This page is a mix of tidbits and wisdom from some floxed individuals and their successful quest for disability. It will change and have additions as information becomes more relevant, so if this subject interests you, check back often. Updated 11/19/20
Throughout the article I will use this icon for hints. Whenever you see this icon it represents important information that was shared.
I get asked about Social Security disability from Fluoroquinolone Toxicity (FQAD) from time to time so I thought I would put something together. Before I go any further I want to throw in a couple of disclaimers. I am not a legal expert so nothing in this article is to be construed as legal advice. If you have any questions regarding disability, please consult a qualified, licensed, legal authority in your area.
Fluoroquinolone Toxicity destroys lives and causes undue hardship on individuals and families. Often times people are left struggling financially, putting some in dire straits with very little means to support themselves. Chances are, in the beginning, most folks suffering from Fluoroquinolone Toxicity are more concerned with immediate health issues as opposed to the specter of long term disability. Statistically, many will regain some semblance of normal functioning returning to their lives putting the horror of Fluoroquinolone toxicity behind them, so the timing in which you address disability is subjective.
I have talked to many newbies, who have metaphorically been on death’s door and then several months later have recovered sufficiently to move one. Some return when symptoms return later and some do not.
For some however, the changes become permanent and chronic health conditions ensue. Most of the questions about disability come from individuals that are chronically impacted by FQAD and a long term financial hardship is in sight.
The Bad and the Good
The bad news is that I don’t know of any (with maybe the exception of one) who actually got declared disabled and receive Federal disability based on FQAD alone. Why? Well, the answer is the same as to why you don’t have many doctors who acknowledge it. It just isn’t recognized. Getting disability can be hard to get for some even for commonly recognized medical maladies, so one can imagine how hard it is to get disability for something that is considered dubious.
The good news is that many have received disability conditions that were directly caused by the Fluoroquinolones. It is the end result and diagnosis that counts. For instance, several floxed individuals have received disability based on severe peripheral neuropathy, chronic fatigue, rheumatism or inflammatory conditions, etc…
So Why Apply for Disability?
Unfortunately, if chronic FQAD makes you too sick to continue working, applying for disability may be the most important long-term thing you can do to help yourself. Getting officially declared disabled for some will actually bring some stability, access to some medical treatment, comfort to others who worry about you, and the extra help you need to take care of yourself. Don’t get me wrong, it is not a panacea, but for some it can help, a lot.
Am I Disabled?
We need to get this out of the way first, so if you are still vacillating about your health conditions brought on by the Fluoroquinolones now is the time to face the reality head on and come to peace with it.
If you are newly floxed your situation is a mixed bag full of complexities. The reason I say this is because many newly floxed folks can literally feel like death warmed over one day and a month later feel better. However, the Fluoroquinolones can initiate a whole host of medical conditions that can result in chronic health conditions and disability. This doesn’t mean that you will become disabled after taking a Fluoroquinolone it means that, in some, the Fluoroquinolones can cause long term disabling symptoms.
For some, there comes a point when you realize that the Fluoroquinolones have caused chronic health conditions that are permanent and have rendered you disabled.
I know that it is daunting on many levels to come to terms with disability. The psychological impact of FQAD alone is huge, but the bottom line is, if you do not believe that you are disabled you will not get disability. Again for some this can be very daunting psychologically. If you can’t at least come to the acceptance of it, then maybe it is best to leave this subject and revisit later.
Hint: I am a proud man and one of the first mistakes I made was not telling the doctor each time I visited him exactly how greatly impacted I was. Get in the habit from the beginning to whine (for lack of a better word) to the doctor about your symptoms and make sure he/she is documenting then and the impact they have on your life. Initially it turned my stomach thinking about it. My wife would always tell me that “you portrayed yourself healthier than you really are” when we would leave the doctor’s office. In the long run, the more documentation you have, the better off you will be if you need it. I was wrong for not truly telling the doctor just how bad I felt from the very beginning.
The Right Doctor
This step often is the trickiest for floxed folks seeking disability. I know that it is hard enough to find a doctor that believes in FQAD let alone finding one to help you with disability. Some doctor’s refuse to write letters or fill out forms or have a policy of “no disability paperwork.” This can even be the case with doctors who are good at treatment.
