CRPS Signs & Symptoms
CRPS has a number of signs and symptoms but not every sufferer will get the same signs and symptoms as someone else. In effect all complex regional pain syndrome patients are individuals where their signs and symptoms are concerned even though the treatments available are the same.
You may hear people refer to the ‘Stages of CRPS’ which is covered later in this page, but many doctors now don’t lend much weight on the Stages as every sufferer is different in terms of when they have a particular symptom of CRPS. The time frames given for each of the stages are just approximates but not everyone will go through each of the CRPS stages in turn and some sufferers won’t through the stages at all. However we have included the CRPS stages on this page to give you an approximate time frame and show how the various symptoms change and amplify. (Hooshmand, H. & Phillips, E.M.)
On this page we will discuss the following:
- Majority (but not limited to) of the signs of this chronic neuropathic pain condition; CRPS/RSD
- Stages of CRPS which as we’ve mentioned, doctors don’t lend much weight to any more, but it will give you an approximate idea of how the condition can change with time
- Main symptoms of CRPS
- Spreading of CRPS
Signs of CRPS
- The main sign of CRPS is PAIN that is not in proportion to the injury and has lasted for a longer period than it should have done.
- Type of pain involved including aching, deep, burning or stabbing
- Skin sensitivity – including extreme sensitivity to something that shouldn’t cause you pain such as cloth or water (ALLODYNIA)
- Skin sensitivity – this is a heightened sensitivity that should cause pain (HYPERALGESIA)
- Hair and nail changes
- Joint swelling and stiffness
- Abnormal skin colour changes
- Tremors and muscles spasms
- Abnormal skin temperature
- Limited range of motion
- Skin sweating
- Difficulty moving your affected limb
- Abnormal swelling
(See NHS Choices ‘Complex Regional Pain Syndrome’)
Stages of CRPS/RSD
The stages of CRPS don’t tend to be used by the medical community because they are not considered reliable and not used very much any more. This is because not every CRPS patient will go through the stages, not everyone will go through the stages in sequence, some Complex Regional Pain Syndrome patients will stay in one of the stages and some patients don’t go through the stages at all. However we have included on this page to give you an idea of how the symptoms can change with time.
There are considered to be three (3) main stages of Complex Regional Pain Syndrome, and signs and symptoms can vary depending on the individual. There has also been a fourth (4th) stage discussed between health professionals and researchers. Many people who are concerned with CRPS, including doctors, consultants and patients, won’t agree there is a Stage Four, and the majority of patients diagnosed with CRPS will never reach the so-called Stage Four. However the fourth stage has been added as a matter of completeness.
STAGE ONE – DYSFUNCTION STAGE (0 – 3 months approx))
This usually lasts between 0 – 3 months. The professionals consider this phase to be ACUTE. The symptoms include extreme burning pain which lasts longer than would be considered normal from the injury, swelling of the limb or extremity, increased sensitivity when the limb / extremity is touched, redness, warmth, sometimes there is faster hair growth, faster nail growth and excessive sweating. There may also be some joint stiffness. The pain can be described as sharp stabbing or even extreme pins and needles.
There may be changes in circulation of the affected limb/s, mainly concerning the blood vessels in that they may be constricted or even obstructed. This is when it may cause skin changes. Patients often say they have colour changes going from red to blue or black, purple or white. The skin may look blotchy or spotty when the colour changes occur. The limb or extremity may have temperature changes either warmer or cooler than other limbs or extremities. This will continue to vary. In this stage CRPS patients may hear the term ‘Warm/Hot CRPS,’ the reason for this is that in this acute phase your CRPS affected limb will tend to feel warm or hot compared to your other non-affected limb. As the CRPS progresses this ‘Hot/Warm’ phase will give way to the chronic phase and your CRPS affected limb will become ‘Cold CRPS.’
Please visit our page TYPES of CRPS to learn more about Warm/Hot and Cold CRPS.
