Dealing with chronic pain
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Recently diagnosed with CRPS, anybody else?

kez19kez19 Member Posts: 8 Listener
edited January 2019 in Dealing with chronic pain
Hi I’ve recently been diagnosed with crps after breaking my wrist last February hi 👋

Replies

  • kez19kez19 Member Posts: 8 Listener
    I’ve been In agony last 7 months since having the cast off I’d love to hear your stories and get some advice thanks x
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @kez19, and a warm welcome to the community!

    I'm so sorry to hear about your pain. We have a few other members who've discussed CRPS here on the community. Tagging in @Wondermum54, and I'm glad to see you've had a chat with @Ghost4287 on your other post too. I hope today's as kind as possible to you!
  • kez19kez19 Member Posts: 8 Listener
  • Wondermum54Wondermum54 Member Posts: 12 Connected
    Hi Kez19
    Oh no! I am so sorry to hear of your diagnosis - CRPS is not something I would wish on anyone.

    I have had it since May 17, post ankle surgery, and it is a real roller coaster ride.

    Oh the plus side you have been diagnosed relatively quickly, as some people go 5 years without a diagnosis which must be horrendous.  

    I wrote a really long reply to Ghost 4287: - most of which I have copied below for you, with a few tweaks.  I am not sure what they have tried with you before so...

    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 - your multi disciplinary team will include your GP, physiotherapist, pain management doctor, OT and possibly a psychologist  :-

    GP
     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.

    Physio
    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.

    Find a good physiotherapist who has treated CRPS before or at least knows about CRPS and who is prepared to learn and work with you. Physiotherapy for CRPS is different from your normal wrist fracture. So ask questions and make sure the physio you are having is correct for CRPS.  We need loads of physiotherapy to try and work with the movement we have left in our limbs, and a relationship of mutual trust is key for this.  Don't be afraid to tell them to stop as pushing through the pain levels is counter productive for us.

    Pain management
    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.

    So you need to be seen and start treatment with Pain Management as soon as possible.  Again, building up a relationship is key, as you will possibly be with them for years.  

    Occupational Therapy
    Useful for home aids to help you so do get them involved -(if they recommend but don't provide the items do shop around. My local mobility shop is so expensive - I have found the same items cheaper on Amazon and Argos!).
     I have a mix of items - some provided and some recommended that I have had to buy myself.   So think about the areas you are struggling with, e.g. dressing, preparing and cooking food etc, so OT can pinpoint where and how to support you. 

    Apps
    I can also recommend trying the Recognise App - helps to try and reprogram our brains. There is one available for hands/arms in addition to the one I use for feet/legs. It is relatively inexpensive and can be put onto a phone, tablet, computer etc, so easily to hand whenever you have a spare 10-15 minutes - often and little is key for CRPS.

    Also apps that help with relaxation are good.  These will help to calm down your nervous system, and hopefully give you some relief on bad days.


    CRPS Service at the RNHRD In Bath
    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 my leg is 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 the  hope that a cure or treatment for us is found soon!).
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