For me I was lucky to have found a doctor who was great a treatment, the bad news is that for the longest time he was focused on getting me healthy (which is what a good doctor should do). From a Social Security standpoint this is bad because his documentation was not focused on disability. It wasn’t until after I got evidence of my mitochondrial damage via my muscle biopsy that he started to change his tune.
Hint: If the doctor you are seeing does not believe that you are disabled it can make it very, very hard to get approved for disability. It may be time to look for a doctor specifically to assist with your disability claim. Also, remember, your job is not to convince the doctor that FQAD exists, it is to make sure that they doctor documents your level of disability from whatever the final diagnosis is, such as peripheral neuropathy.
If you have a doctor that believes in your disability, then there is a better chance that you can get your doctor to help you with your disability claim. If you are seeing several doctors, it doesn’t hurt to inquire with all of them to ‘feel them out’ so to speak where they stand on disability. Some will be receptive, others, not so much.
Read my page on Finding Doctors, it may or may not help you with your search if you have to find another doctor.
The Right Form
If you have a doctor that will work with you on your disability claim then one the most helpful documents that you can have filled out is a Residual Functional Capacity form, or RFC form for short. There are RFC forms for both physical and mental ailments.
If you think that disability lies ahead for you, it is a good idea to have this form completed by your treating physician at the beginning of your claim for Social Security Disability. It also is a good idea to let your doctor know that you are pursuing a disability claim before asking him/her to complete the RFC form. This way you can gauge their feeling about the matter and so he/she will be expecting the form. RFC forms can be rather lengthy, so it will take the doctor some time to fill it out.
If you are on favorable terms with a nurse or staff member in your doctor’s office, it may be helpful to let them know what your plans are, so they can also have ‘eyes’ on the process as well. In some cases, this can help make sure the ‘ball’ doesn’t get dropped by the doctor, delaying the RFC filling out process.
Hint: I worked in law enforcement for over 30 years total and one thing that was drilled into our heads was: document, document, document. Document everything, ad nauseum. The same thing goes for your disability claim: document, document, document.
Maybe a Letter is Better
Some individuals opt for documenting their disability case by getting a letter from their doctor. If the doctor is not willing to fill out a RFC form, a letter can be a great form of documentation as well. If you doctor is willing to do both, that is great but that is often unheard of.
Hint: Doctors like shortcuts. A few folks that were granted disability from a FQ initiated condition brought a sample letter to their doctor. Doctors get overwhelmed at the idea of having to comb through all of your records to document you claim, so a letter seemed a easier way out.
Here are some sample letters to help you get the idea.
This list includes both physical and mental health documentation letters. The first three letters in the list include information on how the patient meets the exact criteria needed by Social Security. The other letters are also excellent and well documented.
Hint: Even letters from your loved ones detailing your disability can help your case. These letters can elaborate on how others have to help you with day to day tasks. These letters can be included by your attorney with submissions for disability hearings. My wife and adult son wrote letters detailing how my life was impacted and how they had to help me with certain daily functions.
FQAD Symptoms That Can Qualify Me for Disability
Like I mentioned before, I don’t know of many that actually got disability based on FQAD alone. You will most likely get approved based on a pathogenic process or disabling symptoms initiated by the Fluoroquinolones. To the Social Security Administration documenting the symptoms that are making you disabled is important. One way to do this is to use the Social Security Administration’s Listing of Impairments or often called the Blue Book.
If you can document that one of your Fluoroquinolone induced conditions matches one the descriptions listed in the Blue Book approval can come much easier. In Social Security Administration lingo this is called ‘meeting a listing.’
Here is link to the Social Security Administration’s Blue Book Listing of Impairment for Adults
Some of the medical conditions that Floxies get diagnosed with are not in the Social Security Administration’s Blue book. These include diagnoses such as Fibromyalgia, Regional Pain Syndromes, Chronic Fatigue, etc… The good news is that these conditions still have what is known as ‘rulings’ that help guide the disability claim. Here are lings to rulings for:
Regional Pain Syndromes
There are however illnesses in the Blue Book that qualify such as myopathy, mitochondrial disease and neuropathy.
