an awful experience at the hospital. CRPS is terrible to live with. I have been offered SCS and currently attending the assessment process. Not sure if it is the right thing to do. I am fearful that the demon will spread and I will end up worse off.

      1. Totally. I have been told they won’t operate to fix my foot because it can make it spread. They won’t operate on my shoulder to fix the damage there until absolutely essential, again because of spread. Yet they are willing to operate for the SCS!

          1. Will do. I will find you on twitter. Probably not tonight though. I am still trying to get the hang of it and find it difficult to use on the phone. Will get the laptop out tomorrow. Thanks

          1. My GP explained it as the nerves not reacting right within the gut and therefore digestion of certain food is harder. I get terrible burning like heart burn but a lot further down. I have read others’ stories of having full body CRPS. I try not to let it bring me down but as you know it is hard not to.

      1. I love kayaking too. Couldn’t do it now though to strenuous for all my medical conditions. This is where sailing is good because it’s not too strenuous in the right boat. There are clubs that cater for people with all sorts of disabilities and they usually have people who can go out with you to help manage the boat and take over completely if you get too tired, or they do all the work and you sit back and enjoy the scenery. Our local group supply all the equipment including the boats,you just turn up and sail. You don’t even have to rig the boat! Worth checking into if you like being on the water.

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