Your first step will be to get thoroughly checked out (in person is best for diagnosis) by your Doctor/s, and other qualified health professionals including physiotherapy, occupational therapy, psychology, osteopathy or chiropractic with gentle methods such as craniosacral. Wherever possible it is best to seek medical professionals with extra training in Complex Regional Pain Syndrome (CRPS).
Sadly, training at universities in CRPS is rare, which means you are often reliant on the individual health professional to seek out additional training resources/read articles/books/attend courses and conferences on the area once graduated.
You may also encounter health professionals who have looked into the subject and decided there is no such thing as CRPS for a variety of reasons. Ironically the opinions of these professionals may well be worth listening to as they may strive harder to find a differential diagnosis for you and offer more treatment options. It is important that a diagnosis of CRPS is never given lightly and without a thorough check out.
If you encounter a health professional who appears to be saying that your symptoms aren’t real, or the intensity of pain you are reporting can’t be right – you should find another health professional with an up-to-date understanding of pain.
I am a qualified occupational therapist and as such cannot make any official diagnoses. In our medical system, only doctors have the level of training to make diagnoses. Many differently trained health professionals can do certain assessments and share findings with your doctor/s to assist them in making the most accurate diagnosis.
There are some reliable and valid pain and functional questionnaires that we could do together and (with prior consent) share results with new or existing health professionals involved in your care. This may assist with gaining a more definitive understanding of why you are getting these signs and symptoms, and open up new treatment possibilities.
If it is a new and suspected only diagnosis, it is a very good idea to start some of these therapies with the aim of “nipping it in the bud” so to speak. I am more than happy to work with you, if CRPS is only suspected and a definitive diagnosis is still underway.
Your doctor/s will be working to rule out other diagnoses that require specific medical attention.
Possible differential diagnoses with some similar symptoms to CRPS include but are not limited to:
- Infection (bone, soft tissue, joint or skin)
- Orthopedic mal-fixation or problems with implanted metal work (screws working loose etc)
- Functional Neurological Disorder
- Joint instability
- Unhealed bone or soft tissue injury (including stress fracture, instability or ligament damage)
- Compartment syndrome
- Neural injury (peripheral nerve damage, including compression or entrapment neuropathy, central nervous system or spinal lesions)
- Thoracic outlet syndrome (due to nerve or vascular compression)
- Arterial insufficiency (usually after preceding trauma, atherosclerosis in the elderly or thrombangiitis obliterans (Burger’s disease))
- Raynaud’s disease
- Lymphatic or venous obstruction
- Gardner-Diamond syndrome (GDS)
- Brachial neuritis or plexitis (Parsonage-Turner syndrome or neuralgic amyotrophy)
- Erythromelalgia (may include all limbs)
- Diabetic neuropathy
- Self Harm
Sometimes it’s a complicated picture with other underlying conditions either contributing to or co-existing with CRPS.
A CRPS diagnoses is usually made by a doctor based on a collection of clinical signs and symptoms after other possibilities have been ruled out.
The Budapest Diagnostic Criteria is the most widely known diagnostic tool for CRPS and states that for a person to receive this diagnosis they must have continuing pain (any unpleasant sensation) which is disproportionate to any inciting event.
The person must also have at least one sign (visible to the diagnosing professional) in two or more of the categories below and at least one symptom (reported by the patient) in three or more of the categories below.
- Allodynia (to light touch and/or temperature sensation and/or deep somatic pressure and/or joint movement). This is pain due to a stimulus which does not normally provoke pain.
- Hyperalgesia (to pin prick). Normally painful stimuli are more painful than usual.
- Hyperaesthesia. Abnormal increase in sensitivity to stimuli of the senses. For example if you touch your hair with both hands it might feel rougher with the CRPS hand compared to the other side.
- Temperature asymmetry >1ºC (tested with infra-red thermometer where available)
- Skin colour asymmetry
- Oedema (swelling)
- Sweating changes and/or sweating asymmetry
- Stiffness (Decreased range of motion)
- Motor dysfunction (weakness, tremor, dystonia)
- Trophic changes (hair/nails/skin)
It is much easier to diagnose CRPS in it’s earlier phase, later phases can be lacking a lot of the above visible signs but the pain is remaining. If there has been evidence at some time of oedema, changes skin, blood flow or abnormal sudomotor activity you might still have CRPS although there is no official diagnostic tool for diagnosing this in later stages.
Three-Phase Bone Scan, Xray or other imaging of bones in the affected limb (and contralateral side to compare) can assist in diagnosis as often there is patchy osteopaenia or osteoporosis (low bone density) in the affected limb.
Although not on the official Budapest Diagnostic Criteria, people with CRPS have also been known to report:
- Strong dislike of the limb/digit
- Referred sensations such as feeling touch on the left-hand side of the face when the left hand is stroked (CRPS location is left hand in this scenario)
- The limb/digit feels foreign
- The limb/digit feels smaller or larger (even accounting for possible swelling) than normal or the other side
- Palmar fasciitis – small lumps on joint lines, tightening/chords of tissue in the palm or front of fingers
- Pencilling of finger tips
- Dr Katinka van der Merwe says the “cranial nerves in almost every CRPS patient show abnormalities” – please see her book “Putting Out The Fire – New Hope for RSD/CRPS” or ask someone like an osteopath to assess your cranial nerve function. There is a lot that can be done to assist these nerves to function better (see my blog article on vagus nerve – cranial nerve 10)
- As Dr van der Merwe mentions there may be many other puzzling symptoms that you share in common with other people with CRPS (and people without CRPS), and this could be additional valuable information to help you and your health professionals understand and treat you. Pg 24
The reason I ask so many questions in my pre-appointment questionnaire is to try and determine which cranial nerves might not currently be functioning optimally for you.
If you have any questions about assessing or treating CRPS, you are welcome to a free consult by phone (up to 15 minutes).