Hint: Navigating the Social Security Administration is complex. At the very minimum I recommend having a family member or friend help you navigate the system. If possible, and the most preferred, get a disability lawyer to help you. I can’t stress enough that if you are going to use a disability lawyer to shop around. Due diligence research can pay off big in this area. Some lawyers are nothing more than form pushers while others really care about your situation can help navigate these waters, especially while you are so ill.
Many disability lawyers do not bill the client. If the client wins their disability they lawyer gets a set amount from the government. Check with the attorney about their policies and procedures.
A Combo Of Impairments
Like mentioned earlier, most floxed people are approved for a combination of impairments. That is why it is important that you are documenting with your doctor all conditions that affect your ability to function, in any way.
I kept a list of all of my diagnoses. I also kept records of all my lab tests, procedures, every doctor I saw.
Conditions common to floxed folks are Chronic fatigue (a big one), Neurological problems (also big), followed by Fibromyalgia, Cognitive Problems/Mental Disorders, Inflammatory disorders, and serious digestive problems.
The Fluoroquinolones are notorious for causing mental (neuropsychiatric) problems. For some, documented mental problems can be an important adjunct to physical diagnoses. I understand the stigma associated with mental health issues and that stigma does keep some from using mental health issues to bolster their chances disability approval. However, I know some who had psychiatric adverse events from Cipro and ultimately received official disability approval.
If you choose to support your disability claim with mental health issues, please consult a professional as to the ramifications. I can imagine where employers could take a dim view of this if you were applying for disability through work. Also, I believe that if you are approved on the basis of mental health alone, the Social Security Administration requires you to stay in some sort of mental health treatment program. Again, check with a disability professional.
Finding the Right Lawyer
If you do not have the correct doctor, finding a lawyer won’t help you much. The lawyer can only act upon what he has to work with. If your doctor is not documenting everything then the lawyer cannot create new data out of thin air or force their creation.
Some folks do not recommend using a lawyer from the very beginning or the initial SOC application. They say that the farther along in the process, the more a lawyer is required. My application process went all the way to a judicial hearing and I was glad I had a competent attorney who knew the process and was with me from the beginning. Even with his help, I got denied twice and was finally approved at a judicial hearing.
Hint: Do not expect the lawyer to even remotely understand FQ toxicity. What his job is, is to give you the best legal chance to obtain disability for a documented medical condition. Because of this he needs to understand the medical symptoms themselves, such a peripheral neuropathy, and how they relate to your disability. It is okay to explain to them what caused the disability. I know at least one floxie that used all the television stories to help his lawyer better ‘understand’ his damage from Levaquin. My lawyer once told me, it doesn’t matter how you got to the point of disability, what matters is how well we document, medically & otherwise, recognized symptoms and how they impact your functioning. That is why a good doctor is vitally important.
Reading my website, you’ll find that I have very mixed feelings about lawyers. That is one reason I do not directly or tacitly advertise for them (I been asked a lot over the years to advertise for those medical watchdog groups who are nothing more than lawyers looking for clients). I have seen lawyers get big payouts and floxed folks (those who are actually suffering) get next to nothing. However, this is one aspect in which I recommend getting a good lawyer who specializes in disability claims.
Ask around, make phone calls, and ask direct questions, to find a lawyer that can help you with your claim. You can also go to websites like this to help you with your search.
Don’t Give Up
If you believe that you have been documenting your case all wrong, it is not too late to start anew. I was able to get on disability but my inability to express my disability to my doctor cost me precious time. The administrative judge disagreed with my onset date based on the symptoms I was expressing to my doctor. He still approved me, but it wasn’t until I really started expressing my problems to my doctor, coupled with medical testing, that proved to the judge I was disabled.
It is possible to get on disability for Fluoroquinolone related symptoms. Besides myself, I have known several who have accomplished this. It takes time, patience, persistence, and sometimes a little luck. If you have information to share about how you successfully made it on disability, or mistakes you made, contact me as I will be updating this page from time to time.