So last time I updated you, I was talking about the big A, acceptance. That’s still something I am monitoring, as you know I have mixed feelings on it. I do think acceptance is bandied around a bit as an excuse not to bother trying by doctors who don’t or don’t want to understand CRPS and chronic pain in general. Scary when it’s your pain clinic consultant! That said, I’ve had to broach my CRPS in various circumstances recently and on reflection I do think acceptance is something I can hack, well a bit.
One example is my eye test this week – I lost my glasses a while ago and at my last test had been told I “MUST WEAR THEM AT ALL TIMES!!!”, so avoiding the situation wasn’t an option. Part of the eye test involves the optician asking about current medications and health concerns, and I couldn’t really get around this without having to mention the opiates and CRPS. On sharing this, with a cringe, I got the overt sympathy response from the optician. “Oh you poor thing, I could never cope with that, it must have ruined your life”. I don’t know whether it’s my aversion to any kind of pity or being a Brit, but my usual go to response of a bit of self-deprecating humour came out. I don’t want to be a “big deal”, I don’t want CRPS to be getting all the attention when I have gorgeous big brown eyes that need checking out. I played it down, “It’s no biggy, everyone’s got problems and at least mine get me the good stuff!” Is this another step in acceptance? Possibly. I do think I am becoming obsessed with that word now and not in a good way. *spits*
Now ACKNOWLEDGEMENT is an issue I can sink my teeth into. That’s empowering, but can be the polar opposite of my stiff upper lip when I focus on why others aren’t acknowledging my pain, symptoms, story, right to be listened to. I think this was a greater issue that came out of that recent pain clinic appointment. I wasn’t acknowledged. Noone wants a fuss made over them (although it’s my birthday today, so you can go for it this once lol), but how do we balance avoiding the pity trip (whether from ourselves or others) with enough acknowledgement of our issues and what is important to us? Too few doctors acknowledge CRPS as an illness, I’ve already met a couple in person who see it as “just a label”, and I’ve met more who think life is better without a diagnosis or label at all. Perhaps that’s the case, but how does our pain get acknowledged for services such as benefits without that? We get seen as moaners, people who “just have a bit of a bad back”, that kind of thing. We need that acknowledgement to open doors that help us through in life. It’s a fine line, I know, but it can make all the difference. It’s all very well saying we don’t need a diagnosis psychologically, but people are different, what they need is individual, and socially/support-wise many of us do really need a label just to get the help we need.
The last A is advocacy – who has our back? Not the government at the moment, who are stripping the weakest in society of their benefits. Some of us have great doctors who are tuned into what they need, and others of us feel left out to dry. I’ve been struggling with my pain clinic this month. As some of you will have read, my consultant got me out of the door by promising me a place on a pain management programme “within a month”. This consultant runs the PMP, and is well aware of any waiting lists. I was stunned and my husband was cynical of the promise but got direct answers that left no uncertainty – I would have a letter within a fortnight, and a place to start within a month. Nothing there to be misunderstood. When I didn’t receive a letter, I rang the secretary – and I might be paranoid in pointing out at this point that she has told me previously that she has called ID on her phone. Four calls over a week were answered by another doctor’s secretary who shares the office but not the phone line. Each time I was promised a call back within the day, not one time did I get one. I caved and rang back, to be scoffed at by my doctor’s secretary and told it will be “months and months” before I even heard about the PMP, never mind get a place. When I explained what had happened in the appointment I was told I must be mistaken, but she would speak with my consultant and ring me straight back. Did I get a call back? Did I heck as like. Another call for help regarding severe new symptoms and possible rapid spread of the CRPS has also been ignored despite the other secretary passing the message on that in her view I needed urgent help. Still waiting, a week on. On a side note, my consultant’s secretary is not the only one with caller ID and I have not missed any calls, never mind one from her office. So advocacy is not something I have there.
I have however used the Patient Advice and Liaison Service (PALS) in the past and intend to do so again on Monday. I also finally have the acknowledgement of my GP now my diagnosis is in writing and he is finally working with me in getting things sorted. This has involved the GP going over the pain clinic’s head by referring me directly to the Spinal Chord Stimulator neurosurgeon that the pain clinic refused to do. It may well also involve a referral to a new pain clinic as I believe the relationship with my current one has irrevocably broken down due to their continuing lack of communication, acknowledgement and support.
Another part of the advocacy issue is that I have received a response from the Secretary of State for Care and Support to my letter to my MP. I will get it scanned and uploaded at some point when I work out how best to do that. Check out previous posts on how you can get the government to listen to us. The Rise Above Pain blog will be moving to a new level in advocacy for CRPS and chronic pain sufferers, I intend to get the ball rolling with a support network and advice packages, and also get some education on CRPS out there to those who can genuinely make a difference.
So that’s where we’re at. I’m going to keep pushing for support while not giving in to self pity, which is something I really cannot stand in myself. CRPS can take my nerves but it can not take my often ridiculous sense of humour or determination not to “give up”. If there are people like me in the UK who want to get this moving forward, please pipe up!
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.
Suzanne is one of our US followers and has RSD/CRPS. She also has a real talent for jewellery making and this is a post about her awareness jewellery, with a link to her web shop. I would highly recommend that our readers have a visit as her jewellery is just gorgeous. I keep looking and wishing I could buy the lot!
Edited to add: Suzanne has let me know she ships her gorgeous jewellery internationally, and makes awareness jewellery for all sorts of causes, not just CRPS. xx
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: