Originally posted January 28, 2012; Last Updated: February 2, 2013
I have more research and updates to add to this when I can, I’ve got a lot of papers to organise into themes first though. Feel free to ask me questions in the meantime, x (April 9, 2014)
CRPS: Complex Regional Pain Syndrome. Previously known as RSD (Reflex Sympathetic Dystrophy) and Causalgia, among (many) other names!13B
Two quick but important asides: If you don’t have CRPS….
– ..take Vitamin C after injuries and operations to help to avoid developing it.(9, 12, 13 & 16)
– ..don’t use ice on an injury, or really cold compresses. (The skin mustn’t get below 10 degrees centigrade). This can initiate CRPS.7 If you do use ice, be sure not to place it directly on the skin (wrap it in a teatowel or such like), and don’t leave it more than ten minutes at a time… ten minutes on, ten minutes off. (As per the recommendation of my doctor for non-CRPS patients).
There’s good research backing these up. 🙂
Even if you do have CRPS, bear these in mind after a new injury, surgery or an invasive procedure of any kind, x
Re the interview with Paula Abdul the other year that got zapped around the internet (in May 2012)… it’s fantastic to see the explanation of how CRPS malfunctions and the message of nutrition and looking after your body is a massively important one, but one very misleading mention was that ice relieves CRPS pain. There is one subtype of CRPS for which ice relieves pain, but for all other CRPS types it is to be avoided as it can be very damaging indeed. And as healthy individuals have no way of knowing whether their mitchondria carries the predisposition to CRPS, then we all need to be aware of the possible damaging effects of using ice. Just thought I’d clarify. A lot of CRPS patients were quite rightly worried that the ice message would get taken on board generally, so I’m mentioning it here.
I’ve written this page because… none of my doctors could tell me this stuff. I’ve had to find out about CRPS for myself during the past 12 years of living with the condition. It’s a hard slog, even with my background in post-graduate research, and I’d like to save some of my fellow CRPSers out there a bit of the hassle. Information on the internet varies in relevance because research is always happening, and it changes the understanding of CRPS. There is often no way of knowing whether the information found is current, or whether it’s now outdated. Which is why I’ve listed at the bottom of the page where this info’ has come from, (mostly peer reviewed research papers), so that you can see how recent it is, and it gives you a place to start if you want to know more. Bear in mind that just because something can happen with CRPS, doesn’t mean that it will happen. I’ve just tried to cover most aspects here because each of us may be looking for different bits of CRPS info’. Think positive, love from me, x
What is CRPS?
CRPS is one of the conditions caused by autonomic dysfunction. It is a form of localised dysautonomia, and can remain localised. The genetic predisposition can become reality after the simplest of injuries, even a sprained ankle.4 It doesn’t necessarily kick in with the first injury in our lives, though. My own body waited patiently until I was 24 to surprise me!
The human body reacts to injury when the nerves send pain messages to the brain. The brain responds by inflaming the damaged area to protect it while it heals. This is all automatic; we don’t have to think about it, it just happens. And that’s one of the many jobs of the Autonomic Nervous System, or ANS for short, which runs the automatic processes inside our bodies.
The problem with CRPS is that the ANS is behaving in a faulty manner. The area can heal, but the pain messages persist, and so the area continues being inflamed. The brain is trying to do the right thing, but the messages it’s getting are not quite right.
And the trouble with long-term inflammation is that when everything gets swollen up like this, everything is getting squished. Including the blood vessels, which are trying to supply all of the tissues in the affected area. By all of the tissues I mean everything; bones, muscles, tendons, skin, nerves, eeeeverything. And lack of vital oxygen results in damage to these tissues if the condition is diagnosed too late. Which it often is, if it gets diagnosed at all.6
If the condition is diagnosed within 6-18 months and the nerves have not been permanently damaged, the effects can be shifted into remission7. However, most patients are diagnosed late6 and will require support to tame the condition, to some extent, and to find ways to live with what can’t be tamed.
There is now evidence that there are various sub-types of CRPS1B, (for example the noted differences between the patients who cannot withstand cold, and the much smaller number of patients who cannot withstand heat)6B, 2B.
Most medical practitioners do not know enough, or even anything, about this condition condition simply because it is a tertiary level specialist condition that covers multiple disciplines, and as the symptoms are medically confusing, diagnosis is often delayed.7 This means that no matter how many times a patient goes back to the doctors’ surgery about their symptoms, they can still experience being falsely advised that their symptoms are psychological. For example that they’re depressed, or being told that it’s ‘all in their head’, and the medical practitioners don’t even realise that they’re missing anything vital at all7, 13. Research has found no psychological difference between CRPS patients and control groups1A. Yes, us CRPSers do often experience depression at some point along the line, but it is caused by living with CRPS, not the other way around.15, 4AA, 7C
It can take many referrals to various specialists picked almost at random before the patient sees someone who makes a connection and gets them re-referred to someone else who’ll finally get it right. It took me six years from injury to diagnosis, which is a little over average, but it happens.
Experts still don’t fully understand CRPS. But every new piece of research gets added to existing knowledge and theories to help form a better picture.
There used to be a concept of three stages of CRPS development 2. But it turned out that these stages do not have to follow each other, a patient can stick at a stage2. They do not have to happen in this order2. And there is also no consistent time scale between stages, some people have gone from stage 1 to 2 in a fortnight. So even when the experts try to pin the condition down it still has its own rules. Or lack of them! So these stages were discarded2, 1B, but you’ll still find information about them dotted about online, which is misleading when you’re trying to find information that’s actually up-to-date.
