How do you make the decision/know when it is time to apply for disability?

I am currently on FMLA, not working, due to TN combined with fibromyalgia and a rheumatoid arthritis. My pain levels, fatigue and mental confusion, memory, etc. have gotten bad enough that I cannot do my job (I’m a grant writer) or much of anything (can't even keep crochet patterns straight!) and I do not see where I will be able to go back to work. I’ve had 2 MVDs, am currently on Trileptal and Lyrica (not sure I can stay on it) which dull the pain a bit. I’ve worked and been the “breadwinner” for most of my life (I’m 54) so I’m really at a loss as to how to proceed. Disability seems so drastic, but the reality is that I can’t work. So, how do you make the decision/know when it is time to apply for disability?



I am in the same boat you are. I still work and I have been a go getter my whole life but I can’t keep up anymore. I have been thinking about disability for a year now but I can’t get myself to do it. I haven’t worked a full day in a long time and have changed my hours all different ways to see if I can handle it. I feel like I have to be bionic woman and I just can’t do it anymore. I don’t know what to do. I feel like such a failure if I give up and that feels like what I’m doing if I don’t get up everyday and keep trying to go. I am miserable everyday but sometimes I feel like I would be more miserable if I’m not working. Sometimes I feel that it is therapeutic but other times I feel I just can’t do it. It is getting harder and harder. I just sent all my medical records to Dr. Casey to try to have one last hope. I have had 2 MVD’s and 2 Cyberknifes and now I have anesthesia dolorosa along with the TN, so I have 24 hours a day of chronic pain and discomfort but my mind says to keep fighting and my body says slow down. I wonder the same question as you “when is it time”?? Good luck to you and let me know what you decide and the process!!

I have been the bread maker or as my husband and I joke the sugar momma of the family for a couple of years now. By no means am I close to retirement age. Recently though my TN pain has changed and become more aggressive. My pain doctor has been great through and very is understanding with compassion towards me and the battle against pain. Any how in the last few weeks the pain levels went to out of control crazy pain. Even with the changes in dosages for my medication talking is limited and I can only soft food. Both of these activities can bring me to tears and into a horrible pain fit the last for hours if I over do it. There is also the question of how much stress affects my pain levels, and add to that I have extermly stressful job. My doctor just put me on a undetermined amount of time off of work, so now I’m off of work on FMLA. My last appointment my doctor was the one to bring up going on disablity permently. He can not see how I will be able to work when the pain is constant and anything can potentially put me into a super flare up or pain fit.
He also questions the amount of stress Ican handle and knows I am in a stressful postion at my job. Lastly he mentioned that I’m the type of person that would go to work and bare it no matter what. This is not something my doctor ever recommends to his patients. normally he encourages them to keep working. In my case though we know it is not going to get better but may in fact only worsen over time. We also know my treatment options are limited to medications. Considering how aggerisive the pain has been and how quickly it has changed my pain mangament doctor frankly has been surprised to see me continue to work already for as long as I have especially over the period of this last year. My husband who is also very worried about me right now wants me to start considering disablity. Personally it scares the crap out of me. One even though I work at place I can not stand I generally like what I do and like that having a job gives me a sense of accomplishment and fullfillment, there is also the pride and independence going to work gives me. The financially impact of me on disablity scares me too. So really at this point it is not really my choice but is being forced on my by TN and I’m not ready to go for disablity, I knew at one point I would need to but not this soon and not when I’m just barely to my mid thirties. This seems way too soon for me. If I had the choice I would continue working. So to answer your question I’m not choosing to go to disability on my own rather the illnesses I have are choosing this for me:( I wish I could answer your question better and hope this may help you in some way.

There are others like me! The feelings of failure, the guilt that comes with the huge financial impact...and yes, I'm terrified. I want to keep on pushing, but my health issues make it impossible. So, perhaps I need to start looking at this like you Kari: this isn't my choice, it is what I'm being given to deal with.

