Posted on June 18, 2012; Last updated May 7th, 2014
There are four sections below:
General (including chronic pain and autonomic testing, which overlaps these conditions)
CRPS (Complex Regional Pain Syndrome)
Dysautonomia (autonomic dysfunction)
Hypermobility / EDS (Ehlers-Danlos Syndrome) . .
. – just scroll down to the section(s) you need, x
(NB: More links get added to over time so please do feel free to let me know of any others that you think should be included in this list to help other patients, xx)
What info’ to take to your doctor:
Documentation – a picture’s worth a thousand words: part 1 of Isy’s documentation post
Documentation – Long Time? – Timeline!: part 2 of Isy’s documentation post
Documentation I use: A brilliant and accessible page of information by Problem Childe Productions about what to take to your doctors. ***Highly Recommended***
What I take with me to my doctors appointments
Your own medical notes:
Always get copies of your hospital notes
The Red Pen Technique (dramatic music, please): A brilliant article by a fellow CRPS patient, blogger and nurse about how to take charge of your medical care. There are also references to healthcare systems which are insurance-based and a note that this info’ that you create can be used in court to help your case.
For friends and family (there is also a CRPS specific article in the “CRPS” section further down this page):
23 tips for supporting a partner with chronic pain, by Pete Beisner: Written by a husband whose wife suffers from chronic pain. A rather wonderful piece. The only footnote I would like to add in advance is that it would be best to ignore the mention of using ice to relieve pain as that can be a dangerous thing to do in CRPS (see the ‘What is CRPS?‘ page for more)
Looks Can be Deceiving – Understanding What’s on the Inside, Despite What You See on the Outside: An article about how people often do not realise that illness can be invisible to the eyes of others because it is internal. From the Invisible Disabilities Association.
16 points to consider when reading medical research: written by a blogger with Dysautonomia who used to read and write research as part of her job, and now reads research as part of her expert patient ‘job’. Yep, she knows her stuff! 🙂
Coping with Pain: how people who cope really well do it
Dealing with Flare-ups: a great article on ways of dealing with pain flares
Elle and the Auto Gnome page on Facebook: where I post links to new posts on the blog, as well as other snippets, links and sillies I come across in my internet wanderings, x
Elle and the Auto Gnome on Pinterest: where I post various blog pictures in case it is useful for you to access some of them there, e.g. the McGill Pain Scale. (The fun pic’s as well as the useful pic’s are posted on there)
Exercise for chronic pain: A great insight into why the ‘pacing’ of our daily activity can help to reduce our baseline pain level, x
Fibromyalgia Association UK (FMA)
Finding out who my real friends are: written by fellow CRPS blogger
Gabapentin (Neurontin): some unbiased information about this commonly prescribed drug
McGill Pain Index, CRPS and Fibromyalgia
Migraine Care and Prevention: Some Alternative Options
Neuro-vascular autonomic consultant in London: Information about the autonomic testing experience
On sleeping despite all this: some great tips from a CRPS patient with oodles of nursing experience
Pain is what they say: an excellent article on the view of the patient’s pain (and that the pain is as bad as the patient says it is), from the point of view of the patient, the caregiver and nurse
Pain Toolkit: A good introduction to several tools to help in coping with chronic pain
Resolving conflicts when a partner is chronically ill
Spoon Theory: A very handy way to explain to others why we can only do so much each day.
SSRI stabilisation effects on the autonomic nervous system, and my muscle tension side effects: About the link between SSRIs (used as anti-depressants as well as for pain and for autonomic stabilisation) and jaw pain / clamping etc
The weirdest thing about my health…: a post about the variability issues that others often do not understand
Acute pain, chronic brain and naming this ratfink disease: Here’s some information on the names over the years for this condition, the suggestions for separately defining acute and chronic CRPS make perfect sense to me regarding the development in understanding during recent years thanks to the research literature published.
Adapting to Life with CRPS: A booklet by Dr. Karen Rodham (2010) who is part of the internationally renowned team in Bath in the UK. It is aimed at patients who attend the in-patient programme but useful for all of us, especially when we’re pretty new to CRPS.