STAGE TWO – DYSTROPHY (3 – 6 months approx)
This stage may last between 3 – 6 months. It is known as the DYSTROPHIC stage because of the muscle weakness due to the lack of use of the limb / extremity. The burning pain becomes much worse and usually has spread from the initial area, the hypersensitivity will become even more sensitive to any form of touch, the muscles and / or limb will become stiffer, there is persistent swelling or Oedema. Unfortunately there comes the ‘Catch-22’, in that you will avoid moving the limb / extremity to get away from the pain but then by not moving you will be prone to stiff muscles and joints and also the limb will be so swollen that you won’t be able to move it.
There may be thinning, wrinkling or wasting of the skin, the skin may also become dry or withered, the skin may become blue-ish in colour because of the lack of circulation or poor oxygen in the blood (doctors call this CYANOSIS.) The speed of nail and hair growth will slow down. You may also see that your nails near the concerned limb or extremity tend to be brittle so they will break or crack a lot more easily. Excessive sweating may also increase during this stage. Skin texture may also change and the temperature will carry on going between hot and cold, however it will tend to become cooler. If your doctor or specialist sends you for radiographs or x-rays it may show there is bone mass reduction (Osteopenia.)
STAGE THREE – ATROPHY (after 6 months or after 1 year)
Usually this occurs after 6 months but you are more likely to be in this stage after 1 year. This is the ATROPHIC stage. Skin around the affected area tends to be paler, stretched, shiny, cool to the touch and dry. Due to the skin becoming stretched through the swelling ulcers and cracks in the skin may become apparent and may become infected. Nails will become rigid. Hair becomes brittle. There may be spreading of the condition to other parts of the body. Limbs / extremities or muscles will have become even stiffer due to the swelling and lack of use.
Severe bone mass reduction will usually be seen and if the CRPS is in the hands or arms the fingers will become thin and long. Osteoporosis can sometimes be seen on x-rays and radiographs and loss of minerals in the bone. Some people with CRPS may say that their affected tendons and muscles have become permanently shortened (also known as contracture.) The temperature of the affected area will now tend to be cooler than when it was in the earlier stages. By this stage there may be other muscular problems which can include tremors, spasms, severe jerking and possibly Dystonia, which is a muscle spasm that will last which causes distorted positions of the body or twisting movements.
Complex Regional Pain Syndrome symptoms for STAGE FOUR
The Final Stage – STAGE FOUR – is that stage that some professionals don’t believe it exists and therefore it is not mentioned on most websites concerning CRPS. However is mentioned here, as we believe everyone needs to be informed of as much information as practicably possible. This is the stage that the Founder of Burning Nights CRPS Support reached for her right leg during her journey of CRPS. The symptoms for her left leg went through the stages faster than her other leg did which resulted in a 2nd above knee amputation. She is certainly not the only example of amputation and many more CRPS patients reach the Stage 4 of CRPS and need amputation of their limbs. However it must be pointed out that most people will never reach the amputation point.
This is seen by health professionals who acknowledge this stage, as the most advanced of CRPS. Most treatments for the condition will not make any difference. Damage to the affected limb may become irreparable due to ulcers, skin splitting or cracking, infections, onset of cellulitis or even gangrene. The severe constant burning pain is still ever present. Other symptoms present in the other 3 stages are present within this stage. Osteoporosis may also be more noticeable within this stage.
If gangrene sets in or the person gets septicaemia then doctors and specialist may require the limb to be amputated so that any infection like gangrene will stop spreading. THERE ARE NOT MANY AMPUTATIONS CAUSED BY CRPS. However they do happen, the Burning Nights founder is just 1 person who can confirm that she was one of those statistics. She had such severe ulcers from her knee to her toes (as seen Our Founder) that it was suggested she have her leg above the knee amputated. There are no studies showing that amputation is a cure and sometimes it can increase the rate of CRPS spreading. There may also be some internal organs that may be affected by the CRPS, which has been covered below.Why not check out our amputation for CRPS blog – ‘Is Amputation Really A Cure For CRPS?’
Visit the article by Hooshmand, H. & Phillips, E.‘ Spread of Complex Regional Pain Syndrome (CRPS),’ where they goes through each of the 4 stages of CRPS.
Below is an image showing the different symptoms that can affect CRPS patients:
What Are The Main Symptoms of CRPS?