CRPS is currently viewed as involving interactions between the immune system, the ANS and the Central Nervous System,10 (or CNS for short, which is involved in external actions such as how we move our body).
There are a load of symptoms that go hand in hand with CRPS and these have been used to compile and amend a diagnosis reference. The kind of CRPS symptoms that can be experienced in the affected parts of the body are5:
- Skin temperature, skin colour changes
- Pain being caused by things that you wouldn’t ever expect to cause pain, the lightest touch can cause pain in some patients (allodynia/hyperalgesia)
- Muscle contractions causing unusual movements and postures (dystonia)
- Fluid build-up causing swelling (edema)
- Lower bone density as they become more porous (osteoporosis)
- Changes in hair/nails/skin
- Sweating changes, sometimes sweating varies from one side of the body to the other
- Reduced response to stimulation of nerves/body areas, responses can vary from one half of the body to the other (hemi-body hypoethesia)
- Oddness of the Central Nervous System (CNS). The CNS is made up of the brain and spinal cord which use the information from the wider spread ANS to control and co-ordinate what we do. The CNS can do some odd things when it’s dependent on a faulty ANS for it’s information.
- Avoiding using the part of the body which hurts, which then causes additional problems like the muscles starting to waste away through lack of use (atrophy)
As the condition develops the pain becomes continuous, it is truly relentless. There are brief periods where it may not be as severe, but considering that the pain experienced is off the scale of previous personal experience for most patients, the lesser pain moments are still excruciating by ‘normal’ standards. No wonder the natural response is to stop using whichever part of our body is affected.
The McGill Pain Scale shows the level of pain CRPS patients are dealing with. You can see the placement of CRPS in the pic’ below.1 CRPS is consistently and reliably shown as having higher pain levels than childbirth and digit amputation, for example.
The McGill Pain Scale is not just a number on a scale. It is compiled from lots of data which includes numerical scores, but also descriptive words patients used to answer various questions about the pain experience which were then assessed for additional aspects such as consistency. It has been researched very thoroughly over the years and has withstood all tests into reliability, so it’s a really useful tool to get our heads around pains that we may not have experienced personally, and for putting our own pain into some kind of perspective for others.
After looking at this pain scale it might be good to pause and remember that this pain is relentless. It is also very important to understand that CRPS patients become very good at covering up, and even functioning through, their pain simply because they have to function around it permanently. Research into chronic pain has found that those who experience higher pain levels as part of their condition are less likely to report those pain levels even though they are just as painful2A.
So the best way to find out how much pain a CRPS patient is in is to ask them. Trying to assess their pain visually, and even physically, is very unreliable as their responses to continuous familiar pains are often very low key when compared to the responses of non-CRPS patients dealing with a matched scale pain level.
Patients reporting their CRPS pain are to be taken very seriously.
Some CRPS info’:
- It can spread. It doesn’t always, but it can. And if it does, it does it weirdly. This is because it spreads through the ANS, (which is wired up representing a grid form), rather than from one body part to another connected body part. So yes, it really can spread straight from the right knee to the left knee, without having to go via any other body parts.14
- It’s can spread simply as a result of a new injury in an unaffected area. In my case, as the CRPS was already throughout both legs, it then spread to a new injury in one of my hips very quickly.14
- For this reason anything invasive should be avoided. So… no operations unless absolutely necessary.7
- Suicide and suicidal thoughts are all part of living with a condition that causes such high levels of pain and, at its worst, reduces ‘living’ to ‘existence’. On the plus side, those that come through it are deemed to be some of the strongest and most determined of people17 and get a blummin’ huge cheer from me for hanging in there.
- About 75-80% of CRPSers are women10AA & 2AA and most cases start in an injured extremity.
- Neurological effects of CRPS, (including long term cognitive and mood changes),8 are often incorrectly treated as they are not recognised as part of the condition. New research will hopefully help to combat this lack of awareness, as it has been recently shown that neuropsychological deficits are present in 65% of CRPS patients. These deficits have been noted in the executive functions, (for example planning, organising, self-awareness, self-regulation and initiation of action), word recall (lexical memory) and conscious memory of events (declarative memory).7B
- Sleep is understandably affected by the constant pain and makes additional impacts on health.11
- Strangely, painless CRPS can exist. It is very rare, but basically presents with all the other symptoms, just without the pain.3
- Ice-packs are bad for the majority of CRPS forms and can even be part of the development of the condition. The ANS is made up of the sympathetic (response to external events) and parasympathetic (balancing these effects). A temperature drop to 10 degrees centigrade shuts down the parasympathetic system, whereas a further drop to 0 degrees is required to shut down the sympathetic, so when an ice-pack reduces the temperature to 0-10 degrees, only the sympathetic system is running and the experience becomes one of continuous burning pain because one is not there to balance out the other.7
- It can affect the Central Nervous System (CNS), too. Apparent in outward signs such as tremors15 and spreading to a new area without a new injury, owing to some rewiring of the brain that occurs.14 Research has even shown that children with CRPS have significant changes in the wiring of the CNS: the brain responds to stimuli differently in affected CRPS areas of the body than it does in unaffected areas, even after recovery7A. And in adults, research has demonstrated that structural cortical and subcortical reorganisation is directly associated with chronic pain.9A,10A As a result of investigating such sensory and motor abnomalities in CRPS, research back in 1998 discovered that dysfunction of the medulla is common regarding skilled movement of fingers, toes etc (corticospinal function), and pain signals from the body (spinothalamic function) and face (trigeminothalamic function)13A. The medulla, part of the CNS, is involved in control of autonomic (automatic) functions and demonstrates another tangible link between CRPS and general dysautonomia. More recent research has demonstrated further evidence of cortical reorganisation is CRPS, pointing out that it is incorrect to think of this condition as a peripheral disorder8A.
