Posted: 2014, 18th June; Last Updated: 2014, 28th September
I help out as part of a multi-disciplinary admin’ team in a couple of online support groups. One of the groups has had such a fast increase in membership that we found ourselves trying to keep up answering recurring questions a lot of the time. As we admin’s are also working around our on CRPS, co-morbidities, flare-ups etc we found that the amount of repetition required was taking more time than we could manage to function in per day.
So, the plan was to create an FAQ with a list of themes with various links, snippets of information and so on, so that instead of repeating ourselves and posting loads of information every time the questions came up we could instead say “hey, that’s in our FAQ, feel free to go and have a look”. And it seems to be working well. Now a few lines to direct the questioner towards the FAQ enables us to share lots of information without compromising our own healthcare in the process. Organised, or what?! 😉
But that’s just within that one support group, and until my peers and I get the charity website up and running there’s nowhere else that our fellow patients from outside the group can access these links. Plus even if the file gets shared it’ll soon be out of date as new links are added all the time. So I’m going to add the FAQ here in the meantime. My fellow admin’s are working on other areas to add more info’ and links to what I’ve gathered together so far and I will make sure that it all ends up available online (the charity webbie is being created so we’re getting there slowly despite the health restrictions).
This FAQ is a bit rough and ready at the moment, mostly still in raw links (some of which aren’t working as links at the mo’ so for those ones just highlight the website address, right mouse click ‘copy’, and then right mouse click into your browser address bar and right mouse click ‘paste’).
I’ll pretty this up when I get to but as I have a long CRPS advocacy To-Do list at the mo’ I decided that prettifying can wait – it’s more important to get this info’ out there and available. Any suggestions for additions, feedback etc is always appreciated.
Much love from me, x
NB: This is information and links gathered together to save fellow patients from having to search so extensively themselves. I am not medically trained and am not offering medical advice of course.
All CRPSers vary in their subtype and comorbidities etc so each bit of information needs to be weighed up by you and your medical team to see how appropriate it is for your personal health. Hopefully this list can give some thoughts and insights that could help with this process, x
. “So you’ve been diagnosed with RSD and/or CRPS… What now?”
A highly recommended read. The author, Lili, 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.
A great overview of CRPS complete with various links throughout the article. As CRPS is a multi-faceted and complex condition the best approach is also a multi-faceted one. No one med’ is going to magic things better, but many of the techniques mentioned in this article can combine to create a much more effective treatment and management.
Two of the worst things we can do with CRPS is to not move and also to move too much, so the answer is that we need both to help us manage pain levels. The amount of rest and activity will vary for each of us as we have various subtypes of CRPS in various areas of our bodies with various co-existing conditions. So, if pain has stopped you from moving, or if you overdo it each day, or if you do more on good days and then experience bad days as a result… the best way to start is to look at Jo’s article about Pacing to look at why balancing rest and activity is so important and to figure out the best way forward for you.
(See also Pacing and Planning Activity) .
Adaptive Technologies / Devices Asked for patient input one one of the support groups, great feedback 🙂 These are nothing to be embarrassed about – they are simply tools for us to use to regain some of our independence. Whether it is crutches, wheelchair or scooter to get about or something that helps us complete particular tasks more easily – if it helps, it’s a good thing. Here’s some examples of adaptive devices and technologies used by fellow group members:
Allergy nasal spray – put on the skin before applying heart monitor electrode stickies to reduce itching and irritation (let the skin dry first though so that the stickies adhere better
Bath board – to help with getting in and out of bath
Bath chair – also helps with getting in and out of bath and can be motorised too
Bannister up the stairs, or even two for extra support
Bed cradle – to keep the bedclothes off the affected area, works really well for legs
Bed rail / Bed Stick
Blanket – warmth helps relax muscles which can help pain levels
Commode Crutches – keep a spare pair upstairs
Cushions, soft cushions (like those squishy ones you can get at service stations) re less pressure
Dragon Naturally Speaking – a computer program that allows you to talk instead of typing
Electric bed Electric chair Flask – to have fluids to hand to reduce near-fainting (for those with this autonomic issue)
Grabber on a pole to help to reach things
Grab handle at side of bed to aid turning over
Grab rails around the house, including into and out of the house, by the bath/shower
Gloves – an old pair of gloves in the kitchen to access items in freezer without cold burning
Hot water bottle with a cover (to prevent damage to skin) to help muscles to relax re pain levels
Key safe-lock outside so that trusted people can get in if you need them to without getting up
Kindle – less stress on the arms, can even get a cover which folds into a prop/stand
Laptop support stand – so that there is no weight on my legs
Lavender essential oil – drops on the pillow for relaxation and aiding sleep
Mobile phone – in case of falls or needing help
. – a great way for contacting people in the household without getting up
Mop – for cleaning the bath more easily
Nomad box – for all of your medications
Nutcrackers used for squeezing lemon/lime when cooking
Orthotics velcroed into sandals – velcro magically allows me to wear sandals again Receptable to hand for anyone with a catheter to be able to empty into
Remote controls on plug sockets – so can e.g. turn on lights without getting up
Shoe-horn with a long handle
Shower chair – so do not have to stand in the shower
Sock and stocking aid Stool – to perch on instead of standing, e.g. when preparing food in the kitchen
Straw – so can still drink fluids when can’t lift up the weight of the cup (glass or metal for hot)
Toilet frame – helps with transfer from wheelchair to toilet (plus it is helpfully transportable)
Urine bottle – for men, handy in bed to avoid the pain of getting up
Vacuum jug/flask – for having fluids to hand without having to get up – also great to fill with hot water and take in car so can refill hot water bottle
Visual Impairment tool for the computer: if you have Windows Office2010 or later then you can follow this link to download “Windows Eyes” for free
Walking stick that folds up neatly into a bag so that it’s to hand if needed
Wheelchair, so don’t go over paced activity time for the day but can stay out longer if need to
Wheelchair leg elevator attachment Wheelchair ramps for the car
Zippo warmers – stay warm longer than a hot water bottle so handy for long journeys or hospital appointments
Additional suggestions for disabled parents: –
Cot elevated on longer legs so that a wheelchair can fit underneath – Can also get cots where the side lifts upwards (so you can remain close-to with wheelchair underneath)
Bottle warmer You can also search for an RSD and CRPS mothers group on social networks . .