(2014-02-19 – This link appears to be playing up at the moment – trying to find another link to get you this info’, x)
Complex Regional Pain Syndrome: Free pamphlet on CRPS from the National Health Institute (which is actually pretty good 🙂 )
Free pamphlet on CRPS from the National Health Institute (which is actually pretty good J ):
CRPS UK Guidelines: These were released in 2012 and the document has plenty of info’ that may help you to educate your doctor, or any other practitioner. The scope and purpose is noted as follows… “To provide guidance on the diagnosis, prevention and treatment of complex regional pain syndrome (CRPS) in adults, in a variety of clinical settings. The guideline addresses the diagnosis, prevention and treatment of adult patients with suspected or diagnosed CRPS in both primary and secondary care. The guideline is for use by all healthcare professionals involved in caring for patients with CRPS or suspected CRPS. This includes general practitioners, hospital doctors, nurses, physiotherapists, occupational therapists and psychologists in primary and secondary care.” Just click on the option to download the guidelines PDF and it will open the document for you to save it to your computer and/or print it off.
CRPS info’ wallet card: a handy card that you can print off so that on bad days you just don’t have to find the words yourself to explain CRPS to people, x
CRPS patients and dentist appointments: List of information for our dentists (applies to fellow Dysautonomia patients, too)
Elliot Krane: The mystery of chronic pain (2011): A You Tube video by Paediatric Anaestheologist (and director of Pain Management Services at Lucile Packard Children’s Hospital at Stanford) about neuropathic pain. Well worth a watch.
Letter to families and friends of CRPS patients: on the ‘American RSD Hope’ website.
McGill Pain Index, including CRPS as well as ball-park scores for Fibromyalgia and Ankylosing Spondylitis: Also includes a brief explanation regarding how the McGill Pain Index can be scientifically useful despite pain being subjective.
Pain rating scales that describe reality: An article on creating more meaningful and personalised pain scales to help you explain your experience of your condition and how it affects your life. I suggest creating your own based on the frameworks described in this article, for use particularly in medical discussion with practitioners. (Once your pain scale exists it would be a great shorthand for you to use for your loved ones to understand where your pain is ‘at’ in any moment that you need to convey it), xx ***Highly Recommended***
And if you want to print off a version to show a medical practitioner: print off this version which has been written specifically for clinicians: Pain rating scales must describe reality, or they are meaningless.
So you’ve been diagnosed with RSD and/or CRPS… what now?: This post is truly awesome! The author is currently writing a book about treatment of chronic pain and has lived with CRPS for 14+ years herself. In this post she covers all the basic need-to-know points, complete with links to other sources for further information too. **Highly recommended**
Handy Research papers that might be helpful for your doctor
Coderre, T.J. (2011) ‘Complex Regional Pain Syndrome: What’s in a Name?’ This is my second favourite research paper for helpfully bringing up to speed those doctors that have been out of the loop. It talks about the history of CRPS, how the RSD route left some aspects by the wayside that are now coming back into modern research. And that this is helping to amend understanding. Admittedly CRPS really deserve the ‘C’ for ‘Complex’ in it’s name, but this is still a handy paper as most research papers are about one tiny part of the condition, I very rarely come across one that gives a good general overview. The paper ends with notes on what some of the modern research is looking into. It’s easy to read, covers lots of aspects, points out that an RSD view is soooo outdated (very helpful when we are faced with a doctor who is unaware of more recent progress in the understanding of the condition), and it saves pulling looaads of papers together to say the same stuff. Very helpful.
Schwartzman, R.J. (2012) ‘Systemic complications of complex regional pain syndrome’ This is my favourite research paper for bringing doctors up to speed. Robert Schwartzman is one of the leading experts in CRPS, so he really knows his stuff. If your CRPS has resulted in more widespread autonomic dysfunction then this is the paper to wave at your doctor if he doesn’t quite get it! Don’t forget that this paper (as anything talking about other aspects that can occur with CRPS) is talking about all the things that can happen across a broad patient base, each of us is different and may have different symptoms and experiences, so do not ever ever read a paper like this thinking that they’re all something that you will have to deal with. Many CRPS patients retain CRPS in one limb only without spread, and those of us who do develop other aspects have certain issues within our body, so papers like this cover all of us and all of the things we each have to deal with. They’re all collected together so our doctors can get the broader picture. Schwartzman talks about possible aspects such as cognition, the structure and function of the brain, inherent structure and wiring of the body, cardiac and respiratory aspects, dysfunction of autonomic (automatic) processes in the body, sleep issues, neurogenic edema, musculoskeletal issues, endocrine and dermatological aspects, urological and gastrointestinal dysfunction. So if your body happens to have some hassles with one of these and your doctor isn’t convinced it’s related to CRPS, feel free to follow the link to print off the paper so he can weight up the whole picture. If you follow the link… click on “Full Text” which is in orange typeface just below the article title on the left hand side – this will give you access to the whole paper, x
(footnote so I don’t forget – Robert Schwartzman retired 30th June 2013, as per letters sent out to his patients at the time)
Smith, J.A., Karalis, D.G., Rosso, A.L. et al (2011) ‘Syncope [fainting] in complex regional pain syndrome’ This paper has been jolly helpful to me for two reasons, a) it explains to any unaware doctor that fainting really *can* result from CRPS (particularly if the CRPS is in the legs), and b) that CRPS can result in other autonomic issues, which some doctors sadly just don’t realise at all.
