Complex Regional Pain Syndrome or CRPS is a multifaceted and poorly explained condition. It presents with a bizarre mix of neurological, musculoskeletal and autonomic elements. The most common of which is intense, debilitating pain.
There are two kinds of CRPS, both are usually triggered by trauma such as an injury or surgery. Type I CRPS results from an injury without nerve damage and type II results from injury or trauma with nerve damage.
Both types of CRPS usually occur in a limb such as a hand or foot although CRPS has been reported in a range of other body systems. Some people recover gradually where others find their symptoms remain the same or even get worse. Once someone has CRPS in one limb their chances of developing it again in another limb (following injury or surgery etc.) are higher than the normal instance of the condition.
Along side the persistent burning pain CRPS presents with a range of other symptoms.
- Sensitivity, the slightest touch or change in temperature can cause intense pain.
- Swelling / Oedema in the affected area.
- Abnormal skin colour, the affected area develops red or purple colouring which often worsens with sensory stimulation.
- Temperature changes and an inability to regulate the temperature of the affected area.
- Hyperhydrosis, extreme sweating in affected areas.
- Impaired motor function, difficulties in moving or weight-bearing.
- Loss of muscle strength, many people with CRPS develop muscle weakness partly due to the nature of the condition and partly due to the limb being used less because of the pain and other symptoms.
- Dystonia, doesn’t affect everyone but some people with CRPS develop tightness and spasms leading to clawing.
- Changes to skin, hair and nails, many people with CRPS develop brittle, ridged nails and shiny, glossy skin and thicker darker hair on the affected limb.
- In advanced CRPS many patients show thinning of the bones on X-rays.
- Dissociation, sometimes with CRPS people don’t feel like their affected limb belongs to them at all.
There are very few accurate statistics on CRPS because many cases are undiagnosed or misdiagnosed. One study claimed that about 1 in 3,800 people in the UK develop CRPS each year. CRPS affects more women than man and the average age of onset is about 40 years old, that sais there are cases reported in children as young as 6. You can find out more about who can get CRPS from Burning Nights
CRPS management is usually multi-disciplinary, rheumatologists, occupational therapists, physiotherapists and pain management specialists to name a few! Drug therapies are also widely used.
There are a few things you can do at home or on the go to help manage symptoms. Always check with your primary care provider before making any big changes.
Firstly, getting a diagnosis isn’t always a bad thing. A Diagnosis has pro’s and con’s. It’s important to realise that labelling your symptoms doesn’t change them, you were dealing with symptoms before they were labelled and you can continue to deal with them after, hopefully a diagnosis also comes with treatment options and coping strategies too.
With any pain condition, pain management skills are essential and not all of them revolve around prescriptions. Many pain management strategies can also be used along side medications. Non-pill-based pain management strategies are particularly effective for people who cannot take pills (such as kids and pregnant people) or don’t get much relief from them.
Living in pain can be exhausting and fatigue can as difficult to live with as pain. Pacing helps to break big activities into little chunks. Pacing can make it easier to live with fatigue and can reduce the severity of fatigue too.
Since many people with CRPS struggle with mobility it’s important to know that mobility aids don’t have to be used all the time. Mobility aids are a tool just like a car, using them appropriately can help manage pain and fatigue. Saving energy through not walking can mean there is enough energy for other essential tasks like work or physiotherapy. Mobility aids, used correctly can massively improve quality of life.
When dealing with a long-term condition it can be difficult to maintain relationships, (my partner and I wrote that post together).
Relationships don’t just extend to partners, I’ve compiled a list of tips to support good therapeutic relationships with health and social care providers too.
While looking after your CRPS it’s important to look after the rest of you too. An individualised approach to fitness might help you do that.
If you’ve been prescribed physiotherapy but you’re struggling to manage your pain and fatigue too then you might benefit from an alternative approach to physio.
With any long-term condition it’s important to get good quality sleep but with CRPS this can be really challenging. Sleep Hygiene can help promote quality, restful sleep.
I hope this information has been of use and I will try to add to the list as and when I can. For further support there are many online CRPS groups like Burning Nights. Their website has lots of information on CRPS including support for sufferers and carers, a blog and a forum!
As always questions and comments are welcome so please get in touch.