My entire family feels I need to apply for disability but I keep putting it off, going to another is pain mgmt. even though I don't see what they can do that my neurologist and rheumatolist can't.

Thank you both, this has me thinking (slowly) :-)


Pam you’re welcome, although maybe I should tell my husband and doctor you day thank, as that is not really my thought. The whole idea that it is the disease and what it is handing me are the thoughts given to me by my husband and doctor. Myself personally still feel it is my own fault and that I am letting my self down and others surrounding me. Right now I’m really am trying to think it is the cards that I was dealt with, with the illness, but its hard to do that. So yes you are not alone and I know exactly how you feel on this. Not only do I worry about me letting everyone down, that due to not “looking” sick and only being 34 (35 in just a couple more months) and being too young in my thoughts to be on disability, I worry how others will think of me, like; how I’m just be lazy, making it all up because I just don’t want to work, making up having an illness for attention, how it’s such a pity that I’m so ill I can no longer work, that my illness is really not that bad and I’m playing up the amount of pain, that someone saw me doing some activity and there should be no reason I can not work because I was doing xyz activity, or any other judgmental thinking in these lines. Today I’ve also added that what type of role model will I be for my daughters if I go I disability, even though the know I am ill, that I’m leaving harder time each year, and that I can no longer do the same activities I did a year ago. I worry that my friends will think I’m taking the “easy way” out. At the same time I feel as if I will be losing a big part of my self. Earlier this morning I did look up the mourning phases again and reminded my self that I have the right to the feeling I and thoughts that I have and in time I may have other such as anger, bargaining, ect. Pam you are for sure not the only going through (by the way I felt I was the only one too until I saw your thread). So we can be in this together.

My apologies if I gave you anymore yucky thoughts to think of. That was not my intention, only to get these thoughts out of my head. Some of these I just do not feel like sharing with my husband just, but I needed to get them of my chest. Also sorry for this rambling now. Hope this helps you in some way and that you have a great day that is pain free.

I stopped working two years ago. I was having such bad pain, I started fainting. It happened twice at work. I’ve been on disability, and just recently qualified for medicare. But… I’m 27. I feel like a failure because I’m not able to work at such a young age. But I wasn’t dependable, and now it works since I can be home with my children… I’m hoping, though, to start getting enough relief that I can start small side jobs. Even if I can’t contribute much, it’ll do me.some good to keep busy… I thinkif you have such pain, you owe it to yourself to take a break from work and focus on your health, if you’re able to.

I am tears as I read this string, so many of my own thoughts and feelings summed up by others. I too feel like I am letting my daughters down, not being a good example. I feel like I have let my husband down, by being off of work, not having the energy to keep up the house, etc. I almost lost my job in January due to cognitive problems, making a lot of mistakes. I had MVD in March which helped some with the type 1 pain but not at all with the type 2 pain. I had Gamma Knife in March which did not help at all, just left me with a numb spot on the back of my head. I went from working 50 plus hours a week to now only 20. I've used up all of my FMLA, but luckily have great benefits at work so my pay is still being supplemented by disability. I am in pain everyday, sometimes better, most of the time worse. But what do we do??? My doctor is the one who pointed out to me that "this" chose me, I didn't choose "it". I currently am on no regular meds as the doctors can't find one that will work.. Just Tramadol for a rescue drug and sleeping pills to help me sleep at night. I read my doctor's letters to the disability people, they have gone from "chances of full recover excellent" to the last one "chance of full recovery fair". Where do we go from here????

I went on disability right off the bat, because my job required it. I have an insurance policy that work provided which pays 60% of my average income. I work as an insurance adjuster and am on the road in a company car all day, and I was unable to drive with the meds, and it was a liabilty for me to do so with my company.