Other related conditions can develop (known as co-morbidities). As CRPS is based on having a faulty ANS, and because the ANS runs all automatic processes in your body, any other automatic processes are also at risk of developing wobbly functioning if a trigger event is sufficient enough to set it off. See also info’ on Dysautonomia (autonomic dysfunction). For example:
– Fainting, and near-fainting symptoms, are common in CRPS , especially if the lower limbs are affected. Autonomic dysregulation in the lower limbs can result in impaired regulation of blood vessel size (the vasoconstriction function becomes compromised) which then results in blood pooling and lower blood pressure, causing a higher heart rate, and fainting is the body’s way of resolving the issue12A.
– CRPS patients can have greater intestinal permeability4A, with outcomes such as developments of food allergies.
Doctors need to be made aware that various autonomic issues can crop up, and the concept of general dysautonomias is good to keep in mind to enable appropriate referral to a specialist who has the crucial experience required to treat this complex and medically esoteric condition.
Multi-disciplinary Pain Management teams have improved their ways of working with CRPS patients over the years. With better understanding of this condition, (and of the patient’s experience of it), comes improved support, and improved outcomes.
- Physiotherapy for muscles that have wasted (atrophied) through lack of use owing to high pain levels.
- Teaching about the ANS and how controlling the amount of activity with the affected areas can be used to retrain the ANS so that the pain signals reduce from the amplified levels to more relevant levels.
- Psychological support regarding understanding the processes, what are our best coping mechanisms etc. Brilliant when with a qualified Clinical Psychologist as they are trained to encourage and assist us and also have knowledge of the condition, (or if they don’t they’ll go away and find out). Very refreshing! The new psych’ approach also focuses on accepting the condition so that we can move on to focusing on what we can do to live with it, rather than not living our lives whilst waiting for a magical cure to be discovered.
- External treatments, such as TENS machines (which administer minor electrical pulses) or application of warmth through baths, not-too-hot water bottles etc. (NOT ice, this can make it worse).
- Pharmacology. Prescribed painkillers are common. A lot of people have injections as well. There are side effects and long-term issues to be weighed up for each individual. Although if the physio’ knowledge is employed over time to reduce ANS amplifications of pain signals, this can be reduced to ‘over the counter’ painkillers when needed. (It’s taken years for me to get to this stage, but it’s well worth it).
- There’s always research into other treatments, and sometimes there are new trial treatments available, but they are often offered in a country we don’t happen to live in and can be really expensive. Some have scientific back-up, some are part of research projects and some are dangerous, but patients have turned to them because they are desperate. They don’t fall under general treatment techniques from the pain management team, and it’s not something I know masses about because I try to use as few med’s as possible.
(There’s one reference missing as I am still searching for the magazine with the relevant publication in it. I suspect it has prematurely been tidied away into the loft! When I come across it again I shall update the missing reference for you, x)
1. Australian Reflex Sympathetic Dystrophy Syndrome Support Group, The (2006), in http://www.ozrsd.org/forum/kb.php?mode=article&k=4
1A. Beerthuizen, A., Stronks, D.L., Huyen, F.J. et al (2011) ‘The association between psychological factors and the development of complex regional pain syndrome type 1 (CRPS1) – A prospective multicenter study’ in European Journal of Pain, Vol. 15, Issue 9, pp 971-975
1B. Bruehl, S. et al (2002) ‘Complex regional pain syndrome: are there distinct subtypes and sequential stages of the syndrome?’ in Pain, Issue 95, pp119-124
2. Carden, E., ‘Reflex Sympathetic Dystrophy Complex Regional Pain Syndrome (CRPS) Recognition and Management for the Physician’, http://ww1.prweb.com/prfiles/2008/05/22/968434/0_carden_crps_physician.pdf
2A. Cook, I.J., van Eeden, A. & Collins, S.M. (1987) ‘Patients with irritable bowel syndrome have greater pain tolerance than normal subjects’ in Gastroenterology, Vol. 93, Issue 4, pp 727-833
2AA. de Mos, M., de Brujin, A.G.J., Huygen, F.J.P.M. et al (2006) ‘The incidence of complex regional pain syndrome: a population-based study’ in Pain, doi:10.1016/j.pain.2006.09.008
2B. Eberle, T, Doganci, B, Kramer, H.H. et al (2009) ‘Warm and cold complex regional pain syndromes’ in Neurology, Issue 72, pp505-512
3. Eisenberg, E. and Melamed, E., (2003) ‘Can Complex Regional Pain Syndrome be Painless?’, Pain, Vol. 106, Issue 3, pp 263-267
4. Fields, R.D., (2009) in ‘New Culprits in Chronic Pain’, Scientific American’, Vol 301, Issue 5, pp50-57
