Dealing with chronic pain
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Complex regional pain syndrome

Ghost4287Ghost4287 Member Posts: 13 Connected
edited January 2019 in Dealing with chronic pain
I was wondering if anyone has found an affective way to deal with  Complex regional pain syndrome?

Replies

  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @Ghost4287, and a warm welcome to the community!

    I'm sorry to hear you're dealing with this. From what others have said it sounds like a really tough condition to stay on top of.

    I'm tagging in @Wondermum54 in the hope they can share some insight with you. It may also be worth speaking with the CRPS UK team too.
  • Wondermum54Wondermum54 Member Posts: 12 Connected
    Oh wow Ghost 4287 - we all seem to struggle with an effective way to deal with CRPS and there is certainly no one fit fits all approach to this disease from what have gathered/learnt. And yes, try  the website as they have hints and tips there too.

    If you don't mind could you let me know what you have tried so far?

    My journey started almost 2 years ago now, and my CRPS has been described by more than one specialist as being 'aggressive', and my spread of CRPS was really quick- and so treatments for me have been in line with that.  So loads of different medicines, hours and hours of physiotherapy and 4 spinal blocks later - I had a spinal cord stimulator implanted.  I am early on in the programming side of this - so far I have 2 programmes and whilst I still have pain, it is down from a 12/10 to a 7-8/10 but more importantly my SCS is controlling my spasms which I was having for 4-5 hours per day. So the specialists are hoping that once the SCS is programmed correctly, and together with my medications - I will hopefully achieve more stability in my condition - That's the game plan!

    So my tips for CRPS:-
    Assemble a really good care team - I stick to the same GP at my doctors practise so it avoids explaining everything all the time over and over again, which I find annoying and exhausting.
    I have a good physiotherapist who I trust and see weekly - at present we are working on trying to reconnect my brain and leg as my motor disconnect is severe - so early days on the cognitive approach and it is tiring.
    My pain management doctors - the first one did what he could and then was quick at referring me to another specialist who advised and carried out my SCS. So his team are brilliant and it is good to know there is someone at the end of the phone when I need them.

    I can also recommend trying the Recognise App - helps to try and reprogram our brains. 

    I also pushed for and got referred to the RNHRD in Bath for the residential programme for CRPS, and I can highly recommend this programme. It is really intensive but they go through everything from sleep, pain, medications, pacing, relaxation etc, in addition to hydrotherapy, physiotherapy and if needed psychology.  Also just meeting other people with CRPS who just 'get it' and do the same things as you, e.g.. no one sleeps with the blankets over the CRPS areas, and no-one thinks it odd,  and  the clothing issues.....  So liberating to meet others with it.

    I have come to realise that no one day is predictable or the same for me - so I take it one day at a time.
    I try and ensure I eat good quality food - I don't have much of an appetite and so try and do easy dishes.
    I also ensure I take a good multi-vitamin to ensure my levels are normal as our bodies are constantly fighting the CRPS so any help you can give your body, especially Vitamins C and D. 
    The Bath course and trial and error pre course - has taught me that pacing and listening to your body is key. Pushing through the pain will only result in frequent flares, and crashes. However, pacing is hard and I certainly am still a novice at it.  A frank talk with family and friends needs to take place though - as trying to keep up with them on days out is impossible most of the time. But if they can walk at your pace, and stop for rests when you need them, this will decrease your anxiety about going out and ensure you enjoy the day, even if you only manage 2-4 hours out instead of the whole day.

    Is there anything that helps you relax/rest? - music, distraction, painting, colouring, - it is a matter of experimenting to see what works for you. I use music, films, mainly comedies etc as distraction, and am trying to incorporate relaxation apps into my routine. 
    I have also found keeping a journal where I write in my feelings, observations, and more than one rant at life in general. Whilst I don't write in it everyday - I do find it helps to get my thoughts and feelings 'out'. and no-one but me is ever going to read it anyway!

    Applying heat above my CRPS areas when in a flare and cold helps a little bit.
    Do avoid ice though!

    I have also learnt to listen to my body more - so that pile of ironing can wait...if I am tired and can feel the pain increasing - I take myself off to bed - and even if I don't fall asleep straight away - I am resting my body and can watch something/or read/listen to music etc...