Allodynia (Skin sensitivity) Here’s an article from a nurse and CRPS blogger on how to retrain the brain to reduce the sensitivity responses: http://livinganyway.com/wp/2012/11/11/the-sheer-activity-of-epsom-salt-baths/
And here’s some info’ from the RSDSA as well: http://www.rsds.org/3/education/desensitization.htm .
Alternative Therapies A CRPS blogger who specialises in alternative therapies is writing a book about alternative treatments and therapies for chronic pain, you can find her accompanying blog here: http://www.tamingthebeast.ca .
One thing to point out straight away is that many CRPSers and Dysautonomiacs get told that they’re suffering from anxiety when it is entirely possible that the ‘anxiety’ symptoms are actually autonomic in foundation. Of course we then tend to feel somewhat anxious about the symptoms which weren’t actually anxiety in the first place! Many doctors do not realise that anxiety-like symptoms can be caused by our faulty autonomic nervous system, or even that a faulty nervous system is actually part of CRPS.
Of course we can also be experiencing anxiety, but the above is extra info’ for those who ended up with random symptoms without feeling anxious but who were told it was ‘just’ anxiety.
Anxiety itself is understandably also common in CRPSers considering the pain levels and life changes etc that we are dealing with.
For those experiencing panic attacks here is a link for ways of working round them..
Research has shown CRPS to involve auto-immunity. Back in 2007 Blaes et al published a paper about the autoimmunity involvement in CRPS: http://www.rsds.org/pdfsall/Blaes_Tschernatsch_Braeu.pdf
Here’s a recent research paper (2013) by Cooper and Clark about neuroinflammation, neuroautoimmunity and the co-morbidities of CRPS (they even mention in their abstract that “medically unexplained symptoms” are often incorrectly assumed to be psychogenic. Hurrah for good researchers pointing htings like this out! 😉 ).
Andreas Goebel in particular has worked a lot in this area, here’s a link to one of his research papers: http://www.sciencedirect.com/science/article/pii/S156899721200273X
Autonomic Issues (Dysautonomia) Good foundation in easy to read format (recommended by several fellow patients with nursing backgrounds): https://elleandtheautognome.wordpress.com/what-is-dysautonomia/
Excellent You Tube video explaining the nervous system (12 mins): http://www.youtube.com/watch?v=tqvJZ1STLos&feature=share
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: http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox
“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): http://www.youtube.com/watch?v=8UPMYNkm6Bc&feature=youtube_gdata_player
If your doctor needs info’ on the autonomic effects of CRPS then you can’t go far wrong with Schwartzman’s excellent paper which can be found here: http://www.scirp.org/journal/PaperInformation.aspx?paperID=22695#.UzBscPl_uSo
The link initially only shows the abstract (summary) only but you can actually download the full paper for free from this link. Further information on particular types of Dysautonomia (notably NCS, PAF and POTS) at The Dysautonomia Information Network (DINET) http://www.dinet.org/
List of autonomic physicians (not exhaustive, but gives us a place to start looking / asking): http://www.dinet.org/index.php/physician-list?view=physicians
I gained some stabilisation of my Autonomic Nervous System (ANS) from an SSRI: https://elleandtheautognome.wordpress.com/2013/09/16/ssri-stabilisation-effects-on-the-autonomic-nervous-system-and-my-muscle-tension-side-effects/
Here’s my experience visiting one of the top autonomic specialists in the UK: https://elleandtheautognome.wordpress.com/2013/05/07/neuro-vascular-autonomic-consultant-in-london/
Syncope and Near-Syncope regarding feeling faint,
Immunoglobulin Treatment Research in this FAQ, and
‘Information Websites’ listed at the end this FAQ) .
