Frequently Asked Questions
I am living with CRPS. Could I be more vulnerable to COVID-19 (coronavirus)?
Many patients with CRPS may be worried regarding their vulnerability to COVID-19. There is no evidence of any specific vulnerability for patients with CRPS or chronic pain. However, we advise that all patients with CRPS follow the Government guidelines on social distancing and frequent hand washing diligently. The guidance changes daily so check the Public Health England website for current advice - https://www.gov.uk/government/organisations/public-health-england
The Physiotherapy Pain Association have provided a list of useful resources you may find helpful to look at during this period when access to healthcare provision is limited due to the COVID-19 response. Please click on the following link to access: https://ppa.csp.org.uk/content/links
What should I do if I think I have CRPS?
CRPS can present with a number of symptoms affecting the limb including intense pain, skin colour changes, altered temperature and limited movement. These features are shared with a number of other conditions and it is therefore very important to get the diagnosis confirmed. Your GP or fracture clinic may refer you to other specialities for this confirmation, such as orthopaedics, rheumatology, pain medicine and neurology.
Why have I got CRPS?
We do not know what causes CRPS. It most commonly occurs after injury to a limb such as after a fracture, surgery, or a soft tissue injury such as a sprained ankle or wrist. However, it can also occur spontaneously, without any obvious trigger. Research suggests that some factors may increase the risk of developing CRPS. Examples are a history of asthma, previous longstanding pain, headaches, migraine, your genetics, or prolonged immobilisation of a limb. It is also more common in women but, again we do not know why.
What treatment should I be receiving if I have been diagnosed with CRPS, as I have heard that if I don’t get my treatment early then I will not get better?
Prompt diagnosis and treatment is best practice however treatment can be beneficial at any stage of the condition. Treatment aims to improve or restore limb function and relieve pain. There are four main treatment approaches; physical rehabilitation (such as physiotherapy or occupational therapy), pain relief by medication, psychological treatments and information to support you in managing your CRPS. If you have symptoms that are not improving over time, or getting worse then you should return to your GP to ask for further advice.
Is there anything else that I or my GP can be doing to help me recover?
There are national guidelines to help health professionals access the best advice and treatment for you. Originally published in 2012, a revised 2nd edition has been published in July 2018. Your GP may not have seen many people with CRPS and it can be helpful to mention the guidelines to your GP – please click here to download a copy of the guidelines.
How long will CRPS last?
Prompt diagnosis and early treatment are considered best practice in order to avoid secondary physical problems associated with disuse of the affected limb and the psychological consequences of living with undiagnosed chronic pain. Most people recover well within a year, however, some people have some or all of the symptoms for many weeks, months or even years.
Will I get CRPS again if I have another injury?
There is no evidence that a previous episode of CRPS is a risk factor for further episodes. If you have a further injury there is some evidence that taking daily Vitamin C (500mg, immediately at the time of surgery/injury and for about 45 days) can reduce the risk of CRPS development. It is a relatively safe supplement with no major side effects, is inexpensive and easily accessible. Keeping as active as possible using your affected limb with the rest of your body as normally as possible is also important.
Should I use my limb if it hurts?
It is perfectly normal to try and avoid pain by stopping an aggravating activity or moving in a way which makes it more comfortable. Unfortunately, over time our body adapts to this abnormal movement and altered function in an unhelpful way. The musculoskeletal system is affected: e.g. some muscles become weak and others overused and tight, bones may become weaker. Our nervous system is also affected: some nerves become over sensitive, nerves become tight, our ability to initiate and control movement may become affected. There can also be changes in your brain which lead to you feeling differently about your painful limb or feeling as though it is not a part of you.
These changes can all drive your pain condition and exacerbate your symptoms leading to an unhelpful cycle. By trying to move your limb and moving as normally as possible, even when it is painful you will be helping to reduce the changes listed above. You should be mindful of maintaining good quality movement, either when performing an exercise, a functional task during the day or simply when walking. Using breathing and relaxation techniques can help you to do this more effectively.
Can you recommend places where I can find more information about CRPS?
The ‘useful links’ section of this website will direct you to some recommended sources of information.
Does CRPS run in families?
There is no clear evidence that CRPS runs in families.
How can I access health professionals with an interest in CRPS near to where I live?
The ‘services in your area’ section of this website will direct you to health professionals with an interest in CRPS nearest to your location.
Where can I find resources to make my daily activities easier?
People often ask for advice on using daily living aids to help manage tasks more easily. It is important to use these aids in a way which will make it easier for you to involve your limb in a task. It can be tempting to use an aid rather than involving your limb e.g. by doing tasks one handed or avoiding putting weight through both of your lower limbs, but involving your limb in daily tasks despite pain is essential for managing CRPS effectively.
The range of daily living aids and equipment can often seem overwhelming and we recommend an assessment by an Occupational Therapist who can be accessed via your GP or local council. Alternatively, you could visit your local Disabled Living Centre to try out different aids and pieces of equipment. Talk to your Occupational Therapist about the importance of using aids to help you to continue using your affected limb in tasks, or be mindful of this should you choose to purchase your equipment privately.
Does CRPS cause increased sensitivity to the sun?
There is no evidence of this, so the best advice is to follow general sun safety guidelines. Use sunscreen with a sun protection factor (SPF) of at least 15 – the higher the SPF, the better. Reapply sunscreen regularly and after being in water. Try and spend time in the shade during the hottest part of the day (between 11am and 3pm) and cover your skin if possible.
Can I become pregnant when I have CRPS?
There is nothing in published literature to suggest that CRPS in itself will be affected by or affect pregnancy or delivery, but there are some factors to consider before conception. Some medicines used to treat CRPS can have a harmful effect on your developing baby and so discussion with your doctor is essential before you think about trying for a baby. With support from your doctor, the aim should be to take as few medications as possible during pregnancy. This does mean that pain levels are very likely to be higher and increasing weight will undoubtedly put added strain on women with lower limb CRPS. Some women report CRPS temporarily improving during pregnancy but no research has been conducted on this. It is also important to discuss with your doctor/ midwife any additional support you may need during delivery or after the baby is born. It is likely that women with lower limb CRPS will find lithotomy poles very uncomfortable if required for delivery and would dislike touch of any sort to their leg during this stage of pregnancy. People with CRPS are very likely to need additional assistance with the care of their new-born child in the early stages until they have found ways in which they can manage the usual daily tasks independently. Further useful information and papers can be found on the RSDSA website, which can be accessed by clicking on the following link http://www.rsds.org/researchlibrary.html#Pregnancy
What is the law relating to medications and driving?
From 2nd March 2015 there is a new law that relates to driving after taking certain drugs (including some medicines) in England and Wales. This law states that it is an offence to drive with certain drugs above specified blood levels in the body, whether your driving is impaired or not. The law includes illegal drugs such as cannabis and cocaine. However, it also includes higher limit levels of morphine or opiate/opioid based medications, diazepam, clonazepam, flunitrazepam, lorazepam, oxazepam, temazepam and methadone. The majority of patients that are fit to drive and are taking medications as directed are unlikely to be above the specified limit and would not be committing the new offence. If you are unsure how the change will affect you, talk to your GP or a member of the pharmacy team. For more information, visit the website www.gov.uk/drug-driving-law.
I am interested in taking part in a Network Registry research study – how do I do this?
In order to be eligible to take part in one of the research studies, you will need to be registered as a patient with one of the Network Registry collaborating centres. If you are registered with one of these centres, please contact your consultant in the first instance.