    Try and keep an emergency box for the really bad days with anything in it you feel will help/comfort you, eg. a candle, snack, music, soft blanket or pillow. Phoning a close friend, who will come and keep you company, even if all they do is make you a cup of tea, and sit with you watching a film - even if you nod off. A good friend is worth their weight in gold. Especially if they can treat you like the 'old you' - as we are still there we just need to do things slightly differently, but I like to surround myself with friends who still see 'me' not just my illness. It makes me feel more normal and connected with the world.  Make and freeze some meals so on those 'bad days' you can eat with minimum effort cooking wise.

    Unfortunately CRPS is something we need to learn to live with, and finding out what works for you will be key.  I hope some of these tips have helped. Keep in touch, and let me know if anything worked for you.  

    Gentle hugs and best wishes. (and hope that a cure or treatment for us is found soon!).


  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @Ghost4287
    This information comes from the NHS website:

    Your treatment plan

    Treatment for CRPS involves four main areas:

    • education and self-management – advice about any steps you can take to help manage the condition
    • physical rehabilitation – to help improve your function and reduce the risk of long-term physical problems
    • pain relief – treatments to help reduce your pain
    • psychological support – interventions to help you cope with the emotional impact of living with CRPS

    Some of the main treatments used are described below.

    Self-management

    As part of your treatment, you will be advised about things you can do yourself to help control your condition.

    This may include:

    • education – to help you understand your condition
    • support to stay active and use the affected body part
    • learning techniques to help you manage increases in pain 
    • learning relaxation methods to help improve your quality of life 
    • advice regarding activity management – to help avoid peaks and dips in activity despite pain
    • continuing rehabilitation treatments at home, such as desensitisation techniques (see below)
    • accessing any support groups in your local area

    Read more advice about living with pain.

    Physical rehabilitation

    Physical rehabilitation involves a number of different treatments.

    The aim of these treatments is to gradually allow people to increase their activities and function without making the pain worse. This can be difficult as any movements or stimulation of the limb will increase pain or the other symptoms of CRPS such as swelling, colour changes and sweating.

    If exercise or therapy is pushed too hard this can aggravate the condition so it's important for your therapy to be delivered or supported by a therapist with experience of CRPS.

    Some of the techniques that may be used as part of your physical rehabilitation programme are described below.

    Exercises

    Your exercise plan may include a range of gentle exercises, from simple stretches to exercises in water (hydrotherapy) or weight-bearing exercises.

    Desensitisation

    Desensitisation is a technique used to reduce the sensitivity of body parts affected by CRPS.

    It usually involves touching an unaffected body part, close to the affected body part, with materials of different textures, such as wool and silk, and concentrating on how this feels. The same materials are then gradually applied to the painful, affected body part while trying to recall what it felt like when you were touching the unaffected body part.

    This process is likely to be uncomfortable or painful at first, but it may eventually reduce the sensitivity in the affected body part so it's more similar to unaffected areas.

    Mirror visual feedback and graded motor imagery

    Performing movement can often be difficult, as information which the brain needs to perform movements is often missing or confused.

    Several techniques, such as mirror visual feedback and graded motor imagery, aim to improve movements by retraining the brain in respect to these missing or confused bits of information.

    Pain relief

    There are several medicines that may help to treat CRPS, which your pain specialist will be able to discuss with you.

    Your treatment team will try lower-strength painkillers first, and will only use stronger painkillers if necessary.

    None of the medicines used to treat people with CRPS are licensed for this use in the UK. This means these medicines may not have undergone clinical trials to see if they're effective and safe in treating CRPS specifically.

    However, these medications will have a licence to treat another condition and will have undergone clinical trials for this. Doctors may choose to use an unlicensed medication if they're thought to be effective and the benefits of treatment outweigh any risks.

    Some of the main pain relief treatments are discussed below.

    Non-steroidal anti-inflammatory drugs (NSAIDs)

    The first painkillers often used to treat CRPS are over-the-counter painkillers called non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen.

    These medications can help reduce the pain caused by the injury that triggered CRPS. They can also treat CRPS-associated pains, such as muscle pain in the shoulder when the CRPS is in the hand. However, NSAIDs are unlikely to directly reduce CRPS pain. 

    Anticonvulsants

    Anticonvulsants are usually used to treat epilepsy, but have also been found to be useful for treating nerve pain. Gabapentin and pregabalin are the most widely used anticonvulsants for treating CRPS.