Body Temperature Dysregulation
See: Autonomic Issues .
See: Cognitive Effects .
Bruxism (jaw clamping)
See: TMJ .
As the autonomic nervous system is affected in CRPS, other automated processes can sometimes be triggered to a different default behaviour as well. Here’s a 2013 paper from Taneyama et al titled “Patients with CRPS1: Fractal Dynamics of Heart Rate Variability and Baroreflex Evaluations”, this link only shows the abstract (summary) but your doctor will be able to access the full paper: http://journals.lww.com/clinicalpain/Citation/2013/11000/Patients_with_Complex_Regional_Pain_Syndrome_Type.7.aspx .
Central Sensitisation is a fairly new term used in Pain Research to explain the ”wind up” in the nervous system that CRPS patients experience. As Sage Griffin Palmer quite rightly explains in her post it is caused by activity in the glial cells. It causes many of the symptoms we are familiar with such as Allodynia (skin sensitivity to touch) and Hyperalgesia (when a painful stimulus feels worse than it should. It also causes the sensitivity to noise and light that many patients experience. In a nutshell Central Sensitisation is another way to describe CRPS and the changes caused by our condition. It is not a separate diagnosis at all. There has been a lot of confusion about the naming of CRPS recently. For example many of us are told we have Full Body CRPS or Systemic CRPS but if you think about it is a contradiction in terms. How can we have FULL BODY Central REGIONAL Pain Syndrome? It just doesn’t make sense. Using the term Central Sensitisation is an attempt to simplify matters but for the patient it can just add to the confusion.
This link explains Central Sensitisation well:
(thanks to V. Lister for this addition, x)
Cognitive effects Some great tips for working around ‘Brain Fog’: http://www.butyoudontlooksick.com/wpress/articles/top-ten-lists/10-tips-for-navigating-your-way-through-brain-fog/?utm_content=buffere3b0d&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
How long to nap for the biggest brain benefits:
Experiencing cognitive change: https://elleandtheautognome.wordpress.com/2012/05/06/experiencing-cognitive-change/ .
A good post about how those who seem to cope well with chronic pain actually manage to do so:
The ‘pain toolkit’ website with really helpful introductions to a good set of tools for coping with chronic pain. Many of the themes/tools mentioned on this website are also included in this FAQ (so you can also find further links and information by looking them up on here too):
A post by a CRPS blogger about the changes that happen in life: “Finding Out Who My Real Friends Are”:
Keeping a ‘Jar of Joy’: https://elleandtheautognome.wordpress.com/2013/01/21/a-jar-of-joy/
The attitude I take:
Young Australian pain patients: a new pain management network online now exists with tools and tips for managing pain and coping. Here’s an article telling a bit about the site:
And here’s the website itself: http://www.aci.health.nsw.gov.au/chronic-pain
A link with some basic info’ whilst I’m busy writing the paper in the meantime: http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm
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:
CRPS and Dentistry: https://elleandtheautognome.wordpress.com/2013/08/26/crps-patients-and-dentist-appointments/
Also a link here for patients with POTS (re autonomic dysfunction so applies to other forms of dysautonomia including CRPS, too): http://www.dysautonomiasos.com/#!dentistry-and-pots-/c1fzj .
Diagnosis Here’s the link to the Budapest Criteria. This link was published the UK in 2011 (updated 2012) but the Budapest criteria is used to diagnose CRPS in Europe: http://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-syndrome-concise-guidance.pdf .
Vitamins and Supplements .
Disability Benefits / Income
UK: Download a factsheet on what you can claim here
USA: Information on SSD & SSI here
There can be various reasons for dizziness, one of which is autonomic dysfunction which is common in CRPS patients, but as there could be various possibilities it is best to see your doctor to discuss it. .
See: Information for Doctors .
Of course it is not sensible to drive when pain or other symptoms could affect our reaction times, but when it is possible to drive there are some ways in which we can help reduce some of the more pain-inducing aspects. Here’s some ideas from a CRPS blogger who has written an article about working around her CRPS symptoms to still be able to drive: http://livinganyway.com/wp/2012/11/09/re-learning-how-to-drive/
See: Autonomic Issues .
Ehlers Danlos Syndrome (EDS)
EDS wallet card:
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 http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf
(See also: Hypermobility as there is overlap) .
See: Psychological Support.
Fainting & Near-Fainting
If your doctor doesn’t comprehend how CRPS and finting/near-fainting are linked then this research paper by Jason Smith et al (Schwartzman is included among the authors) in 2011 should educate him/her: http://www.ccpdocs.com/RSD%20Syncope%20Manuscript.pdf
Patient experience of the Tilt Table Test (TTT), heart-rate monitors (ECGs / holters) and seeing a cardiologist who didn’t entirely know what to do!: https://elleandtheautognome.wordpress.com/2012/04/13/temporary-cyborg-and-wearer-of-an-invisible-purple-cape/
See also: Autonomic Issues .