van Rijn, M.A., Marinus, J., Putter, H. et al (2011) ‘spreading of complex regional pain syndrome: not a random process’ Another helpful paper when we are faced with a doctor who is unaware that CRPS can spread. (The link should also open up an additional window in front of the internet link with the PDF file in it. If you hover your mouse over the bottom right area of any PDF you should see a few icon option, one of them is the ‘save’ option).
There are also various references at the bottom of the ‘What is CRPS?’ page, just note which number is next to the bit you were reading and then look it up at the bottom of the page to see the sciencey back-up. (Google Scholar is a handy search engine for that sort of thing).
Information websites (in alphabetical order)
Bio Wizardry: cauterising the bleeding edge: a superb blog by an ex-nurse and truly fabulous friend. There are some great explanations in here about what would otherwise be some very complex aspects of CRPS function, (check out the one on mitochondria, and oooh the one on CRPS and vertigo is reeaally helpful if you’re having some near-fainting issues). It’s not a blog purely about CRPS, it’s about all sorts of medical stuff, but if you want to geek out without setting your brain to combustion levels, this is definitely a place to visit, x
CRPS Research and Developments, Facebook page: a blummin’ fantastic page! Started by an expert patient with CRPS, the additional admin’s also have great medical knowledge as well as personal experience of CRPS. The team post research both specific to the condition, as well as related to other autonomic issues, overlap conditions and comorbidities. If you want to know something specific there’s no harm in posting a message an asking, I’ve done just that in the past, and the feedback is great. Highly recommended, x
CRPS UK: is no more. However… there is a potential resurrection for it, plus there is an international charity being created by myself and others. More news as soon as I hear it, x
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA): the main US information group. They’ve retained their original group name even though RSD is now known as CRPS. It’s the same condition, though, and they use the newer name in the text. There’s lots of information on this site that you can print out for your doctor if you need to, x
CHANGES: Living with Postural Orthostatic Tachycardia Syndrome: A very informative video by DINET about living with POTS. As many forms of autonomic dysfunction involve the same symptoms this is a great video to watch whichever form you have as there is lots of information and advice included. (It’s just over 43 minutes long, but it is well worth watching for the information included in it).
CRPS patients and dentist appointments: List of information for our dentists (applies to fellow Dysautonomia patients, too)
DINET list of autonomic physicians: An international list just in case you need to look for an autonomic specialist. There may be some newer specialists not listed here, I found another one close to my area by asking a local neurologist. So if you don’t find one close enough to you on here, give them a ring and ask who else might be appropriate so that you can tell your doctor about their existence.
Dysautonomia International map of doctors, events and groups: Just click on the drop-down box at the top to choose what you want shown, then click on the “map it” button.
Psychology and Dysautonomia: it’s not all in our heads, Dysautonomia is a physiological condition, this article by a neuro-psychologist (who is now a dysautonomia patient, so she’s experienced both sides of the coin) explains why this condition can be mistaken as psychologically founded. She also reassures us not to worry if we get referred on to a psychologist as this is a sensible move for any of us dealing with a chronic condition and all the complications that arise from that, psychology tools are handy toolkit items. There are also bullet points for doctors to read.
Information websites (in alphabetical order)
Dysautonomia Connection: a good starting point when trying to find out more about certain types of dysautonomia to help your doctor to understand the complexities. This site has basic info’ on various types of dysautonomia including…Autonomic Dysreflexia, Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogwenic Syncope (NCS), Multiple System Atrophy (MSA), Pure Autonomic Failure (PAF), Ehlers Danlos Syndrome (EDS) and Small Fiber Peripheral Neuropathy.
