Complex regional pain syndrome 

Introduction 

The pain associated with CRPS is usually confined to one limb 

Complex regional pain syndrome (CRPS) is a poorly understood condition in which a person experiences persistent severe and debilitating pain.

Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.

The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.

The skin of the affected body part can become so sensitive that just a slight touch, bump or even a change in temperature can provoke intense pain.

Affected areas can also become swollen, stiff or undergo fluctuating changes in colour or temperature.

Many cases of CRPS gradually improve to some degree over time, or get completely better. However, some cases of CRPS never go away, and the affected person will experience pain for many years.

Read more about the symptoms of CRPS.

When to seek medical advice

You should see your GP if you have persistent pain that is preventing you from carrying out everyday activities.

CRPS can be difficult to diagnose because it involves a number of tests to rule out other possible causes. It's therefore best to seek help as soon as possible, because treatment may reduce unnecessary suffering, if started early.

Read more about diagnosing CRPS.

What causes CRPS?

The cause of CRPS is unknown, but it's generally thought to be the result of the body reacting abnormally to an injury.

It used to be thought that CRPS was a psychosomatic condition (the symptoms were "all in the mind"), but research has since disproved this.

Read more about the possible causes of CRPS.

Who is affected

It's difficult to estimate exactly how common CRPS is, as many cases may go undiagnosed or misdiagnosed. A study claimed that up to 1 in 3,800 people in the UK develop CRPS each year.

CRPS can begin at any age, including in children, although the average age for symptoms to start is around 50. Women make up around 3 out of every 4 cases.

How CRPS is treated

Treatment for CRPS involves 4 main aspects:

  • education and self-management – being given clear information about your condition and advice on any steps you can take to help manage your condition yourself
  • physical rehabilitation  treatment to help manage your symptoms and reduce the risk of long-term physical problems, such as physiotherapy exercises
  • pain relief  treatments to help reduce your pain, such as anticonvulsants or antidepressants
  • psychological support  interventions to help you cope with the emotional impact of living with CRPS, such as cognitive behavioural therapy (CBT)

Due to the complex nature of CRPS, a number of different professionals will usually be involved in your care.

Read more about treating CRPS.

Page last reviewed: 09/05/2014

Next review due: 09/05/2016

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Comments

The 17 comments posted are personal views. Any information they give has not been checked and may not be accurate.

littledancer said on 19 September 2014

Hi ive applied and been successful wit h getting my blue badge, i have CRPS in the foot and sometimes walking is really painful especially in the cold
the assesmant wasnt even bad they just contaced my pain specialist and GP to prove what i had said in the form was correct, its certainly made life much easier now
good luck with getting it

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DeniseK said on 16 September 2014

Hi
Is there any one in the Uk that has CRPS applied for a blue disabled badge, but does not get a disability allowance. I am thinking of going down this route as walking on my ankle is becoming more and more difficult, but can't face the assessments for a badge, if I am unlikely to get one in the end. Would appreciate any info you may have on this

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Big Cent said on 03 June 2014

Hi,
I've been a CRPS Type 1 / RSD sufferer for the last 17 years.
If anyone is interested in starting a network just get in touch with me.

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MrsTaz said on 07 April 2014

I've been a CRPS sufferer since August 2000. Mine started with an injury to my wrist, back then it was pretty rare hence why it took over a year to diagnose me. After being pushed from pillar to post, my GP wrote to the Pain Specialist asking if I had CRPS, tests confirmed I did.
Due to how long it took to diagnose the treatment didn't help. I still tried the nerve blocks & after a total of 7, I had no more.
I managed to work for 3 years after being diagnosed, but in 2004 I had to give up work completely. Unfortunately my CRPS had spread.
I wore a wrist splint, which helped loads, hydrotherapy helped but it didn't heal me. It got to a stage in 2005 where no Specialist could help me, since then I've been under my GP only.
As for government benefits, yes I've had to fight, but I asked a disability group who helps with benefits etc, they fought my case & I've been awarded the benefits.
This condition is not in your head, don't let anyone try to tell you different. Stress & worry do make the pain more vigorous, so try to de-stress. I found writing down how I felt helped, also talking to people who understand.
If I can help, please ask & I'll do my best. You're not alone & there's people out there who do understand.
Keep positive thoughts no matter how hard that may be.
From one CRPS sufferer to others, I know & understand how you feel.