4AA. Glick RJ, Chopra P, Richardi T. Rethinking the Psychogenic Model of Complex Regional Pain Syndrome: Somatoform Disorders and Complex Regional Pain Syndrome. Anesth Pain. 2012;2(2):xxx. DOI: 10.5812/aapm.7282
4A. Goebel, A., Buhner, S., Schedel, H. et al (2008) ‘Altered intestinal permeability in patients with primary fibromyalgia and in patients with complex regional pain syndrome’ in Rheumatology, Vol. 47, pp 1223-1227
5. Harden, M.D. & Bruehl, S. (2007) in ‘Proposed New Diagnostic Criteria for Complex Regional Pain Syndrome’, Pain Medicine’, Vol 8, Issue 4, pp326-331 [This reference has only been used regarding the list of CRPS symptoms, and it gives me a good excuse to tell you that Harden has been discredited for faking results. There are a few researchers out there like this, the way the US health system works is not conducive to some less moral researchers sticking to a code of ethics. http://www.rsdfoundation.org/en/harden.htm. Also to be avoided for faking results is Reuben, S.S. http://online.wsj.com/article/SB123672510903888207.html)
6. Hooshmand, H., (1999) ‘Complex Regional Pain Syndrome, Reflex Sympathetic Dystrophy, Diagnosis and Therapy – A Review of 824 Patients’, Pain Digest, Vol. 9, pp 1-24
6B. Hooshmand. H. (2000) ‘Ice versus heat’ http://www.rsdrx.com/rsdpuz4.0/puz_102.htm
7. Hooshmand, H., (2007) ‘What is RSD, What is Sympathetic Anyway?’, http://rsdrx.com/what_is_rsd.htm
7A. Lebel, A., Becerra, L., Wallin, D. et al (2008) in ‘fMRI reveals distinct CNS processing during symptomatic and recovered complex regional pain syndrome in children’, Brain, Vol. 131
7B. Libon, D.J., Scwartzman, R.J., Eppig, J. et al (2010) in ‘Neuropsychological deficits associated with Complex Regional Pain Syndrome, Journal of the International Neuropsychological Society
7C. Lohnberg, J.A. & Altmaier, E.M. (2012) ‘A review of psychosocial factors in complex regional pain syndrome’ in Journal of Clinical Psychology, DOI 10, 1007/s10880-012-9322-3
8. Marinus, J. et al, (2011) in ‘Clinical Features and Pathophysiology of Complex Regional Pain Syndrome’, The Lancet Neurology’, Vol 10, Issue 7, pp637-648
8A. McCabe, C.S., Haigh, R.S., Halligan, P.W. et al (2003) ‘Referred sensations in patients with Complex Regional Pain Syndrome Type 1’ in Rheumatology, Vol. 42
9. Pleiner, J. et al. (2008) ‘Intra-arterial vitamin C prevents endothelial dysfunction caused by ischemia-reperfusion’, Atheroscelorsis, Vol. 197, Issue 1, pp 383-391
9A. Ramos-Remus, C. & Duran-Barragan, S. (2010) in ‘Neurological Involvement in Rheumatoid Arthritis’, Current Immunology Reviews, Vol. 6, Issue 3
10. Rooij, A.M., (2010) in ‘Genetic and Epidemiological Aspects of Complex Regional Pain Syndrome’, Doctoral Thesis,LeidenUniversity (take the ‘chapter 4′ summary with a pinch of salt, as I’ve mentioned earlier, it’s been shown that their are no psych’ differences between control groups & CRPS groups. So if you rpint this paper out, perhaps also print off the more recent paper by Beerthuizen et al, listed here above as reference ‘1A’)
10AA. Sandroni, P., Benrud-Larson, L.M., McClelland, R.L. & Low, P.A. (2003) ‘Complex regional pain syndrome type I: incidence and prevalence in Olmsted County, a population based study’ in Pain, Vol. 103, Issue 1, pp 199-207
10A. Schmidt-Wilcke, T., Leinisch, E., Gänßbauer, S., et al (2006) in ‘Affective components and intensity of pain correlate with structural differences in gray matter in chronic back pain patients’, Pain, Vol.125, Issue 1, pp89-97
11. Schwartzman, R.J., et al. (2009) in ‘The Natural History of Complex Regional Pain Syndrome’, Clinical Journal of Pain, Vol. 25, Issue 4, pp. 273-280
12. Smith, H.S. (2010) ‘The Role of Genomic Oxidative-Reductive Balance as Predictor of Complex Regional Pain Syndrome Development: A Novel Theory’, Pain Physician, Vol. 13, pp79-90
12A. Smith, J.A., Karalis, D.G., Rosso, A.L. et al (2011) ‘Syncope in Complex Regional Pain Syndrome’ in Clinical Cardiology, Vol. 34, Issue 4, pp 222-225
13. Stevermer, J.J. (2008) in ‘Give vitamin C to avert lingering pain after fracture’, Priority Updates from the Research Literature from the Family Physicians Inquiries Network
13A. Thimneur, M., Sood, P., Kravitz, E. et al (1998) ‘Central Nervous System Abnormalities in Complex Regional Pain Syndrome (CRPS): Clinical and Quantitative Evidence of Medullary Dysfunction’ in Clinical Journal of Pain, Vol. 14, Issue 3, pp256-267
13B. Todorova, J. (2012) ‘Complex regional pain syndrome acceptance and the alternative denominations in the medical literature’ in Medical Principles and Practice, DOI: 10.1159/000343905
14. van Rijn et al, (2011) ‘Spreading of Complex Regional Pain Syndrome: Not a Random Process’, Journal of Neural Transmission, Vol.118, Issue 9, pp 1301-1309
15. Wasner, G., et al, (2003) in ‘Complex Regional Pain Syndrome’ Spinal Cord, Vol. 41, pp 61-75
16. Zollinger, Paul.E., (2010) ‘Upper and Lower Limb Orthopaedics: Prevention of CRPS & Other Traumatology’, Open Orthop, Vol. 4, Issue 61. Published online 2010 February 17
17. T’was in one of the British Psychological Society mag’s I have, I just haven’t been able to find the original article, yet!