CRPS & Fibromyalgia have overlapping issues. They can be misdiagnosed for each other, but they can also co-exist in the same patient of course. Here’s some more info’.. The similarities between Fibromyalgia and CRPS (Wurtman, 2010): http://www.rsds.org/pdfsall/Wurtman_Metabolism_2010.pdf
Fibromyalgia Association UK (FMA):
See: Pain Flares .
Patients often have varying suggestions regarding footwear simply because we all vary in the issues that we are trying to work around. Sometimes it’s pain issues, sometimes it’s temperature, sometimes it’s both. If you ask the question in support groups and mention the particular issue you are trying to work around you are likely to get a few good suggestions that might be of use to you. An article on combining sandals (because of burning feet) and orthotics: https://elleandtheautognome.wordpress.com/2013/07/24/burning-feet-orthotics-sandals-and-some-magic/ .
Here’s one CRPSer’s sum-up of some issues that can arise with hair and nails: http://voices.yahoo.com/abnormal-hair-nail-growth-complex-regional-3659547.html?cat=70 .
Some countries, such as the USA, have health insurance and workers compensation issues that are intertwined with diagnosis and treatment. Here is one link with some helpful info’ and suggestions: http://www.lawgazette.co.uk/law/practice-points/complex-regional-pain/5040961.article#.U16Le9pPBaI.facebook .
Hospital Treatment Protocols
See: Treatment Protocols .
Here’s a proactive organisation for hypermobility who work to share information and raise awareness:
You can also find them on Facebook here: https://www.facebook.com/TheHMSA?fref=ts
One of our bloggers went to see one of the top hypermobility specialists in the UK: https://elleandtheautognome.wordpress.com/2013/09/12/hypermobility-specialist-appointment/
See also: EDS .
It appears that there is one subtype of CRPS for which ice actually helps, for the other subtypes it can be very detrimental indeed so the general advice is to steer clear. If you intend to try using ice then exercise great caution. Here’s some info’ from the RSDSA on the subject:
See: Auto-Immune Aspects .
Immunoglobulin Treatment Research
There are trials happening at the moment. One is running in the UK under Dr. Schwartzman. Here’s a link to the research info’: http://www.liv.ac.uk/pri/cisp/docs/goebel_intmed2010.pdf
See also: Auto-immune aspects .
Information for Doctors
Free pamphlet on CRPS from the National Health Institute (which is actually pretty good 🙂 ):
How to go through your own medical notes: “The Red Pen Technique (dramatic music, please)”:
Here’s the kind of thing to take to the doctor: https://elleandtheautognome.wordpress.com/2012/06/10/what-i-take-with-me-to-my-doctors-appointments/
And thanks to one of our bloggers, here are some excellent links to a three-part post about how to create your own documentation on your health: “Documentation – a picture’s worth a thousand words”: http://livinganyway.com/wp/2013/12/09/documentation-a-pictures-worth-a-thousand-words/
“Documentation – Long Time? – Timeline!”: http://livinganyway.com/wp/2013/12/11/documentation-long-time-timeline/
“Documentation I use”:
For keeping your doctor advised and for tracking your own pain levels it is really useful to create your own personal pain scale: http://biowizardry.blogspot.co.uk/2013/02/pain-rating-scales-must-describe.html
Main useful research papers to take to your doctor: Scwartzman et al’s excellent paper on the systemic issues involved in CRPS: http://www.scirp.org/journal/PaperInformation.aspx?paperID=22695#.UzBscPl_uSo
Paper on the spread of CRPS by van Rijn et al: http://www.ncbi.nlm.nih.gov/pubmed/21331457
Paper by Coderre looking at what CRPS is, it’s mostly from a vascular viewpoint (so it’s important to team this paper up with others, like the ones suggested above, to give a more rounded view of the condition) but it is excellent for pointing out to doctors who are have outdated knowledge just how behind the times they are 😉 : http://www.thblack.com/links/RSD/JPain2011_12_2_CRPS-WhatsInAName.pdf
And any other papers relating to your specific issues at the moment, e.g. fainting and near-fainting (check this index to find what might help) .
Information for Friends and Family
An article from one of our bloggers on how pain ‘works: http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.theprincessinthetower.org%2FPain-Management.html&h=3AQGd4wNA
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 the nurse:
A letter to families and friends of CRPS patients:
A You Tube video (2011) by Paediatric Anaestheologist (and director of Pain Management Services at Lucile Packard Children’s Hospital at Stanford) about neuropathic pain. Well worth a watch. http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain.html
The difficulty of living with an unpredictable and variable condition: http://www.psychologytoday.com/blog/turning-straw-gold/201404/how-chronic-pain-and-illness-fan-the-flames-uncertainty?utm_content=buffer7dd9c&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
“ Looks can be deceiving”: http://invisibledisabilities.org/educate/invisibleawareness/lookscanbedeceiving/
“23 Tips for Supporting a Partner with Chronic Pain”: http://www.elephantjournal.com/2013/04/23-tips-for-supporting-a-partner-with-chronic-pain-pete-beisner/
“Resolving conflicts when a partner is chronically ill”: http://www.psychologytoday.com/blog/turning-straw-gold/201404/resolving-conflicts-when-partner-is-chronically-ill .
