Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes.
Parkinson’s & MS
What is Central Pain Syndrome?
Central Pain Syndrome is a neurological condition consisting of constant moderate to severe pain due to damage of the Central Nervous System. The Central Nervous System (CNS), consists of the brain, brainstem or spine. Damage to these areas can include stroke, surgery, injury, infection or virus directly related to the CNS.
Often described as burning pain, CPS can affect the whole body, half of the body, or specific parts depending on the cause. The pain is most like burning feet from diabetes (neuropathy), or from shingles, though it has also been described as freezing, stabbing, sharp, tearing, ripping, chewing, grabbing, slicing and many more awful descriptions.
In essence, the trauma to the CNS causes the microglial cells that sweep up inflammation to in turn travel into the Central Nervous System (up the spine and into the brain), and this results in the brain’s pain receptors receiving and sending inaccurate messages. So while technically long after the damage should have healed, the brain is still playing the pain on “loop”, much like that of phantom limb pain.
8-10% of those who suffer stroke will at some point after the stroke develop what is now called Central Post-Stroke Pain (CPSP) or Central Pain Syndrome (CPS). This is as many as 70,000+ new sufferers each year
Another 30,000+ new cases occur as a negative outcome of various spinal procedures, traumas or injuries each year
And then about 15,000+ experience CPS from MS, Parkinson's, and other “shocks” which somehow damage the CNS
Altogether currently 1.5 million to 3 million suffer from Central Pain Syndrome in the USA. Between 3 and 4 million more are suffering in other large countries.
Then, there are also those who have a peripheral trauma or injury that never seems to heal, even well after it should have within the 6 week to 6 month window. We consider this pain to now be called “centralized pain”, as we understand that the peripheral pain has become “centralized”, traveling to and getting trapped in the Central Nervous System.
While this is not the same as Central Pain Syndrome, we recognize it as chronic pain that can be treated in similar ways as Central Pain Syndrome. If you suspect that you have “Centralized Pain” instead of Central Pain Syndrome because of no clear damage to the CNS, we recommend looking at our Resources page for more information about “Centralized Pain”.
What causes Central Pain Syndrome?
We consider there to be four categories of causes for CPS:
CNS (brain, brainstem & spinal cord) injury
Parkinson’s & MS
CPS is most often caused by damage to the Central Nervous System (CNS); the brain, brain stem, and the spine. It is called syndrome because it is a group of symptoms that consistently occur together and arise after injury or illness. CPS generally begins shortly after CNS damage, but may appear gradually, as much as one year later.
About 90% of the 1.4 million with CPS share these causes.
However, both Parkinson’s Disease and MS (Multiple Sclerosis) along with unusual “other” causes are about 10% of those with CPS.
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What are the symptoms of Central Pain Syndrome?
CPS is a chronic neuropathic pain syndrome within the CNS consisting of moderate to severe constant pain. The pain has been described many ways including burning, severe itching, stabbing, sharp, dull ache, or deep set pain, and some experience only one type of pain while others experience "all of the above". Since each injury that leads to CPS is unique in its placement, symptoms may also be unique in location, combination and varying degree of pain.
Stroke related CPS pain may start in one extremity, feet and hands being most common, and then spread over entire body or the stroke affected side. It can also move to other areas of the body depending on weather or other triggers of pain. Stroke related CPS is most often a lesion (scar from the stroke) in the brain or brain stem.
In brain and spinal injury cases, the area near the damage begins hurting and may spread to varying degrees. Those with brain or spinal injuries are finding that their pain worsens depending on the injuries or viruses they contract after their initial injury that caused their CPS.
In most every case, the pain seems to be made worse by a few key factors: touch, movement, emotions, weather or temperature changes (extreme, often cold, but sometimes extreme heat) and stress.
Depression and ideas of suicide are unfortunately very common with this syndrome.
How is CPS diagnosed?
There is no test that proves Central Pain Syndrome. A comprehensive history of the patient and their loss of wellness, especially of anything which affects the brain, brainstem and spine often points to CPS. When constant burning or other significant pain is found, particularly following CNS injury or trauma, CPS should be investigated.
MRI and other diagnostic images can be taken. Most stroke related damage causing CPS is visible. Lesions near the thalamus or in the "loops" that connect to other parts of the brain are most common in brain injury. Spinal injury is often visible on MRI as cysts, partial cuts, or improper healing. For MS, that would be diagnosed first. Note that an MRI isn't always a comprehensive study of CPS, especially for those who had a non-traumatic brain injury (such as a concussion) and their MRI seems to be normal.
