How to Advocate for Yourself in the Healthcare System When You Have Chronic Pain

Navigating the healthcare system as a chronic pain patient can feel overwhelming, but being proactive and informed can help you receive the best possible care. Advocating for yourself ensures that your concerns are heard and that you play an active role in managing your pain. Here’s how you can take charge of your health journey.

1. Keep a Pain Journal

Tracking your pain levels, triggers, and symptoms can provide valuable insights. Note when the pain worsens, what alleviates it, and how it affects your daily life. Bringing this record to your appointments helps your doctor see patterns and develop a more effective treatment plan.

2. Communicate Clearly and Confidently

Be specific about your pain. Instead of saying, “I’m in pain all the time,” describe it in detail: “I experience sharp pain in my lower back that worsens after sitting for long periods.” Using descriptive language and pain scales (1-10) can help doctors better understand your experience.

3. Know Your Treatment Options

Familiarize yourself with available treatments, from physical therapy and injections to medications and alternative therapies. Ask about the benefits, risks, and expected outcomes of each option. Being proactive can help you find the most effective plan for your needs.

4. Bring a Support Person

A friend or family member can provide emotional support and help reinforce your concerns. They can also take notes and remind you of important details discussed during the appointment.

5. Ask Questions and Seek Second Opinions

If you have questions about a diagnosis or treatment plan, don’t hesitate to ask for clarification or seek a second opinion. A fresh perspective may provide additional insights or new treatment options.

7. Understand Your Insurance and Rights

Knowing what your insurance covers can prevent unexpected costs. Additionally, familiarize yourself with patient rights, including access to medical records and the ability to switch doctors if needed.

8. Build a Trusting Relationship with Your Doctor

Finding a healthcare provider who understands chronic pain and listens to your concerns is essential. Specialists like Dr. Norman Marcus focus on soft tissue issues and offer tailored treatment plans to address pain at its source.

9. Join Support Groups and Online Communities

Connecting with others who share similar experiences can provide emotional support and valuable insights. Patient communities often discuss treatments, coping strategies, and recommendations for compassionate healthcare providers.

10. Stay Persistent and Positive

Advocating for yourself is an important part of your healthcare journey. Stay open to different treatment approaches, communicate your needs clearly, and remain hopeful. Your pain management plan should be a collaborative effort between you and your healthcare team.

By taking an active role in your healthcare, you can increase the likelihood of finding relief and improving your quality of life. If you’re looking for expert care, consider reaching out to a pain specialist who prioritizes patient-centered treatment.

You should know and understand your insurance policy. What is your insurance company? What is your in-network policy – deductible, copayment/coinsurance, out of pocket maximum? What is your out of network policy – deductible, copayment/coinsurance, out of network maximum? Are your doctors in network or out of network?

If you’re seeing an out of network doctor, you may have to pay a bit more attention to your policy. If you’re getting a procedure, you may have limitations in your policy (like you can only get a certain number of procedures per year), or require prior authorization. In order to find that out, you will need your doctor’s NPI (National Provider Identification Number) and the Procedural Codes (also known as CPT codes). You then have to call Member Services (usually you will find the number on the back of your insurance card) and ask them if there are any limitations or authorizations required for said CPT code.

If you see an out of network provider and they don’t tell you that they are out of network, you are protected by the No Surprises Act. This means you would only be responsible for in-network costs. However, please note that every state has its own protections so please check with your state’s specifics! This scenario happens mostly in two areas – in the emergency department/hospital, or with anesthesia from a surgery. Let’s say you’re in the emergency department and you need a specialist to consult on your care, and the specialist is out of network. Unless you were specifically advised that they are out of network, you would not be responsible for additional payment (outside of your normal in-network costs) for seeing this specialist. Also, because you saw this specialist as part of your emergency care, your insurance company should cover the cost of this specialist.

Knowing and understanding your insurance policy is important!!

Claims are generally automatically submitted by doctors and hospitals within your network. However, if you’re seeing an out of network provider, depending on their office policy, they may not be able or willing to submit on your behalf. Therefore, you would have to submit the claim directly with your insurance company for reimbursement. Every insurance company can have their own form, but you can also use a universal claim form, the CMS 1500 (02/12 is the most updated version). You can access the form here:

https://www.cdc.gov/wtc/pdfs/policies/cms-1500-P.pdf

The address to where you can submit the claim will be on the back of your insurance card.

