CRPS – Complex Regional Pain Syndrome

What is CRPS?

Hopefully I will shed a bit of light on what it is on this page.

First of all lets play a little word game and add a letter “A” slap bang in the middle of it CR(a)PS – that’s what it’s like to have CRPS!  Note the plural of the word – because CRPS is plural in its symptoms – there is not just one symptom, and each of them makes you feel CR(a)PS.

So this is what CRPS stands for –

C = Complex – and boy this condition is just that!

R = Regional – because it usually affects one part of the body, however it can spread

P = Pain – yep it sure is a pain, in more ways than one

S = Syndrome – the collection of symptoms and signs

Oh and the “A” I added to the middle = Ass! – it is a bit of an ass to live with CRPS.

Not very much is known about CRPS, however it has been around for many years

What does CRPS mean for the sufferer?

CRPS causes the patient to suffer with severe, continuous and debilitating pain, which is usually burning, stabbing, stinging, twisting, crushing, along with many other adjectives for describing pain. It can also feel like the area affected is numb (I get this symptom when my foot is very swollen). CRPS can cause a range of other symptoms too including:

Extreme sensitivity to pain – called Hyperalgesia

Pain from something that should not be painful at all, such as very light touch, wearing of clothing, breeze – called Allodynia

Alternating changes to the skin between hot and cold, red and blue (makes for some very pretty skin colours), dry and sweaty, shiny and scaly, skin infections which are severe and slow to heal

Joint stiffness – small range of movement or no movement at all

Changes to nails and hair – grow fast and then slower than normal, coarse hair which then becomes thin, and nails become brittle and break easily

Oedema – swelling to the affected area

Tremors and muscle spasms

Not recognising the affected limb as it should be, i.e. feeling bigger or smaller than your unaffected limb, even feeling that the limb does not belong to the rest of your body

Insomnia – have you ever tried sleeping when in pain, now imagine this lasting for years!

What causes CRPS

If I knew the right answer to this I would be intelligent beyond belief as doctors and medical professionals are still not sure what exactly causes CRPS – theories around the causes include

• the sympathetic nervous system maintaining pain long after an injury occuring
• a triggering of the immune response leading to inflammation including redness, warmth and swelling
• damaged nerves not able to properly control blood flow, temperature and feeling/sensation

Maybe it is all three of these together, or a combination, or they are completely off the mark and it is none of these – whichever it is, it all leads to problems with blood vessels, bones, muscles, nerves, skin, nails, etc, and lots and lots of pain

How do you get CRPS?

It’s okay, it’s not contagious, you won’t get it by sitting near me, or reading this blog – although this blog may help you recognise the symptoms, because getting the right treatment early can be key to scaring this fiery monster into remission!

“Well how can you get it?” I hear you say.  Here’s how, now this part is a bit of a shocker and a horror story to boot!

You get it by:

• Injury caused directly to a nerve
• Injury caused to an arm or a leg – including infections and surgery
• Stroke and heart attacks (although in rare cases)

So let’s look at some situations and think to yourself “can I get CRPS if this happened”, a yes or no answer will do.

1. You get out of bed and bang your toe on the bedpost
2. You twist your ankle on the beach (like I did) causing a fracture and dislocation
3. You go in for routine keyhole surgery on your knee
4. You damage a nerve in an accident where you sliced your hand peeling a potato
5. You wrap yourself up in cotton wool for the rest of your life from this day forward so that none of the above can happen to you

Answers: 1 Y, 2 Y, 3 Y, 4 Y, 5 Y

Well how many did you get right?

No, it’s not a typing error in the answers above either.  You can still get CRPS if you do number 5 – that is the horror story – as CRPS can appear without any obvious injury to the affected limb!

Who can get CRPS?

You may be thinking at this point “oh it must only happen to people with certain genes or those who are predisposed to the condition through one reason or another”.

Ready for the second part of the horror story?

Anyone! Yes you heard me right, absolutely anyone can get this painful condition.

Is there a cure?

Sadly not at this time, although through research it may come at some point.

How do you treat CRPS?