I'm still on disability, trying to get relief from the disorder that caused all this and hoping to go back soon...I was lucky in that my whole disability process was incredibly easy


Jeepers - I read all this stuff and realize what I am feeling is exactly what everyone else is feeling. I am on a disability insurance that I had as health care provider. I am ashamed when I have to give my neurologist the papers for him to feel out so that I can continue on the insurance. I am now almost 3 years on this insurance and I still dont know how to approach the neurologist re: future for full recovery, work etc. Like should I try to be working? Even though the pain is 24 hours a day? Are most people in my boat tougher than me and able to work? Am I a woos? I feel grateful for the money coming in but should I be working because it is a little better? I really hate that I have this and feel some comfort knowing that I am not alone. I look forward to hearing when you do access the disability your country offers.

Thanks Alison

Hope, Alison… I think your guys are telling my story as well as yours! Hope - had MVD in April, went back to work 4 weeks ago and pain has returned in the past 2 weeks… GP told me Friday I need to quit my job. I cried for an hour, but in reality knew it was gonna have to be that way. I’m 48, have had TN FOR 2 years with it increasing exponentially and taking SO MUCH from that normal life.

I hesitate to discuss with my doc about disability and honestly don’t think my neurosurgeon would help me with the process (told me when i told him my pain was trying to come back that i needed to do meditation and go on a anti inflammatory diet…) my GP would, he has known me all my life. I thank my NS, but he (brilliantly) has done his part, the surgery wound is healing and now he is done.

I can’t work, gonna tell them this week…dread it. I’m a career oriented person too…I guess my identity intertwines too much with my career… ugh

What / who do I contact first to find out if I am eligible for disability? I’ve read the info on here…but with everything we take / go through…I know my reasoning and thinking processes have changed.

Thank you for this thread…perfect timing


I feel like if you need it, you need it, and that's what its there for. If you can't take care of yourself, or those under your care, what choice do you have?

I would hope that with your medical history, as extensive as it is, it would be a no brainer.

From what I have heard, and read, I would not hesitate, as it may be many months till any benefits come though.

If its that bad, a lawyer would be my choice to apply. It may hold more weight coming though one.

Hey guys, you gotta slow down a bit here. You can’t let your JOB or TN define who you are. Your job is what you do, it is not who you are. From my research I have seen that many, many people with TN can’t work or work full time. I hate that (I happen to love what I do and fight to continue working). I hate TN and what it does to us. We have every right to be upset, depressed, disappointed, discouraged, angry, pissed off, and a whole bunch of naughty words that Shindig could stick right in here. None of us should feel embarrassed to ask our drs for letters and forms re. applications for disability because 1) that is their JOB 2) we have all earned the privilege and my dear friends 3) we have suffered. Stand tall and be proud of who you are and what you have done to keep going with this horrible TN monster. Some days just to get out of bed and face the day or to make it back into bed at the end of the day is a major accomplishment that few others will ever understand. Take care!

I work as an educational assistant in a high school of about 1500 students. I went on long term disability when my meds were upped yet again late last fall. It was such a struggle for me to remain upright and present in the classroom. I struggled with word retrieval and memory lapses. When i was no longer an assest but a hindrance to my students I knew it was time to take a break. I will be off till I have recovered from MVD surgery which I hope to have in September. Trust your gut; you will know when it’s time. All the best. Peace

I was only diagnosed with TN 6 weeks ago... However it can be traced back almost 15 years.

This will sound kind of harsh I suppose, but I want to give it to you straight:

Apply immediately. It can take years to be approved. In the meantime you will be treated so differently; if you've had a fairly 'normal' life before, prepare to make peace with it, it's gone. I'm 52 and been on disability for 7 years. Was the breadwinner in my family for 25 years; then my brain started having these weird storms, went from 3 migraines a month to 3-4 a month, onset fibromyalgia and degenerative disc disease. Overnight went fron running an IT helpdesk center to not being able to do simple math.