For Medicare patients looking to submit for outpatient services, you would use this form:

https://www.cms.gov/medicare/cms-forms/cms-forms/downloads/cms1490s-english.pdf

I would highly recommend attaching a copy of your receipt so you can show that payment was made. However, you will need specific information from your provider so you can submit this claim form – the provider’s name, address, NPI (National Provider Identification) Number, TIN (Tax Identification Number), ICD-10 (diagnostic) codes, and all procedural codes (also known as CPT codes).

I am often asked what insurance policy they should look to purchase when coming to our office. Because our office doesn’t participate with any insurance policies, patients are often looking for the best coverage and where they will receive the highest reimbursement.

My answer used to be well, do you work for New York State? The NYSHIP plan used to have the best “bang for your buck”. Their out of network deductible was $500 and they covered 80% of our fees. However, over the years, the deductible has gone up to $1250 and I don’t even know if they cover the same amount anymore. I also have no idea what the premiums are, but I’m still quite confident that the policy remains to be one on the higher end.

Other than that, every policy varies so greatly that I can’t even begin to try to answer this question. Because everyone has a different situation and various needs, there is no simple answer. If we are the ONLY doctor you see, then the answer will be less complicated. However, that is never the case, so here’s the simple answer.

Think about the various doctors you see – are most of them in-network or out-of-network? What is the premium difference if you were to have zero out-of-network benefits versus good out-of-network coverage? What are the allowable amounts for out-of-network coverage (are they based on usual and customary or on Medicare fees)? How much do you expect to spend in our office?

So let me give you an example. Let’s say you pay a premium of $500 per month and you have no out-of-network benefits. To add out-of-network benefits, the premium would double to $1000/month. In my opinion, you would have to get back at least $500 x 12 = $6000 back from your insurance company in a year so it’s worth changing the policy. If you only spend $1500 in our office per year, then it’s definitely not worth changing the policy. With this same policy, if your out-of-network deductible is $5000, and you are spending $6000 at the office, then it’s definitely not worth it because you would potentially only get $1000 back (in truth it will be less, but trying to keep things simple in this example). Does that make sense?

To make things even more complicated, I added a new term above – allowable amounts. This means the amount of money an insurance company is going to “allow” in reimbursement pending any deductible and coinsurance.

So let’s say you go to the doctor, you pay $250 for the visit. You submit a claim to the insurance company, asking for reimbursement on this visit. If it’s the first time you’ve submitted an out-of-network claim for the year, good chance this claim will go towards your deductible. So you won’t receive any reimbursement on this claim. However, the insurance company only allows $200 for the visit. So $200 goes towards your deductible, even though you paid $250 out of pocket for the visit.

Let’s go into another example. Let’s say you have a deductible of $500 and coinsurance of 20%. You had a procedure done with an out-of-network doctor and they charged you $1000. Again, you submit the claim. The insurance allows $750 for the procedure. Of the $750 allowable, $500 goes towards your deductible…….$250 remains. Then 20% of the $250 ($50) goes towards your coinsurance, and you will be reimbursed $200 for the visit.

Now, all of my examples show a reasonably high reimbursement amount. Generally higher reimbursement or higher allowable amounts are correlated to “reasonable and customary”. This came from (supposedly) an algorithm of doctors in the area using the same codes and their average charge. Now, because the algorithm was questioned, the new trend of figuring out the allowable rate is based on Medicare fees. So an office visit, again, let’s say we charge $250. Medicare might allow something like $101.06 for the visit (at least that’s the going rate for us in NYC). Your plan states that 150% of Medicare rates are the allowable fee. So your plan would allow $151.59 for the visit. I have seen anything from 100% to 300% of Medicare rates as allowable, but this is the reason why it’s important to find out on what the allowable fees are based.

You are eligible for Medicare benefits if you are 65 or older or are disabled. There are various “parts” of Medicare coverage.

Part A: This is your hospital coverage. This is currently available for free to all Medicare beneficiaries. There is a $1676 deductible per year (as of 2025).