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Skibob said on 04 April 2014

I am in exactly the same situation as Kayak13. What do you ask the occupational therapist ( I'm a teacher too!) ?

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Kayak13 said on 27 January 2014

Having had a year of being examined, X-rays, MRI scan, ultra-sound scan I have been diagnosed with this in my wrist. From the sounds of people's comments on here, I've been lucky to be diagnosed 'early'. Doesn't mean I'm finding it easy-far from it! From being very active outdoors, sporty, sociable to being anxious, fed up, demotivated, passed from pillar to post by medical people my life has been turned upside down and I know there are people far worse off than me (believe me I've seen it in family and friends past and present) but at the end of the day I have to look after number 1.

Has anyone got any tips of what to ask occupational health regarding support at work (teaching)?

These would be very much appreciated.

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Spiralling Down Alices Rabbit Hole said on 08 January 2014

Alice still scrabling in Wonderland! So over a year now and still no ESA or DLA to support us as CRPS and its impact is not being accepted here in UK. Hospital department brilliant, GP still total waste of space. In fact the DLA GP stated that pain cannot incapacitate as in her qualified experience pain can't do that! Yes I would love to do all those therapies that could help but when you are denied the right to have the basics to live it is a bit out of your rerach to get to sports centers. At the moment I'm bandaged up again with no hand as further complications were found but Soc Services still not interested in providing help while I'm unable to use my hand at all...no instead they have taken my child away because I'm supposed to be keeping a spotless home and it is apparently unacceptable for a disabled parent to want her teenage child to help by tidying her own room once a week when I can't scrub and clean the house to show standard myself! As for soc services help for me well it just doesn't exist despite the consultant requesting help be put in place. But I guess that if it were not for the fact I own my home, my child and I would have been on the street homeless a year ago since the gov and DWP and GP's and soc serv do not give a dam about CRPS and the impact to a person and their family.

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69Corvette said on 17 September 2013

Response to carolho
I have had CRPS for 18 months and it has not been easy but you have to push yourself every day! Don't give in to the pain. I swim and water walk everyday for 2-3 hrs and physio, thi chi ride a stationary bike, stretching and desensitizing . The exercising help reset the bodies nervous system, which is what the sympathetic nerve needs to stop the burning pain. Also don't stiffen at the pain relax and ease into the pain hurts much less! Guided imagery theropy will help you with this to.
I use to jog 6k a day and weight lift, do the program PX 90 and insanity work out. So really do know the benefits of e exercising . Please don't leave this world, there's so much it has to offer. But you have to work hard for it, it won't be easy but it definitely worth it! It will take about two years to get more pain releafe but its worth it! My doctor has me on lyrica this really helps with the burning pain also.
Carolho have a family member help you set up a schedule to help you. You must make a routine and try and keep it the same every day! I swim every morning 2-3 hours everyday after lunch I do physio ( which include stretches & leg e exercises , every evening after supper I ride my stationary bike and more stretches and band resistant exercises. Twice a week I do thi chi in the after after swing ( this has help me a lot also) fight and keep moving!!
To all CRPS suffers keep moving !!!

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joanneaj said on 05 August 2013

Hello to friends in the UK. I have been seen at the Mayo Clinic in the US twice a month for 1-1/2 years. I was a martial artist who slammed my feet into karate targets thousands of times, developed osteoarthritis, then hallux rigidus, and then had bi lateral arthrodesis in both feet to replace my bones with titanium. The surgery is healed and intact, and I have constant pain, just as each of you have described. I do not have a firm diagnosis yet, but will probably in two weeks.