Generally, it is combination of a thorough patient history, a general practitioner along their recommendation of another doctor (neurologist, pain specialist, integrative medicine or another type of MD) who diagnose Central Pain Syndrome.
How is CPS treated?
Finding the right team of caregivers is crucial to relief from CPS. A neurologist is usually the professional who is most likely aware of this syndrome, although many do not know much about it yet. Finding this team or even a doctor educated in CPS is often the greatest difficulty, aside from the pain, that most CPS patients face. Some doctors refuse treatment and believe that it is "all in our heads".
That we know of at this point there is no one cure for this excruciating pain.
There are, however, many ways to reduce the pain, treat and for some even reverse the symptoms with the right blend of medication, a holistic approach, and other treatment methods.
The medical protocol for CPS generally begins with over-the-counter pain medication, like Ibuprofen. If that doesn't work, a protocol that considers the following is suggested:
Tricyclic antidepressants remain the first line of defense. Amitriptyline and Nortiyptylene tend to be the first choice
Also anti-convulsant seems to have an effect, with Gabapentin or Lyrica taken by approximately 60% of CPS patients. Of course, many times the side effects outweigh the benefits of these drugs
For severe pain with no other solution, opioids have helped a significant portion of CPS sufferers. This is now controversial for many doctors
Lidocaine in patch or lotion formula help some, applied directly
Capsaicin which is a medicine derived from the active chemical in pepper is also sometimes effective
Many new treatments are showing promise for a portion of sufferers:
Cannabis as a pain medication is helping a significant portion
Ketamine infusions have helped as many as 50%, figure is yet purely from online stories. Clinical research is needed in this and many other areas
Frequency Specific Microcurrent or FSM is a non-invasive treatment method that uses low level electrical current that restore ATP to the cells at a rate of 500%. Using specific frequencies such as Central Pain Alt (custom made) has been known to help alleviate much CPS suffering
Physical therapy of various methods such as acupuncture or water exercise are being tried. Also compression clothing articles help some
Mirror therapy is also worth noting. This is a therapy method where the patient watches other people do things that would be painful for the patient, but is not painful for others. This allows the patient the opportunity to rewire their perception of pain
Hormone therapy is also reversing the symptoms of CPS for many. A detailed hormone panel is taken and any depleted hormones must be replaced first before introducing others such as oxytocin and hCG to both restore the CNS and relieve pain
A person with an effective treatment protocol combines medication, mental care, multiple therapies and family and friends for support. Many benefit from disability arrangements, allowing them to focus on improving their condition while dealing with the pain.
What does living with CPS involve?
For most, suffering Central Pain Syndrome is the most difficult challenge they and their families will face. Many struggle for years in terrible excruciating pain without a clear understanding of the cause of the chronic pain. This leads to anger, frustration and often depression. This includes budget challenge and loss of ability to work or only being able to work small chunks at a time. All must learn their own unique formula of life.
At the Central Pain Syndrome Foundation we suggest patients work specifically to improve these areas:
- Reducing pain
- Improving physical functioning
- Reducing psychological distress
- Improving overall quality of life
When should I call my Healthcare Provider?
If you have had treatments or injury that directly or indirectly touch on the Central Nervous System, the brain, brainstem, or spinal area, and after 6 weeks and up to 2-3 years are still in significant pain, tell your primary caregiver. If you had a stroke, and burning begins, talk to your doctor and neurologist. If you live in a rural area, or suspect your doctor is not aware of CPS, we suggest printing the description of Central Pain Syndrome from the government agency, the National Institutes of Health (NIH). That way they see a respected definition of the very symptoms you complain of.
- CPS involves injury of the Central Nervous System (CNS), the brain, brainstem, and spinal cord
- 8-10% of stroke victims, and spinal surgery patients end up with CPS
- Central Pain Syndrome is a chronic neurological condition, consisting of symptoms including moderate to severe pain in some parts, 1/2 or the entire body
- CPS does not improve on its own. Pain feelings may change along with weather, temperature changes (especially cold), movement, touch and emotional condition of the patient
- Treatment routes may help to reduce the pain
- A majority of those with CPS are no longer able to work, at least not to the degree that they once could
* Join the "Facebook CPS Tribe" at www.facebook.com/groups/centralpainsyndrome
Remember, you are never alone with your CPS. Make an appointment with your primary doctor or neurologist. Bring in a printed information page on CPS and ask for their consideration.