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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22 Comments

22 thoughts on “CRPS – Complex Regional Pain Syndrome

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  5. I envy your telling of your condition, as I can’t so easily describe what I am suffering to such a T. However in reading this blog I feel that it is my entire body effected instead of one limb or one area. It hurts to wear clothing, I am only 32 but suffer hot flashes, yet while my face is flushing red with sweat my arms or legs can be ice cold with tingling numbness and deep aching pain…

    You inspired me to tell my story… feel free to check it out!

    Liked by 1 person

    • I too get the all over hot flashes, only recently I have had a persistently hot sunburned face (it’s winter so not the sun that has caused it!) and yet my left arm has been bitter cold. My toes can be roasting, my ankle frozen and my knee on fire, all at the same time. My physio explained it to me – imagine the brain as 3 cups – one for your lower limbs, one for upper limbs and then one for the rest of you. When the pain becomes too much in one area it overflows into the next cup until the pain settles, which is why the symptoms appear elsewhere. I am not saying it doesn’t properly spread in its own right what I am trying to say it could be this overflowing process going on. I am glad I have inspired you and thank you for your kind words. I will take a look at your blog.

      Liked by 1 person

    • I did not realise everything you had gone through until I just read your latest blog post, a lot more than Fibromyalgia pain from the sounds of it. My first reply I was referring to CRPS pain so may not be what you are experiencing at all. Yes the Fibromalgia pain for me is my whole body, which it usually is. This is secondary to the CRPS, which would be my main condition. Keep fighting, you are a brave and courageous person.

      Liked by 1 person

      • I appreciate your kind words. Today was a difficult day, I don’t know what condition to consider my primary, when there are so many in the mix. Today my biopsy went well, but I began swelling quickly and was somewhat obstructing my ability to breath, the swelling is down a bit- yet the pain increased. I am toughing it out, and resting now at home. Here if you ever want to talk 🙂

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  7. Hi. I have not had CRPS as long as you have, but know exactly what you are talking about. I fell in a large chain store in 2014 and now have this awful disease. Mine started in my right hand and elbow and now has spread to half of the right side of my body. As you know, it is awful. I have had so many different kinds of treatment, none of which worked. BUT I am hopeful that one day something will. I was reading some of the other comments and I saw that people are getting hot in the face. WOW, this is so helpful to read because that has been steadily happening to me for the past month and I had no idea why. I don’t know anyone with CRPS and no one has ever heard of it so it is nice to find a sort of community where people know what I am talking about. Thank you!!!

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  8. You are welcome Autumn, glad you were able to get something out of reading my blog and I am sorry to hear you have CRPS. I totally agree with your comment about finding a community online where others know what you are talking about. It has certainly helped me over the years. Take a look at my blog post https://sailingpenguin.wordpress.com/2014/11/30/crps-my-toolbox-and-the-princess-in-the-tower/ it links to a useful site which I have found very informative and knowledgeable over the years. You may find me a bit slow in posting on my blog at the moment, I am just coming out of the worst pain flare I have had in over 4 years and I am completely wiped off my feet. Hopefully soon I will start blogging again. Take care and I hope you get some low pain days.

    Liked by 1 person

      • I have just got round to checking out your blog. It is amazing how your experiences with CRPS resonate with my own. It king of normalises it if you get what I mean. Not that CRPS could every be “normal”. I am so sorry you are having to suffer this terrible disorder, it is certainly one that I would not even wish on my worst enemy. Don’t worry about your blog being slow moving, you get more out of it when you write when you want to and not feel forced into writing if that makes sense. I am now following your page and will keep popping by to take a look. Hope you are having a low pain day. Take care.

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  10. wow…..never heard of this…scary that it can just pop up…good that you can go sailing….hope they come up with some electrical (maybe?) treatment or something that reverses it

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  12. Hi, I found your blog today while googling on sailing with chronic pain. I have always wanted to learn to sail, and when my husband of 25 years asked me for a divorce 5 years ago I signed up for sailing lessons! That was a start, but I’ve needed more practice. I’ve also been dealing with chronic pain for 10 years. I’ve had a whole lot of tests and therapies and lifestyle changes, and finally gave up my house and yard and furniture toward simplifying my life to minimize spoon waste on stuff I don’t care about. Well, when I sold my small home late last summer I had no job (office closed in May) and nowhere to live (I had a tent pitched at a campground)… Guess what I did?! I bought an old West Wight Potter P15 so I could learn to sail this summer! I am finally putting attention on healing my body, was my thinking, and I’ll have all winter to get diagnosed, properly treated, heal and get healthy.

    Except I’ve just been diagnosed with fibromyalgia. Not the DX I was looking for! LOL Spring is finally here but instead of cleaning and sanding and waxing my boat on my time off from work, I’m still unemployed and next week start a ten-week course of pain management therapies at the rate of 6 appointments per week, I hurt everywhere, and I’m tired all the time. (I’m currently on a vitamin plan and eating carefully and starting to walk/bike daily to try to get more energy.) How on earth can I learn to sail now??!!

    But, it feels even more important too, on a personal level. There is so much I don’t know but it was inspiring to find your blog today. I live in Michigan and have toured the Tall Ships when they’ve come through the Great Lakes. What a thrill it must have been to crew one! But I just want to putter around on my little Potter, if able. We’ll see what life brings. Looking forward to exploring your blog further. Thanks again.

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    • Hi Nancy

      Thank you for taking a look at my blog. Apologies for the delay in responding to your comment for some reason it was hidden and I only found it by chance this morning. Sorry to hear that you too suffer from Fibromyalgia. It is not a pleasant disorder to live with by any stretch of the imagination. I am glad that you have found sailing even though you may not find time for it at the moment. My little boat is sat on the drive and hasn’t had her bottom wet for nearly 3 years. Cost and time being the two biggest factors along with using the money to fulfill my tall ships races dream. I hope you have had a chance to look at the rest of my tall ships adventure. I have slowly been adding the days to the blog an hopefully in the next couple of days the final day will be on. It has only taken nearly a year to write but then that is how it goes when you live in chronic pain everyday. I just have not been able to find the energy needed, however I am nearly there.

      I hope your pain management went well. It would be great to hear how you got on.

      Wishing you all the very best
      Nicky

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