This page(s) will be a mix of tidbits and wisdom from some folks in the FQ realm and their successful quest for disability. It will change and have additions as information becomes more relevant, so if this subject interest you, check back often or subscribe to keep updated. Updated 06/13/18
Throughout the article I will use this icon for hints. Whenever you see this icon it represents important information that was shared.
- The Bad and The Good
- So Why Apply for Disability?
- Am I Disabled?
- The Right Doctor
- The Right Form
- Maybe A letter is Better
- FQAD Symptoms That Can Qualify Me for Disability
- A Combo of Impairments
- Finding The Right Layer
- Don’t Give Up
I get asked about Social Security disability from Fluoroquinolone (FQ) 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 in this area and 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.
FQAD 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 FQ Toxicity are more concerned with immediate health issues as opposed to the specter of long term disability. Statistically, more than half will regain some semblance of normal functioning returning to their lives and putting the horror of FQ toxicity behind them, so the timing in which you address disability is tricky.
I do not know how many newly floxed that I have talked to, who have metaphorically been on death’s door and then several weeks to months later they have recovered sufficiently to move one. Some return, some do not.
For some however, the changes become permanent and a chronic health condition ensues. 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 news is that I know very few who have actually got declared disabled and receive Federal disability based on FQAD alone (actually only two and even then the descriptions are tenuous).Why? It just isn’t recognized. When it is hard enough to get disability for commonly recognized medical maladies, 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 on a condition, or combination of several conditions, that were caused by the FQ’s. For instance, I know several who have received disability based on severe peripheral neuropathy, chronic fatigue, rheumatism or inflammatory conditions, etc…
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 it can help, a lot.
We need to get this out of the way first, so if you are still vacillating about your health conditions brought on by the FQ’s 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 FQ’s 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 and FQ, it means that, in some, the FQ’s can cause long term disabling symptoms.
For some, there comes a point when you realize that the FQ’s 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.
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.
This is tricky to say the least. I know that it is hard enough to find a doctor that believes in FQAD let alone find 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 is often the case with good treatment doctors.
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 is 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.
If you have a doctor that believes in your disability, then 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.
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.
Some folks 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.
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 they had to help me with certain functions.
Like I mentioned before, a know very few who actually got disability based on FQAD. Most get approved based on pathogenic process or disabling symptoms initiated by the FQ’s. To the SOC documenting the symptoms that are making you disabled is important. One way to do this is to use the SOC’s Listing of Impairments or often called the Blue Book.
If you can document that one of your FQ induced conditions matches one the descriptions listed in the Blue Book approval can come much easier. In SOC lingo this is called ‘meeting a listing.’
Here is link to the SOC Blue Book Listing of Impairment for Adults
A lot of medical conditions that Floxies get diagnosed with are not in the SOC 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:
There are however illnesses in the Blue Book that qualify such as neuropathy.
Hint: Navigating SOC is complex. At the very minimum I recommend having a family member or friend help you navigate the system. If possible, am 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.
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 Digestive Problems.
The FQ’s are notorious for causing mental problems. For some, documented mental problems can be an important adjunct to physical diagnoses. I understand the stigma associated with mental health issues and it does keep some from using mental health issues to bolstering their chances of SOC approval. However, I know some who had psychiatric adverse events from Cipro and ultimately received SOC 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, SOC requires you to stay in some sort of mental health treatment program. Again, check with a disability professional.
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 understand FQ toxicity. What his job is, is to give you the best legal chance to obtain disability. 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 experienced 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.
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 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 FQ related symptoms. Besides myself, I have known several you 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.