Category Archives: Action needed – help now!

CRPS discussed in parliament yesterday – UK sufferers this concerns you!

Just a quicky post to ask any UK CRPS peeps to take a look at the link below (you’ll need Windows Media Player I think but try it anyway).

Yesterday an online acquaintance who some of you may know, Kev, managed to get his words heard in parliament thanks to his MP Ian Stewart.  This was a really positive moment for UK CRPS patients as it has highlighted the need for more funding into research and diagnosis.  I really would recommend you watching it for yourselves as I don’t feel I will do it justice, however I will come back to this post and bulletpoint a few pertinent points made once I’ve re-watched it with a notepad.  The CRPS subject comes up at about 2hrs 19 minutes into the video. Please share!

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=13533&player=windowsmedia

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UK chronic pain sufferers – is your voice being heard? Rise Above Pain!

Well, it has come to that point where my musings about living with pain have become a more pressing need to share information on CRPS and chronic pain, not just because I keep coming up against brick walls, but because I am watching others go through the same.

Doctors who are not current in their knowledge of CRPS (“It’s just a label”, “It can’t be treated”, even “What is CRPS?”) and/or their treatment of chronic pain.  Patients having to go from doctor to doctor until they (if they are lucky) find one that “fits”.  People like myself looking for a UK CRPS support/information group who will support them and get their voices heard.

There are some fantastic CRPS/RSD groups in the US, Australia, Canada and the likes, and yet over here I have only found groups that have closed down.  The groups abroad are willing and happy to support us but we have very little in the way of support and advocacy/education here in the UK.

So, after making sure I wasn’t going to be treading on toes and after a positive response to my contact with my MP regarding the UK situation for chronic pain sufferers, I have decided to take Rise Above Pain to the next level and evolve it into a UK group pushing for education on CRPS (and other conditions should I get the feedback/support from others) and fighting for our rights right here in Britain.

I am hoping to find UK sufferers/carers to help me get this off the ground – until then I will keep blogging away and set up a small forum for us to share our thoughts.  Perhaps a Facebook page?  Let me know what you think.  From now on Rise Above Pain will get you heard.

Complex Regional Pain Syndrome – what it is and how patients can help educate NOW.

Well – who got Easter eggs?  No chocolate eggs for me this year, boo hiss.  Hope you all had a great Easter.

Following my much anticipated trip to the neurosurgeon on Saturday (30th March), I have the relief of having been diagnosed with a pain disorder called Complex Regional Pain Syndrome, or CRPS for short.   Relief?  Yes relief – I have waited so long for an answer to why I have chronic pain.   It’s not all in my head, I told you so!  I’m sure the negativity will hit me soon, but then it’s not like I didn’t have the pain before Saturday!  As CRPS, although not rare, is relatively unheard of, even by many doctors throughout the NHS, I wanted to share with you what I have found out about it so far.  Bear with me on this one as I am new to it too!  If anyone would like me to add to this or amend it, please let me know.  I’ll include a list of links at the end if you’d like to read more.   As a side note, I would also love to hear from other people with CRPS.  

CRPS was previously known as Reflex Sympathetic Dystrophy (RSD) and historically labelled as causalgia (from the Greek words for heat and pain), Sudeck’s Dystrophy and Hand-Shoulder Syndrome.   Not a lot is known about this condition, other than that it often arises after an injury or surgery (most commonly in a limb, but can start anywhere in the body) and causes a variety of symptoms, the main being chronic intractable neuropathic pain (such as burning sensations), often making the gentlest touch incredibly painful.  Other common symptoms include skin, nail and hair changes in the area affected, differences in temperature/colour of the area, and swelling.   Sufferers don’t necessarily have all of these symptoms, and commonly CRPS is progressive.   The psychological result of the chronic day in day out pain and lack of sleep is often depression, understandably.   There are many more symptoms that are associated with CRPS, but I won’t drag it out into a huge list (see links below for more info).

The important thing to mention is that early diagnosis and treatment is absolutely imperative – treatment within the first 3-6 months gives the best chance of recovery, with full recoveries after a longer term being very rare.  CRPS is generally considered a lifelong illness in cases where patients have had long term chronic pain of 2 years+, although in these cases patients can go into remission either spontaneously or through various treatments.   CRPS is most commonly treated with a multi-centred approach, often using drugs or epidural nerve blocks to target neuropathic pain, physiotherapy to aid movement in the effected area and psychotherapy to address psychological and social needs.   This psychotherapy is believed to be very important in longer term cases where acceptance of chronic pain as part of life and pacing skills are considered crucial.

I found this video on a pain forum, which goes into the pathways of neuropathic chronic pain in decent layman’s terms – it’s really well worth watching, and not boring at all.  While it doesn’t mention CRPS by name, that is what Chandler suffers from and the information is pertinent regardless.

I will post more in future about CRPS itself and how it effects people in the future, but in the meantime I think it’s really important to publicise this condition.   Most of the charities and support for CRPS/RSD sufferers is US based and more frighteningly, there is very little knowledge of CRPS within the NHS itself.   It is really important that the message gets out about it.

According to figures published in a May 2012 paper by the Royal College of Physicians, there are potentially 480,000 sufferer of CRPS in the UK alone, and in stark contrast only 20,000 have actually been diagnosed.  Early diagnosis is crucial, as I mentioned before, so it’s important to get the word out.

I spoke to a gentleman on a pain forum recently who has been in touch with his local MP to ask for discussion on CRPS within parliament.   His MP, Ian Stewart, is going to ask for a debate in parliament “after Easter”, and he is asking CRPS sufferers to contact their MP and ask them to get in touch with Mr. Stewart and support him – the more MPs that are aware beforehand, the more likely it is that parliament will sit up and listen.   I’m going to beg you now to please write to your local MP (make sure they cover your constituency or they will not be able to help) and tell them about CRPS, send them some links from the list below, and tell them about the RCP numbers above.  Ask them to support Ian Stewart in his call for a debate.   I and many other people would very much appreciate the support!

In the meantime, if anyone finds a current UK based, CRPS-specific charity or support group, please let me know.   I’ve been looking all week and can’t find any that are still active.   I am very interested in gathering a bit of momentum for CRPS support and education in the UK.

More information on CRPS can be found at the links below:

Patient.co.uk Information on CRPS

American RSD Hope

Reflex Sympathetic Dystrophy Syndrome Association – USA

CRPS Patient Leaflet (aimed at inpatients) – Bath Centre for Pain Services, UK