i have ssdi for fibromyalgia now what do i do in dr visits

i have chronic pain fatique and have my ssdi. now when i go to the dr. do i explain my pain everytime i go to him. he already knows this, but i am reviewed by social security and want them to continue to find me disabled. how do i go about this what do i say each time


Senior Member
The good news is, it's pretty hard to get kicked off SSDI unless you go back work, earning above the Substantial Gainful Activity amount (about $900 a month, last I checked).

When your review comes up, if you're lucky, you'll get the short form. It's 5 simple questions, read by a computer. Answer the 5 questions, don't make any stray marks or comments and it should sail on through.

If you're unlucky, or they want to do a spot check, you'll get the long review. This is similar to the original paperwork you filled out. If you saved a copy of your original paperwork, you can just recopy that where appropriate.

You should also be going to your doctor every 6 months, so that he can document that you continue to be disabled.

I've had one of each and passed both. The disconcerting thing was that for the short form, they didn't send any letter saying if I'd passed or not. They kept paying me, so I figured after awhile I was good. They sent a letter for the long form but it didn't arrive until several months later.


ahimsa_pdx on twitter
As caledonia mentioned, you should try to visit your doctor regularly (at least a couple of times per year), even if there is no treatment that the doctor can provide right now, just to show that you are continuing to look for any new treatments that may be discovered.

Also, one good suggestion that I have heard is to bring a list of your current symptoms/issues with you to each doctor appointment (or maybe just once per year). You don't have to discuss the list of symptoms with your doctor. In fact, most lists would be too long to cover in those standard 10-15 minute appointments. But that page will be added to your file. You would need to create this list from scratch the first time but then you could modify it with any changes for each new appointment.

The problem with relying on doctor notes is that they won't cover the details of your functional limitations. That's the type of thing that is important when considering whether a patient is eligible for disability - not the diagnosis but how the illness limits your ability to work. So make sure the list includes not only the symptoms but also how these symptoms affect you in your daily life and how they would impair your ability to work. For example, how do symptoms limit your ability to sit, stand, communicate, concentrate, etc., on a consistent and reliable basis?

I hope this helps. You might want to join the yahoo group DISINISSUES ( http://groups.yahoo.com/group/Disinissues/ ) if you have more questions.


Senior Member
You may also want to remember to keep filling your prescriptions regularly even if you're feeling better for a time and find you don't need them as frequently as prescribed. SSA can pretend they don't understand the relapsing/remitting course of your disease and use major fluctuations in your medication needs against you. They do check pharmacy records so if you don't fill your meds, they will think you are either well or non-compliant. Keep in mind that the side effects of your medications count as part of your disability. This is a HUGE factor so many people applying for disability or trying to maintain it often fail to grasp and use to help them. So for instance, if your muscle relaxer medication makes it impossible for you to drive when you take it in the morning, then in the eyes of SSA you can't drive, since they assume you are taking the medications as prescribed and that you always need the medication, even though maybe you actually find that when you're not in a big flare, a certain medication works better for you if you perhaps take only one and take it at night instead of say, three times a day as it might be prescribed and as you might take it during a flare. So for disability purposes, they way you would be if you took all your medications exactly as prescribed all of the time is considered part of your disability. This is of course within reason. Common sense has to be applied as well.

Mya Symons

Mya Symons
I also have fibromyalgia. Be truthful about the pain you are feeling. The mistake I made was trying to be "positive" like the docs wanted me to be. I tried to hide the pain because I kept on hearing it had to do with me having a negative outlook on life; and, I started to believe what they said. (I no longer believe that.) This resulted in me being denied SSDI. As you probably know, none of the medications they prescribe completely take away the pain. It is always there in some form. Let your doctor know that.

One more thing. If you are required to go to a pain clinic for therapy with a counselor or psychologist and you find it is not working for your pain, be sure you let the doctor know that also.


Senior Member
Melbourne, Australia
You make a good point, Mya,

I have always made people aware of my pain & limitations (not that many people took notice many years ago).

I still make people (& medicos) aware of my intermittent symptoms.

I refuse to pretend I am 100% when I'm not.

I also think it's important to keep a diary and records. Last Monday night, I sat at the computer & retyped all my current issues, starting at the top of my head & working down my body.

Surprisingly, I filled 11 x A4 pages of typing (& I would be one of the more mobile members of this forum).

Don't forget the things like eg. decreased hearing (I've had it professionally tested & yes, my hearing is failing).

These type of symptoms may well belong to another health problem besides ME/CFS/FM, but the reality is that before I quit work 6 months ago, I was having trouble hearing on the phone (which was a major component of my job).

Remember to record & diarize the whole picture of your health - Mind, Body & Spirit, not just the ME/CFS/FM physical symptoms.

If you keep a small diary, even just writing "nausea & headache all day today" is worthwhile OR "right hand is numb this morning".

It doesn't take too much energy to diarize small notes for yourself. Don't rely on your memory, it's stressful & too time/energy consuming.

I started keeping a diary to record all the time I worked back at work about 10 - 12 years ago. This is how my record keeping started. I also wrote in this small diary every medical appointment.

I also wrote when I felt dizzy & was bumping into office furniture.

These little purse sized diaries, together with a big box of medical receipts/claims enabled me to write a summary of about 14 years worth of my health life (took me a long time to type it all up, but I did it a few hours at a time, so I wouldn't get too fatigued or exacerbate my neck, back, shoulder pain).

I keep adding to this list of records (& keep the original documentation, test results etc), so if anyone were to query my Health claims, I would have no hesitation in providing proof.

Of course, I was lucky to be of the type of personality type that keeps accounts & records.

ahimsa made a good point - have a list. You can always add/update it before you go to each medical appointment.