    Common side effects of these medications include drowsiness, dizziness and weight gain. There's a small increased risk of suicidal thoughts, which may be seen as early as a week after starting treatment.

    You should avoid suddenly stopping treatment with these medications, because you may experience withdrawal symptoms. If you feel you no longer need to take it, your GP will arrange for your dose to be slowly reduced over a period of at least a week.

    Tricyclic antidepressants

    Tricyclic antidepressants (TCAs) were originally designed to treat depression, but like anticonvulsants were found to be effective in treating nerve pain. Amitriptyline and nortriptyline are the most widely used TCAs for treating CRPS, although nortriptyline generally has fewer side effects.

    These medications can often improve sleep, and are generally taken in the early evening, to reduce the risk of "hangover" effects the next morning.

    Possible side effects include:

    • dry mouth
    • blurred vision
    • constipation
    • heart palpitations
    • difficulty urinating

    You may experience withdrawal effects if you stop taking these medications suddenly. If you feel you no longer need to take TCAs, your GP will arrange for your dose to be slowly reduced over a period of at least four weeks.

    Opioids

    If you're experiencing severe pain, opioids such as codeine and morphine can sometimes provide pain relief.

    Common side effects of opiate painkillers include:

    • nausea and vomiting
    • constipation
    • dry mouth
    • tiredness
    • cognitive problems (thinking processes can be slower)

    Long-term use of high doses has been linked to more serious problems, such as depression, absent periods in women, and erectile dysfunction in men.

    The benefits of using opioids may sometimes outweigh the risks, but unfortunately these medications are often not very effective in CRPS. Long-term use of high doses is generally not recommended, although exceptions may be made in a small number of cases under the care of a pain specialist.

    Although addiction is rare, there's a risk you may become dependent on opioids. This means your body and mind don't want to stop taking them, even if they're not very effective. You may feel worse for a limited period of time when you do reduce or stop taking them.

    Spinal cord stimulation

    If medication doesn't lessen your pain, a treatment called spinal cord stimulation may be recommended.

    This involves having a device placed under the skin of your tummy or buttocks, attached to a lead placed close to your nerves in the spine. This device produces mild electrical pulses that are sent to your spinal cord.

    These pulses change how you feel pain. You may feel a tingling sensation in the part of your body that usually hurts, which masks the pain. The level of stimulation can be adjusted as your pain improves or gets worse, and the device can be removed if necessary.

    The National Institute for Health and Care Excellence (NICE) states that spinal cord stimulation should only be considered if:

    • you're still experiencing pain after six months of trying other treatments
    • you've had a successful trial of the stimulation – the trial only involves placing the leads, not implanting them

    Your care team will discuss spinal cord stimulation with you if they think it could help.

    Psychological support

    Living with a long-term, painful condition can be distressing, and people with CRPS may experience psychological problems, such as anxiety and depression.

    It's important to look after your psychological wellbeing, because feelings of depression and anxiety can interfere with your rehabilitation.

    Psychological therapies can also be useful in helping you cope better with the symptoms of pain. For example, some studies have shown that cognitive behavioural therapy (CBT) can help in the management of long-term pain.

    These therapies are often taught to small groups of patients with severe pain, together with rehabilitation techniques, in programmes called "pain management programmes" (see below).

    The aim of CBT is to help you understand how your problems, thoughts, feelings and behaviour can affect each other. By discussing and altering how you feel about your condition, CBT can help you cope with your symptoms and make it easier for you to continue with your rehabilitation programme.

    Your care team

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

    • a physiotherapist – who can help you improve movement and coordination
    • an occupational therapist – who can help you improve the skills needed for daily activities
    • a pain relief specialist – a doctor or other healthcare professional trained in pain relief
    • a psychologist – a specially trained mental health professional who can help manage and understand some of the emotional impact association with long-term pain
    • a social worker – who can provide information and advice about extra help and services 
    • an employment adviser – who can offer support and advice to you and your employer to help you stay in, or return to, work
    • your GP – who can coordinate your care

    These professionals may work with you either individually, or jointly in "Pain Management Programmes" (PMPs). PMPs aim to support you so that you can manage the impact of pain on your life, even if the pain intensity can't be reduced.

    Scope
    Senior online community officer
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