Dysautonomia Information Network (DINET): also a great place to start finding info’ about autonomic dysfunction if your doctor requires more input. It has a good basic explanation that is easy to read, basic info’ on Pure Autonomic Failure (PAF) and Multiple System Atrophy (MSA) as well as more in-depth info’ particularly on Postural Orthostatic Tachycardia Syndrome (POTS) and Neurocardiogenic syncope (NCS), both of which are types of neurally mediated fainting.
Dysautonomia SOS: The only Dysautonomia website I’ve ever seen that lists CRPS as a form of Dysautonomia…. they’ve seriously done their research! This is a newly refurbished, as it were, website with journal articles listed by type of Dysautonomia, lists of support groups, tips, information that doctors can print off for their patients and more. Well worth a looksee.
And they have a page with some printable brochures/leaflets here too.
I am a POTSie girl: A book for children about dysautonomia, written by a young POTS patient
Stars: a UK website for patients with conditions involving fainting. This link will take you straight through to the “conditions” page.
Stars, The Blackout Checklist: a downloadable publication that you can print off for you and your doctor if you wish. It also includes a checklist which you can fill out in advance for the doctor, (I find it particularly helpful to have information prepared in advance for the brain fog threatens to set in)!
EDS (Ehlers Danlos Syndrome) wallet card
What are the types of EDS?: “There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder…”
So you think you might have EDS…: a 2009 pdf from the EDNF (Ehlers-Danlos National Foundation). If you read this, please do not worry, it is just for information and, as Sue Jenkins (RN) says in the text, “Knowing you have EDS doesn’t suddenly make things worse for you physically, but may allow for better physical management, and ideally allow for the prevention of any real problems, even if none exist currently. So knowing you have it is not necessarily a bad thing.” If you think you might have EDS your doctor can refer you into good medical hands, x
What pain feels like for someone with Ehlers-Danlos Sydrome
Handy Research papers that might be helpful for your doctor.
A guide to shoulder subluxation: a basic explanation with simple exercises that may help.
Information websites (in alphabetical order)
Ehlers-Danlos Support UK: “Ehlers-Danlos Support UK is a registered charity supporting people who suffer from Ehlers-Danlos Syndrome (EDS).”
The Hypermobility Syndromes Association (HMSA): “The HMSA aims to provide support and information to those affected by a hypermobility syndrome and to promote knowledge and understanding within the medical community and the public at large.”
As always, I love this post! THANK YOU!
I’m so glad that you found it useful, Colleen. Your message has put a big smile on my face. After all..that’s why I write this blog. 🙂 Big hug, and thank-you for the feedback as it really helps me to know what my fellow patients are looking for so that I can be as useful as I possibly can, xx
Hallo Elle, we think i got crps when i was 19,after the third kneefall , this knee got the name is patella femoral syndrome,many operations followed and in 2000 it was very very bad,i can not speak from the pain and i had 8 years fysio 3times a week in e good olympic fysiotherapist,because nobody know what to do. But i worked and fight a lot. I started in my childhood with VSD aorta coarctatio in 1961
Hallo , I want to telle a little of my big story and trauma’s . When i was born ,in 1961 , there followed a operation when i was 6 years old 1968,I have at the age of 30, a lot of disturbances, my hartritme and also my tooth are black from many antibiotica.s tetracycline,that was the hart bridge at america i was the firts in Nederland from 5000 who was opearted in the sixties. At 12 and 16 i falled on ice at my left knee. and also on 19years in 1980, was avery big grat sportfall on that knee,…blood in it,and many bone left. I got also a lot of migraine with aura. They inject me a lot in my childhood with antibiotics., i have a lot of trauma’s
What you tell about the invisible disease and no understanding is right !!!
