Must Have Books

How You Can Help


Main Archive Index 

Next Newsletter




FMS Community Newsletter #82

FMS Community Website FMS Community Newsletter #82
Send in your tips for beating the winter blahs. Submit your tips to be published in the next newsletter. Mail to
Editors Corner One of the most submitted quesions to our organization is where can I find help in filing for disability benefits. With this in mind, this weeks newsletter will deal with gaining your disability benefits in the U.S.A. Our home base.
I would like to add, from personal experience, DO NOT WAIT to file for benefits. When I was forced to give up my career in 1992 little was known about FM/CMP and many doctors did not believe it was a real condition. I did not file for benefits and by the time I realized that I could have tried it was to late to file. Fight for your rights and let people who are educated in the system help you.
Jane Kohler


~ Navigating the Disability Insurance Maze
~ Helping Fibromyalgia Patients Obtain Social Security Benefits
~ Persevere on disability claims by Scott E. Davis, Attorney/Disability expert.
~ Financial Help For Low Income Homes
~ Fibromyalgia, CFIDS, HCV and Social Security Disability
~ Disinissues - An online support group full of information and help to guide you through the disability process.
~ The Disinissues Good Lawyer List
~ Social Security and Fibromyalgia
~ Sign up for free or low cost medicine.
~ Disability Insurance Benefits

~ Navigating the Disability Insurance Maze
As many people with CFIDS have learned, obtaining disability insurance payments can be as frustrating as the illness itself. The process is complex and fraught with numerous traps for the unwary. Yet despite what you may have heard or read, the majority of CFIDS claims are paid by disability insurers. What follows is some advice that may help you win your claim after you’ve been denied benefits.


Helping Fibromyalgia Patients Obtain Social Security Benefits
The Social Security system does not easily or quickly rule favorably on a claim of disability. For patients with fibromyalgia and similar disease entities, whose very existence is often questioned, proof of disability is especially difficult. Nevertheless, by following an orderly and logical process, claimants may become eligible to receive benefits. Read entire article at:


Persevere on disability claims by Scott E. Davis, Disability expert.

The application and appeals process for Social Security Disability Insurance benefits can be so overwhelming and intimidating that roughly half of all applicants give up after they are first denied benefits by the Social Security Administration (SSA). The process can make you feel like you are David fighting Goliath. But if you prepare you case with the right legal and medical documentation, and if you persevere, you can significantly increase your odds of obtaining benefits. Proper preparation of your case is critical, as SSA has made it increasingly more difficult to obtain benefits over the past several years.

The following are questions I’m frequently asked regarding the disability system in general and specifically about cases involving CFIDS and fibromyalgia.

Q: SSA denied my claim. What’s the point of appealing? I don’t have any new evidence, so I don’t see how I can fight this huge agency with all of their experts and their complicated regulations.

A: If this is you, you’re feeling exactly the way SSA wants you to feel – defeated. DON’T QUIT! Keep in mind that 75% of all disability applicants are denied benefits during the first step of the SSA process. SSA knows that
about half of those denied benefits will give up and not appeal. However, 55%-60% or about three in five of those who do appeal and go before an administrative law judge (ALJ) will obtain benefits.

If you are denied benefits, don’t delay! You must appeal any denial letter from SSA within 60 days. Following your appeal, the second step is similar to the first, in that it is “merely” a paper review of your claim. You still
will not meet with anyone. The review, like the initial decision, is based primarily on forms you completed and your medical records. The SSA employees at these first two steps of the process often are looking for reasons to
deny your application. While a very high percentage of applications are denied at this review stage—80%--don’t despair. By appealing this denial, you move closer to a hearing before an ALJ.

Q: Do I need an attorney? How can I afford to hire an attorney? Will an attorney really improve my chances of winning benefits?

A: I am asked this question frequently and my reply is always, “Do you know what you have to prove in order to obtain benefits?” The response is always, “I have no idea.”