See: Sleeping .
Interactions between medications and diet / supplements
An important part of our proactive involvement in our own treatment is contact with a pharmacist. There can be interactions between our medications and certain foods or supplements and a pharmacist has a lot more knowledge on this than our doctors because it is their speciality area. Ideally – always run any changes by your/a local pharmacist (I always pop down the road to the local pharmacy and ask whoever’s on shift. If there’s a regular there you’ll find that they start remembering you and often they are intrigued by our down-to-earth proactive approach to our complex condition and are more than happy to help 😉 ). If not a pharmacist, then at least run it by your doctor before making any changes, but truthfully a doctor can easily not know the details that a pharmacist does so they really are a brilliant contact to include in our decision-making processes.
Here’s some basic information with a few examples: http://www.aafp.org/afp/2008/0101/p73.html#.UxS6WxCwZmA.facebook
but as we all have different mixtures of meds and supps it is far better to give a list of eeevrything to the pharmacist and ask them to look over the whole picture rather than search for mere pair issues online. There are some group members who have pharmaceutical training too, so some guidance can be found in-group, but even these lovely group members still advise us to… grab a local pharmacist with up-to-date knowledge to optimise our intakes 🙂.
The definition of intractable pain according to the Intractable Pain Association is “Pain which is excruciating, constant, incurable and of such severity that it dominates virtually every conscious moment, produces mental and physical debilitation, and may produce a desire to commit suicide for the sole purpose of stopping the pain”. Sound familiar? That is because CRPS is considered to be intractable pain.
See: TMJ .
Ketamine is an anaesthetic and can be used in different ways. Most commonly it is used as an infusion for several days (as a hospital inpatient) to reduce the pain levels for a time. This effect can be extended with outpatient booster injections. Of course many patients have adverse reactions to invasive treatments and this would need to be discussed and weighed up with your doctor. The Ketamine itself also has side effects, patients who experience the infusions usually do not like the experience at all but go through it for the temporary pain relief. Again, it is for each of us to discuss the pros and cons with our doctors and decide what is best for each of us as individuals. What works for one may not work for another. There are also ketamine lozenges available in some countries (e.g. Australia) which can be taken as a course. There’s not much data on the use of ketamine on CRPS patients, but here’s a few links if you want to find out more: Here’s the best research I could find as it’s a double-blind placebo controlled study by good ole Schwartzman… http://www.ncbi.nlm.nih.gov/pubmed/19783371
Here’s another piece of research from the same year (2009):
An observational study on the effect of S(+)-ketamine on chronic painversus experimental acute pain in Complex Regional Pain Syndrome type 1 patients
A 2013 piece found an association with improvement in motor control: http://www.jpain.org/article/S1526-5900(13)01135-8/abstract
Some info’ on ketamine side effects: http://www.drugs.com/sfx/ketamine-side-effects.html
And here’s an interview with Barby Ingle that one of our group members, Sylvie, posted online in 2012, which includes some info’ and references to ketamine: http://sylvieghyselscrpsdrc.wordpress.com/2012/07/10/interview-with-barby-ingle-review-of-ketamine-treatment-for-crps-and-much-more/ .
McGill Pain Index
Other diagrams can be found online, this one also includes ball-park pain score for Fibromyalgia and Akylosing Spondylitis pulled from research papers, and the link below also explains more about how this pain scale can be scientifically reliable considering that pain itself is subjective: https://elleandtheautognome.wordpress.com/2014/02/15/ankylosing-spondylitis-on-the-mcgill-pain-scale/
See also Pain Scales .
Medical Alert Info’
Whether you opt for a medical alert bracelet or info’ in your wallet and so on, it’s always good to tailor the information to your because each of us varies in our array of symptoms co-morbidities. Here’s one example: https://elleandtheautognome.wordpress.com/2013/06/10/photo-challenge-for-crps-awareness-day-10/ .
Migraines A CRPS blogger, who is also a specialist in alternative therapies, writes here about some of the alternative options for migraine treatment: http://www.tamingthebeast.ca/2013-12-28/Migraine%20Care%20and%20Prevention:%20Some%20Alternative%20Op/
Here’s one CRPSer’s sum-up of some issues that can arise with hair and nails: http://voices.yahoo.com/abnormal-hair-nail-growth-complex-regional-3659547.html?cat=70
Regarding toenails: http://www.rsds.org/1/publications/review_archive/Udell_Spring2008.html .
Rethinking the psychogenic model of CRPS – Glick, Chopra & Ricardi, 2012
No psychological profile for CRPS1 – Beerthuizen, Stronks et al, 2011
Neuropsychological deficits associated with CRPS – Libon, 2010 .
Here’s a quick overview of basic CRPS diet info’:
Also see: Vitamins and Supplements
. Interactions between medications and diet / supplements .
