Central Sensitivity Syndrome is a unifying concept that was a major contribution to the field of chronic pain. However, it still remains just that, a concept. Just like Fibromyalgia for many years up until recently, Centralized Pain isn’t a diagnosis, at least not where the International Classification of Diseases or the Social Security Administration is concerned. In fact, Fibromyalgia up until recently was formally coded as “myalgia and myositis, unspecified.”

In regard to Social Security Disability, a ruling was held in 2012 in order to clarify the process of determining if the severity of a particular case of Fibromyalgia was indeed a “medically determinable impairment,” making it easier for many to start the process of filing for disability benefits easier and successfully with or without a court ruling. Today, getting diagnosed with multiple Central Sensitivity Syndromes is ideal, but they will likely be all pulled together and listed as Fibromyalgia with other various diagnoses you may have.

However, the establishment of a “medically determinable impairment” does not entirely satisfy the evidence requirements to become established as totally and permanently disabled (unable to work).

Additional evidence required includes:

• Proper diagnosis by a physician (Rheumatologist or Chronic Pain Specialist)
• All relevant medical records
• A Residual Functional Capacity form to be filled out by your physician
• Statements from third-parties such as family, friends, co-workers, etc.

But let me throw in my two cents here based on my experience with obtaining this evidence. After years and years of getting the runaround and misdiagnosis after misdiagnosis, it was the following that actually did the trick – for me anyways.

YOUR Medical Team

Your Doctor

Knows, understands, and actually deals with central sensitization/central sensitivity (not just fibromyalgia). “Fibro” doctors often boast their knowledge to pick up patients that other physicians cannot handle and that they know will be coming back for years filling their pockets. They are often skeptical because they do not understand the condition except the basics. They are not engaged in research in that area to any extent, and may have no knowledge of central sensitization, largely because they stopped reading chronic pain medical journals years ago. If they boast fibromyalgia care AND central sensitization, read online reviews to help you determine if they are right for you. A knowledgeable doctor will have extensive experience to work with you, and that’s exactly what you need.

Attentive, asks a lot of questions, runs meaningful tests, is clear and concise, and doesn’t push meds. If they end the first session by pushing prescription medications, I do not recommend this type of physician. The first thing my doctor did, the one who properly diagnosed me and helped me get on disability, was take me off all of my medications to find my base level, and work from there. If you aren’t on any meds, then it’s only logical for your doctor to prescribe, but they should also be prescribing various therapies as well.

Is head of or part of a leading Chronic Pain Rehabilitation PROGRAM in a highly reputable Pain Clinic that deals with central sensitization. Programs range from several months for out-patient care, and about 3 weeks for inpatient care. I recommend inpatient care programs if you are planning on filing for disability. This is because they NEED to see how you function, or rather how you don’t function, morning, noon, and night. The programs have highly knowledgeable occupational therapists, physical therapists, and pain psychologists on staff. You will be exposed to a very wide range of treatments for central sensitization. All of this is critical to filing for disability.

Your Pain Psychologist

A pain psychologist’s assessment of you will help remove any doubt that you condition is purely psychiatric – all in your head. It’s impossible for a 1-hour medical examiner (mandatory if you do not have evidence from a mental health professional) to see the full scope of your condition. And since there are psychological aspects to central sensitization, like depression and anxiety, they tend to muddy the waters unless the evidence is coming from a pain psychologist. A pain psychologist is a psychologist who specializes in the study of how people psychologically deal with pain.

A run-of-the-mill psychologist or psychiatrist will not be able to make heads or tails of your condition, will probably make it worse with medications (psychiatrists) unless they have additional training in dealing with people who have DEBILITATING chronic pain. Even those who deal with minor chronic pain may not be able to make sense of your condition. A pain clinic brings all of these necessary people together onto your case. This “group think” is very important.

Your Occupational & Physical  Therapist

Occupational and physical therapists will be able to measure your function in a variety of tasks, and try to find ways to make things easier for you. If all else fails, this evidence will help you significantly. You may still need to meet with Disability Voc Rehab to make sure there is no job on this planet you are capable of doing to make enough month to stay off disability.

This includes jobs that you could do if you went back to school. If you can do a job with the proper training that is the direction they will send you. Physical therapy evidence is very important, as it stress tests you, which is when people with central sensitization tend to crumble most. This way, disability examiners can see just how quickly you deteriorate when forced to perform.

Pain Clinics

Pain clinics expose you to a wide range of currently acceptable treatments. Disability examiners NEED to know that you have tried EVERYTHING, and have evidence that you tried everything, and nothing really worked. There may be some improvement, but nothing that lessens your symptoms enough to be considered not disabled.

Avoid bouncing around to different doctors and specialists trying different treatments, many of which may not even be relevant because they aren’t sure what they are doing, because these multitude of records may be hard to get, understand in context, and the examiner has to question the judgment of each individual physician, instead of one reputable and consistent one.

It’s hard to pull all that evidence together to send to disability examiners. It looks better if you have a history of seeing other doctors, yes, that’s establishing how long this has be going on (also very important), but you need the full range of treatments pulled together in a way that makes it easier for disability examiners to navigate. A chronic pain clinic will do this for you.

Your Insurance

Depending on your insurance, they may cover inpatient care locally, in-state, or nationally. If they only cover out-patient care, you will obviously need to attend a program locally. For those who have the option for national coverage of an inpatient chronic pain rehabilitation program, I highly recommend the Mayo Clinic’s 3-week program in Minnesota. It’s ranked the best in the nation last time I checked. The leading program in the nation when I was looking years ago was at Abbott Northwestern Hospital in Minnesota (closed due to lack of funding), which is where I attended.

The more reputable the clinic, the more weight the evidence will have – I received disability benefits without a court appearance or any fuss.

If a program outside of your state, or immediate area is not covered by your insurance, I recommend contacting that Mayo Clinic and asking for a recommendation in your state or immediate area.

Best of luck! 🙂