- Intense burning, throbbing, gnawing or aggravating pain
- Increased sensitivity / Hypersensitivity
- Pain out of proportion to the original injury
- Pain lasting longer than the healing time for the injury
- Hair growth
- Hair loss
- Brittle hair
- Nail growth
- Nail loss
- Rigid nails
- Brittle nails
- Excessive sweating
- Allodynia / Hyperalgesia
- Thinning of the skin
- Wrinkling of the skin
- Wasting of the skin
- Dry or withered skin / Skin texture changes
- Skin changes
- Colour changes to the skin
- Blotchy or spotty skin
- Temperature changes – both hot and cool
- Stretched, shiny skin
- Cracks in the skin
- Other skin infections e.g. Pseudomonas
MUSCLES & JOINTS
- Muscle weakness
- Joint stiffness
- Muscle stiffness
- Contracture – permanent shortening of tendons and muscles
- Loss of movement
- Severe jerking
- Spreading of the condition from initial area – See below for information regarding spreading of CRPS
- Internal Organ spread
- Lack of circulation / poor circulation
- Bone mass reduction
- After some time – Severe bone mass reduction
FACE / EYES / EARS / TEETH / HEAD
- Dental problems including gum issues, brittle/crumbly teeth
- Eye problems
- Migraines or headaches
- Nose bleeds – Especially females, aged 20-29 & take Lyrica/Pregablin (eHealthMe study 16 January 2016)
See Thapa, D. & Ahuja, V. (2012) regarding CRPS in the eyes
- Internal organ spreading – (Hooshmand & Phillips article below)
- Urological problems – See Schwartzman, R. (2012)
- Anxiety & stress
- Sleeping problems / Insomnia
- Irreparable damage to the limb
Spreading of CRPS
We often get asked “can CRPS spread?” The simple answer to this is that YES – CRPS can spread. Data suggest that CRPS can spread outside of the originally affected limb although this is not a universal phenomenon. (Veldmen, P.H. & Goris, R.J 1996) However this doesn’t mean that CRPS will spread in every CRPS patient. For some doctors and researchers, the ‘spreading’ of symptoms which are in the same area of the body or limb, is considered to be more likely to e related to myofascial pain syndrome.
It has widely been accepted by researchers that Complex Regional Pain Syndrome (CRPS) can spread from its initial site to other areas of the body. Although the cause of spreading CRPS symptoms is not clear, researchers have speculated that CRPS may spread by spinally or cortically mediated mechanisms. (van Rijn.M.A. 2011) Many CRPS patients are extremely fearful of the possibility of the CRPS spreading. From various research studies undertaken around the world, researchers such as Forss, N. et al (2005) say that:
“The spread of chronic pain from its initial site of presentation is common…”
According to van Rijn, M.A. et al (2011):
“One hundred and eighty-five CRPS patients were retrospectively evaluated. Cox’s proportional hazards model was used to evaluate factors that influenced spread of CRPS symptoms. Eighty-nine patients exhibited CRPS in multiple limbs. In 72 patients spread from a first to a second limb occurred showing a contralateral pattern in 49%, ipsilateral pattern in 30% and diagonal pattern in 14%.”
In this van Rijn, M.A. et al (2011) retrospective study in 185 patients with CRPS (from a clinic specializing in treating CRPS associated with movement disorders) found that 48% reported spreading to another limb.
Therefore the results on the same research study from van Rijn, M.A. et al (2011) show that:
“….CRPS usually affects one limb but in some cases it spreads to another limb, most often in a contralateral (53%) or ipsilateral (32%) pattern and usually without secondary trauma. A diagonal pattern of spread was nearly always triggered by a new trauma. Spontaneous spread and spread after a separate trauma followed different patterns.”
In the same van Rijn, M.A. et al (2011) research article the authors identified that:
“The median interval between the occurrence in the first and second limb was 21 months for contralateral spread, 19 months for ipsilateral spread and 10 months for diagonal spread. The difference in intervals between contralateral and ipsilateral pattern was not significant.”
