An informal international network of CRPS patients

When we find ourselves diagnosed with something we’ve never heard of and our doctor seems to be unable to clearly explain what on earth it is, what do we do? Many of us turn to the internet, but health information online is of variable quality, and even more so when research bounds onwards in new understandings whilst many websites are not updated with this new information.

So what do we do then? Who out there has heard of the condition and has some clue about symptoms, prognosis, the whys and wherefores? How many of us actually get to see a specialist in CRPS? I was diagnosed by a very good limb-reconstruction specialist, and I’ve seen some general pain management teams, but never a CRPS specialist.

Another reason we may look online is for someone, anyone, who understands what we are going through, who can reassure us that we’re okay, that’s it’s not ‘all in our heads‘, and that the sorts of stresses and strains which we are experiencing are common for other patients too.

Of course the nature of the internet means that geographical boundaries no longer restrict who we meet or how far good information can be shared. There is effectively an informal international support network of CRPS patients all helping and supporting each other. And for those of us who find the right groups for our needs and temperament, and the most useful pages with correct contemporary medical information, the effects on us can be positively life-changing.

The impact that this has is that a large number of patients internationally who were previously often isolated and looking for information…. now have access to regular contact and support, and can find research, discuss aspects of the condition, talk about potential treatments and indeed anything that they wish to talk about.

This is one heck of a turnaraound for patient experience.

An ornament on my mantlepiece from one of my beloved international friends, x

I have met some awesome fellow CRPSers who admin’ in support groups, raise awareness, blog and info’-share as advocates for fellow patients. The slower speed we have to work at owing to our health issues never detracts from my excitement at the potential though. How can I not be excited? – I am part of an informal network of CRPS patients who have professional skills in nursing, pharmacology, occupational therapy, alternative medicine (which is especially important to patients allergic to mainstream medicine), nutrition, research, writing, psychology, counselling, ohhhh my goodness this network of awesome and beautiful-souled people is an absolute treasure trove!

We gravitated towards one another because we recognise each other as determined information-gathering/sharing advocates. There’s no formalities here, we’re just people who got to know each other, liked what we found in each other and we often come together to help others.

Some of the people in the network work hard at raising awareness, sometimes that is through social media, or wider media, or through creating and selling awareness jewellery. Others in the network blog and maintain websites. Some carry out research, and others support that research (sending another moment of thanks to my super-coder, who is a CRPS carer, and to my fab’ coding and statistics advisor 🙂 ). Pretty much all of us are involved in admin’ support alongside the other things we do.

Pause for a moment to remember that these people are so terribly chronically ill, with multiple issues across various systems in their bodies. They often are unable to work because they cannot guarantee being able to work at any given time on any given day. So all this wonderful work they do to help others is done around immense pain and often additional challenging issues such as fainting, severe nausea, the understated brain fog (which one of my friends refers to as full-on London brain smog when it gets so bad that we can’t function!) and this means that it can only be done as and when the body allows. Which isn’t very much. So the amount of time that they battle through the symptoms to even just be there for others says a lot about how much it means to them to be able to help fellow patients.

These are truly awesome people.

And they just so happen to be from all over the world.

Modern technology, including the rather handy online translating applications, renders geographical distance a mere annoyance. In fact it’s not so much the network of advocacy which is affected, because that works amazingly across time zones, across language barriers, across cultures and more. No it’s really just the fact that we can’t all meet up for teas, coffees and a face-to-face natter that really bugs us about the geographical distance!

The world appears to have shrunk since I met you all! Other countries now feel like they’re ‘just over there’ instead of a whole world away! It’s a wonderful feeling that we are all coming together like this. My own personal world is very much better for you all being in it. Thank-you, x

The love, the gratitude, the admiration, the respect that I feel for these amazing people is something that lifts me on those days where the health issues are more challenging than usual. They’re out there. Kicking CRPS arse! Making a difference to other patients around the world. And when they’re facing a flare-up day they know that I’m still out there doing what I can, too.

The international aspect is a positive boon as the varying time zones (plus all of us who can’t get to sleep!) means that there’s always people out there.. 24 hours a day, 7 days a week, who support, share information and answer questions – who do whatever they can to help fellow patients online.

My initial mini network of international friends. We still get together for natters on Skype and regularly communicate in group chats online, these are some of my bestest buds 🙂

Initially I was just me doing what I could to help others. Then I met some fellow patients doing the same and I became part of a group of friends doing what we could to be useful. And as time passes the connections naturally build up. We meet other admin’s during our admin’ roles, we come across other bloggers and awareness raisers when we join in with various photo or writing challenges… and so the network keeps growing. Think of all the little networks, and imagine each network having someone who meets an advocate from another informal network… they get to know each other, and maybe some others in each of their networks do to, and before we know it the network has extended.

I adore the advocates I’ve met, we have the same goal in our heart: to help others. That one thing says a lot about our personalities.. so it’s not surprising that we help each other rather than butting heads! This isn’t business, this is heart, and morals, and ethics, and love. And that crosses international divides without missing a beat. The common denominator is helping others, it’s about being human, about caring. And that steps past any differences that we might have in geographical location, or culture, or the type of healthcare system we have in our country, or even language.

Our hearts are aligned, and we put our heads together to be as helpful as we can.

Every one is a lovely caring soul who I am honoured to know.