You can hire an attorney at any stage of the process. Practically all disability attorneys work on a contingency basis, which means no money up front and you pay the attorney for his or her time only if you obtain
benefits. Federal law sets a maximum amount for that fee, and in almost every case it is a very small amount compared to the benefits a person will receive.

Now that you can afford an attorney, should you hire one? Absolutely. The earlier you hire an attorney, the sooner he or she can begin preparing your case. You should substantially increase your chances of winning by working with an attorney who specializes in disability law. The system is complex, and an attorney will develop your case by obtaining the necessary medical
and vocational records and opinions from your doctors that are critical to providing disability.

An attorney is especially important in the appeals process and in presenting your case to the judge, but he or she can be helpful earlier, too. If you have a treating physician, your attorney can fight to have your doctor
perform a disability evaluation rather than an SSA doctor, who will almost always tell the judge you are not disabled. Also, the application requires a
dizzying array of forms requesting all sorts of information, and your attorney should help you fill them out as they are important to your case.
You won’t win your case with the information you give on the forms, but you could lose it. Your answers should be honest and somewhat brief. It is critical to focus on your exertional and non-exertional limitations and
restrictions when completing the forms.

Q: My doctor believes in CFIDS and that I am too sick to work, but is the SSA going to believe my doctor?

A: Your doctor is not thinking about your disability claim when he or she is treating you. You need to tell your doctor you’ve filed a claim for disability and measures his or her response. If you are certain your doctor
supports your claim, a reference in the records that you are unable to work is very helpful.

You must be a very detailed historian. Keep notes about the severity and frequency of your pain, fatigue and other symptoms and about what you are able to do—or not able to do—from day to day. Give this information to your doctor and tell him or her that you want it included in your records. Then get and keep copies of all your medical records. Do not assume SSA will have
all your records; 95% of the time, critical records are missing.

Q: My doctor has suggested a lot of different treatments, but there are a few I’m not sure about and a few I’d like to try that he doesn’t think will help. How could this affect my case?

A: Exhausting all the possible treatments is good for your disability case. It makes your testimony and that of your doctor more credible and supports
the severity of your symptoms because you will have tried everything to find relief. I always advise clients to undergo and try any treatment the specialist prescribes, including non-traditional treatment. You don’t want
to give an ALJ any reason to wonder whether your condition might be so severe if you had only followed your own doctor’s instructions. The SSA’s doctors will usually tell the judge that your symptoms would improve and allow you to work if you would undergo some type of treatment, and that’s an opportunity for the judge to deny your claim.

It’s important not to panic and not to give up. The SSA and ALJs are increasingly familiar with fibromyalgia and CFIDS, and many people do win their disability case based on those diagnoses. You will need perseverance
and knowledge of the system to win your case, but you must not give up! Appeal every denial, hire an attorney and keep fighting.


Financial Help For Low Income Homes

Until your case is settled and your disability check arrives, you may need help with food, medication and more. For help with medical issues fill out the form for over 1,100 programs to help low income families.


Fibromyalgia, CFIDS, HCV and Social Security Disability

As discussed in prior articles, obtaining disability benefits from Social Security can be a challenge for people with HCV. Many of the symptoms, such as pain and fatigue are subjective, which makes them difficult to prove with laboratory testing. In addition, it is sometimes difficult to demonstrate that the symptoms are expected to last at least twelve months, especially when the primary disabling symptoms are due to the regimen of treatment.

However, Social Security looks at the total person and all symptoms when determining disability. They look at the cumulative effect of all symptoms regardless of their origin, including side effects of medication. HCV infection is only one possible source of severe fatigue. Read the entire article at:


The purpose of Disinissues is to share experience and advice about the processes of applying for, appealing, and renewing Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and private long-term disability insurance.

Disinissues stands for DIS-ability IN-surance ISSUES. It is targeted mainly towards those with invisible disabilities, such as CFIDS and other conditions not on Social Security's Listing of Impairments.

Disinissues messages are available as individual email messages or in digest format. Messages cannot be read on the web. Please do not send a message before you receive and read the Welcome Message and Group Rules, which are also available in the Files section.