Part B: This is your outpatient coverage, meaning doctors, physical therapists, anyone you see outside of the hospital. There is a $257 deductible (as of 2025), and then Part B will cover 80% of all approved visits. There is a monthly premium for Part B benefits, which is generally $185 (as of 2025) but could be more if you have a higher income. Many people opt to pay for this premium through their social security benefits (so it’s taken out of your social security payment prior to going into your bank account).

Part C: This is called Medicare Advantage, where they group the Part A, B, and D benefits into one package (similar to what you see with commercial insurance policies). Very often you will see a low or zero premium payment, but the network of physicians is also very small compared to the traditional Medicare network. Also, please note that you still often pay the Part B premium so technically it’s not free the way it might be advertised.

Part D: This is your prescription plan.

SUPPLEMENTAL: For Part B, you can purchase a supplemental plan that will cover the 20% remaining of the visits (and sometimes even part or all of the deductible). If Medicare covers the visit, then your supplemental will cover the remaining amount. If Medicare denies a visit, then your supplemental will not cover the visit. AARP members often choose a plan offered by AARP (underwritten by United Healthcare), but please know that there are many options available. Probably more than you want to see.

If you go through traditional Medicare, you have to purchase Part B and Part D separately. If you don’t purchase a supplemental plan when you first sign up for Part B, it may be difficult to get a supplemental plan in the future. If you don’t sign up for Part D right away, you will be penalized when you do ultimately purchase a policy. Meaning you will pay a higher premium each month.

Medicare is confusing, and they are often the forefront of changing the rules (which is actually quite interesting, but waaaay too long of a topic to start here). If you’re confused, speak to the Medicare representatives. Just expect a long wait on the phone, so be prepared with something to do while you’re waiting.

More terminology:

EOB: This stands for Explanation of Benefits. Once you see a doctor, a claim is submitted to your insurance company for payment. You will get back documentation, called an EOB, that explains how the claim for the visit was processed, and who received payment for what. They will tell you each line item charge, what was billed, how much they “allowed” or covered, and how much went towards your deductible, coinsurance or copayment. If they deny any line items, they will tell you why. You can always appeal denied items.

Appeal: If you want to appeal or fight a denied claim, then you or your doctor’s office can send a letter to ask the insurance company to reconsider their denial. Usually you need a letter explaining why the claim should be covered, and very often is accompanied by medical records. Usually you can fight an insurance company twice (internal appeal) and then it would have to move to an external appeal, which means a third party is hired to review the appeal and renders a final decision. Sometimes an external appeal costs money, but is supposed to be an impartial party since it doesn’t involve the insurance company. They have a copy of your benefits along with the documentation you send.

Coordination of Benefits: Some people have multiple insurance company policies. Let’s say you’re eligible for Medicare and you signed up for Part A & B (Hospital and Doctors), but you also still work and have benefits from your employer. Then your employer’s company decides who is the primary insurance coverage and who is secondary. You don’t get to choose. So if your doctor doesn’t accept your primary insurance but accepts your secondary insurance, you would still consider your doctor as out of network. Let’s say you and your spouse both work and have benefits, and both of your benefits cover your child. Which is the primary insurance for the child? You then use the birthday rule. Take the month of the birthday for both parents (you and your spouse) and whoever has the first birthday (doesn’t matter the year, ONLY the month), that is the primary insurance for the child. The determination of primary, secondary, and even tertiary insurance coverage is called the coordination of benefits.

Hidden Health Benefits: Very often, many insurance companies offer special promotions or discounts for patients of which they may not be aware. For example, some insurance companies may offer to pay for part of a gym membership. Some may offer free products that encourage healthy habits.

Your insurance policy can be divided into medical (doctors, hospitals, etc.) and pharmacy plan/benefits. So you might have a deductible for medical and a separate deductible for pharmacy. Sometimes it’s the same (especially if it’s a high deductible plan). You will have separate deductibles and out of pocket maximums for in and out of network plans.

FSA and HSA: FSA and HSA are saving accounts that are specifically used for medical costs. Generally pre-tax dollars are put into the account if your employer is putting the money into the account when running payroll. Meaning, you don’t pay taxes on the money put into the account. If you use post-tax dollars but depositing directly into an HSA, you can usually request a credit for taxes in your tax return. FSA monies generally expire once a year (usually March 15) so you should only put in what you think you’re going to spend in a year. HSA is generally only available to those with high deductible plans, but the monies don’t expire in the same way as FSA.