Hey there, you’ve put a lot of work into this hon – might I suggest a few more tags though?
Tags are what enable people to find your funky site – every post should have ’em.
Hope things are good with you today 🙂
Cheers Rory, I wasn’t sure how many tags to have. I know they’re the search links, but WordPress advocates no more than 5 tags otherwise the blog won’t show up in their listings, and I wanted searchers of CRPS and Dysautonomia to be able to find this info’ in case it would be helpful. I figured that those two tags, and ‘health’, were the most relevant and so I kept it simple. I’ll have a look at searches and have a think, perhaps there are a couple more useful ones I could add, x
hello there, I didn’t know about the 5 tags rule. I am a sufferer of CRPS too (hands) so thank you for this info. Some not relevant but appreciate all your hard efforts to help others with the condition. Cheers!
Ooh, a thought occurs to me (must be that time of year!) Have you looked at Wikipedia? Your article here has so much info and is so well researched – I wouldn’t be surprised if it’s better than the current Wiki one. (Err, ok so I haven’t looked myself…) If so, then you can register with Wikipedia and copy and paste most of this in. It should help spread the word…
Weeell, I’m not an expert. No wait, I am an expert patient. But still, not a medical expert, so it never occurred to me. All this info’ is from proper research papers over the years, mind you. And I certainly would love to be able to raise awareness. Your faith in my wobbly brain is astounding, hehe
hello there Tinderbox thats a great idea, I hope they can do that.
Well done you! Very informative and well written. Hopefully, this will help others to get diagnosed earlier so they will not have to experience the pain and frustrations that you have had to endure!
Thanks Suzi, I really appreciate your input. It’s lovely of you to say it’s well written, I’m no writer but I tried to make an awful lot of information as accessible as I could. It’s taken me years to find out all of this about my own condition, so I’m hoping I may save some fellow CRPSers some of the hassle by posting what I know all in one place. Thanks for having a read, lotsa love from me, xx
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hey just read your site. very informative, i have crps myself and doctors just don’t seem to understand what you go through with this. And its anoying that i’m still at school, so most of my teachers don’t understand either. So i thought i would show them your informative site to MAKE them understand.
i do have one question though, i reasently broke my finger (not much if you think about it) but it feels like it might have (caught) it there aswell. is that possible? can it get in more places each time i hurt myself e.g. stubbing a toe?
Does age make a difference? i’m 16
Hiya Emily, I know what you mean about people not understanding. It’s an unusual condition that even medical practitioners don’t really get to learn about as part of their general training. It’s hard on us patients who always end up trying to explain it ourselves. It’s why I started this blog in the first place, hoping to make myself useful to my amazing fellow patients.
It’s definitely well worth waving professional information at doctors/teachers if it takes the heat off you trying to explain it all the time. It gets really tiring having to keep explaining it over and over, so some handy offprints or online links can be helpful. I’m sooo pleased that the data I’ve collated can be of use to you.
There are some sites out there which can also help with the info’ that you can give to others, although it is tricky trying to pull all the information together from all the different sources, which is why I ended up creating this page on my weblog – trying to make a lot of info’ available in one place! There’s an organisation called the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) which has some handy information. (It’s under the old name, but they use it to be consistent and lot of medical staff still use RSD as reference). Their website may be helpful to you, too, their link is http://www.rsdsa.org/organization.html
The RSDSA also have a handy wallet card which you can print off so that when you are having a bad day you can just hand the card to people to read for themselves instead of having to explain it all. The link for that is http://www.rsds.org/pdf/I%20Have%20CRPS_v3.pdf I printed off a copy and covered it in sticky-back plastic so it lasts longer and looks more professional, too!