Yes it is disheartening. I am only 60 years old and was an athlete and now can barely walk. I'm not suicidal, but really wouldn't mind if my life ended if this is what I'm facing. Having said that, I'm compelled to start demanding answers from my many docs at Mayo. For instance, why am I spending $600 a month for medication that doesn't improve my situation? I'll tell you what has worked for me. Once a week or so, when I haven't slept for several nights and am in especial pain, one of my adult sons will bring me a tiny toke of marijuana, and I am able to fall asleep. This has led me to study medicinal marijuana, and I am shocked that the medical community hasn't embraced it If you Google "clinical studies" and marijuana, you will find hundreds of studies where marijuana has improved life for people suffering from glaucoma, cancer pain, multiple sclerosis, anxiety, Tourette's syndrome, and on and on.

Next week at Mayo, I'm going to ask my rheumatologist and surgeons for a diagnosis, then ask them to get me into a clinical trial for medical marijuana. If they can't, then I'm going to inform them that I'm buying it on the street and creating my own clinical trial, and will inform THEM of the results. I am sure this is not the answer for all of you, and I sincerely empathize with your circumstances. But my theory has evolved to where I must do whatever I can to improve my quality of life.

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K Mac said on 04 July 2013

I have chronic CRPS and have found there is very little knowledge among healthcare professionals on how to deal with the problems presented at this stage. It took over 8 years to diagnose me.

The biopsychosocial model that now dominates the NHS has a lot to answer for- had the old medical model existed an x-ray would have been taken and bingo, a diagnosis at the acute stage. that is where the treatments like physiotherapy are most effective.

The Royal College of Physicians' Guidelines for CRPS (2012) should be compulsory reading to all healthcare professionals, but especially GPs. They are downloadable as a PDF. I have educated myself and despite the pain am keeping the atrophy at bay.

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carolho said on 20 June 2013

I have had this condition for four and a half years. It is soul destroying, I was just sent home and told there was nothing to be done. I have tried very hard to fight it using pain management techniques and am still quite independent. However this week I've experienced more symptoms that I'm not sure I can bear. I have always had spasms in my legs, very painful but bearable. The CRPS spread to arms a couple of months ago and now the spasms effect my whole body. It usually happens at night, I call out involuntary, it lasts a few hours and I'm afraid of it.
I will go to my GP but I know the response I will get.
Do spasms like this effect anyone else, if so is there a way to manage it.
I would leave this place to-day if I didn't have responsibilities

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elkiemia said on 07 June 2013

After getting no where with research on CRPS on the internet, reading so many peoples negative experiences with the medical profession, surely as sufferers we should get together and try to raise awareness. I have found that as painful as the condition is, it hurts more when people do not believe you, even those closest to you. We need to get this condition talked about in the media, we need to start making people realise just how much this condition affects our lives. Any one got any ideas?

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Spiralling Down Alices Rabbit Hole said on 17 May 2013

I totally agrre: the "Regional" has nothing to do with where the pain is but everything to do with whether or not you get treatment or support for this cruel and crippling illness.
7 months down the line from a simple broken wrist and now a complete arm that does not co-operate with me and is permanently in pain as well as eye sight and balance impairment and random spasms of pain or dysfunction of other parts of the body.
Only a physiotherapist that gives a dam. GP made it clear she doesn't care, won't provide sick notes now CPRS has been diagnosed by consultant so I have no entilement to benefits just CTC to live off with my daughter and spiralling bank debt.
DWP don't care as they do not recognise the disease and my GP has made it blatantly clear its 'In my head'.
NHS idea to help is tell me to get referral from GP to attend clinic in other end of the country!!!! how does that help when I have no money coming in to support my family let alone holiday down south? Even then once they've finished how do they expect me to go on after when I return here wher the GP's won't give follow up support and care because they don't accept such a condition exists.

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poco said on 21 January 2013

If you live in the UK and you get CRPS, you want to hope that you can afford alternative treatment to what the NHS can offer. Without exaggeration my life is worse than I could imagine, and the part that really hits deep is the lack of care and understanding that the NHS has surrounding this disease.