It took 3 months to replace me at work and 3 people to take over what I did. Then the fight for disability began, not having a clue it was brutal. My first denial came a week before Christmas. My husband and I gave each other pictures of what we would get each other if we had any money, that's how broke we were. I had to cash out my IRA anyway since if you are on disability you can't have any assets; my second denial came the following summer. I had a lawyer that specialized in fibromyalgia and the 3 inch thick medical file I had was not enough (most doctors will discuss disability with you in general but don't want to get involved since they can be called to a hearing, so they won't sign anything legal.)

By the hearing it was the following April and we had already filed bankruptcy. In front of a judge I was asked two questions and he just looked around and asked why the heck he was there and why I had been kept waiting so long. Getting three years of backpay helped pay some back bills but wasn't enough to save the house, marriage, etc.

Now 3 years later I am in a public housing barbie sized apartment, make 30% below poverty but $100 too much for ANY assistance whatsoever. I do get medicare but have to pay for it of course, plus the additional prescription insurance, med bills, etc.

It took over a year to grieve my old life and accept the new one. Being alone for the first time in my life (the kids all moved to other states during those early years) has been tough to learn, especially cooking for one. Being social is hard.

I just started going back to college since I have done life coaching over the past several years helping people in trauma and find the most rewarding is working with people going through this type of change; there is just no real information for this type of situation, when it hits everyone goes on with their life and you feel forgotten. It's so important to find out as much as possible about what to expect, it will soften the blows since we already deal with so much.

Feel free to contact me if you would like any inforamation.


Thank you for your feedback - I can’t tell you how much I admire you and your bravery! Your story is indeed one to think about and to get started immediately with what needs to be done.
I’m still working for the next two weeks while a person is hired…then!..
I know my Lord will open a path for me as this one comes to a close…I pray the same for you!

Thanks Cris;

As I said, always feel free to contact me if you need info.

I just told a friend yesterday to stop fighting her path. God has a plan, and one of the biggest things I learned was to let go. They said when a door closes a window opens... I found that sometimes you have to look through the closed windows to find the open bathroom winow, but there is still one open if you keep believing, lol. Keeping faith and humor has been the best tool in the toolbox.


cris said:

Thank you for your feedback - I can't tell you how much I admire you and your bravery! Your story is indeed one to think about and to get started immediately with what needs to be done.
I'm still working for the next two weeks while a person is hired...then!...
I know my Lord will open a path for me as this one comes to a close...I pray the same for you!

Thank you everyone. I will be starting the SSDI process.

I cannot tolerate Lyrica, so going up on trileptal and now adding baclofen per my neuro. I'm already a zombie, so this should add to it.

Neuro doesn't think it'll work. I saw him yesterday; he's been treating me since the beginning and has always been very against the use of narcotics for TN. He said, give the new meds 2 weeks, if it has not improved dramatically, he will call in fentanyl patches. Wow.

I'm on FMLA from my part-time job, but I also have a contract job that is aware of the TN & probs. I just, with lots of tears, let him know that I cannot do it anymore.

this is where life has chosen to take me, so I need to follow. Pam

This is describing me as well. I have been on NYS Disability coming upon 26 weeks at the end of October, my FMLA has ended, in the process of gathering money to keep my house. Yesterday they finally awarded me Short Term Disability thru work and was told that before the end of the short term they would automatically submit me for long term disability since I was paying for it out of my pay, and that they were back paying me. Great this will save my house today. Then late yesterday afternoon they called back to say I was ineligible for the long term due to the fact that I hadn't been at the new job for at least one year, since I went out of work Jan 28th, and my one year was June 4th... Now they are once again doing a little research, I have not been out since Jan 28th, I went back to work on April 8th, worked in pain, confusion etc until July 3rd, when I broke down on the way to work and continued to cry until my husband could come and drive the car home. They have classified me as a recurring illness, and now they are not sure if I will get the long term. I asked the lady on the phone so your saying if I don't get long term on October 29th all payments stop, and I am going to be forced to go back to work or loss my job, she replied basically yes. Even thought my doctor has me out of work until I see him again on December 13 or something. So now lets just ad this to the stress level, that is why I only sleep about 4 hours a night. Anyone with any ideas out there?