If you prefer not to have your name and email address revealed publicly, you may use an alternative address, such as the address with your Yahoo ID, for posting messages.

Group members may find answers to their questions in our Links and Files sections.

The list was created by and for patients with disabling medical conditions; if you are not receiving or applying for benefits for yourself or a family member, or appealing a decision, you must identify yourself to the list moderators and explain what your purpose is for being on the list. Otherwise, your presence is emphatically not welcome. Benefits professionals are welcome only if they are here to learn or to help.

Although the information available through sharing experience with disability claims is indeed very supportive, Disinissues is not a support group. Messages about the emotional difficulty of the transition from work to disability, or, generally, what it means to live with chronic disabling illness, are not on-topic. Chit chat or discussion of personal, financial, or medical matters, including Medicare, is not permitted. Messages are not only moderated but strictly edited.

The Disinissues Good Lawyer List
Go directly to the state-by-state index.
To recommend a lawyer for the list, or to comment on a lawyer already on the list, write to The Disinissues Administrators. This page contains a list of lawyers who have been recommended by subscribers to the Disinissues discussion list. The list is organized by state, but lawyers can in many instances cross state lines in their work, so you should not feel limited to your own state in your search for a good lawyer.


~ Social Security and Fibromyalgia

At the moment, there is no entry in Social Security Disability 's Listing of Impairments manual for the condition known as Fibromyalgia, also known as fibromyositis and Myofacial Pain Syndrome (The disability listing's, of course, provide the approval criteria for a number of different impairments ranging from amputations to seizure disorder).

Nevertheless, many claimants with fibromyalgia apply for disability, and many go on to win their cases. For this reason, the fibromyalgia disability claimant who's been denied should not give up on their case. Instead, they should pursue their disability claim through the appeals process, keeping in mind how the Social Security Administration views this particular impairment.

Exactly how does Social Security Disability view Fibromyalgia?

As with all disability claims, after a person files at the Social Security Office, their case is transferred to DDS (Disability Determination Services), the agency responsible for making decisions on Disability cases.

When a case arrives at DDS, it is assigned to a specialist, or Examiner, who orders medical records and uses these records to make a determination. In other words, approve a disability claim, or deny it.

Unfortunately, when an Examiner receives a case in which the only allegation (reason for disability) is Fibromyalgia, the outlook for approval is not good. In fact, Social Security Disability will generally give little weight to such a claim unless another condition is involved, such as arthritis or degenerative disc disease.

Why is this? Part of the problem has to do with the nature of Fibromyalgia itself. Fibromyalgia is an impairment whose causes are not fully understood. And though it may be a legitimate disability in and of itself, because it's symptoms and speculated causes vary so much from one person to the next, disability Examiners are never sure how to classify such cases. Therefore, it helps a social security case considerably if a Fibromyalgia diagnosis has been made in conjunction with another diagnosis, preferably one of a musculoskeletal nature.

For example, if a claimant makes a disability claim and the chief impairments are either Fibromyalgia and Rheumatoid Arthritis, or Fibromyalgia and Degenerative Disc Disease, the Fibromyalgia allegation will automatically carry more weight. This is because, in such cases, Fibromyalgia will be seen as a logical and plausible extension to what are generally thought of as "more proven" impairments.

Additionally, and this is very significant, a Fibromyalgia diagnosis made by an Orthopedist or Rheumatologist will seem very logical to a disability Examiner and, as a result, will also strengthen a Social Security disability claim.

This is in direct contrast to situations where the Fibromyalgia diagnosis has been made by an Internist, or "family doctor".

When a personal physician renders a Fibromyalgia diagnosis, without a corroborative diagnosis by a specialist, it has the appearance to a disability Examiner of a label that's been used by a doctor...simply for lack of a better way to label a patient's pain.

And, often, and unfortunately, this is exactly the case. Many times when family doctor's are unable to find reasons for the pain their patients feel, they diagnose "Fibromyalgia" as the cause. Disability Examiners see this routinely in the records they review.