GAP Exception or Network Deficiency: If you’re seeing an out-of-network doctor who does something special and you can’t get it in-network, you can request authorization from your insurance company for something called a GAP Exception or Network Deficiency. Basically you’re asking your insurance company to help cover something that isn’t provided in the network of doctors with whom they have contracted (hence the name, GAP or deficiency). Not all policies will allow this (especially self-funded policies), but always worth a shot! Every plan has a different process. Sometimes the doctor you want to see has to start the process, sometimes you have to start the process, sometimes an in-network doctor has to start the process (and state that they are referring you to this special doctor).

Prior Authorization: This is a request made by a doctor’s office for authorization, or permission, to perform a certain procedure or request a certain medication for you. These authorizations can take time to be done, and even longer for an insurance company to get back to you with an answer. When I perform prior authorizations for medications, I can get an answer back right away, or I might have to wait 72 hours for an answer. I have also waited up to two weeks for an answer about an authorization for an MRI!!  Now, that’s a bit unusual, but it can happen!

Let’s start with some basics:

Basic Plan Terminology

Plan Year versus Calendar Year: Your plan will reset every year. The date of the reset can vary. Plans that reset on a calendar year will always reset on January 1. Plans that work off a plan year will reset on the date that the insurance policy initially started.

Deductible: You have a certain amount of money that you will be required to pay upfront. This is your deductible. Very often, insurance companies have offset the premium (the monthly amount you pay for the policy) by offering a high deductible. This means people who don’t use their insurance often may save money by paying a lower premium and not paying much into their deductible. Almost all out-of-network policies will include a deductible.

In-Network versus Out-of-Network: Your insurance company has contracted with various hospitals, doctors, pharmacies, and medical supply companies to provide you with healthcare needs. These contracted providers are considered “in-network”. Anyone who has not contracted with your insurance company is “out-of-network”. Therefore, your insurance plan coverage will vary based on your in-network or out-of-network provider.

Copayment: A copayment is a set dollar amount being paid to a facility or doctor for a specific type of visit. For example, you may have a $0 copayment to see a primary care doctor, but you have a $30 copayment to see a specialist. That means each time you see the specialist, you will need to pay $30/visit.

Coinsurance: A coinsurance is a percentage of the cost of the visit being paid by the patient. So let’s say you’re seeing a doctor for a quick visit. Perhaps the insurance company has contracted to pay $100 for that type of visit, and your coinsurance is 15%. That means you’re responsible for 15% of $100 (or $15) for the visit.

Out of pocket maximum: Once you’ve hit your maximum out of pocket, your insurance company will pay for 100% of the visit. However, what’s included in the maximum out of pocket can vary from plan to plan. This might mean your deductible and your coinsurance together will go towards your out of pocket maximum.

Many patients suffer from dehydration or imbalance of electrolytes, causing symptoms of dizziness and fatigue. This can be related to dysautonomia, EDS, POTS, or another diagnosis.

Patients will require varying doses of electrolytes, so please contact your healthcare provider to make sure you’re taking the right amount!

We do not promote any single product; rather we like to offer various solutions due to various needs (and tastes!). Therefore, we present some options as follows:

• Vitassium / Salt Sticks
• Normalyte
• LMNT
• Nuun
• Buoy
• Liquid IV

Each company has varying products so check for what you need and run it by your doctor! Also, some of the companies offer discounts for chronic illnesses, so check that out as well.

Please see an interview with Dr. Norman Marcus and Jay Gill, discussing the use of low dose naltrexone for treating chronic pain related to Ehlers-Danlos Syndrome (EDS).

Ehlers Danlos Syndrome (EDS) is a connective tissue disorder that affects skin and joints between bones. The most common type of EDS is hEDS or hypermobility EDS. People with hEDS are usually more flexible or bendy than the average person. Being able to do a split, being able to bend your thumb back so it touches your wrist, and stretchy skin are three common signs of joint hypermobility. On the surface, these symptoms don’t seem too problematic, but hEDS can cause widespread pain in the body and many other problems.