As for the spreading of CRPS, as you’ve read, it can sometimes spread and that the way the ANS is wired up means that it can spread in interesting ways, like jumping to the opposite side of the body. It does not mean that it will spread, though. Lots of people have CRPS restricted to an arm or a leg, for example. But it is more likely to spread in some cases if there are new injury sites. In my case, injuries like torn muscles or ligaments that are near the existing CRPS areas have also become affected. But whacking my hand on a doorframe, (as I often do!), hasn’t caused it to spread. And I’ve got CRPS friends who have had no spreading at all. So not every minor injury, or even any injury, is necessarily going to cause any spreading. And even in the areas it has spread to, I already know what it is so I can keep the physio’ going, keep those muscles working, and the symptoms are way less than the ones I have in the areas that got really bad before getting diagnosed. You know your body best, you know what your CRPS areas feel like, so if you have concerns talk to your doctor and get to a pain management clinic to discuss exercises. No harm in checking it out, if it’s CRPS you’ll be onto it super-quick and of course it could easily turn out to be good news and your finger could be healing nicely. I always believe in thinking positive but getting stuff checked out just to be on the safe side, x
CRPS can crop up at any age, but younger bodies have greater ‘plasticity’ to encourage positive change if possible. The main things are getting diagnosed as soon as possible, sticking with the physio’ exercises (even though it sucks at times, it really does help in the long run!), and getting a good healthy diet to fuel your body (vitamin C after new injuries is very helpful, so grab some different types of fruit for a while). Other than that, don’t be afraid to keep asking. CRPS patients often don’t get listened to simply because we have a condition which involves symptoms which are so easily misread. You know your condition better than most people around you, so trust in yourself and know you’re not alone. There’s quite a network of us CRPS patients around the world, and quite a few of us have professional skills which we put to good use, so if you need info’ just ask.. and if we don’t already have it to hand we’ll endeavour to find out for you, x
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I found this amazing, I was diagnosed earlier this year and this has been the most helpful information I have seen! I understand every aspect of this but thankyou so much for putting so I can easily share with those who don’t understand, trying to explain this has been a nightmare and so many people don’t believe me. Thankyou from all of us who are struggling x
Thank-you so much, Laura, for your lovely feedback. This page was the whole reason that I started this blog to do exactly what you’ve just said. I’m sooo pleased that this page is useful to my fellow CRPS patients. Huge hug from me, x
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Although early diagnosis and treatment is crucial to limit the disability from CRPS, it is a difficult condition to diagnose. Fortunately, there’s a growing community of doctors who are doing their best to help and come up with a cure. Just trust your instincts.
That’s a wonderful comment to receive from CRPS specialists, thank-you. There is indeed much research going on and great headway has been made in recent years. But what most makes me smile with glee about your message are the words “…growing community of doctors..”. “..growing…”, that is a fabulous word to see in that sentence. You’ve just made my day extra smiley, thanks 🙂
Hello!!! I wanted to THANK YOU SO MUCH for putting all of this information together!!!! I am a 24 yr old woman living with CRPS. I was diagnosed in 2008, 6 months after having a snowboarding injury in which I bruised 2 bones, sprained 3 ligaments, and fractured heel; all in my left foot. The Spinal Nerve Block injection only gave me 2 days of pain relief, after which I was told by my pain management doctor, who has been working with CRPS patients for 16 years, that the CRPS was permanent. They put me on different medications at first, Lyrica, Gabapentin, all of which cause horrible short term memory loss for me. At the time off all of this occurring I was getting ready to transfer to a university to complete my Bachelors in Psychology. Because of the cognitive effects of these medications I felt completely disabled and unable to learn anything new. I took myself off of these meds and dealt with the pain my first semester of school until I had the Spinal Cord Stimulator implanted. This has truly been the best course of action for me as the Stimulator REALLY helps with the relief of my pain, most of the time. It’s not 100% but it’s A LOT more manageable. It was extremely hard being 21 and determined as Permanently Disabled. I was really in denial the first year and not taking care of myself or using the stimulator the way I was supposed to, which was 24/7. The disorder spread from my left foot to both of my legs through my hips. In 2010 I had another surgery to have a second lead place with my stimulator so that it would cover both legs. I had complications during that surgery with the anesthesia and tried to get off the operating table when they were positioning the hollow needle to insert the wire into my spine. I impaled myself on the needle into my spine when I pushed up off of the table and then tore the tissue that holds the spinal fluid in the spinal column by trying to step to the side off of the table. After coming out of this surgery, my implant wouldn’t turn on!!! UGH!! PLUS, I had excruciating pain in my head due to the leaking spinal fluid and low pressure in my head. The doc basically said there was less fluid in my brian so my meninges were pulling down on my brian causing the pain and pressure. After being in the hospital for two days I went home, I had to lay on my back for 3 weeks, ON MY STAPLES from my implant surgery, so that the leak could seal. After about two months, still without the pain relief from my stimulator, the doctor scheduled another surgery to replace my stimulator with a new one, since they couldn’t figure out why mine was no longer working. For this last surgery I had, I had to be awake because of my bad reaction to the anesthesia. AWAKE FOR SPINE SURGERY!!! That was a scary feat for sure! The doctor let me put together a cd of music to listen to and they found a laptop for me to play my cd while I had the surgery. I ACTUALLY PREFERRED having this surgery awake!!! NEVER expected to feel that way, lol, but I did not have to come out of anesthesia and was able to just sleep afterwards. I have now been living with CRPS for almost 4 years. It still can be a day to day struggle but I am learning to accept the cards that I have been dealt and to try to find ways to still live my life in the exciting way I had before all of this happened. I am still working full time because I am so young and do not want to have to be on SSDI for the rest of my life. I am planning on getting my Master in School Psychology and want to be able to have a normal life. Because I have chosen this path, I deal with a lot of physical issues. I am on my feet sometimes up to 12 hours a day and come home EXTREMELY tired, in MASSIVE pain, and I can admit that I’m not always the nicest person to my fiance when I get like this. It is really hard to try to balance my life when work takes everything I’ve got. I want to have a social life and go out with my friends but I don’t always have the energy to do so. And, when I go out even though I don’t have the energy I definitely pay for it with not being able to sleep well, due to my pain. I never knew that there could possibly be cognitive effects for those with CRPS, and have dealt with my share of forgetting, problems with planning, and self-regulation. I also have experience almost passing out many times and never knew what this was attributed to!!! You article was very informative and although I have been researching CRPS for almost 4 years now I learned new things from the information you have presented!!! THANK YOU THANK YOU THANK YOU!!