CRPSers tend to process calcium differently (it’s a key molecule in nerves firing). For those CRPSers who had a late diagnosis, one of the ways the diagnosis can be determined is with the addition of lower density bones in the affected areas coupled with the medical history (an MRI scan can determine this). Fortunately, a proactive response to osteopaenia and osteoporosis is to exercise to increase bone density which dovetails with the ‘paced’ exercise we need to do to help to manage our pain levels anyway.
See also: Teeth changes .
Pacing & Planning Activity
Two of the worst things we can do with CRPS is to not move and also to move too much, so the answer is that we need both to help us manage pain levels. The amount of rest and activity will vary for each of us as we have various subtypes of CRPS in various areas of our bodies with various co-existing conditions. So, if pain has stopped you from moving, or if you overdo it each day, or if you do more on good days and then experience bad days as a result… the best way to start is to look at Jo’s article about Pacing to look at why balancing rest and activity is so important and to figure out the best way forward for you. Here’s the article link: http://www.theprincessinthetower.org/Pain-Management.html
A brief article about how exercise can help if it is ‘paced’: http://healthskills4pain.wordpress.com/2014/04/01/exercise-for-chronic-pain/ .
Grounding info’ on Gabapentin / Neurontin and Lyrica / Pregbalin: https://elleandtheautognome.wordpress.com/2013/10/19/gabapentin-neurontin/ .
An article from one of our knowledgeable bloggers in the group: http://www.theprincessinthetower.org/Dealing-with-Flare-ups.html .
Here’s a great article from one of our bloggers on how chronic pain ‘works’: http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.theprincessinthetower.org%2FPain-Management.html&h=3AQGd4wNA “What is a pain doctor?”: http://dankopainmanagement.com/2014/04/what-is-a-pain-doctor/
Also see: Pacing and Planning .
The McGill Pain Scale / Index is for a general CRPS score (See McGill Pain Index) For keeping your doctor advised and for tracking your own pain levels it is really useful to create your own personal pain scale: http://biowizardry.blogspot.co.uk/2013/02/pain-rating-scales-must-describe.html
Another example of a pain scale, if you were to use this then give a copy to your doctor to look at whenever you visit so that they understand what you mean when you give your pain a number: http://lifeinpaincrps.blogspot.co.uk/2014/04/tools-for-better-communication.html .
See Treatments .
Good and up-to-date info’ can always be found at the RSDSA online. And here’s one of their recent info’ and awareness vid’s on You Tube: https://www.youtube.com/watch?v=nT8PuOHbs-E .
See: Information for friends and family (includes tips for within relationships, too .
A great guide to ‘spotting bad science’: http://www.compoundchem.com/2014/04/02/a-rough-guide-to-spotting-bad-science/
“16 Points to consider when reading medical research” (authored by a neuropsychologist who is now a Dysautonomia patient who blogs to help fellow patients and to raise awareness) http://bobisdysautonomia.blogspot.com.au/2013/09/16-tips-to-consider-when-reading.html .
See: Footwear .
Here’s a handy article about this:
Also some CRPSers have found dry skin to be greatly benefitted by the application of coconut oil (the basic type used for cooking with) input from one CRPSer: “Its stopped the flaking skin, its slowing down the skin splitting (the skin is thinning and light knocks are splitting the skin. have cut the skin open on my hand heaps of times washing the dishes with spoons more times to count) its like its giving it its, bounce back.
Best of all its helping those pin prick blisters on the CRPS limbs. they don’t go all dry and sore and itchy and they are healing quicker than normal, well for CRPS that is, as we know how long it takes anything to heal on the CRPS limbs.
Its also helping to reduce my stretch marks on my mummy tummy
It is also helping the limb not to sweat so much too, (helping with odor control too, dont know if thats just me that notices the smell on the CRPS sweat being different than normal sweat)
Its also helping the skin from not getting sun burnt so quickly too.
Cant get over how something so simple is helping in so many ways.
It’s not helping with the pain, nor the swelling nor skin colour changes. its just making the skin soft and less splitting issues due to the swelling.
Its also fantastic on the face too to help with the dry skin CRPS patches too if you have it on your face.
Hope this helps someone as its helped me if only in confidence way, as the skin no longer looks like a dry scaly, pin prick blister, scabbed, skin splitting limb on top of the contorting, swelling and colour chances.
This also helps with people that cant use many products to the CRPS skin reacting to many products. its one of the very few things I can use on my skin with out it burning, yep, even sorboline cream burns the skin and starts a skin reaction that doesn’t show up on the non CRPS side.”
Suggestions for dry skin from other CRPSers include:
– olive oil (with some lavender drops and Epsom salts) in a bath
See: Allodynia .
A great explanation about how common sleep disorders are with chronic pain and why:http://www.disabled-world.com/health/neurology/sleepdisorders/insomnia/icp.php
Recent research (2013) here (plus it includes a link to the research abstract itself): http://www.bodyinmind.org/about-bim/
Two excellent articles from two of our bloggers, on tips for trying to grab some of that elusive sleep:
See: Tremors and Spasms .