There is growing research on the link between hEDS and another condition called called Mast Cell Activation Syndrome (MCAS). One recent study done by Song et al. in 2020 identified that 24% of a group of EDS patients also had MCAS.  This is a very exciting finding for EDS researchers because as of now, the genetic causes of EDS are unknown. Therefore, studying MCAS may provide an avenue for exploring the origins of EDS in the body.

Both of these conditions share many different symptoms including skin hives, skin flushing, itchy skin, nasal or sinus congestion, asthma, gastrointestinal disorders like irritable bowel disorder or celiac disease, and many more. Research connecting these two conditions is a new and exciting field for researchers trying to get to the bottom of the physiology of Ehler’s Danlos Syndrome.

If you know you have EDS or hypermobility, and also experience pain and allergy symptoms like hives, coughing, wheezing, or redness in the skin, it’s possible you also have Mast Cell Activation Syndrome.

Ehler’s Danlos Syndrome (EDS) is a condition that affects the connective tissues of the body. There are 13 types of EDS, and the most common one is hEDS or hypermobility EDS, which affects approximately 1 of 3,100-5,000 people. EDS can be inherited genetically.

The three most common symptoms in people with hEDS are joint hypermobility, skin hyperextensibility, and tissue fragility.

Can you do a split? Or does your thumb bend backwards so far that it can touch your wrist? Those are two examples of joint hypermobility. Joints are the pieces of connective tissue that are between our bones. Joint hypermobility can be a problem because it makes people more likely to be injured through dislocations, sprains, or other joint problems.

Skin hyperextensibility means excessively stretchy skin. A common test for this is putting your hand flat on a table, and gently pinching and pulling the skin on the back of your hand.

Tissue fragility can also be a problem for people with EDS. Medically speaking, tissues are like the armor of our bodily organs. For example, our skin is a type of tissue (epithelial), but there is also nervous tissue, connective tissue and muscle tissue. Tissue fragility can be a problematic part of EDS because it leaves our organs more vulnerable to damage and injury. Because tissue is in all parts of our bodies, tissue fragility can pose a wide range of other symptoms, from bruising to gum disease.

Because EDS symptoms can vary so widely, there is no one mainstay of treatment for EDS patients. Rather, treatment plans are based on the individual. EDS patients should seek a care team of specialists from multiple disciplines to ensure that all of their symptoms are being treated differently and professionally.

Do you have widespread pain? Do you also have allergy symptoms like itching, hives, or wheezing? You may have gone a long time thinking pain and allergy symptoms were unrelated, but you could have Mast Cell Activation Syndrome (MCAS), a condition that causes both.

If you have never heard of MCAS, that’s because MCAS is a condition that is only gaining recognition in the past decade or so. There are many doctors who are not familiar with MCAS. It was once thought to be a rare condition, but current estimates are that it could affect up to 17% of the general population. It’s important that such a common condition be understood.

MCAS is hard for doctors to diagnose for a few reasons. The main reason is that it is an under researched condition, despite being likely very prevalent. Furthermore, MCAS has a lot of symptoms that aren’t frequently associated with each other. Mainly, pain symptoms and allergy symptoms. In fact, a MCAS diagnosis requires that symptoms occur in two organ systems, for example, the skin (hives), and the gastrointestinal system (stomach pain). The two other most common organ systems affected by MCAS are the cardiovascular system, and the respiratory system. Cardiovascular symptoms include low blood pressure and fainting. Respiratory symptoms include shortness of breath, congestion, sneezing, or wheezing.

MCAS can be a confusing condition due to the vast range of symptoms that a person with MCAS can experience. A person with MCAS could go to a pain doctor and an allergist separately to seek answers for their two different symptoms. They might not bring up their stuffy nose and skin hives with the pain doctor, and they might skip the pain conversation with the allergist. As a result, the pain doctor and allergist might diagnose this patient with something completely different. Without a full picture of a person’s overall symptoms, it is tough to diagnose MCAS, which is why it is important for doctors to learn more about this condition.

If you have allergies and pain symptoms, you may have never thought about how these two seemingly unrelated symptoms might be a sign of a single condition. To learn more about a potential MCAS diagnosis, visit the link below and find out about a clinical trial on a medication for MCAS that may ease allergy and pain symptoms.