The effect this has is not helpful for a Social Security Disability case because it dilutes, in the eyes of the disability Examiner, the significance of this particular ailment.

Obviously, this is not the fault of the disability claimant who is suffering from Fibromyalgia and is struggling to get their case approved. But it is helpful to understand how the disability process works in this regard and to consider how Social Security Examiners sometimes view applications where this illness is alleged.


~ Disability InsuranceBenefitsWritten by Timothy Moore
As the publisher of a website devoted to disability issues, and as one who receives occasional mail from claimants, one thing stands out amazingly loud and clear: too many disability claimants are waiting way too long to get their applications going.

In fact, it's almost stunning how many people are out there in their forties, fifties, even in their late fifties, with significant physical and/or mental impairments and yet have not filed for social security disability or ssi.

I don't use the word stunning lightly, either. In the last few years, I've been, in varying capacties, in daily contact with disability claimants (several thousand). Even prior to becoming a disability examiner, I had been a medicaid caseworker, taking applications for medicaid that would go to disability determination services for a medical determination Yet, not in any of that time, did I get a clear picture of how many disabled individuals there must be who are not pursuing their benefits.

Why do so many people put off filing for benefits? There are lots of different reasons, I suppose, and one that I can't discount is that a certain percentage of individuals have probably been intimidated by all the "bad stuff" they've heard about the program (high denial rates, files and paperwork getting lost, rude social security employees, etc, etc).

However, I have the strong impression that many potential claimants either do not file or put off filing because A. they feel embarassed about filing or B. they want to go back to work and are truly hoping their condition will improve to the point that this will become possible.

This is what I would tell a friend, relative, neighbor, and anyone who reads this: if you believe you are disabled, file your application ASAP. Because if your medical condition does indeed prevent you from returning to work, any embarassment you feel over filing will weigh very little against your immediate financial concerns. And if you're hoping that your condition will improve to the point where you can work again, that's a great attitude...but what if it doesn't. You're always safer and wiser if you hedge your bets.

The federal disability system in the U.S. is presently in a "slow-mode" meltdown and (that's just my opinion) and right now, start to finish, it can take up to three years to get through the whole process (initial claim, reconsideration, alj hearing). So, don't THINK about filing. Just FILE.

You may have read in the news that the social security disability system is slated for improvement soon. Again, this is just my opinion, but don't count on it. The reform proposals being advocated by the current SSA Commissioner may arguably make things a lot worse for claimants and the process in general. Commissioner Barnhart's proposals will certainly make the SSD-SSI system more hostile and adversarial to claimants. And there's good reason to believe that her proposals will not even speed things up. They may, in fact, have quite the opposite effect. Please remember that this is the same administration that thought it was ok NOT to pay overtime to people working 50 hours a week as long as they would classified as "working supervisors". It's also the same group that thinks it's ok for individual citizens to be barred from debt relief while individuals occupying the ivory towers (I'm thinking of "The Donald" here) seem to be filing for bankruptcy protection every time you turn around.

I will leave you with this thought. It was under the current Social Security Administration Commissioner that HPI was instituted. This was an efficiency program that, instead of bringing efficiency to the disability hearing process actually slowed things down by at least a FACTOR OF THREE (hearings in north carolina, for example, used to take at most 5 months to get---now they take up to 15-24 months, depending on what hearing office you have to deal with).

To reiterate: If you are disabled, don't think about filing. Just file and get it done.

The author of this article is Timothy Moore, who, in addition to being a former food stamp caseworker, medicaid caseworker and AFDC caseworker, is a former disability claims examiner. He publishes information at

Article Source:

Last Updated ( Friday, 11 August 2006 )
Next >


~ Sign up for free or low cost medicine.

The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Many will get them free or nearly free. Its mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669).

In order to find out what patient assistance programs you may qualify for, all you have to do is answer a few short eligibility questions. This site will help supply you with the information you need to get involved in a program and even allow you to download applications online. You can then follow the instructions on the application to apply.

This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.
FMS Community