By focusing on managing the pain and relieving the symptoms.  This can be achieved by

• Taking medications
• Physiotherapy
• Psychotherapy
• Injections to affected area to numb nerves
• Sympathetic nerve blocks
• Insertion of a Spinal Cord Stimulator

I am sure I can add others to this list and will do as time goes on and I learn more.  What I will say here though is that everyone with CRPS is different.  Not all treatments work for everyone.  It is very much trial and error to find the right treatment or combination of treatments to be able to relieve the symptoms and reduce the pain enough to maintain some form of a life with this incurable monster burning away inside of you.

Other names?

This odd little monster is not happy with one name, it is a little greedy and has been known by various names over the centuries, which have changed as research progressed and more was found out about CRPS (click here for a bit of a history lesson dating back to the American Civil War). Some of the other names that have been used are

RSD – Reflex Sympathetic Dystrophy

Causalgia

Shoulder-hand Syndrome

Sudecks Atrophy

When to seek advice?

If you suspect you are suffering from CRPS then please get yourself along to your GP/doctor as soon as possible.  As I said earlier, the prognosis can be improved with early treatment.  If you are suffering pain, worse than the initial injury, or burning pain like you are sat in a fire, even ice cold pain like you are in a bucket of ice, then don’t delay in seeking advice.  Also do not be afraid to ask who you see “is it CRPS?” (don’t be surprised if they look blankly at you either as most have not heard of CRPS – just tell them to look it up).  I wish I had known all this when I had my injury 6 years ago, maybe I would have pushed harder to be seen quicker and by the right people.

Anecdote!

I attended A&E about 5 times after the day my foot was reset in plaster (why it had to be reset is another story for another day).  On all occasions my foot felt like it was in an ice bucket.  The pain was more excruciating than when I lay in the freezing tide immediately after the injury.  I could not stand to have the plaster on any longer, it was so painful.  Not one medical person in that A&E even mentioned CRPS.  In fact, on one occasion I was told by a doctor “put a sock on it (my foot), that will warm it up”.  I was gobsmacked – reason for being gobsmacked

• I had been sat in a hot hospital for over 4 hours on a trolley (so my foot was elevated)
• my plaster had been cut open along the front to release the pressure from swelling (which may have caused the freezing cold in the first place – remember though, I had been there over 4 hours by this point so should have been getting relief from this)
• I had put a sock cautiously over my toes only (to put it on further would have tightened the plaster around my foot and leg, which would have defeated the object of having the plaster cut open) I had just removed it when the doctor arrived
• and my legs and feet were covered with a sheet and a blanket (I was roasting hot, my right leg was roasting hot, although I kept it under the sheet and blanket to add warmth to the ice that was my left limb).

There was absolutely nothing more I could do to get heat into my left foot and leg apart from getting a blow torch out of my handbag and roasting myself alive in front of a naked flame!

Had I known then what I know now, I would have been questioning doctors about CRPS two weeks after my accident when my first symptoms appeared (hindsight is a wonderful thing, just think how many times I could have one the lottery if I knew the lottery numbers beforehand!).  It was mentioned to me about seven weeks after my accident as a “maybe you could have” kind of statement but nothing was done to refer me on (I did not think any more of it because the doctor did not appear worried and had not referred me on).  It was not until another month or so later it was mentioned by my physiotherapist who requested my GP start me on a certain medication and have me referred to a pain specialist.  About six months later I was formally diagnosed as having CRPS by a pain consultant, at the same time I had an appointment with an orthopedic surgeon who took one look and went completely hands off and discussed CRPS with me (hands off because he knew he would aggravate the pain further if he touched my leg and foot).  Further treatment did not get underway properly until nearly twelve months after the initial injury – by then the damage had been done.

Early diagnosis = early treatment = better prognosis = chance for CRPS to go into remission.

If you think you have any of the symptoms then don’t delay in seeking medical advice.

References: 
http://www.nlm.nih.gov/medlineplus/ency/article/007184.htm
http://www.nhs.uk/Conditions/Complex-Regional-Pain-Syndrome/Pages/Introduction.aspx
http://www.rsdcanada.org/parc/english/RSD-CRPS/history.htm
http://www.patient.co.uk/health/complex-regional-pain-syndrome-leaflet

Told you it was a little complex, no wonder it has taken me more than six years to learn what I do know, and there’s still loads to learn.

Why not leave a comment about your CRPS story, I would love to hear from fellow sufferers.  If you are a fellow sufferer then I wish you a low pain day.

Thank you for taking time to read this page and to learn a little bit about CRPS.

Updated 08/01/2015

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