PS> I DEFINITELY AGREE WITH YOU THAT HAVING TO LIVE WITH CRPS CAN MAKE YOU ONE OF THE MOST STRONG AND DETERMINED PEOPLE ALIVE!! WE CAN’T LET THIS DISORDER BEAT US!!!!
Wow, Carly, what an emotional response I feel after reading your message! I cannot begin to tell you how much it means to me when fellow patients tell me that the information I have gathered has been helpful. It is the whole reason I created this weblog. There are no words to describe how wonderful it is to feel useful again! And I want to help with regard to CRPS in any way that I can, so thank-you so much for the positive and reeaally encouraging message! *blub*
Reading your description of all that you have been through resulted in me sat here with my hands to my face and my heart going out to you. You have been through so much, and wow, you are still doing so much! I am sooooo very impressed that you kept on battling onwards to get to work on your Masters degree. Phenomenal work! I have no idea how you manage to function through such long working days, I am tipping my hat to you. You truly are amazing and a prime example of the strength displayed by the strongest and most stubbornly determined of CRPS patients. Those of us who fight the hardest do seem to have some personality traits in common! 😉
I keep finding out more about this complicated condition, making new links and discovering new intriguing themes amongst fellow patients. I’ll keep on adding more info’ to this page as I come across it, as soon as I have appropriate journal back-up, of course! 😉
It’s an absolute pleasure to have ‘met’ you, I am cheering you on sooo loudly that you might just hear me all the way from the UK tonight! Love, best wishes, and my best attempts at pom pom cheers, xx
Thank you sooo much for your response!! As many people do not understand what I go through on a day to day basis, it’s nice to get such support and encouragement from you!! I had the same emotional experience from reading your blog and the posts people have made and my heart told me I had to respond and share! It makes me feel stronger to know that there are others out there who are fighting, just like me, to not let this disorder rule their life! It’s truly an honor to have “met” you and I sincerely look forward to following your blog and reading and meeting fellow CRPS patients through it!! Thank you again for the time you have put into creating such an amazing source of information and support for our community!!!! 😀
Oh Carly, you deserve much support and encouragement. I salute you for all that you have come through and for how determinedly you have hung onto who you are as a person. You officially rock! It really is amazing to meet other patients around the globe, each with their own set of superhero powers and astounding levels of determination. Thank-you for your wonderful message, it truly is my pleasure to be useful or helpful here in any way that I can, x
I want to thank both of you for your information here. I am a 24 year old high school teacher. I’ve had CRPS in my right arm since May 2011 but was diagnosed in February 2012. Nerve blocks and physical therapy worked for me for several months, so much so that I moved to Spain to work on a Master’s degree in August 2012.
Unfortunately, my body simply couldn’t handle the stress and change. I came home in December and left my husband there to finish his degree. I’ve been waiting on insurance and doctors, but I finally was approved to have a trial Spinal Cord Stimulator put in at the end of April.
Carly, I am so happy to read that your SCS provided you relief. I am sorry to hear that you had problems with your second surgery and all of the aftermath. You are a strong and amazing woman to continue your life according to YOUR plans.
Thank you both for the great information and affirmation that I am not a crazy person and these weird symptoms are actually related.
I am looking forward to conquering this menace and continuing my life!
I will be finishing my Master’s and I will also go back to teaching high school Spanish in the fall.
Thank you, thank you, thank you! Best wishes and healing prayers to both of you.
I’m so so glad that my page, and Carly’s comments when she found the page too, have been helpful to you. When we patients come together and share information it is so very useful and I’m so honoured and privileged to meet fellow patients like yourself and Carly. Thank-you so much for the feedback, it is so good to know that I’m on the right tracks. There is more for me to add to this page when I’ve recovered from the dissertation deadline push. I’ll be working to keep this page updated with new research as it crops up so I hope it continues to be helpful, xx
I am super impressed that you’ll be completing your masters degree despite the CRPS, fantastic work hon! You deserve all that you are achieving, it is fabulous and inspiring 😀
Good luck with the degree completion, and with getting back to work to do what you love. Huge hug (and pom-pom-waving cheers) from me, x
Had my first experience with getting tingly and felt like I was going to pass out. Searing Headaches started about a month ago. Developed CRPS in May 2012, after a leg fracture and ankle fracture, tore all tendons and legaments.
Hi, I’m so glad that you’re only just about a year since injury as you stand a better chance of calming things down in the earlier days. I hope they’ve set you up with some pain management and appropriate physio’ for your CRPS. Definitely chat to your doctor about the near-fainting experience, and if your doc is not familiar with how CRPS can effect that kind of response then pop over to my ‘Useful Links’ page (the tab is at the top of this page just under the main picture at the top) and have a look at the research listed there. Medical term for fainting is syncope (pronounced sin-copy), and there’s one paper which talks about this in particular: Smith’s paper on syncope and CRPS. Feel free to follow the link to the paper and print it off to show your doctor. Hopefully that will help him/her to act on the information. Big hugs and best wishes to you, x
Hey Elle! I had REALLY tough day yesterday with my pain. I got off work and it hurt my feet to even have them touch the floor of my car, let alone push the gas pedal. I got home and turned up my implant stimulation and the battery died!! I had to recharge and could not get my implant on again until this morning. Last night, in the midst of tremendous pain, I turned to writing poetry to get my mind off of things. I wanted to share what I wrote with you and anyone else who may be reading this facing a similar experience! 😀
That burning pain inside,
It never does subside.