What this means is that the average length of time between the different CRPS spreads are between 10 months – 21 months depending on which type of CRPS spread it is. The van Rijn, M.A. et al (2011) is the largest systematic study of CRPS spreading (n=185) that suggests that contralateral spread is most common (mirror image spread), followed by ipsilateral spread (for example, hand to foot), or diagonal spread. All four limbs were affected in more than 29% of cases in this study. The two most common spreading patterns (ipsilateral and contralateral) developed on average 19 months or more after the initial onset of symptoms. (Bruehl, S. 2015)
In a very small number of cases, which is thought to be 8% or less, complex regional pain syndrome has spread to the entire body. However it is more common for CRPS to spread to an entire limb rather than the entire body or a contiguous spread.
What Do These Spreading Terms Mean?
As you have seen above there are a number of different ways that CRPS can spread. These are:
Contralateral – This is also known as Mirror Image Spread. This is where the CRPS symptoms occur or appear on the opposite side of the body in the same or closest to the same location on the original CRPS area. For example if the CRPS originally is in the left lower arm, the contralateral spread may occur in the right lower arm. Contralateral spreading of CRPS is thought to possibly arise via altered spinal processing of incoming sensory information in the spinal cord and brainstem. (Brence, J. 2011)
Diagonal – This is where the CRPS symptoms spread or occur on the diagonally opposite part of the body to the original CRPS site. For example if the CRPS is originally in the left arm, the CRPS symptoms may spread or occur in the right leg.
Ipsilateral – This is where the CRPS symptoms occur or spread on the same side of the body as the original CRPS area. For example if the CRPS is in the left leg, the ipsilateral spread may occur in the left arm.
You may also hear about two (2) other forms of spreading which are:
Contiguous – This is where the original CRPS site will gradually enlarge and grow bigger. It will most commonly move up the limb or area of the body.
Independent – This is where new CRPS symptoms appear in a different area of the body away from the original CRPS area and where they are not attached or near the original CRPS site.
Spreading of CRPS to the Internal Organs
According to Hooshmand, H. and Phillips, E. they say that:
“CRPS invariably involves the internal organs. Usually the skin surface is cold at the expense of increased circulation to the internal organs. This increased circulation can cause osteoporosis, fractures of bone, abdominal cramps and diarrhea, disturbance of absorption of foods with resultant weight loss, water retention with aggravation of premenstrual headaches and depression, persistent nausea and vomiting, as well as severe vascular headaches mistaken for “cluster headache”.
Hooshmand, H. and Phillips, E. also state that there are other complications involving the internal organs include:
Congestion and inflammation of the ovaries, uterus or small bowel
Attacks of fluctuating blood pressure
Constriction of the blood vessels to the kidney resulting in periodic bleeding in the urine
Attacks of swelling of the internal organs
Attacks of sharp central pain (stabbing severe pain in the chest or abdomen)
Changes in voice (suddenly developing a temporary “chipmunk” type of voice change)
Hooshmand & Phillips also say that Sympathetic Nerve Blocks can also cause complications for internal organs including:
accidental trauma to the kidney with resultant hematuria (blood in urine) and aggravation of hypertension
In another research article Schwartzman, R.J. (2012) he suggests that various internal organs can be affected by Complex Regional Pain Syndrome including the lungs. Out of a study of 270 CRPS sufferers, 15.5% complained of shortness of breath and that they could not take a deep breath, Schwartzmann, R.J. states that:
“Dystonia of the chest wall muscles is common in severe long-standing patients…..Dystonia is a major component of the movement disorder of CRPS.”
In a research study Irwin & Schwartzman ( 2011) they found that a CRPS sufferer had:
“…developed painful dystonia of chest wall musculature.”
In response to their finding, this patient was given intrathecal baclofen as a treatment for the dystonia in the chest wall and found that from this treatment:
“…the patient had symptomatic relief and improvement of dystonia”
CRPS signs and symptoms as well as patient history will be used to diagnose the condition using the Budapest Criteria. If you have any of these signs and symptoms and you haven’t been diagnosed with CRPS please visit our CRPS diagnosis and prognosis page for more information on how CRPS is diagnosed. Please don’t be tempted to diagnose yourself, please contact your GP or local doctor and tell him your signs and symptoms that you have having and if necessary ask for a referral to your local Pain Clinic.