And if you think gentle souls can’t be determined then think again, because this is a network of CRPS survivors, many for more than a decade already, so we’re more like a group of cupcake baking, fairy-winged terminators! 😉

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Other bloggers in the network posting today, too…

Yes this very day, the 22nd November 2013 🙂 , some of the bloggers in this informal international network are also writing a blog post on the same theme and we’re all posting to our blogs on the same day. 😀 As each of them post their own articles online I shall add the links below for you. As we are in various time zones and working round health stuff the links will become available at different times so I’ll keep popping in to add more links as they become available, x

Representing my fellow patients in the unofficial UK branch 😉

And rather than leave this post solely with UK input from me… there are some quotes below from some wonderful CRPS patients in other countries who wrote a bit to be included in this post between their high pain levels and all the usual deadlines and pressures of everyday life – thank-you to everyone listed below, x 🙂

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Other blog posts on the same theme being posted today…

Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients
Written in both French *and* English, how amazing is this lady?! 😀

Lili in Canada: Love Knows No Bounds

Jo in the UK: CRPS Awareness Month International Blog Post, A Community of Angels 

Christa in the USA: Support of International Community: Why Do We Need It? 
Christa, with RSD/CRPS Doesn’t Own Me, has also teamed up with the RSDSA this CRPS awareness month to raise awareness and also to raise funds for USA patients in need of financial assistance with daily needs, medical equipment and medical costs via the RSDSA Patient Assistance Fund in Honor of Brad Jenkins

Isy in the USA: International group post: Love is portable 

Sarah in the USA: currently multi-tasking, like the superhero that she is, having a Tilt Table Test today. Rest up hon, hope the results are helpful, xx

Suzanne in the USA: Dancing Through The Fire… AND… You’re Gonna Hear “US” Roar! *an International Affair*
Suzy is also raising money for American RSD Hope, for every dollar donated your name goes into a raffle to win her handcrafted CRPS awareness bracelet. You can see more on her Facebook page and her website
And here’s the wonderful American Sign Language accompaniment to Katy Perry’s song that Suzy referred to in her blog post:

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We may well ‘network blog’ on the same day like this again because we all enjoyed getting together to plan this trial run (by the way, we co-ordinated through Facebook, just in case you’re on there 😉 ), so if you’re a CRPS blogger and fancy joining in just drop one of us a line 😀

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Some input from CRPS friends outside the UK:

“Having CRPS can be very isolating, and when you are living in a small populated country like Iceland that can be isolating too. And when you have a rare disease in a small populated country you are not going to meet many people with same disease that you can share your experience with. So meeting people all over the world online and making wonderful friends has really made this CRPS struggle worth it all. My friends all have different experiences, have had different treatments and can share their experience and knowledge. When you are having a hard time then nothing is better than a Skype meeting with friends or a chat on Facebook. Different background, different culture, different country and different treatment can only bring more to the table and give you good advice. I don´t know where I would be at the moment without the social network, it has been the most helpful thing in my CRPS battle, at times more helpful than any doctor, making my battle bearable and it has kept me going.”

.                                                                                             – Jona, Iceland

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“To be part of CRPS groups on the Internet is really helpful for me. After I got diagnosed the doctors here left me alone. No explanations, no help, nothing. Then met all this CRPS warriors online. They helped me through the first time which was really rough. And I know without them I’ve never could have done it. I had so many questions and they’ve been there for me till now. We’re a group. We’re there for each other. I love it. Whenever I need someone who really does understand me I can go to the group and talk to them. They know what I’m going through. I got my stepfamily who are supporting me but they don’t know what I’m going through because they are not experiencing it. But these warriors, they know it. They’re in it too. When I’m talking about my blackouts, my flares. They know what I’m talking about. I don’t have to explain everything. And I met wonderful people there. Even my best friend! I love her! I visited her. Which was wonderful. It showed me that I’m still able to travel even though I payed a big price for it afterwards. But all these friends I met there….I don’t want to miss any of them ever again! I’m not alone anymore!”

                                                                                              –  Noei, Switzerland

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“I am a Scottish woman, who has lived in The Netherlands for 14 years now. I have two amazing little girls, 7 and 8 years old. I am married to an amazing Dutch man (for 13 years now).

October 2010 at work a colleague pulled my chair for under my bottom. Which caused the tendon in my wrist to become detached. I had surgery soon after. However RSD/CRPS had already started.

I have RSD/CRPS type 2 – I have severe nerve damage from the elbow down to my finger tips in my right arm. The nerve damage caused my arm to decompose in 9 areas and has also caused me to spend 12.5 weeks in hospital in 2013 so far. This has an emotional effect on the whole family and friends.

RSD/CRPS is an everyday struggle I have never had pain below a 6/10 in 3 years. This is also due to the fact that I have rebound effect with almost all medicine for RSD/CRPS. I forget most things, I have lists all around my home for nearly everything, I used to have an amazing memory. I have at one point this year spent 2-3 months crying daily, not due to pain but grief over the loss of my life.

Around January 2013 my husband knew I needed more than my own friends and family and pain doctors, I needed to find others with RSD/CRPS who could understand me. I joined an online support group via Facebook, I can say with all honesty the group on one occasion saved my life and on countless occasions help me through the hard times caused by pain. I have made many friends who are also people with RSD/CRPS. We laugh together, cry together and also learn to express what no other person can understand, the emotional and physical pain connected with RSD/CRPS. I have spent time on Skype with others which is amazing, not just because typing is hard but seeing someone helps so much more than typing a message to them.

Without an international community of people with this pain syndrome I would be isolated still, alone, and so would many others. Thank you to you all, you are all strong, amazing, courageous people.

I hope pain management teams can read this blog and reach out to us all. Together we can fight this RSD/CRPS. However alone I feel we may keep struggling, both Doctors and patients.”

.                                                                                             – Joni, Netherlands

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