I feel it through my bones,
through the core of me it goes.
No one else can see the pain
that comes and goes again and again.
Will anyone ever understand
the things that make me who I am.
I won’t let the pain define me,
though it kicks and screams inside me.
I will fight with everything I have,
until the very end.
Although at times it beats me down,
I’ll get back up again.
Despite the strife, this is MY life
AND I WILL WIN!!!
Hi Carly, I said it on the Facebook page and I’ll say it again here… I love the use of poetry for getting feelings out as well as a distraction tool for the pain. Superb stuff, hon 🙂
I love this poem of yours, especially the positive up note that it ends on. From what I know of you since meeting you on the Facebook blog page, I can already see your strength, intelligence, positive take on things, creativity and love of a bit of fun and silliness (hope the Halloween events are great fun this year) all working beautifully together to keep you going. You are doing truly fabulously hon’, three cheers 9and then some) from me, xoxox
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Fantastic work! This piece will be invaluable to many… Thank You!
Thank-you Lili, that means soooo much to me, especially coming from someone like your good self who has so much knowledge about the condition. I’m adding in extra info’ and references to this when I can so I’m hoping to keep expanding the info’ here, as well as the research back-up for doctors (re the reliability of my info’), and keep it up with the new discoveries, too. Auto-immune ref’s need to go in here now that the research is backing it up, sooo much to do! 😉
Very interesting info. I actually stopped by your site because you have POTS, but I enjoy learning about other forms of dysautonomia. It all needs to be better understood by more people.
Oh my mistake. You don’t have POTS. I found you searching for “dysautonomia.” It’s amazing how similar the diagnostic experience is for dysautonomics even though the symptoms are so varied.
Hiya, yep I haven’t had a specific type of Dysautonomia diagnosed yet. Of course it was all initiated by the CRPS, but these days the Dy’s stuff far outweighs the CRPS pain experience. I fit the POTS or NCS style symptoms, so I had a load of tests done a month ago in London to try to pin down what exactly is happening to the sympathetic and parasympathetic parts of my autonomic nervous system. While I was in there I spotted the tilt table graphs for PAF, MSA, NCS, POTS etc and was advised that as the symptoms for them all are basically the same, the only way to pin it down is to run those specific tests. So hopefully I’ll get to see the consultant spec’ in the new year and find out a little more details about what is going on. I have suspected EDS, as well. We all have such huge overlaps between these very similarly founded conditions, don’t we? Did you see the ‘What is Dysautonomia?’ page as well? As that will probably have a lot of your symptoms listed there. Lovely to meet you, hon, hope your day is going as smoothly as possible, xxx
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Did you contribute to Wikipedia as Tinderbox Designs suggested? Their page has definitely been improved and updated since I last looked about 2 years ago. Can I also just mirror many of the comments on here about how useful your page is? I also have searched far and wide for information and yours is brilliant. So often I find interesting articles and research but I have to have a scientific dictionary next to me to decipher them! My background is not science. Thank you Thank you
Hi Dawn, no I never did add to Wiki, but I know the lady who keeps it updated. She’s a fellow patient who has a handy educational background for the job and has done lots of research to keep updating it when she can. She’s a great gal for putting the effort in to help fellow patients and she knows where my info’ pages are if she wants to see if we’ve found anything different in the research so hopefully we are grabbing lots of info’ between us, xx
Awww, thank-you for that lovely comment about this page 🙂 This is the whole reason I created this weblog, to get info’ out there that fellow patients can easily find all in one place and with the crucial references, too, because the quality of CRPS info’ on the internet is variable to say the least! I’m so so sooooo glad that you’ve found it useful. I have some more research info’ to add to this when I can get to do it, whenever I do so I note the latest update date at the top of the page so you can see how recent the info’ is, xx
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This is fabulous information! You did a remarkable job putting this ALL together so that others can hopefully have a better understanding of this. A++ on this paper! Great big Thank You for taking the time to do the research and put this all together so beautifully. I am printing this out to share with not only my family and friends, but my Doctors as well. Great job!
Thanks Tami, I am so pleased to be able to help 🙂 I will be adding some more info’ to this page when I can, x
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Really interesting & helpful. Was lucky my orthopaedic consultant diagnosed me very early at fracture clinic. I was able to find out about CRPS, read, learn, work at it. Yes its still there, flares up, settles down, I get confident, cut down meds, slight knock or doing too much gentle aerobics or Yoga & I’m reminded – painfully! But I’ll get back to that better place in a bit, I’ll just have to work at it. Your explanation of what’s happening to the body in CRPS is so good & makes so much sense. I consider myself fortunate to have it only in my right hand, arm, shoulder (started in my right hand) following a complex elbow dislocation & fracture 14 months ago. I can’t straighten my arm but have rejected the contracture release op on the basis that neither I, nor the surgeon knows whether it would cause the CRPS to take me back to the awful persistent pain hell I was in for months on end. I can recommend a book I read ‘The Pain Management Handbook’ by Neville Shone not specific to CRPS but of the several books I’ve read this helped me the most.
Thank you again for your fab work on this horrible condition.
Thank you so much Sarah, I intend to update this page bit by bit but I’m so glad that what is here currently has been of help to you.
I’m also glad you found a book that has helped equip you for managing this condition. Being able to add to our toolkits is so important.