If your CRPS signs and symptoms are starting to change or you have any new CRPS symptoms please seek an appointment with your doctor or pain clinic and let them know of your changes. You can also keep a pain diary to help you keep track of your signs and symptoms and any changes that may be occurring.
Complex Regional Pain Syndrome (CRPS) has a large number of signs and symptoms as you can see from the information on this page. Whether you look at the stages of CRPS or the signs and symptoms of CRPS you are able to see the effects on a CRPS sufferer. Every person living with Complex Regional Pain Syndrome (CRPS) won’t have the same signs and symptoms as other CRPS patients. Even though CRPS/RSD can affect anyone, each patient is an individual where the symptoms, signs and stages are concerned.
- Belt Law Firm 16 December 2011. ‘RSD/CRPS can involve Internal Organs,’ RSD Info Center. Available from: <http://www.rsdinfocenter.com/blog/2011/12/rsdcrsp-can-involve-internal-organs/>
- Brence, J. (2011) ‘Why does complex regional pain syndrome spread?’ Forward Thinking PT. October 2011.
- Bruehl, S. (2015) “Complex regional pain syndrome,” BMJ: British Medical Journal (Online), 351.
- eHealthMe (2016) ‘Nosebleeds in CRPS,’ eHealthMe website. 16 January 2016. Available from: <http://www.ehealthme.com/print/cs9085121>
- Forss, N. et al. (2005) ‘Mirror like Spread of Chronic Pain,’ NCBI NIH & Neurology. 1 September 2005. Vol 65 (5). pp 748-750. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/15872154> Epub 2005 May 4.
- Harden, R.N. (2001) ‘Complex Regional Pain Syndrome,’ Br J Anaesth. 2001. Vol 87 Issue 1. pp 99-106. Available from: <http://bja.oxfordjournals.org/content/87/1/99.full>
- Hooshmand, H. & Phillips, E.. ‘ Spread of Complex Regional Pain Syndrome (CRPS),’ RSD Treatment Center. Available from: <http://rsdtreatmentcenter.com/Spread_of_CRPS.pdf>
- Irwin, D.J. & Schwartzman, R.J. (2011) ‘Complex Regional Pain Syndrome with associated chest wall dystonia: a case report,’ J Brachial Plex Peripher Nerve Inj. 2011, Vol 6(6) Available from: <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3189858/>
- Schwartzman, R.J. (2012) ‘Systemic Complications of Complex Regional Pain Syndrome,‘ Neuroscience & Medicine. 2012. Vol 3. pp 225-242. Available from: <file:///C:/Users/User/Downloads/NM20120300002_41190989.pdf> doi: 10.4236/nm.2012.33027
- Sebastin, S.J. (2011) ‘Complex Regional Pain Syndrome,’ Indian J Plast Surg. 2011, May-August. Vol 44(2). pp 298-307. Available from: <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193642/> doi: 10.4103/0970-0358.85351
- Thapa, D. & Ahuja, V. (2012) ‘Complex regional pain syndrome – I following eye injury,’ Indian Journal of Anaesthesia. 2012, Nov-Dec. Vol 56(6) pp 596-597. Available FULL TEXT from: <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3546259/> doi: 10.4103/0019-5049.104596
- van Rijn, M.A. (2011) ‘Spreading of Complex Regional Pain Syndrome: not a random process,’ NCBI NIH & J Neural Transm. September 2011. Vol 1118(9). pp 1301-1309. Available from: <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162139/> doi: 10.1007/s00702-011-0601-1
- Veldman PH, Goris RJ. (1996) “Multiple reflex sympathetic dystrophy. Which patients are at risk for developing a recurrence of reflex sympathetic dystrophy in the same or another limb,” Pain. 1996;64:463-6.
- NHS Choices website (2014) ‘Complex Regional Pain Syndrome – Symptoms,’ (2014) Available from: <http://www.nhs.uk/Conditions/Complex-Regional-Pain-Syndrome/Pages/Symptoms.aspx>
- RSDSA website (2015) ‘Telltale Signs and symptoms of CRPS/RSD,’ (2015) Available from: <http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/>
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Last Updated: 01/07/2018