This disease does not just cause the sufferer pain and suffering, it effects those closest to this patient in just a devastating way. It destroys family's, not just patients.

A really key point that is over looked hear is how CRPS pateints tend to have high tolerance to pain medications, and many things that work for other pains will not work for CRPS, this includes morphine.

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SmudgeyL said on 09 January 2013

I much prefer the Wiki page, it is much more up to date and has legitimate references (I checked). I noted:

*CRPS is considered a progressive, systemic disease, said to be neuro-immune.
* The whole body can be effected. (The inclusion of “regional” in the name is misleading, imo)
* Spreads to other limbs are common (70%)
* CRPS rated highest long term problem on the McGill pain scale (42/50)
* The central and sympathetic nervous systems are effected.
* Worrying symptoms like falling, dizziness and fainting are included in the wiki list and should be considered accordingly.
* It is possible to have “cold” CRPS, which is harder to treat.
* “stages” are best conceptualised as types of progression
* Very poor quality of life for some has led to CRPS being sometimes called “The suicide disease”. Please make a big sign with links to suicide prevention. CRPS causes depression and anxiety (there is no evidence of the reverse).
* Clinical features are neurogenic inflammation, nociceptive sensitisation, vasomotor dysfunction, and maladaptive neuroplasticity.
* Lack of awareness of this terrible problem (general public and especially in the surgery) causes much distress (which exasperates the problem as there is limbic system involvement).
*Vitamin C was found to stop CRPS occurrences. Please IMMEDIATELY tell all A & E and orthopaedic staff to advise patients to take the vitamin. (I hear some conjecture as to whether it will help for spreads)
* CRPS rarely goes into remission and cannot be cured.

Given that the whole body is effected I wonder how many patients are erroneously also diagnosed with fibromyalgia.

Pain is of course subjective, but the symptoms of atrophy and dystonia, reddening of limbs and temperature changes are quantifiable.

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Sufferinginsilence said on 28 December 2012

I have been suffering for over 12 years and agree with what harpercat said above in my own experience I mostly suffer from waist down and both legs are so bad most days I can’t touch them something as simple as a cold breeze or water sets my pain level to literally feeling like killing myself. I wont go in to much detail because there are those who read symptoms so they can act it out and gain access to special care and financial gain and I think this is one of the reasons it’s a taboo and a lot of innocent people are miss judged as malingering or putting it on as I was by a consultant. I had a back injury and that was what I have been treated for, over a number of years until every test possible had been carried out but during this time I was also getting worse.
I started on paracetamol and gradually went up in strength because they stopped working I am now on the strongest medication and can’t really take anything stronger but the problem is when I get a surge in pain because I have caught a cold breeze on my legs, for instance nothing can control it. I am now on a steady dose of fentanyl with Oramorph as a top up if needed but I try to fluctuate the dose of Fentanyl so I don’t get used to it.

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harpercat said on 14 December 2012

While I am delighted to see CRPS finally being given the attention it deserves, I am deeply concerned that the very first sentence on this page is misleading. CRPS certainly starts in one limb and indeed may be restricted to one limb. But sadly this is not so for everyone. I, and several fellow sufferers that I know personally, have had the misfortune to have the CRPS jump across to the opposite limb and in every respect be mirrored there, with the pain being replicated in all its many forms and facets. Not only that, it can spread beyond those two limbs and affect others. In my case, I have CRPS in both lower legs and both hands and wrists. It has persisted for many years now. I have always done everything that has been asked of me regarding the Pain Clinic and Physio. Gabapentin is by far the biggest help, and Tizanidine to help with muscle spasms has been a godsend, although I take several other drugs in addition.
Burning pain is just one element of the many different pains and sensations that a CRPS patient experiences. There can be freezing pain, intense pins and needles, electric shocks, numbness, unbearable sensitivity to touch.... the list goes on.

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