Ii was taken to my family in 2004 for 9 weeks in a psychiatric home, a big trauma….i have a bad contact with my 4 brothers and 1 sister, they are reformed Christians !!.I loose my husband and ,2 boys,they do not understand it, i was sitting on a chair and with feet on the ground as glue ! The Ortopedic dr . siad once in 200 after another big operation , theta my central nervous system do not listen to my body…. at that time,I knew it…. But nobody else, the homedocotr did not believe me, my family wrote a letter to him, i did not no and they took me and set me in a psychiatric home , because dystonia, did not excist, they did not believe me …. There in that hospital …they let me lying on the floor when i fall down, i had dystonia etc etc,one feet got flat and finally after 9 weeks i got home, they saw a normal woman… i was right, but only 1 nurse said: you have Suceck Els, i said only yes. I was there totaly confused and shouting and spastic and roll with with my hands and constantly said the the same words and got no painmedication, I swett it stinks like amonia, 2 nurses tooko my arms or legges to get me off the toiletseat, but i was in dystonia, i sit on glue !! I sit fast with my feet on the ground and do not got away……etc etc In 2004 I went to Leiden University LUMC and Prof van HIlten en dr Marinus from youre reasearch list diagnosed me in 2 minutes ! I had read HOOSEMAND a long time ago and I knew i had crps, i iaid it at my husband and family and psychs and the do not listen to me, i was, ,am very alone, i loose my best friends!! I had many and know they do not listen at all.! They only talk about themselves and are interested in health people. They do noot believ that I am ill/ I have moved about my home , no help by moving and sit since december 2011 in the” rotzooi”, my husband, he took my boys away….i had now medication and the pain in my spinal cord at 3 places was not normally and at night i phoned the hospital and they let me come at 8 in the morning,this was after the pscyhiatrie, they finally believed me, i shout at my husband , now I moved again, my family laught and let me down, I moved,again last year,, because of the many, many triggers from my neigbour , no silence at all and he cut my plants, he shout at me,in the garden, he bonked on the stairs, throwing with all the doors, hard music…, i miss my home and my garden. Know i am on an flat appartment, 3 high,,,,,it is noisy. nobody undertstands me, only you !!!!! You talked about afasie and migraine and emotional disturbance,, i forgot words, i forgot my card, i think i put it in the case or on table., ,that is a safe place, but next day i do not know the place I find it anymore,, i forgot names’, i said many names after eichother, jan kees piet klaas and I ment jan,, people see me walking, i only can walk on flat floor and i fall on the stairs forwards, my leggs and arms , are so heavy and painfull and my feet are with 21 C full with fluid, I do not go to party’s. i try but the music is so hard,, i am isolated, i go now to a activity centre for physical disabled people, cancer,braindamage, laesie’s, braininfarct,afasie etc, also problems with talking etc,,that is a very good place for me, 98% see no family anymore. Politics at Utrecht my city ,they taken my household from 6 ours to 3,5 ours, crisis politics… who buy for me bread and cooking when i got a attack?? My attacks are beginning as flue, hot cold hot, very,sick….sometimes in 2 weeks but also 3 months on my bed !!! No help from anybody …i can not cook etc/ I see one off my boys he is 23years old and he looks like me. the conatc is getting better,, but I miss him from 19 years too, he do not come and do mnot want to help me ! They do not understand me…they do not want to speak about it,….Thye forgot my birthday, forgot me, i have no holidays, I want very mucj to go to Texel, it is colder their. and a lovely beach 19-20 in summer, that is much for me. But i do not want alone, I have many thoughts about suicide, I did it 2 times. because they let me alone and did not believe me at all. Thats why !! I have lots of humor, my family never made excuses to me. They want no contact !! sometimes i think, I jump and put a plastic sack over me.. I use so many medication….i am depressed of that and all the sorrow about my home etc…. I am very very proud about you, very proud !!! I am 51 and fall on my knee at 19 in 1980, diagnose was in 2004 in Leiden. You write everything what i feel !!!! I want to hug you !! Dont give up !!!
My very best regards for you xxxx Els
Oh Els, you are a wonderful and strong lady. After reading your message I felt rather emotional, thank-you so much for your encouragement. You are yourself a strong and inspiring lady, my heart goes out to you for all that you have been through. So many fellow patients that I have chatted with have lost people close to them. Some because others don’t understand the pain levels, and some when the neurological issues have caused misunderstandings and confusion. You are not alone my lovely, even though we are distributed all over the world, we are together online. The worldwide informal network of CRPSers, and Dys’ patients too, never ceases to amaze me. It fills me with warmth for the love that we all have for each other. I am so glad you you hang onto your humour, please don’t give up either, Els. You are an amazing woman. Here’s a huge hug and lots of love from me…. ❤ ❤ ❤ (<- they're meant to be hearts but I don't know if WordPress knows this!) xx
Pingback: Happy 1st Birthday to the Elle and the Auto Gnome blog! | Elle and the Auto Gnome
Pingback: My Health Activist Weblog | Elle and the Auto Gnome
Pingback: “Useful Links” page for fellow patients | Elle and the Auto Gnome
Pingback: Patient contact and self-advocacy on Social Networks | Elle and the Auto Gnome
Pingback: Photo Challenge for CRPS Awareness, Day 10 | Elle and the Auto Gnome
Pingback: Dysautonomia awareness month | Elle and the Auto Gnome