Something you’ve probably come across in support groups.. fellow CRPSers referring to themselves as ‘spoonies’ or saying that they’re ‘run out of spoons’ or that they ‘need more spoons’.. all that orginates from Christine Miserando’s explanation to her friend about her Lupus which has since been published and many patients with chronic illnesses have identified with this theory because it’s an easy way to help those around us to have a basic understanding of why we have to plan our days, and why we just can’t do any more than a certain amount: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ .
Spread of CRPS
CRPS can spread but it doesn’t do so often, there’s no definites when it comes to such a plastic and varied condition. Many of us experience spreadlike symptoms as a result of our compromised nervous systems (see the first part of the RSDSA link here: http://www.rsds.org/3/education/CRPS_Spread_Stanos.html
For those of us who do experience spread we are often met with disbelief and lack of understanding from doctors, so here’s a few links which should help them to acknowledge spread and to understand the types which can occur: 2013, Edinger and Schwartzman et al, “Objective Sensory Evaluation of the Spread of CRPS”: http://www.painphysicianjournal.com/2013/november/2013;16;581-591.pdf
2011, van Rijn et al, “Spreading of CRPS: not a random process”: http://www.ncbi.nlm.nih.gov/pubmed/21331457 (your doctor will be able to access the full paper to read at their leisure 😉 ) Many doctors also believe that CRPS is a condition of the limbs, this is a very outdated understanding as it’s simply not the case. CRPS can start in any region of the body and spread to any region, and that includes the ‘trunk’ of the body. There is a case study of one patient who developed CRPS after having keyhole surgery for appendicitis but The abstract alone is unhelpful. .
SSD & SSI
See: Disability Benefits & Income
SSRIs and SNRIs
Mainly known for their use as anti-depressants, but SSRIs are also used for pain control/reduction and also for stabilisation of the autonomic nervous system (ANS). Connection with SSRIs and jaw clamping (Bruxism): https://elleandtheautognome.wordpress.com/2013/09/12/hypermobility-specialist-appointment/
Connection between Citalopram (and SSRI) and heart rhythm/speed: http://www.nhs.uk/news/2012/07July/Pages/antidepressant-citalopram-qt-heart-rhythm-safety-warning.aspx
Re jaw clamping: see also TMJ .
Studying from Home
My experience of distance learning around my disability: https://elleandtheautognome.wordpress.com/2012/03/27/studying-from-home/ .
Please do call a supportline if you need support of any kind. Many of us who have had CRPS for many years has considered suicide when they had hit rock bottom and then discovered that there seemed to be a level below that, and we’re glad we’re still here. But you don’t have to get through this alone, please do make that call, xx And if you’re considering that way out perhaps this link could possibly help: http://www.metanoia.org/suicide/
Here’s a post from a fellow CRPSer who blogs:
And here’s how others can help someone who’s feeling suicidal: http://www.mind.org.uk/information-support/types-of-mental-health-problems/suicide-supporting-someone-else/#.U2nxNPldWSp .
See: Dentistry for basic info’.
See: Inflammation and Swelling .
Syncope & Near-Syncope
See: Fainting and Near-Fainting
See also Autonomic Issues .
Tai Chi is a slow moving set of moves which can be used to improve leg strength, core strength, balance and more. The moves are based on martial arts and most closely related to the defence martial art Kung Fu. The author has been studying Tai Chi in her physio’ time for several years advocates choosing a form of exercise which you are most interested in, whether that might be yoga, pilates, Tai Chi etc. The health benefits of Tai Chi: https://elleandtheautognome.wordpress.com/health-benefits-of-tai-chi/
Tai Chi as part of paced activities: https://elleandtheautognome.wordpress.com/2012/04/28/world-tai-chi-and-qigong-day/ .
CRPSers tend to process calcium differently (it’s a key molecule in nerves firing) so some of us experience brittle teeth See also: Osteopaenia .
Teeth nerve pain
Some fellow CRPS patients who experience CRPS pain in the teeth have made some suggestions for trying to reduce the pain: – Swishing some water with Epsom salts dissolved in it around your mouth (spit it out afterwards though as ingesting too much can cause diarrhoea!) – Clove oil – A ‘sonic’ toothbrush can help some patients to disrupt the pain signals thanks to the frequency. Hold it against the gum in the affected areas (to avoid over-cleaning and damaging any teeth). Last time we checked the only truly sonic toothbrush was a ‘sonicare’ by Phillips. .
Treatments Pain Management come in a variety of forms and our best way forward is to find what works for us individually and build our own set of tools to help to manage our individual pain. It is advisable to try non-invasive treatments first if possible as CRPS bodies can react badly to invasive treatment. This is not to say that invasive treatments are a no-go, just that they are a no-go for some patients therefore it is best to be cautious and try things out a bit at a time. And, of course, many non-invasive treatments can work together so we tend to be able to accumulate more of these to help us. Remember that not everything works for all of us, so think about how your body reacts to different things to help choose what to try and remember also to start off all treatments gently. Here are some of the treatments tried by our fellow group members… .
Calmare therapy –
Chiropractory – one group member has worked with the active release technique (though this can be painful to experience and the practitioner *must* know/learn about CRPS before attempting treatment)
Cognitive Behavioural Therapy (CBT) – notable for being something that we patients are proactively involved in rather than having a treatment performed upon us as passive recipients, CBT can include:
- Cognitive restructuring to alter negative thoughts about pain and deal with maladaptive beliefs
- Training in problem-solving to encourage pain patients to work through their problems as testing new solutions and measuring their effectiveness
- Relaxation training including guided imagery and progressive muscular relaxation
- Changing structured activities by learning pacing (breaking up activities into smaller chunks during the day) and becoming more physically active
- Psychoeducation to learn more about pain and coping techniques
- Supportive counselling to provide guidance and emotional monitoring
- Other treatment methods including biofeedback, hypnosis and relapse prevention training to retain the gains that have been made
De-sensitisation of the skin (see Allodynia) Graded motor imagery – Heating pads / hot water bottle / heated blankets etc – Hydrotherapy – Hyperbaric Oxygen Therapy (HBOT) – Laterality Training – Massage – Meditation –
- 4 ways in which meditation can help to relieve pain: http://www.spring.org.uk/2014/03/4-wonderful-ways-meditation-relieves-pain.php
Mindfulness based stress reduction – http://psychcentral.com/lib/using-mindfulness-to-approach-chronic-pain/00016290?utm_content=buffer607ea&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
Non-invasive acupuncture – uses electrical stimulation of acu’ points instead of needles (e.g. auriculotherapy which is on the ears)
‘Pacing’ activity: See Pacing and Planning Activity
Physiotherapy (e.g. gentle exercises, timed movements re affected areas e.g. walking)
Relaxation Techniques –
TENS machine – .
- Opioids aren’t the best treatment for CRPS, he described it as “using a sledgehammer to knock a nail in” but he reiterated that it is the only option we have when pain goes beyond a certain level.
- Several US States passed the Intractable Pain Treatment Act allowing them to legally prescribe Opioids in cases of intractable pain (http://www.painpolicy.wisc.edu/database-statutes-regulations-other-policies-pain-management )
- They can cause significant side effects including constipation, which must be taken seriously. It is often helpful for patients taking Opioids to ensure they take an effective Laxative treatment. Patients can also become tolerant to the meds and need to increase their dose.
There is also some helpful treatment information here
See also: Information for friends and family .
Vitamin C is recommended to be taken at 500-1500mg per day for 2-3 months after any injury or invasive procedure (including dentist treatments of course). Fantastically helpful with nerve repair. (P.T.O. for footnote on this) NB: Our bodies cannot absorb more than 500mg at a time so don’t buy tablets with any higher mg then that. Just space out the tablets through the day so that your body can absorb 500mg each time. It has also been shown to help prevent CRPS, so if you are concerned about loved ones who have had an injury/surgery/etc then let them know about this, x It’s also an antioxidant, which CRPS bodies need plenty of. And the plus side is that we pee out any excess vitamin C that our bodies do not need. .
Here’s one from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA): http://www.rsds.org/pdf/I%20Have%20CRPS_v3.pdf
And here’s what I created for my own array of health issues: https://elleandtheautognome.wordpress.com/2013/06/10/photo-challenge-for-crps-awareness-day-10/ .
Many CRPSers find that the changes in the weather affects their pain. Here’s one blogger’s experience of this: http://rellacafa.com/how-weather-influences-my-crps-symptoms/ .
Here’s an article with some ideas about how to approach working with chronic pain: http://letsfeelbetter.com/five-basic-rules-for-dealing-with-chronic-illness-and-your-career/ .
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 but there is still useful information available on the still accessible website. (There is also a potential resurrection for it, plus there is an international charity being created. More news as soon as I hear it, admin Marie, 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
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.
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 when the brain fog threatens to set in)! .
Ehlers-Danlos Support UK The Hypermobility Syndromes Association (HMSA)
Hi Elle, this information is invaluable & I thank you from my heart for all your hard work & help. x
Thank-you Daz, it is so wonderful to receive positive feedback, I sooo hoped that this would be useful to my fellow patients ❤ xx
What a fantastic resource you’ve compiled here! Thank you so much for your hard work, Love! Wonderful!
No problem hon’, it needed to be done and hence I disappeared from the blog for a while earlier this year. There’s always more to add so it’ll grow over time. Even today I had a suggestion from one fellow CRPSer who uses a mop to reduce the pain-payback when cleaning the bath. Genius! I love the things that get shared between all of us 🙂
Hope it’s ok to guest post this on Taming the Beast? ❤
Of course Lili, feel free, this info’ needs to be available to as many of our fellow patients as possible.
We’ll get this info’, and more, on the charity webbie when it’s up and running too, xx
Love it. It is awesome. Please add pinterest button so it can be pinned. Best, Elle
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